Hi again

Welcome Greetings and Introductions
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Hi there

Some of you knew i’d be back. hi Jen, poo and the others. you were all great people.
for those that dont know me… quick update.
Basically i had pain for 4 years in wrists and ankles and back. My issue is always refered pain in the joint… and very tight/sore muscles and tendons. refered pain can be confusing. is it the joint or the tight tendons near by?
was diagnosed with PsA, took Salafixazane (wrong spelling) Bad stuff couldnt continue after 2 weeks of upset tummy and dizziness, next was plaquinal. same… dizzy and bad tummy… 2 weeks. then i saw a new rumy
who told me i had no trace of PSA. diagnsoed me with Central Sensitisation.
I did well after this news. because i wasnt coping with the news i had PSA. finding out i did not have a horrible/degenerative condition and it was all brain was fabulous.
i then embraced this… did meditation… worked on staying calm… started telling myself there is nothing wrong… my pain cant hurt me. pain is in your mind. walked through it… even jogged. lifted heavy stuff at work… did gardenning. heavy works… you name it. had my life back. confident i am ok and can do anything and can ignore any pain along the way… the pain went away mostly… still sore sometimes but basically i defeated the condition.

I messaged you all and gave an update at that point.
i got worse again late last year. same symptoms as before. went to rumy… limping. ahh yes Psioriasis can effect the tendons in some people. No PSa but tendons effected by Psioriasis. he gave me strong anti-inflamitories. they did absolutely nothing, no effect. came back after a month. my elbow is bad now… cant bend it… takes guts to straighten, then feels releived to be straight, and then takes guts again to go back from straight. is this familiar?. explained it to him. he looked and siad still no joint issue… tight bicept… enthesitus!.
tendons under attack from general psioriasis. but still no PSA.
And good news… ive successfully defeated CS, fibro and no other symptoms/features are present.
I have since read that the tendons is a feature of PSA not Psioriasis and that joints will follow.

whats your take?
rely on the specialist or freak out?

My original diagnosis from the first rumy was i had PSA and it hadnt progressed far enough for damage in the joints to be detected so started treatment.
the second said no PSA. your fine. go do mental health for your fibro.
but now hes saying… um “lets up the anti and start you on a psioriasis treatment for the tendons” which just happen to be all the same treatments for Psa.
so was the original rumy correct. is the new one feeding me some info to manage me dishonestly? or am i a rare psioraisis case with tendon symptoms.
the entire time i get releif from massage and needling, so i would expect i still have no actual joint/bone issue

I told him i simply wont take any more DMARDs Not interested. if taking a nasty evil poison that will destroy stomach lining and liver along with all the wild side effects becomes my last option then i will simply neck myself. he said i dont qualify for biologics under the current requirements as i do not have 4 swollen joints and do not have 70% of my body covered in skin p.
Hes putting me on low dose naltrexone.

im concerned he said it is not tough on the liver. yet ive since read that it is.
i got a call from the compounding chemist making it telling me a different set of instructions to what the rumy told me so im very confused right now and unsure what to think or do.
not handling it as since i saw him last week my symptoms have escalated to worse than ever and now im losing the plot.

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Hi @nickace! It sounds like there are still a lot of questions. It isn’t unusual for it to take years to get a diagnosis. Some of what you’re saying is a bit worrisome. I would consider going to a center of excellence, large university hospital system, etc. We want to make certain that you have the best and the brightest reviewing your testing and guiding treatment.

The truth is that there’s not always great treatment for enthesitis. But the bigger concern is the dangers of untreated inflammatory arthritis. The truth is that many meds have side effects, including over the counter ones. For those who need meds, the side effects are typically very manageable. The joint damage, and pain and disability that follows, not so much so.

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Others in Australia will no doubt bounce in shortly with your precise protocol for the treatment of PsA. First enthesitis is a part of PsA. it’s that pain and incapacity in your tendons and ligaments instead of your joints. PsA is best looked at (in my personal view) as a systemic inflammation process, so bascially your immune system has gone ‘insane’ and is running around your body inflamming any damned thing it feels like, and when it feels like it, often that will be joints, other times it will be your rib cage, and tendons and ligaments from joint to joint. The object of any treatment is to get ahead of your disease activity or at least halt it or slow it down. Australia and in the UK where I am insist on a treatment protocol as in DMARDS first and then if you ‘fail’ them and are deemed bad enough (in the UK that means at least 3 swollen joints) you qualify for biologics, which frankly in my view are better at getting ahead of disease activity or halting it than just DMARDS. The reason for the protocol in your country and mine is of course funding the drugs. DMARDS are as cheap as chips biologics aren’t with some costing nearly £1,000 per weekly shot. So the protocol is sensible funding wise and sadly there’s no provision of the drugs unless you go through the protocol.

