UK protocols for treating PsA

General
1

Railing against the must 'plod through all DMARDS' first protocol, when first they invariably induce vomiting of which I have a significant phobia about. Spent a 24 hour period after first dose of methotrexate throwing up and seriously wished I was just dead instead. Secondly too much recent UK research says they're not optimum for PsA. Thirdly they take too frigging long to work. And lastly they make you have to give up alcohol and for some that means making significant lifestyle changes in addition with just coping with this horrendous disease. That makes me feel bullied, cornered, helpless and frankly treated in a most despicable way.

Any thoughts?

2

Agreed!

I admit I'm the sort of person who has a total nervous breakdown at the drop of a hat and then instantly turns into Little Miss Sunshine when things go my way. Therefore ploughing through DMARDs was probably worse for my family & friends than it was for me. But I didn't get side effects, heaven help them, and me, if I had.

Mind you, I was on DMARDs for years before starting Humira.

I didn't have that much experience of the health service before my PsA diagnosis, but I've had an awful lot since. How I now see the NHS is that for every indifferent, frustrating or downright counter-productive feature or encounter, it offers another that is impressive, reassuring and effective. (You'll gather that the sun is shining today). If you can hang on in there with the DMARDs then you have a good chance of advancing to GO i.e. starting biologics.

According to the guidelines, you should 'only' (I know!) have to try 2 DMARDs for 3 months each before being assessed for biologics. If you have a rheumy who abides by these guidelines then that is one big sunshine point. If you are not able to tolerate a DMARD then that should count as having 'failed' it, ideally.

Are you still getting nausea? Many here have switched to injectable Mtx when that happens as that's a way of bypassing the stomach. Drinking plenty of water regularly helps prevent side effects in general, too. I think that's pretty vital when on Mtx.

How long have you been putting up with this so far? If you can get past the Mtx the next DMARD might be a much easier ride.

3



Sybil said:

Agreed!

I admit I'm the sort of person who has a total nervous breakdown at the drop of a hat and then instantly turns into Little Miss Sunshine when things go my way. Therefore ploughing through DMARDs was probably worse for my family & friends than it was for me. But I didn't get side effects, heaven help them, and me, if I had.

Mind you, I was on DMARDs for years before starting Humira.

I didn't have that much experience of the health service before my PsA diagnosis, but I've had an awful lot since. How I now see the NHS is that for every indifferent, frustrating or downright counter-productive feature or encounter, it offers another that is impressive, reassuring and effective. (You'll gather that the sun is shining today). If you can hang on in there with the DMARDs then you have a good chance of advancing to GO i.e. starting biologics.

According to the guidelines, you should 'only' (I know!) have to try 2 DMARDs for 3 months each before being assessed for biologics. If you have a rheumy who abides by these guidelines then that is one big sunshine point. If you are not able to tolerate a DMARD then that should count as having 'failed' it, ideally.

Are you still getting nausea? Many here have switched to injectable Mtx when that happens as that's a way of bypassing the stomach. Drinking plenty of water regularly helps prevent side effects in general, too. I think that's pretty vital when on Mtx.

How long have you been putting up with this so far? If you can get past the Mtx the next DMARD might be a much easier ride.

4

Haven't a clue if what I wrote got posted but hope so even if my computer went funny and posted it too soon! But to continue.

It's MY LIFE, MY DISEASE, MY MENTAL HEALTH and MY LIFESTYLE. So I'm very determined it's only going to me who decides what affects any of those.The DMARDs (all of them) are contraindicated given potentially vomiting issues which I just can't tolerate. Diarrhoea I don't have a problem with, but vomiting seriously traumatises me. And I'm not in a place presently where I can add to my stress levels in giving up alcohol. I'm Irish and I do like my glasses of wine and given my present levels of disability there's not a lot of the other things that I used to enjoy doing that I can presently do at all.

I'm so angry at being bullied. I'm so angry that a bunion operation in October (very necessary as in not cosmetic) ignited this horrendous disease. And up to today I felt just so unbelievably defeated by this ridiculous protocol which didn't care two hoots about me and who and what type of a person I am.

So instead of filling my prescription for injections of methotrexate and bringing them to the clinic next week, I'm simply going to turn up and say 'no dice' to DMARDS. Happy to see mental health professionals to help you understand why and then see what happens. I'm bruising on steroids presently like poor Mohammad Ali came back to life and decided to give his last punch to me so obviously that's an issue that shouldn't continue too long. So I need to be otherwise enabled pronto as hands and feet, feet especially are seriously disabling presently.

Oh gosh thank you so so much for listening and letting me vent so. x

5

Well it'll be interesting to see what happens!

Incidentally, I too see a bunion operation as the main contender for a trigger factor. Mine was necessary too. Interestingly my rheumy seems to think that the severe bunion was PsA related .... so perhaps it's kind of like a chain of triggers, of which that one was the last straw.

6

MTX injections were better than the oral, and the folic acid pills helped some, but it was a miserable two years while I was on it. I started on Remicade infusions a year and a half ago, and I feel almost normal now!

7

But what I don't understand is why it has to be additionally miserable at all? It's miserable enough just having PsA but why then have medication and changes to one's lifestyle just make it more miserable? Simply just makes no sense to me.

Feeling I must be getting the beginnings of 'roid rage'. That's a joke by the way but sure feel I should do something sensible and coherent with this new found mental energy. I felt so defeated up today, just so defeated. This feels better. Far far better. It is my life, my disease and my lifestyle. It certainly isn't NICE's, the NHS's or my nice but presently virtually robotic rheumatologist's who appears to know nothing other than this protocol.

