UK protocols for treating PsA

Hi Poo therapy. I just want to tell you I totally understand where you're coming from. I've been plagued with a phobia of throwing up since I was a small child, and finally, after about 50 years of wondering why, I decided it all started in my subconscious when my appendix ruptured at 15 months old and it was a life or death situation that before diagnosis involved a lot of throwing up. You'd think we'd grow out of such an irrational fear, but over the years I've met several others with the same or other phobias that I can't relate to. So, whatever.

I sympathize with you about not wanting to take MTX. I also refused it. I'm afraid of things that could harm my liver. I sort of envy people who don't have all those fears. Actually, my fear of statins probably resulted in my having a 90% blockage in my right coronary artery and near heart attack last week! So now I have to take a statin, among other pills I normally wouldn't agree to take, to prevent further blockages.

No need to fear the biologics. I was sooooooo afraid of them! Now I have a love affair going on with my Enbrel. Just kind of concerned after what tntlamb said about MTX helping the biologic work longer. I dread the day Enbrel stops working for me! Then I'll probably be mad at myself for not sucking it up and swallowing MTX!!!

I know how I'd handle the two DMARD thing *wink* but I don't live in the UK so maybe I wouldn't get away with that. Here in the U.S. I'm not sure if we HAVE to take two DMARDS. I refused meds for several years--my PsA was slow progressing for several years and suddenly it went crazy. By that time, rheumy had offered and I had refused whatever nsaids and DMARDS they typically start with, and my insurance I'm sure knew I'd been diagnosed for 6 years--plenty long enough to qualify for a biologic. They saved tons of $ me not treating it for 6 years!

We all have our own battles and successes with our personal PsA adventures. And, you're right--it's definitely not the worst thing in the world (for most of us). I know there are some extreme cases, but a lot of us seem to be doing pretty well on our meds.

Good luck to you! You will figure it out--you will feel better!

Knightsong, in your shoes I'd give injectable Mtx a try and jump at the biologic. Because if injecting Mtx does sort the sickness & you can start a bio quickly, you'd have what certainly seems to be the best combo. The key word is quickly, ASAP, pronto. All right, 3 words. Also, if the Mtx is doing anything at all for your PsA then at least you'd have some continuity while waiting for the bio to kick in, which can take up to a few months. Is there any way you could get a script for the injectable Mtx with all haste, just to give it a try?

You're certainly up against it. I would not be able to handle the sickness on top of everything else either so I'm not recommending toughing it out ad infinitum. Simple H2O .... magic stuff with Mtx, are you drinking enough of that? A couple of litres a day is required I believe. And your derm's recommendation of Humira, can you make that happen fast?

I've moved house, now renovating our new one. Fun at the best of times, a very gruelling form of 'fun' at others. I had to have a health check with the nurse practitioner at the new GP centre. I told myself 'lay it on the line about the PsA, lay it on the line'. And what did I end up saying? "I'm fine!" Fortunately I had already managed to convey to the GP the maximum amount of polite, cooperative, total flaming urgency about being referred to a new rheumy straight away. Speed is of the essence and conveying the need for that and constantly moving things on is quite an art I reckon.

Knightsong said:

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

Gosh! I sort of thought this discussion had been lost in the ether as in time passing. I remain horrified and terrified of mxt. Still. I canā€™t find any research that shows it actually makes a difference to PsA. Everything I read says thereā€™s little or no cogent evidence it helps, yet rather irrationally then says it must be the first line defence.

I canā€™t find any rational coherent reason for that other than the weight of out of date protocols. As a medical lawyer I find the insistence on it somewhat bizarre, frankly. But Iā€™m utterly open to be persuaded otherwise. But please with rational cogent evidence that makes sense.

I think tntlamb already did that! It seems you have made your choice that you are not prepared to follow the dictate of NICE or the nhs guidelines, therefore you will be unlikely to qualify for a biologic. My sister chose the same route - she is now waiting for two knee replacements and her hands are completely deformed - but she is afraid of mtx. Mtx helped me 40% with my symptoms. Humira has improved it maybe another 35-40%. Humira without mtx for me is not effective and to be honest if I had to give one up, it would be humira! Not rational cogent evidence but my experience ā€¦

We have also welcomed a new UK member here today, who I hope will post his story in his own time, but to summarise his experience of 20 years of methotrexate

which has been amazing .....

Only after all this time has its benefits started to wane and treatment needed to be escalated. I believe there are far more people who have THIS experience than we see here. Why? Because they are getting on with their lives not sitting in behind their keyboards and visiting online forums and Dr Google. I LOVE IT when we hear ANY treatment has given someone such a positive outcome for so long.