Many people it seems are also diagnosed with fibro too, which it seems you have. I don’t have that so I’m afraid I don’t really understand it that much, other that it too gives our far too much pain and can make you so exhausted too.

DMARDS at the dose we’re prescribed for PsA aren’t actually that strong but they come with side effects. Some of those side effects wear off after a few weeks some don’t. I couldn’t hack any of the side effects from methotrexate (mxt) but had no side effects from sulfasalazine. And indeed sulfasalazine worked well for me for time. I did however take anti-sickness drugs with it initially which stopped all nausea etc. Biologics also come with side effects too. As @Stoney said all drugs even those we buy over the counter have side effects. But side effects can be managed. PsA can be managed too. DMARDS can affect your liver and kidneys but you’re carefully monitored on them so any such stuff is picked up fast, should it occur which it rarely does really in the big scheme of things. Many, many people are absolutely adequately treated on DMARDS alone. They do the job well but they take a long time to get going most take at least 3 to 6 months to do their stuff at all. So this disease also teaches us patience of huge proportions which is such a pain in the behind emotionally as well.

Three years ago I was a mess not unlike you are now. I simply was shocked to the core I had this disease and I was in such pain all the time and I could barely walk. I also could barely use my hands so getting dressed and dealing with my personal care was a nightmare. Today after plodding through DMARDS and ‘failing’ them, and ‘qualifying’ for biologics, I’m in little or no pain much of the time and so much of my capacity has returned. I can walk my dog daily. I have zilch issues in dealing with my personal care other than I must have a shower as whilst I can get into a bath, I simply can’t get out of it. I’m no longer exhausted all the time, I can carry in wood from the garage for the fire in my living room and if it was summer I would be able to mow my grass. I continue to hold down a full time job, albeit mostly from home. That’s what cogent treatment of PsA can do and it’s fabulous. Because PsA hit me overnight virtually, instead of slowly creeping up on me over the years, I was an in excellent position to halt damage to my joints from it this far at least. The last three years though haven’t been easy, I’ve dealt with all sorts of weird and wonderful things this disease can do to us but right now, right here, I feel incredibly lucky frankly. One of the biggest lessons I’ve learned from having PsA is that living in the present is the only way to live. PsA changes all the time too. Often what’s so bad today won’t be next week, instead it will be another part of you howling in protest. Hence my view that it’s systemic in nature.

But also as @Stoney said, I went to a centre of excellence on our NHS and got me in front of the best PsA rheumy I could find in the UK and asked her to treat me, which she still does. And thank God she does. Doing that made me feel safe, especially when enduring all those weird happenings over the past three years. I have to travel over 200 miles each way to see her but for me that’s irrelevant really because I know her expertise is just excellent.

It’s natural to feel as afraid as you feel presently. I was utterly terrified. And angry. Gosh was I so unbelievably angry. But now look at me. That’s what proper cogent treatment as per the UK protocol has achieved. Along side this cogent treatment I got myself in front of a good psychotherapist as I wasn’t coping at all well emotionally with all this. I still visit her. It’s now not twice a week or even once a week, it’s about once every two months. That helped me the most really as that got my head back in a sensible place so I was much more able to cope overall.

So as you can see you can get out the other side of all this, really you can. But it takes work sadly. Huge hugs @nickace as I’m guessing just hugs right now will help.

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Well, it’s your choice. Those are some sweeping statements about DMARDs though.

There are no magic bullets. I’ve been on Mtx for over 6 years and do not appear to have been poisoned. Definitely a drug that suits some more than others but probably not as bad for the body (or mind) as uncontrolled inflammatory disease.

I see you’re concerned about the effect on the liver. I guess regular blood tests to check the liver, amongst other things, are the way things happen in Australia. I had a liver scan after 4 years of Mtx and to my delight it showed that organ to be just fine. I’d have thought that after many years of enthusiastic boozing followed by Mtx and other meds, it would be in a sorry state, but nope, it’s a very sound liver apparently.

I think so much depends on lifestyle, including moderating the potential toxicity of meds. And you seem to have worked very hard on that front, you’ve got that covered. My honest view is that you might reconsider your views on the DMARDs and see if there is one that works for you. There are options, we consider them in the cold light of day, that’s all we can do.

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Hey Nickace, long time no see! I won’t say I’m glad to see you’re back, because I’m not: being thrown back into uncertainty and dilemmas ;and needing support is SO not good. That said, I’m glad that you came back here when the going got tough. So welcome back.

That’s a miserable state Doc No. 2 has put you into. Is this person a rheumatologist? Really? @tntlamb can correct me if I’m wrong, but I was always under the impression that tendon inflammation is part of psoriatic arthritis, not psoriasis. Just curious, what kind of skin involvement do you have?