I on the other hand know shedloads about skin psoriasis, Keobler's syndrome and more importantly reverse Koebler's syndrome. If that 'works' for skin psoriasis, what does it do for psoriatic arthritis? So I shall educate him and his team and meanwhile continue to wish to be treated but only on my terms. So that will become his problem and certainly not mine. Onward already.

Anyone been treated at the National Rheumatic Hospital in Bath? It's just got a mega grant for further research into psoriatic arthritis.Google it. Very, very interesting indeed. Anyone read an article by Jim Morelli on Methotrexate treatment? Or one by Saketkoo on the same topic? Or yet another by Kang and Kavanaugh?



StephieK said:

MTX injections were better than the oral, and the folic acid pills helped some, but it was a miserable two years while I was on it. I started on Remicade infusions a year and a half ago, and I feel almost normal now!

8

Sometimes, Poo therapy, life just sucks. Having PsA at all does, and so do some of the hoops we have to jump through to play the NICE/NHS games on treatment. I can certainly attest to utter hair ripping out frustration sometimes but, as the saying goes, the only way out is through. When I'm feeling like that I just remember that actually we are very lucky. Our health care system and the medications are free at point of delivery. We make a very minor contribution in our taxes compared to the direct out of pocket costs many other members here have to pay for medical insurance to even get to see a doctor at community level let alone the multiple hoops they face to then get an insurance company to "approve" payment for medication .... and some people aren't even that lucky and have to muddle through with no treatment at all. No system is perfect by any means.

If you're not happy with your rheumatology care another gift the NHS bestows upon you is the 'right to choose' to see a specialist of your choice. It's easy, all you need to do is tell your GP what you want to do and ask him/her to refer you to your chosen consultant. I hope that you find your way through soon.

9

As a Canadian, I'd like to chime in here. I get what you are saying, Poo, and from some points of view (like yours), the UK protocol doesn't make sense at all. It does, however, make sense from a system cost perspective. You have the world's most universally accessible and affordable health care system. But, for cost containment, the NHS has a protocol which requires you to try every other avenue (even ones which have been shown to be not very good ones) before it will pay for the state-of-the-art treatment. If one of those works, good. If not, you may move on to the highly effective high priced therapy. Bottom line (simplified) : you try and fail three DMARDs and NHS delivers a biologic to your door.

In other parts of the world, biologic therapy is available only to those that can afford it, or who can afford to buy the right health insurance. In Canada, where we have so-called "universal health care", medications are not included in our government plan at all. We either have private drug coverage insurance, or we pay out of pocket for each prescription. My drug coverage has a cap that doesn't even start to cover my biologic. So I then had to apply for government assistance. But the government assistance plan has a co-pay. My out of pocket cost for my biologic therapy is $4500 (what's that, about GBP3,000?) per year. Oh, and before I could get on the government plan, I STILL had to fail three DMARDs.

I'm sorry you are feeling angry and cornered and bullied and imprisoned by the way the NHS is set up, but like Jules says, sometimes the only way out is through. And to quote Sybil, sometimes life just sucks. Don't we know it. And when it does, sometimes we just have to suck it up and get on with it.

10

Thank you both Jules and Sceenie. Wise thoughts and very wise words. Very much so. But.... Life always sucks, if that's how you feel about it at any given time. It's so relative always. Or in other words if you decide or choose to just 'feel' that. Or indeed decide or choose not to. Life never said it would be fair, it never said it would protect you from horrible issues. It never promised you that. Life just is as it is. It doesn't makes 'deals', it doesn't promise, it doesn't punish and nor does say or promise you're safe from harm. And it never discriminates. It just does as it does. I don't sit here and say 'why me'. The hand of fate or genetics or whatever couldn't give a fig about me at all. I'm irrelevant to that one, as all of us are. I could be magnanimous and say 'why not me' but that still presupposes fate, genetics or whatever actually cares. But it doesn't. Not at all. It simply has no DNA to even think that. (Sorry for italics too but I can't turn it off).

I am and probably just all of us are fortunate enough to only suffer this. Yes hugely fortunate. Yes truly seriously. It could be 20 thousand million times worse. We could be facing a prognosis that permits us just weeks, or just days or just hours or just minutes. Indeed our consequent and subsequent mental health issues could just do that anyway. But we're not or at least the majority of us aren't, facing that. What we do face and are facing is living with a seriously incapacitating chronic incurable disease. That's truly awfully and beyond our wildest dreams just effing well sucks. Disgustingly so. Doesn't it?

But.... I'm blessed with a more than a curious mind. I'm blessed with a decent education. I'm blessed with a professional life of over 30 years now that assesses real grown up medical research from exceptionally gifted and truly genius scientific talent. And I occasionally get to make binding judgements on that. Judgements that can change things too. What a privilege. Eh? And no I don't work for NICE or the NHS.

So whilst I may now literally whimper in pain for up to 3 or 4 hours of a morning, (tendon pain only, never joints although they can swell), and just feels like a cramp of such a magnitude that so often feels more than unbearable, and/or renders me incapable of doing anything than hum in exquisite pain, and then just sob awfully and then most so seriously wish.... (No one would ever know my experience of that one, only their own).

