Psoriatic arthritis not RA
Posted , 5 users are following.
By way of an introduction, I was diagnosed with RA around 18 months to 2 years ago and have tried the various DMARDS and biologics without any luck.
My Rheumatologist has just advised me he now believes I have psoriatic arthritis mutilans. Mutilans is the most agggressive and serious and often results in severe disfigurement. I started on cosentyx six weeks ago and am now due for my first monthly shot after completing the four weekly shots. The Rheumatologist is sure I will get some result from it, I'm a litle more sceptical I'm afraid. Too date it has had a very slight effect, similar to Cimzia and another biologic I tried for RA.
This disease is spreading through my body like wildfire, it now affects my thumb and ring finger of the right hand and index finger of the left, wrists, forearms, elbows, upper arms, right shoulder, neck, lower back, righthip, left big toe and balls of both feet, suggesting there is some assymetric and spondylitic psoriatic arthritis involved as well.
If I don't find something to slow this disease soon I'm afraid I'll end up in a wheelchair, unable to even wheel myself around.
Interestingly, I was diagnosed with seborrhea a few years ago, but since coming down with PA the seborrhea has worsened greatly, I am now wondering if it is in fact psoriasis. I treat it with Head and Shoulders, Nizoral and Sorbolene daily which seems to help a little. These of course are typical of seborrhea treatments. I don't have the typical redness associated with psoriasis only the scales.
Now wasn't that a happy little intro?
0 likes, 12 replies
jon10179 tony35673
Posted
tony35673
Posted
Been there, done that: gluten free, dairy free, meat free, sugar free processed free, and on and on and on. Also tried all the alternatives: turmeric, omega, MSM and on and on and on. Even tried programs this site won't allow me to name; zip, zero nothing. Now I eat what I like, don't look after myself and I simply don't care anymore, and you know what? Still nothing has changed - what will be, will be, I've accepted my fate.
jon10179 tony35673
Posted
Well people don't see effects of diet for weeks or months, and if people don't stick it for that long then they will think it doesn't work. Took me six months hard dedication without slipping up with diet. I didn't even see one positive change until the four month mark and for the first three months my skin flared up big time. The nature of the beast unfortunately as the body learns to start managing itself properly on real food.
donna1952 tony35673
Posted
Seems this diagnosis is a tough one in some cases. My rheumatology prof was quick to teach us that the diagnosis is an art and may have different names at first. I guess you could call it "Bob" but how you treat it is the important thing. I have had low bak pain for 3+ years and just developed psoriasis this fall. My GP said I needed to get exercise and lose weight...oh and then there's that "gluten" thing everyone is obsessed with... hope you feel better and don't lose mobility!
tony35673
Posted
I've been trying all these different remedies for around 2 years, I don't think you could call that 'not sticking to it".
It may not matter anyway, I'm going in for a biopsy on a growth in my lung next week, although he didn't say, I think he may be thinking it's a cancer. One thing for sure I don't think I'll be opting for chemotherapy. I can't imagine anything worse than feeling sick all the time only to get better so I can enjoy this disease just a little bit longer. Time to let things take their natural course I think, I have my fingers crossed.
tony35673
Posted
The lung biopsy proved positive and I saw the surgeon toady. IIn to hospital next Wednesday for an MRI, surgery on Thursday and then a week or so of recoup and physio, very painful he told me. I'll be losing 20% of lung function but he tells me as I have 100% capacity I won't notice it. Fancy having 100% lung capacity at 66 after smoking 50 a day for 30 years, both the chest specialist and the surgeon were astounded when he saw the lung function test results. The surgeon also picked up a hot spot in my neck, could be more cancer or just inflamation from psoriatic arthritis. I'll find out after the MRI I guess.
frannie137 tony35673
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donna1961 tony35673
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Tony, my heart goes out to you. You must be wondering why you're the one getting all these ailments. Just wanted to wish you the absolute best with your surgery and treatment. You can beat this.
tony35673
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I forgot our anniversay date, maybe that's it!
frannie137 tony35673
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tony35673
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Well the Surgeon didn't lie to me, it is a very painful experience. I was supposed to spend 2 days in ICU followed by 4-5 in the ward. Didn't work out that way unfortunately: There was a small hole left in my lung and so I continued bubbling long after it should have stopped, ended up in ICU connected to the vacuum for 9 days, then had two days in the ward. One of the problems apparently was because my lungs a little larger than normal when the lobes were removed there was a rather large void left. Been home for about a week now and doing pretty well. Doing a couple of walks a week and working out in my shed. When I was releasd I had very little pain from PsA, Rheumatologist seems to think my PsA could improve after having the tumour removed. Wishful thinking, now I'm working in my workshop again my PsA has returned to how it was before the op.
tony35673
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Got the results from the second tumour the Surgeon found - benign. So, no need for chemo, wasn't looking forward to that; unfortunately, that meant the middle lobe was removed for nothing, better to be safe than sorry though, I guess.