I know you’ve had a miserable time on the DMARDs, but are you documented as having tried and failed them? If not, it may be worth your while to go through the process of DMARD trials again: if you ever get into a situation where your disease spirals out of control, you will be very glad of having eliminated the DMARDS as a possible course of treatment.

There’s someone else here from Australia who had mostly tendon inflammation/pain, and eventually ended up on biologics and got tremendous relief from them. But it was a very long slog and it depended on her finding the right specialist. I think it’s @MacMac.

You’re the swimmer, right? Sounds like it’s time to go relax, stretch and float in the pool. Other than what ails us, how are you doing?

Seenie

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Hello back at you Nickface. Sorry, you are dealing with a dreadful problem. PSA is a complicated disease with a whole lot of possible comorbities. Based off a layman’s view is sounds like PSA but any auto immune issue is serious stuff.

In the states here I went to a rheumatologist for over three years. He was not the best in my opinion but he had the essentials down. What I mean is that I learned no treatment is not an option. Second, the need for blood tests to monitor certain markers. Eventually, after loosing my job and my insurance I can now only afford my primary doctor appointments. This meant I had to figure out how to get biologics without any money. Luckily here in the U.S. we have a few options that help out people without much money.

After learning the essentials I felt quite comfortable asking my PCP to write for the drug I was last on. Maybe you have this in the UK? Long term I hope to see a specialist again when I can but for now I will, along with my PCP play advocate for my own health decisions. Any drug has effects that must be measured against the condition and the medical problem you have. Every drug known to man has this very same problem. The idea is to measure the condition and the risks against the disease you are treating. When a person gets desperate you would be surprised at what they will do. There is scary stuff on most of the drugs that are taken for PSA. Poo-therapy and Sybil have it right and give good advice. Get a second opinion to measure how it aligns with symptoms. I would primarily find someone known who is a specialist. A PCP may be able to direct you to the–specialist that they feel appropriate given your symptoms and history.

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Sounds like your doc is about 20 years behind the literature, but certainly willing to take $$$ for LDN treatment. which as far as poison drugs, makes DMARDs look as harmful as jelly beans. Not to mention MTX is given at 1% - 10% of the dosage used for cancer treatment is. Of course folks who are feeling sorry for themselves and unwilling to take control of their disease flood the internet with information and data that has no relationship to arthritis treatment. Not sure why - attention maybe? Anyway based on REAL research DMARD treatment is far less liver toxic than OTC doses of tylenol and several of the NSAIDS. When used in doses for chemo therapy for cancer it doesn’t matter what the side effect are because only one matters don’t use it you die. Of course while not fatal, the outcome of not treating PsA (or Psoriasis as the case may be) is just as certain -permannent joint damage, crippling pain and yes for those of us who have organ involvement (as I do) early death. For god sakes man find a decent doctor, get some treatment and quit trying to micromanage your disease depending on Doctor Google.

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Hi @nickace, sorry to hear all you’ve been going through…I think you need a new doctor.
Your symptoms are very much like mine…I had enthesitis and whatever else causes pain in my back, neck, shoulders, elbows, wrists, fingers and Achilles‘ tendons, plus psoriasis —the pain you describe brings me back to the time when I couldn’t deal anymore with that. I described it as being like the Tin Man—joints would lock up if I wasn’t in constant motion and it was very painful to move them. It was horrible. I don’t understand your rheumy calling this psoriasis and telling you there isn’t enough joint involvement! My gosh, how sick does one have to be?
Anyway, I waited a long time to treat my PsA with the usual NSAIDs and DMARDS because it was “mild” and I, like you, worried about my liver, etc. So, after several years of my rheumy trying to coax me into taking the meds, which I’m sure my insurance provider was well aware, he was able to get me directly on Enbrel.
I wish you could convince your rheumy that the pain you’re having in those tendons and ligaments is indeed PsA so you can move on with treatment that actually fixes the problem and you can feel more normal! The difference in my joint pain was night and day soon after I started Enbrel.
Another suggestion I have would be to ask for some prednisone…I had a couple “rounds” of it before I went on Enbrel and it made me feel great for a short time. My mom is 93. She had polymyalgia in her late 60s or early 70s. Her doctor put her on a prednisone push and then a low dose, which she has been taking for over 20 years. Her dose is anywhere from 2mg to 5mg daily, depending on how she feels. A couple times she’s had to increase the dose to 20mg when she had a polymyalgia rheumatica flare. She’s pretty darn healthy for 93 (she’ll be 94 this month) despite being on the prednisone so many years. My husband also started taking low dose prednisone a couple months ago. He feels better than he had in a long time…he has RA and/or possibly PsA.
Arm yourself with info from your friends here. Your doctor needs to listen to you and take action!