But I do have something that can make a difference. I can challenge coherently and with an ability to change things. I don't often lose incidentally. But wining isn't my motivation. Enabling is. Up to now it was to do with the enabling of others. It was to do with somehow harnessing the power of motivation and hope, as when we have hope we can just about to do anything at all. There are millions, several more millions that us PsA sufferers, who deal with so much worse than any of us do. Visit any Cancer or other type Hospice to find out. If you truly need to learn how to feel 'lucky' visit an end of the road paediatric one! Stay, chat, make friends and then just be there, all the way to the end. And while you're at it, visit a spinal injury rehab unit too. Or a facility for Motor Neuron Diseaase etc. If we ever need a 'reality check' there are seriously way more disabled people than us. Aren't there??? Yes. Really, really, really. Amazing isn't it? Annoying too.

So we're the walking wounded aren't we? Some more able to 'walk' than others. I have feet and hand issues. Too many times now I can't walk or just do. ANYTHING! Gosh. Seriously gosh. Up until last October my non professional life as in free time was about mucking out pigs for a charity for adult mentally disabled people whilst also being a tremendous tourist attraction; walking far, far from the maddening crowd; watching nature, studying nature and reveling in just being able to be that privileged to experience it. I'm a serious animal lover. Just taken on a new labrador puppy at the worst of my disability. I had no idea I would ever be this disabled when I decided to to take him on, but now guess I've got my PAT companion already. I also have two elderly cats. Between the three of them, I laugh presently every single day, despite my tears, despite my tantrums and even despite truly wishing I didn't have to live anymore. That last one is thankfully a whisper incidentally. Summarily dismissed by a puppy needing a poo in the garden.RIGHT THEN!

So yes I will rail against and improve our collective most cogent and most efficient results. Yes I will (but only if I need to) take on and even sue NICE or the NHS. I'm not at all perturbed or scared of that whatsoever. Professionally that can't scare me. Would truly prefer to not waste the time or energy on it but truly it's a mere inconvenience only. In the big scheme of things. If and only if needs be.

Yes, I will most certainly demand not just the best excellence but the best results that deal just with me. That then most hopefully deal just with each of us. I'm not a victim. I'm just me. I'm not sitting here saying 'poor me. I'm just sitting here, saying 'wake up world' this incredibly 'shitty' thing just dumped on me and by hook or by crook the world's incredibly and utterly amazing collective intellect and intelligence is going to make a difference to me, and others, as it has to. It says already it can do so, so hell, let's just have some of it. NOW! I'm 54 years of age and I've no time to waste.None of us do. We only have cogent lives to lead. Proper ones that enable us, that allows us to help others most of all.

I have serious job challenges coming up. I have just 4 weeks to keep my job.That means traveling 60 miles into London daily from 7am, taking 4 trains, 5 days a week. Presently I can't even take a shower before 11am. And that's with getting up at 5 am. I can't do the NICE protocol. It takes virtually 18 months. Recent research as in 2015 and 2016 says very persuasively that DMARDS don't 'do' or actually help psoriatic arthritis. I have also a serious phobia about vomiting. Before last Sunday on oral methotrexarte, I last threw up in July 1995. Due to a bad oyster. I've probably only ever vomited 11 times in my entire 54 years. All DMARDS warn of vomiting. Some worse than others. Last Sunday I vomited for 24 hours, straight. I'm lucky and the world hopefully is lucky I'm still here. Will share more about that 'journey' privately.

So I don't care a whit about funding within the NHS. It wastes so much money on its managers, its politics et al and just etc! Just alone. It also treated my Mum who was visiting from Ireland and it never thought to ask her Irish medical insurer to refund it for her rather expensive treatment. Her cover would have allowed that. I asked it too, it wouldn't. Shame on it for being so fiscally inept! She's now dead by the way! By the very condition it so ably first diagnosed. I've been a high earner (not now) and self employed in doing so, I've paid my dues. I and every other resident UK person who earns then also 'pays' for our global, exceptional medical excellence should also expect excellence. Our excellence. My whole professional life has been about enabling that excellence. And now I've even a bigger far more more important motivation.

Here are some things, every one of us should read:

'Treating spondylarthritis, including ankylosing sppondylitis and psoriatiric arthritis, to target: recommendations of an international task force. In the 'Annals of Rheumatic Disease. Written by Josef Smolen:

'The role of methotrexate in psoriatic arthritis: what is the evidence?' Written by M.H. Weisman and published in 2015..

'Methrotrexate treatment for Psoriatic Arthritis. Written by Jim Morelli. And on the Arthritis Foundation website.

And lastly 'Psoriatic arthritis: latest treatments and their place in therapy.' Written by Kang and Kavanaugh and published in 2015.

We have a duty, fellow psoriatic arthristis sufferers to get learning, get educated, get enabled and get our ourselves at our optimum best, always. We need to be courageous and forthright. Seriously so. We need to educate our medical professionals about us, individually most of all, our disease, but most of all just about us. But even more most of all, we need to collectively and individually choose treatments that have the best chance of enabling us. Just us.

I have a present mantra. It's this. 'It's my life, my disease and my body. And yet again just my life. Only I can live my life and frankly even my nearest and dearest can't live my life for me. I will utterly control what goes into my body and (for me anyway) control how it comes out.' I so realise how utterly privileged I am to know I can presently feel able to honour that. I hope beyond hope my present privilege and dare I say it courage, also enables others. Just to live the life we choose to. Sometimes we'll choose to be victims, sometimes life encourages us to be victims.But we can change that, We can choose. Whatever, there's zilch point in living a life that has significant disabilities without having hope. Without educating ourselves, without educating our medical professionals and without just being the intrinsically amazing people we can be.

Yes life can be a bitch. Yes life can be too challenging. But .... when we stop believing it's decided to target us as it can't anyway, well then we've choices. The most important one only is how we decide to react. Believe me in the last 6 months, I've cried like a baby. But this last week, a very disabling week too, I've decided that being a grown up just makes more sense.