Iā€™m always searching for experiences like this but rarely find them. Hence my angst.

Thing is, on a forum like this our own experiences are evidence. We're lucky to have tntlamb who can refer to research based evidence with confidence but most of us can only contribute our own bits & pieces of personal evidence as grist for your mill.

I'm in transit just now, don't have my books with me or a reliable internet connection. However I recall that the Gladman & Chandra book, 'Psoriatic Arthritis', does discuss Mtx. Think it's around page 116. The world class Toronto Clinic in which both the authors are based I believe, does prescribe Mtx. Yet they're very honest about the current state of research and imply that scientifically the jury's out on whether or not Mtx slows progression of the disease (or that's how I read it) but that rheumatologists the world over continue to use Mtx because it does seem to help, often considerably.

Honestly Poo, by the time I got diagnosed I was physically in such a big mess I wondered whether the strong drugs would just finish me off. But Mtx got me up & going again. 4 years down the line I had a liver scan which showed my liver to be in good nick. And I don't get side effects, not even the day after taking it. That is so not everyone's experience but it's a 'try it and see' type of recommendation. Apologies if I'm repeating myself, like I say, just about got a connection & so haven't carefully read back over other responses I've made to you.

You mentioned alcohol .... reluctance to limit your consumption. That's a tough one. But (again just one bod's experience) increasingly I find that alcohol affects me badly. I can enjoy 2 glasses of wine without ill effect but any more and the next day is grim. I think others here might agree that PsA responds fairly well to a boringly exemplary lifestyle. I compromise. I'd love a full-on night out but there again the last 3 weeks I've spent 7 days a week doing hard labour. And I can't tell you how amazing that feels when 4 years ago I couldn't walk more than a few steps without screaming. I'm hoping you'll get started on treatment and proceed towards biologics ..... just don't know what else to say.

So get what you're saying Sybil. I struggle with being a lawyer and always needing coherent evidence which I can see is tested and and and. I get scared probably stupidly by just how many decent and serious medics vacillate between saying it does good but and also the big 'but' that the jury is out etc. etc. I know it actually is safer than many too but. I'm still at the temper tantrum stage of being diagnosed and just rail against yet more life changes, more waiting, more everything. I didn't have a good experience taking the tabs. Whether that was real, psychosomatic or a mixture of both I truly don't know but it was grim. I doubt the throwing up was just emotional as it's such a huge phobia of mine. I know I could bypass potentially lots of that by taking it by injection if indeed my experience was real as in physical and not emotional. But us humans are emotional however much we think we control them, we often don't.

I'm lucky presently in the big schemes of things my symptoms are milder than many others' are. They are however dreadful to me of course. I am trying something else presently about which I'm cautiously optimistic. Early days yet and I'll post about it when I'm far more sure of it either negatively or hopefully positively.

But can I say I just love you guys for being so caring, so responsive, so full of positive stuff and just so nice to connect to. x

Sybil said:

Thing is, on a forum like this our own experiences are evidence. We're lucky to have tntlamb who can refer to research based evidence with confidence but most of us can only contribute our own bits & pieces of personal evidence as grist for your mill.

I'm in transit just now, don't have my books with me or a reliable internet connection. However I recall that the Gladman & Chandra book, 'Psoriatic Arthritis', does discuss Mtx. Think it's around page 116. The world class Toronto Clinic in which both the authors are based I believe, does prescribe Mtx. Yet they're very honest about the current state of research and imply that scientifically the jury's out on whether or not Mtx slows progression of the disease (or that's how I read it) but that rheumatologists the world over continue to use Mtx because it does seem to help, often considerably.

Honestly Poo, by the time I got diagnosed I was physically in such a big mess I wondered whether the strong drugs would just finish me off. But Mtx got me up & going again. 4 years down the line I had a liver scan which showed my liver to be in good nick. And I don't get side effects, not even the day after taking it. That is so not everyone's experience but it's a 'try it and see' type of recommendation. Apologies if I'm repeating myself, like I say, just about got a connection & so haven't carefully read back over other responses I've made to you.

You mentioned alcohol .... reluctance to limit your consumption. That's a tough one. But (again just one bod's experience) increasingly I find that alcohol affects me badly. I can enjoy 2 glasses of wine without ill effect but any more and the next day is grim. I think others here might agree that PsA responds fairly well to a boringly exemplary lifestyle. I compromise. I'd love a full-on night out but there again the last 3 weeks I've spent 7 days a week doing hard labour. And I can't tell you how amazing that feels when 4 years ago I couldn't walk more than a few steps without screaming. I'm hoping you'll get started on treatment and proceed towards biologics ..... just don't know what else to say.