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Thanks to everyone that replied. you all have very big hearts.
I was having a major moment the other day when i posted this. as you gathered.
Apologies it took me a while to respond. was having some me time. had a day off work (that never happens) . had a bath even with candles and some meditation.

@Stoney Thankyou. I am going to see Rumy number 1 and get his take. hopefully the past year ive wasted hasnt progressed to much.

@Poo_therapy Wow!!! Thats a long comment! longer than my post i think. Nobody can ever accuse you of not being extremely thoughtful.
Im going to hit all the treatments in the hopes of progressing to bio’s.
thanks for the hugs.
i got plenty from my 2yo who joined me in the bath a short time ago. beautiful moments like that should be enough to cure any disease. your hugs helped too :-):grinning:

@Sybil Thank you. you make some very valid points. about one poison and another which is better?. when your still coming to terms with having psa you just dont want to know about any poisons. slowly moving to the acceptance phase… reluctantly!

@Seenie Yes i am the swimmer!!! 10 points for memory! impressive. your body might be tearing itself apart but your brain is fine! like i told sybil above… valid points about whats worse. and yes i should have 2 down… a few to go… i will get on to it. thank you for pointing out @MacMac i will give him a hoy. @MacMac a-hoy… I will send you a PM.

@Woodworm … im very sorry to hear about your financial woes. i am going to go to rumy no 1 and see what he says about my situation.

@tntlamb thanks for the info. and i always micro manage everything btw. im an IT person.

@Grandma_J What a sorry pair you and hubby are! RA and PSA and maybe another PSA. im sorry to hear that. and yes ive heard steriods will clear up my situation but are quite damaging to the body. hopefully ill still have no joint involvement now after wasting a year+… Enbrel sounds wonderfull. ive been in pain for many years and braved it, then when it got bad started this process a few years ago and here i am. im sure when i get the right treatment i’ll be better that i ever thought possible. ahh thats what being normal feels like. i remember this. that must be what you mean by day and night.

Question all… low dose naltrexone… fad or something to try. ive been perscribed by rumy2… i see there is no documented evidence but it might help auto-immune by reprogramming your t-cells… and/or it gives you more endorphines and will help with pain…
try it?
or will this just potentially waste more time being untreated?
he did say next option is MX

Love to all!!!

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So happy to see you’re not in that place any longer. Onwards and upwards. P.S see? I can even write short comments too! :joy::rofl::joy:

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Hey Nickace,I already had my own pity party about it so I am good for now. :slightly_smiling_face: I thought maybe it might be relevant to see if you might have options for biologics without the graduating process from the insurance you described. However, here I went through a process from biologics for psoriasis for two years before I went to the rheumatologist and started trying the list of medications commonly prescribed. It was not a quick process at all. I wanted it to be quick but found that with some of these medications it is a wait and see type of thing. I have had psoriasis since age 10-11 years of age and the psa started showing where I noticed it right at 40. No idea about naltrexone used for auto immune. It never came up with my doctor as a drug option. Hang in there. It is a rough road to tread.

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Give it a chance … It gets such a bad press that many of us need to psyche ourselves up to take it. Seriously, with so much misleading info. out there I know I could well have psychosomatically reacted to it, I’m impressionable. I believe it is possible to kind of cleanse our minds of preconceptions.

And again, I do understand that it doesn’t suit everyone but that has to be balanced against internet-induced terror, which is real enough. I felt ‘poisoned’ for ages before starting meds, before the PsA really showed its hand. Yet since starting meds I’ve re-discovered what it’s like to feel fresh, alive, alert, which is not what you’d expect if toxicity were a problem. Okay, I’m not that fresh or alert all the time lol. But enough to make me trust these drugs. And the blood tests help … I think having had anaemia of chronic disease and raging inflammatory levels beforehand has helped me to appreciate all these ‘normal, normal, normal …’ blood results I get these days.

Good luck.

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oh and @Seenie. i forgot. my skin involvement is quite mild in the scheme of things.
so i have scalp itchy sores back of my head, around hairline and sometimes around the hairline at the front. and facial around my mouth. above top lip mainly and under. it goes from bad to worse to not so bad all the time… i complain but my wife always says cant see it… lately its also up next to my nose on one side.
i get flakey skin in my ears, and very dry fingers… no nail symptoms. the most annoying is when its on my tounge.

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Low dose naltrexone is not a legitimate treatment option, and will waste more time being untreated.

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Yep, I’m with Stoney, and as you said yourself there is no evidence for why you would take it… I trust my Rheumy (over 7 years now), but if he suggested I replace my Cimzia and MTX with something that has absolutely no trials showing success, I’d laugh at him, and say no thanks.

Edit: And wonder if he was getting early onset Alzheimer’s

Edit: but I guess if the Rheumy was convinced he was never going to get you to start on a DMARD that day, perhaps he was just trying to ease you into the idea with something harmless?

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