So onward. Politely, respectively but always with the end goal in mind, which is and can only be the best capacity available with the least amount of harm. That's different for each of us, but please make sure yours works for you.

Gosh I so went off on one didn't I? It has though so helped, Thank you for reading. Thank you most of all for allowing me to share. And actually I'm rather proud of myself for not only having the courage to write it but also post it.

11

I'm sorry, really I am, for your pain and your challenges. Please don't think that many -- if any -- of us woke up achy one morning, went off to the doctor and came home with a PsA diagnosis. We have people here who struggled, like you are now, for years and even decades while doctors did their best to convince them that there was nothing wrong. We have people here who gave up hard-earned careers for methotrexate (one of our members is a professionally-trained sommelier). We have people who have lost everything because they could not afford the medication to treat this wretched disease. We have people here who would have gladly chosen cancer because it would have allowed them to either beat it or die. It's not easy, the road that fate has chosen for us.

Yes, we know about those studies, Poo, and so does NICE of course. The truth is, that some people do quite all right on the DMARDs. Is it the best treatment available? Not by a long chalk. But that's not how the rules are written. Perhaps lobbying for a change in protocol would be a good long term project for you, even if it doesn't get you out of your present predicament.

You are blessed, as you say, with intelligence, education, wit and ingenuity. Perhaps the quickest way through (with an eye to "out") is to work out what the most efficient and painless way of failing three DMARDs is. Just the job for a keen legal mind, I'd say.

12

I'm laughing Seenie. Thank you. That's precisely what I'm trying to work out. On a positive note, I did go to the doctor in January with these 'aches and pain' and came away with a diagnosis of at least inflammatory arthritis, which I 'fought' for two more months out of sheer terror before just having to accept it was right. I am incredibly fortunate in that. I do really know that.

Private medical insurance policies exclude 'experimental' treatment. In other words exclude anything but NICE guidelines on treatment protocols. So whilst I have such a policy, all it truly means is whether I wish to be seen in a carpeted consulting room or a lino covered consulting room. And I'm really not bothered which one it is.

But on a truly positive note, I've just woken up for the third morning in a row being relatively pain free and 'able'. I've no idea why that it is but I'm certainly going to take advantage of it. All I will say is that I've undergone a significant change in my mindset over these past 7 days. Reminds me of my quest for 'reverse Keobner's syndrome' in my teens when dealing with pretty severe all limbs covered skin psoriasis.

On that note what does anyone know about 'reverse Keobner's syndrome' for psoriatic arthritis? I'm utterly convinced my bunion operation ignited my PsA so is it possible to 'turn it off' with say taking the metal out of my foot? I know loads of people have to have surgery for this condition. Does the 'assault' of such surgery help?



Seenie said:

I'm sorry, really I am, for your pain and your challenges. Please don't think that many -- if any -- of us woke up achy one morning, went off to the doctor and came home with a PsA diagnosis. We have people here who struggled, like you are now, for years and even decades while doctors did their best to convince them that there was nothing wrong. We have people here who gave up hard-earned careers for methotrexate (one of our members is a professionally-trained sommelier). We have people who have lost everything because they could not afford the medication to treat this wretched disease. We have people here who would have gladly chosen cancer because it would have allowed them to either beat it or die. It's not easy, the road that fate has chosen for us.

Yes, we know about those studies, Poo, and so does NICE of course. The truth is, that some people do quite all right on the DMARDs. Is it the best treatment available? Not by a long chalk. But that's not how the rules are written. Perhaps lobbying for a change in protocol would be a good long term project for you, even if it doesn't get you out of your present predicament.

You are blessed, as you say, with intelligence, education, wit and ingenuity. Perhaps the quickest way through (with an eye to "out") is to work out what the most efficient and painless way of failing three DMARDs is. Just the job for a keen legal mind, I'd say.

13

Ok, so methotrexate pills made you vomit, badly, solidly for 24 hours .... so "no can do" going forward. Ring your rheumatology nurse tell her, ask to try the methotrexate injections. Remember you still need to drink plenty of water. Hopefully you'll feel ok on the injections and they will give you some symptomatic relief. I know someone with PsA who describes mtx as her wonder drug. So it can help. If the injections still cause you problems or don't help then call time again (quickly). One down, one to go.

Keep asking your rheumy "what's next if this doesn't work" .... I found that by making it really clear that my livelihood/own business depended on me being well it kept him focused on moving me on without delay. I am very drug sensitive but found leflunomide/Arava the most tolerable and most effective DMARD. When that also started to wane and I developed side-effects to an increased dose (itching, bruising, migraines, parathesia) it was two DMARDS down, biologics here I come. I still had to 'qualify' on numbers of tender and swollen joints but that wasn't a problem.

It can be side-effects you report, blood test irregularities or inefficacy that gets you moved from one DMARD to the next. Unless you spend a while on something that is working (in which case mission accomplished) this won't necessarily take forever ... not if you are on the phone to your rheumy nurse/rheumy and pushing the appointments forward.

I'm glad you've woken up feeling better again today.

14

Poo, as regards nausea, the solution to that may well be injectable Mtx. I know that's a 'small answer' not an all-encompassing one, but it may be a neat temporary answer nonetheless.

However what I'm particularly interested in is your questions about the triggers. I did have one rheumatologist who wondered whether getting the metal out of my foot would help. But if that were done I doubt I'd be able to walk & I'd probably be in agony. He was not an impressive rheumatologist, in fact he seemed downright crazy, so I paid little attention and found myself a very reasonable and able rheumy who has treated my disease to the best of his ability given the system and is a very caring doctor. But I do 'collect' any & all info. and ideas just in case, so his comment has stayed with me.