We love you and your interesting, thoughtful, challenging posts as well, Poo!

Poo therapy said:

But can I say I just love you guys for being so caring, so responsive, so full of positive stuff and just so nice to connect to. x

Need to do a smiley face for that one Seenie! Thank you.

Seenie said:

We love you and your interesting, thoughtful, challenging posts as well, Poo!

Poo therapy said:

But can I say I just love you guys for being so caring, so responsive, so full of positive stuff and just so nice to connect to. x

Oh, just wait, Poo! When this site migrates to the new platform, we will have smiley faces galore! LOL

Apologies for having only skim-read this thread, as thereā€™s rather a lot of it, but I hope my own experience might be of use. Poo said a couple of months ago on this thread that it was their life, disease, mental health etc - and I feel/felt exactly the same way. I have bipolar as well as PsA, and found myself falling to bits at the beginning of last year just after I was diagnosed. I had a less than sympathetic registrar at the hospital, who frankly was rude and unsympathetic, refused to answer any questions etc (and this was just as I was being diagnosed with PsA). I was put on Sulfasalazine, which didnā€™t give me any side effects from a gastric point of view, but there were various other issues to do with lymph glands and severe skin infections that made me come off them. In case it was just a coincidence(!) I was told to try it again - and the same thing happened. By this time, my bipolar was through the roof - not helped by the general anxiety of being on the meds and the constant blood tests etc. I was told to take Luflunomide, and I flushed them down the loo. I simply couldnā€™t cope with taking/trying those meds again, with those endless tests, at that point and I basically ran away from all doctors for a period of about five months.

My arthritis spread like wildfire during that period, but I needed to get some form of mental health back. I requested a change of registrar and got one. Then I wrote a rather long letter to them about six weeks before my next appt and basically told them what the situation was, and that it was no good controlling the arthritis if I then landed up in the local loony bin. I needed to be treated as a whole, not like a car that had three disparate things wrong with it in an MOT. So, to cut a long story a little bit shorter, I got a reply back saying that discussions would be had before my appt and I would be given options. They were true to their word, and I ended up on Hydroxychloroquine. I know that this isnā€™t really strong enough for my arthritis, but it has stopped it spreading further, and I guess the fact I havenā€™t needed a steroid injection in a year means itā€™s having some effect on pain too. My inflammation blood test fell after the first six months from 107 to 57. Not as low as it could or should be, but obviously much better.

Being able to tread water with the arthritis has allowed me to get my mental health back on track, by and large. I cant work because of the PsA, but I have managed to move house and remained relative sane through that, which was difficult, although I did have a setback with the bipolar about a month ago, but am slowly climbing back out of that hole. My next appt at the hospital is in November, and I plan to discuss treatment with them then. I know that the hydroxychloroquine isnā€™t effective enough for me to lead a normal life (or anything like it), and that, like Poo, the other DMARDs are likely to send my mental health down the drain. I am hoping against hope that they offer me the chance of a biologic, which I would then ask them to try me on after Christmas.

I may not win that argument, but I think that, by letting them know through the letter, just how bad my mental health can be, at least they can weigh things up with the knowledge they need to. That approach might not work for everyone, and mental health treatment sucks in the UK at the moment - but that kind of approach might be worth trying. Thereā€™s certainly nothing to lose from it. But I think there comes a time when we really have to make such a damned nuisance of ourselves that they find it easier to cave in and treat as a whole person and not a knee or an ankle!

Again, apologies for only skimming the thread, but hopefully some of that might be of use. best wishes

I had the unfortunate experience of teaching a couple semesters in the law school. I thought Iā€™d enjoy it after years of student docs. BOY was I wrong. Trying to get those guys to look OBJECTIVLEY at evidence was like pulling teeth (granted it was statistics). They were so darn cynical it drove me nuts. High School debaters that never grew upā€¦ Now Iā€™m not accusing you @Poo_therapy of being like those several hundred lawyers (well how ever how many of them passed the bar) but across the 30 or communities we have on B, we have everyday complaints of ā€œDocs who donā€™t get itā€ and that certainly can be true sometimes but more often than not its a patient who isnā€™t hearing what they want from the doc or still hoping for an instant answer. We have two seperate group despite overwhelming evidence a particular surgical procedure wonā€™t help their issue seek out ā€œspecialistsā€ who offer elective brain surgery. Where it get wierd is while they are complaining it didnā€™t work for them has cuased worse problems, they are encouraging others to go for it because it MIGHT help them. All because they have ā€œheardā€ it helps.