My PsA has taken a course that does not seem to be that usual. I am at the moment very well indeed. I have some damage but it is not disabling as such. But by the time I was diagnosed 4 years ago in was in an unholy mess, I'd lost a whole lot of weight, appeared to have aged considerably in a couple of years, had fevers and chills and couldn't physically stay awake for more than a few hours. That was in addition to the severely swollen and disabling state of my joints.

The most obvious reason for that onset (I'll use the word 'onset' but it was after 2+ years of swollen joints and at least 5 years of feeling increasingly unwell) would be that I have severe PsA. The most obvious reason for how well and active I am now would be that Humira is a great drug for me, a really great drug. I am of course quite willing to accept that in the circumstances!

However, looking back over my life I've realised that I showed signs of PsA at 16. At that time my left knee (always the worst one) swelled up big time. It was x-rayed but no cause was identified. After a few months the swelling subsided. I won't bore you by recounting all the times that in retrospect look distinctly PsA-ish. But the only pattern I can discern is that they correspond with a lot of physical and mental stress. I also had inverse psoriasis for about 10 years. It was not severe, but it was constant. And that went completely, pretty much overnight, at exactly the time I realised that a very difficult relationship was well & truly over. And it stayed gone for 20 years.

This time around my PsA coincided with the triple whammy of a very demanding job that I felt conflicted about, the bunion surgery and the menopause. The further I get from that time, the better I feel.

I am not aware of any extensive or convincing research into episodic PsA. Or indeed reverse koebner. We know it typically flares and calms down again and it would seem that some do go into long remission. I seem to recall that long remissions are more associated with young people though. However despite my age my rheumy has at times said that I seem to be close to remission and that we may be able to consider taking me off Humira at some point. I'm going to ask him what he currently thinks about this when I see him at the end of the month.

What I'm tentatively working up to is that personally I wonder whether my PsA is a type that flares as a result of physical and psychological stress, especially physical stress or 'assaults' as you say. And that it does indeed remiss (if that's a word) as those triggers recede in time. I don't think my very down to earth rheumy would engage with all that! He'd probably listen but without a body of research to back it up, I doubt he'd express a view. At the end of the day, PsA is treated pragmatically I think. I reckon he'll will ask himself whether the inflammatory response is 'just' very well controlled by Humira, or whether it is so low that my immune system could now be functioning normally enough on its own. Or he might think "Is that the time? I really want to get the hell out of here and spend some of my well-deserved salary down the pub."

Anyway, I will let you know what the outcome of that appointment is.

15

Poo,

For what it is worth, I completely get your anger and frustration. Like you I have a good job that I love and cherish, and I travel into London from the other side of the Thames Estuary to you. I was diagnosed in March with something I had never heard of, on the basis of some aches and pains in fingers and toes, and was rapidly presented with the prospect of taking a drug which was likely to ride roughshod through my life, root and branch.

The two DMARD rule is a disgrace. The approach seems to be to give us a drug that is known not to work, and that quite possibly will make us very ill. We are supposed to put up with this for six months, we may well lose our job and we may well lose our home. We'll probably get depressed as well but they like that because they can give us some more pills. Then when we are down and out, then they might actually give us the drugs we need to treat this horrible disease.

Financially this is crazy. The financial cost to the economy and to society of one of us being out of work, not paying our taxes, being on benefit instead of paying taxes, and of foreclosing on our mortgages if it gets really bad, is many times the cost of Humira. Not to mention the personal cost to each of us and our families, and what it costs our employers. It is myopic and narrow minded bean counting at its worst.

And it makes me mad when I try and work out how much tax I have paid over my lifetime.

I have been through the mill with this over the last couple of months, eventually deciding to decline MTX and monitor any progression, on the basis that mine is early stage.

If I have learnt anything, it is the importance of getting off the vicious circle of stress and frustration, and directing that energy into positive things. Stress, after all, inflames PSA. For me that has involved a new determination to look after myself. I am doing more exercise, following a mindfulness course and having counselling to reduce stress, and have cut down on the drink. It won't cure PSA but I'd be surprised if it does not help.

I have been through the alcohol thing. A good deal of my social life revolves around dinners and events where there is drinking, and I am from a family that likes and knows its fine wines. Like you, the time of the diagnosis was exactly the worst time for giving up or reducing it radically, and I railed against it with a passion.

I have actually done something really odd , in that having decided not to take the MTX, I've done the alcohol reduction anyway, and for the last five weeks have been pretty close to MTX compliant levels. It has been remarkably liberating, I have done it for myself, not because of all the medics (who probably drink like a fish) being sniffy with me about level of consumption and all the rest. Making the choice for oneself, not because of being told or forced to, is really empowering.

What I am trying to say is that after many dark days, I have eventually I have managed to channel all the emotions and energies that this has brought on into something that is very positive and which in truth has eluded me for years.

I've no idea how you would do this, but ultimately channelling all our energies to something positive is all we can do, as we can't change the system and we can't change the disease.

Just one other thing, I also get it re your phobia. I have a dental phobia, which at one point was acute, although is now under control having met a dentist who I trust and is prepared to use sedation. At its peak, it ended up with me, a grown sensible businessman, bolting from a dentists chair like a horse, running down the road and hiding behind Tesco Express's wall with the dental nurse and my ex wife in pursuit trying to find me and get me back in. When I speak to people about it, of course they always answer "oh I don't like the dentist either" And the minute they say such things you know they just don't get it. I don't like vomiting very much, no one does. I don't know what its like to have a phobia of vomiting, but believe me I now what it is like to have a phobia, and that must be really hard in the middle of PSA.

I am just hoping that a bit of agreeing and empathising helps you a bit.

Ian

16

You guys are just the best truly.Thank you. You’ve not only tacitly ‘approved’ my screechings you’ve also allowed me to feel that what I feel and how I’m thinking isn’t at all stupid And even better you’re encouraging me to use this huge force of unadulterated anger sensibly. Thank you for that from the bottom of my heart.

Stress and anything to do with psoriasis in my view and my experience the worst thing. For me the type of stress that renders me helpless and with no control is worse than any other type for just skin psoriasis.So I’ve spent virtually all of my adult working on that one. And I can’t think that I’ll ever stop working on that now that my psoriasis has decided to be come arthritic too. So that means being very careful and gentle with things like grief and loss as one has no control or choice over those. And indeed things like the menopause.

I am lucky I’m bolshy, pig headed, never afraid to ask questions, never afraid to say no and never afraid to confront. But there’s absolutely no point in doing any of that unless my motivation is coherently ethical. And not bratty, destructive or inherently selfish. So with you guys watching my back and hopefully me added to the collective back watching of all us, we have the checks and balances so necessary don’t we?

And Ian I so get your response to alcohol too. Someone tells you to give it up, and it doesn’t happen. But later your dear old brain says or rather whispers - go on then give a try and you discover it’s possible. It’s perversely glorious isn’t it??? Well done you.

I’ll keep you all informed as to where I get to this week. In the meantime, thank you, for listening to me, allowing me to share and the time and trouble all of you have taken to respond so. I’m blown away. In Kent the rain is stopping and the sun is peeking through. Time to take 12 week old puppy out for his next adventure. He and I have about the same stamina presently. What serendipity!



Ian3900 said:

Poo,

For what it is worth, I completely get your anger and frustration. Like you I have a good job that I love and cherish, and I travel into London from the other side of the Thames Estuary to you. I was diagnosed in March with something I had never heard of, on the basis of some aches and pains in fingers and toes, and was rapidly presented with the prospect of taking a drug which was likely to ride roughshod through my life, root and branch.

The two DMARD rule is a disgrace. The approach seems to be to give us a drug that is known not to work, and that quite possibly will make us very ill. We are supposed to put up with this for six months, we may well lose our job and we may well lose our home. We'll probably get depressed as well but they like that because they can give us some more pills. Then when we are down and out, then they might actually give us the drugs we need to treat this horrible disease.

Financially this is crazy. The financial cost to the economy and to society of one of us being out of work, not paying our taxes, being on benefit instead of paying taxes, and of foreclosing on our mortgages if it gets really bad, is many times the cost of Humira. Not to mention the personal cost to each of us and our families, and what it costs our employers. It is myopic and narrow minded bean counting at its worst.

And it makes me mad when I try and work out how much tax I have paid over my lifetime.

I have been through the mill with this over the last couple of months, eventually deciding to decline MTX and monitor any progression, on the basis that mine is early stage.

If I have learnt anything, it is the importance of getting off the vicious circle of stress and frustration, and directing that energy into positive things. Stress, after all, inflames PSA. For me that has involved a new determination to look after myself. I am doing more exercise, following a mindfulness course and having counselling to reduce stress, and have cut down on the drink. It won't cure PSA but I'd be surprised if it does not help.

I have been through the alcohol thing. A good deal of my social life revolves around dinners and events where there is drinking, and I am from a family that likes and knows its fine wines. Like you, the time of the diagnosis was exactly the worst time for giving up or reducing it radically, and I railed against it with a passion.

I have actually done something really odd , in that having decided not to take the MTX, I've done the alcohol reduction anyway, and for the last five weeks have been pretty close to MTX compliant levels. It has been remarkably liberating, I have done it for myself, not because of all the medics (who probably drink like a fish) being sniffy with me about level of consumption and all the rest. Making the choice for oneself, not because of being told or forced to, is really empowering.

What I am trying to say is that after many dark days, I have eventually I have managed to channel all the emotions and energies that this has brought on into something that is very positive and which in truth has eluded me for years.

I've no idea how you would do this, but ultimately channelling all our energies to something positive is all we can do, as we can't change the system and we can't change the disease.

Just one other thing, I also get it re your phobia. I have a dental phobia, which at one point was acute, although is now under control having met a dentist who I trust and is prepared to use sedation. At its peak, it ended up with me, a grown sensible businessman, bolting from a dentists chair like a horse, running down the road and hiding behind Tesco Express's wall with the dental nurse and my ex wife in pursuit trying to find me and get me back in. When I speak to people about it, of course they always answer "oh I don't like the dentist either" And the minute they say such things you know they just don't get it. I don't like vomiting very much, no one does. I don't know what its like to have a phobia of vomiting, but believe me I now what it is like to have a phobia, and that must be really hard in the middle of PSA.

I am just hoping that a bit of agreeing and empathising helps you a bit.

Ian

17

Of course we let people "vent" here! As long as the venting member isn't shooting themselves in the foot, or hurting others, we're good with that. But always, we hope that at the end of the day the anger will be channelled into productive action that will help the member deal better with this dastardly disease. (And it is a horrendous affliction with effects that can poison every part of a person's existence.) Glad you're getting there, Poo!

Ian's post on your thread is particularly touching for me, because its tone and organization demonstrate to me that he really is taking steps to cope, and thinking ahead to the day when he may need more intensive medical intervention for his PsA. Ian, well done my friend. And then to have him assume a supportive stance towards Poo, well, that is our ultimate goal: peers getting and giving mutual support.