Now when it comes to PsA, its nearly impossible to define a cohort for research We have 4 types (likley more) that have completely different manifestations not to mention co existing conditions. While the biologics are great, their measure of effectiveness is in the axial skeleton and actual psoriasis. In fact that is pretty much the home of all seronegative aropathies od which PsA is only one. Treating peripheral symptoms is a different matter entirely

My point is there is so much criss-crossing in autoimmune diseases the evidence you want simply doesnā€™t exist. WHAT does exist however is that an experienced (or observant) physician can put the pieces together and start where and with what he thinks fits the situation (medicine isnā€™t all scienceā€¦) The protocols are not put together by bureaucrats (just enforced to excess by them) but practicing physicians. These are based on what works the most often for them.

Good luck and hang in there

Thank you Tntlamb. You made me smile. Lawyers canā€™t do stats. Or at least this lawyer canā€™t. But I know Iā€™m not the only one, by a very long shot. Stats though, evidentially can always be manipulated to suits oneā€™s own ā€˜debateā€™. Sadly. So even if Iā€™ve no idea how the figures are worked out Iā€™ve won a case or several on just stats. Even more sadly frankly.

But I get what youā€™re saying. Utterly. And thank you.

What Iā€™ve discovered and what youā€™re saying is simply this. There isnā€™t yet enough cogent research on what works for PsA. If indeed weā€™re all suffering the same disease anyway. Weā€™re still so much at the beginnings of treating it cogently. That I certainly believe. Yes thereā€™s lots that help and calm symptoms butā€¦thereā€™s still no true idea of how to treat it. Hence my ire at protocols that arenā€™t proven, statistically or otherwise, to truly work. As, you so rightly say, we just donā€™t know yet.

I went to my rheumatologist last week. Tried to tell him for the upmteenth time I donā€™t suffer significant joint issues but tendon issues instead. And huge fatigue issues. Told him my feet are the barometer. But actually itā€™s really tendon issues that incapacitate me. As in Iā€™ve had pain like daggers in both my bum cheeks, since I last him in June which necessitated osteopathic treatment. He looked at my hands and said I was fine. I havenā€™t complained about my hands since I first saw him in March. My hands presently and so for some significant time at least from May, are fine. Iā€™ve repeatedly told him that too. Iā€™ve got the beginnings of trigger finger which has settled into a nodule thatā€™s doing nothing presently other than just being there. Heā€™s never physically examined me, actually. Heā€™s a nice guy. We have fascinating intellectual debates. I might get seduced by that too. But until your post tonight, I didnā€™t think to question him that much about the rest. Now I will.

But Iā€™m doing something else presently. A homeopathic treatment, presently only available in Ireland called the Collinā€™s Treatment. Traveling to Dublin once a month for the day. Iā€™ve certainly had several days and now nearly several weeks of relief as a result. Or so I believe. I still have my stupid job issues and so I know my stress levels are also through the roof. But my gut tells me itā€™s helping. I still take a 5mg steroid once every second day or sometimes once a day and some Naproxen when needed. But I have more days than not now of being able to walk two hours in the woods on rough terrain. That to me is bliss and indeed so aids my sanity.

So Iā€™m either going through a remission or starting to. Or the Collinā€™s Treatment is helping. Or potentially I donā€™t have psoriatic arthritis anyway since no coherent tests show that. Or maybe I just have palindromic arthritis, like my rheumatologist initially said. But does palindromic present just like the classic swollen digit stuff of psoriatic arthritis? I donā€™t think so.

But whatever. We, our medics, and the rest, as you said, simply donā€™t know enough. So if we donā€™t collectively know enough, well then why the protocol? Certainly many are helped by it. But certainly too, far too many arenā€™t. Certainly too, too many suffer side effects that make it too difficult. Certainly too in my world at any rate the research is significantly divided on its helpfulness for PsA. So why on earth now, in todayā€™s world, is this protocol still worth this slavish adherence to it.

That begs another question. Why is rheumatology so idiotically imprecise still? Or rather why is a total autoimmune response (like it seems Iā€™ve suffered and like I guess many of us suffer) still so utterly poorly understood so that its pathway canā€™t be medically mapped and even identified coherently?

Years ago I was a defendant lawyer for mass work related upper limb disorders claims. It was fashionable in those days especially in factories or when we all started typing on computers, lots. I chose experts who were hand surgeons. The claimants or rather their lawyers chose experts who were rheumatologists. The hand surgeons won given their evidence. The rheumatologists didnā€™t as they simply had no evidence. They still donā€™t, sadly. Some of those claimants might have had PsA. Who on earth knows?