As you can imagine, some of us spend far too many hours volunteering on Ben's Friends. (And a couple of us here volunteer on the larger network as well.) We don't expect thanks, but when someone takes a minute to share a bit of gratitude, it means the world to us. It really does. Thank YOU.

18

Well I hate to add fuel to an already raging fire. I'm very familiar with the "DMARD Studies" So let me blunt. They are not only bad studies but are in a vacuum. Few folks even on a Biologic are NOT taking a DMARD in addition. There are a few reasons for this but primary is the DMARDs allow the biologics to work longer and more effectively especially the "good ones" They prevent the formation of antibodies. While biologics are effective for axial disease, they are not effective for peripheral symptoms. The AS and similar studies concentrated on axial symptoms and ignored the peripheral issues. They also ignored peripheral symptoms. MANY patients do receive a great amount of relief from the DMARDs as there are a number of symptoms aggravated by PsA that are relieved by DMARDs.

Incidentally the treatment protocol is NOT a figment of the NHS imagination but is pretty much universal. It was determined by several international bodies of rheumatologists based on MANY studies and years of experience. While we all want "instant results" that just doesn't happen in this world. There are no silver bullets for PsA. That's why a careful protocol is followed. At the best any medication is only effective 40% - 60% effective and take 3 mos or more to show effect. That doesn't mean you are left holding the bag. There are short term solutions for a number of issues including steroids and site injections.

Here is a great place to rant, but let me give you a word or two of advice. There are many more patients than doctors. The docs can be (and are) selective. Keep the rant here, and an open mind there and work on a partnership. Spend less time with Dr. Google and more time with your team and building that team. It is highly unlikely for a person to have the reaction to a single dose of MTX that you describe. Stress, fear and worry can do it, but there simply isn't enough MTX in your blood steam to cause a 24 hour reaction. Just about everything you read about MTX is based on it being used for other treatments in doses 100 times greater than what you received, The internet has had a strange way of weaving a very untrue picture of the low dose use of MTX. Its less "matter" and more "mind" Certainly there is a reaction to this very strong medicine which is why I take mine early sat. evening. I'm good to go by Mon.

Yes you do have to make some lifestyle adjustments when on any of the meds. They are nothing compared to the lifestyle adjustments one is forced in to making by untreated disease, and I do mean nothing.

Auto immune disease NEVER exists in a vacuum. If you have one, you have bits and piece of others. That's why you have to read "studies" with a pound of salt. They choose x number of symptoms to study from a carefully selected group (cohort) who essentially have only those symptoms. They are a test of the drugs effect on JUST those symptoms, NOT on what the general group of patients is experiencing. So MTX doesn't have an effect on spinal symptoms for PsA patients. BIG DEAL. Only 20% or so of PsA patients primarily have spinal symptoms anyway. The study you referred to didn't say squat about ankles or knees. Don't confuse self advocacy for self diagnoses.

I was lucky in that I got biologics pretty quickly after formal diagnoses (I spent some time in a wheel chair before that with spinal symptoms) I was even luckier that I had a profession that allowed me to pay the $20,000.00 USD that the medication cost me.

BTW Poo, something in your last post rang bells. Whether or not you are in menopause or just "getting ready" That period in your life makes puberty look like a walk in the park. PLEASE get with your gyno and work on some step therapy (hormones) There is no bugger fuel to PsA than fluctuating hormones. That can be helped and may actually help mitigate the effects of medication (its a hormone burst that makes one vomit BTW) AND listen to Ian, he is indeed wise. Don't deed your own disease.

1 Like
19

Thanks tntlamb. Thankfully due to the good folk on here, my raging fire was short lived and resolutely quenched and transformed into a far more positive attitude.

I'm very aware of how medical research is conducted and debated.I'm very aware of its checks and balances and the rigours of how such studies get published and reviewed. How they get funded and what that means. I have worked in the medical world as lawyer for most of my professional life. I also understand how to work with all sorts of medical professionals as in building and leading a team and more importantly being a team member. I do have an excellent relationship with my rheumatologist. It's based on mutual professional respect. What I was railing about was the protocol itself and not necessarily the individuals administering it. I was questioning the validity of that. I was doing that primarily as it seemed to me that given it had been used for so long now, was it not sort of 'stuck' in its complacency? Was it not a little too 'comfortable' with itself? Was it too risk adverse? I remain of the view that it is many of those things. And thankfully I remain of the view that shaking things up whilst always risky can throw out pieces of genius that just transforms things.

There is simply fascinating research going on presently world wide into the drugs that can help us. Look up any of the patent wars going on to see. I've a sister who works in that world, as a lawyer too. It's truly interesting. If not also perfectly terrifying if you're a patient and a new one too. Being just a patient, or sadly becoming a patient doesn't mean my intelligence, experience and education is suddenly rendered redundant. It simply means I can use all of it to further improve things, once I get a handle on the pure emotion that naturally follows such a diagnosis.That's the same for all of us, surely?

I can tell you too that I have a proper honest to God phobia of vomiting. That means I simply don't 'do' it, even if I've food poisoning. So a 24 hour bout of throwing up after one dose of mxt is odd. If I can sit with food poisoning for hours waiting for it come out the other end, why was I forced to throw up on mxt? I find it odd too that in the little piece of paper that came with it, it listed that first as side effect. They list the most likely side effects first. They have to as it's the law.