Thereā€™s still little coherent evidence of PsA. Certainly I exhibit little other than anecdotal stuff. No test, blood or otherwise shows Iā€™ve PsA. Iā€™ve slightly raised CCP but that was explained to me only (and sadly) by the fact I gave up cigarettes last year. But thank God I did. Iā€™ve got nothing else other than my symptoms and some digit but not painful digit and feet and initially hand swellings which only started after my bunion operation last October to tell me or show me (or indeed anyone else) Iā€™ve got PsA. But the tendon issues from my hands initially and my feet most certainly also initially and from my bum, more latterly, from my lower back are or were just soul destroyingly horrendous. PsA itā€™s said, can affect oneā€™s lower back awfully. Iā€™ve had lower back problems for donkeyā€™s years. Almost as long since I first suffered skin psoriasis. So I just kept changing my mattress. It came and it went but this is the first time I suffered such sciatic type pain but only centred in my bum cheeks. And it can alternate. Maybe though I just need another new mattress. Who on earth knows.

Itā€™s asinine on that basis, surely, that I must adhere to a DMARD protocol isnā€™t it? With such side effects? Makes zilch sense to me. Will always do so unless I see evidence. Proper cogent and rigourous evidence. To date I havenā€™t yet been privileged to see such evidence. Iā€™ll keep searching though.

@Poo_therapy I was hoping youā€™d see my humor:grin:

We know a lot, including the mechanisms which is where the biologics come from. Heres the problem There are 127 or there abouts meds used to treat PsA (or any inflammatory condition) which leads to over 16,000 possible combinations if you consider dosing that increases to over 80,000. Couple that with the worlds population realizing each persons immune system is unique to them, and the possibilities become an almost inccaluable number.

Thats where and why protocols come from. or better known as KISS (keep it simple Stupid) Of course if a bureaucrat gets a hold of it, everything gets screwed up.

Imagine spending 20 plus years learning your craft only to have some little gal who ended up in social work because she couldnā€™t get through any other major take a 6 mos course in healthcare administration telling you HOW to practice medicineā€¦ Thats exactly where we are today whether its NHS or private health insurance.

BUT protocols HAVE at the clinical level anyway improve treatment and in the case of emergency medicine saved countless lives.

I will caution you that while symptom control is a great goal and I hope your Irish treatment works (but be careful as the son of Irish immigrants I grew up with the warning where there is 4 irishman there is ALWAYS a fifth LOL) Symptom control does not equal disease control.

If your doc is on top of it, I suspect you will ā€œfailā€ MTX very quickly and get the good stuff.

Such wise words Tntlamb. Thank you. So much. But most of all this time thank you for simply making me laugh out loud, instead of just smiling. Loved, so loved the Irishness of your response. Hit the spot just perfectly. And Iā€™m truly sorry Iā€™m just someone with a feisty confrontational Irishness too. I enjoy it, or rather canā€™t resist exhibiting it, far too often. But it can be isolating at times. And I so know others struggle with my persistence.

But please believe this, I do so get the issue of a goal of symptom control versus disease minimization. I perceive Iā€™m presently balancing that right now but also I know time and time only will tell. Iā€™m willing to gamble that for a while yet. Which might end being stupid but I dearly hope Iā€™ve the insight to gauge any future issues correctly when needed, too, so as to admit defeat and try something else.

I also so believe I simply have that time to see. Just right now. I will of course keep everyone informed. But Iā€™m presently hopeful.

Iā€™ve no earthly idea if my Irish treatment works, or that it works because I hope it does, or that Iā€™m presently just out of my flare which persisted for the last almost year. Or that my ā€˜just psoriaisisā€™ (as I consider this inflammation is now) has now just got bored too of being an inflammatory arthritis issue. Certainly my skin psoriasis took a complete hike in 1999 when I severely fractured my shoulder in an accident. Reverse Koeblnerā€™s syndrome for skin psoriasis for those that might not know. Whereā€™s any research to show how to ignite that for ostensible 'psoriaitic arthritis?

But again thank you, most of all for your so very wise words. But even more so for just making me feel able to laugh and feel so just accepted and therefore cared for. Despite all my Irish temper tantrums over protocols.

You moderators and members are just phenomenal. So thank you hugely for being here. Youā€™ve collectively and individually taken me down from many an emotional issue this far, and most of all shared and taught me so, so much and continue to do so. Always. How utterly fabulous is that??? Iā€™m in awe of your dedication and care frankly. And Iā€™m so utterly grateful.

Thank you.:frowning:

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