Lastly I'm about 7 years into my menopause. I never saw the point of medicating it at any stage. It is after all a normal process.I was or am lucky. I simply get too hot at times, sometimes embarrassingly, I don't sleep that well as a consequence and probably have more exercise in bed than outside with all the tossing and turning! Both though are incredibly minor inconveniences. I'm also probably more emotional but I find tears to be a positive outlet. I would guess I'm now well on my way to coming out of the other side of the menopause now. And certainly for me medicating it wouldn't feel right.

If any hormone has a negative effect, it's cortisol and not decreasing levels of oestrogen. Cortisol is released when we're scared. So for me anything that makes me less scared is always positive. Psoriasis is 'interesting'. I'm firmly of the view that its best food is fear and the stress that comes from fear. The stress borne out of feeling helpless, trapped and not in control. Certainly getting a decent handle on that as teenager and in my early 20's was magical in controlling my skin psoriasis. I consider that my psoriasis has ignited itself again but this time in the manifestation of inflammation. But essentially what I'm dealing with is 'just' psoriasis. Yet again. Putting it back in that box for me is liberating. It lessens the fear factor and so emotionally re-enables me. Considerably. I know that box well and I know with incredible hard work I can deal with it, whatever medications I take or don't take to help me.

I am enormously grateful that by spouting out on here in the manner that I did and indeed was allowed to, I sorted out my thoughts and more especially didn't suppress my emotions, which often can be so dangerous to stress levels. Without that it was likely I would have struggled stupidly on for too long in the wrong frame of mind. I am after all just like all of us, simply human. I'm truly sorry if I've unwittingly upset anyone. I've been as careful as I can be not to criticise anyone else's methods or thoughts but simply to express my own thoughts.

And yes again thank you and indeed everyone else for taking the time and trouble to respond to me. It's been so wonderful.



tntlamb said:

Well I hate to add fuel to an already raging fire. I'm very familiar with the "DMARD Studies" So let me blunt. They are not only bad studies but are in a vacuum. Few folks even on a Biologic are NOT taking a DMARD in addition. There are a few reasons for this but primary is the DMARDs allow the biologics to work longer and more effectively especially the "good ones" They prevent the formation of antibodies. While biologics are effective for axial disease, they are not effective for peripheral symptoms. The AS and similar studies concentrated on axial symptoms and ignored the peripheral issues. They also ignored peripheral symptoms. MANY patients do receive a great amount of relief from the DMARDs as there are a number of symptoms aggravated by PsA that are relieved by DMARDs.

Incidentally the treatment protocol is NOT a figment of the NHS imagination but is pretty much universal. It was determined by several international bodies of rheumatologists based on MANY studies and years of experience. While we all want "instant results" that just doesn't happen in this world. There are no silver bullets for PsA. That's why a careful protocol is followed. At the best any medication is only effective 40% - 60% effective and take 3 mos or more to show effect. That doesn't mean you are left holding the bag. There are short term solutions for a number of issues including steroids and site injections.

Here is a great place to rant, but let me give you a word or two of advice. There are many more patients than doctors. The docs can be (and are) selective. Keep the rant here, and an open mind there and work on a partnership. Spend less time with Dr. Google and more time with your team and building that team. It is highly unlikely for a person to have the reaction to a single dose of MTX that you describe. Stress, fear and worry can do it, but there simply isn't enough MTX in your blood steam to cause a 24 hour reaction. Just about everything you read about MTX is based on it being used for other treatments in doses 100 times greater than what you received, The internet has had a strange way of weaving a very untrue picture of the low dose use of MTX. Its less "matter" and more "mind" Certainly there is a reaction to this very strong medicine which is why I take mine early sat. evening. I'm good to go by Mon.

Yes you do have to make some lifestyle adjustments when on any of the meds. They are nothing compared to the lifestyle adjustments one is forced in to making by untreated disease, and I do mean nothing.

Auto immune disease NEVER exists in a vacuum. If you have one, you have bits and piece of others. That's why you have to read "studies" with a pound of salt. They choose x number of symptoms to study from a carefully selected group (cohort) who essentially have only those symptoms. They are a test of the drugs effect on JUST those symptoms, NOT on what the general group of patients is experiencing. So MTX doesn't have an effect on spinal symptoms for PsA patients. BIG DEAL. Only 20% or so of PsA patients primarily have spinal symptoms anyway. The study you referred to didn't say squat about ankles or knees. Don't confuse self advocacy for self diagnoses.

I was lucky in that I got biologics pretty quickly after formal diagnoses (I spent some time in a wheel chair before that with spinal symptoms) I was even luckier that I had a profession that allowed me to pay the $20,000.00 USD that the medication cost me.

BTW Poo, something in your last post rang bells. Whether or not you are in menopause or just "getting ready" That period in your life makes puberty look like a walk in the park. PLEASE get with your gyno and work on some step therapy (hormones) There is no bugger fuel to PsA than fluctuating hormones. That can be helped and may actually help mitigate the effects of medication (its a hormone burst that makes one vomit BTW) AND listen to Ian, he is indeed wise. Don't deed your own disease.

20

Absolutely Poo

Spot On ! the way I feel about it. I tried the MTX pills for a month and just so wickedly sick... along with everything else , just a tad much for me. I have been staying with some kind friends , who took me in over a year ago because I had gotten so ill could properly maintain.I am having to move back to my house this next month ... high maintenance kinda place... there will be alot of work to get set back up there.. and many other things to deal with ... i just cant be that sick right now.

So I am really up in the air on this one... atleast my Dermatologist wants to get me on a Bio... I will read on here and learn ... but I am very adamant about not wanting the MTX, atleast , right now... Do Hope you Well with Smiles today