I was diagnosed with PsA about a year ago. I was 28 at the time. I'd had pain in my right foot for about a year previously and swelling in various fingers. At first this was assumed to be repetitive strain injury - I didn't mention the foot pain at first. The diagnose has been confirmed (I have very slight psoriasis on my scalp and behind my ears) and it's been suggested it is the spondylitis variant. At first I was put on NSAID and these helped with the pain more than anything else but those combined with sulfasalzine gave me awful stomach problems so in September I came off all of them. Now I just take ibuprofen if the pain is especially bad. They then put me on minocycline, which is off license in the UK, and that did nothing but make me feel sluggish and ill. From January I've been on methotrexate and am now up to the full dose of 20mg with 5mg on the other days of folic acid. That has also had no discernible effect, except to sometimes make me incredibly tired. I've written to my consultant requesting that they finally put me on the biologics - they're rationed her and you have to have failed on two alternative treatments first. I have several questions and after that want to tell you some of my experiences in the hope I'm not alone.
So, which biologic would you most want to be treated with should I get a choice?
I already have some permanent bone erosion in my right foot. I understand the anti-TNF is the one treatment which definitely prevents this. Is this true?
What side effects should I expect and are they likely to be less than on the methotrexate?
One consultant told me it seemed almost certain mine had come on due to stress and that if the next 10 years were kind to me and relatively stress free it was possible I could recover entirely. Has this been anyone's experience whose PsA came on NOT due to an underlying health condition?
At present I have pain in the joints of both feet often - always the right. I sometimes have pain in my knees and what I took to be my hips but have been told is my sacram. Around the time I was being diagnosed I was also given an ultrasound for testicular pain (sort of deep in the groin on one side). However, whilst nothing was found I sometimes still get it and have since been told that hip pain is usually located there, so wonder if my right hip also plays up. Thankfully my fingers and hands haven't been bad for a while. I read on here about pain in the heel and I have that often. I know that I'm fortunate - the pain is not crippling, although it has been in the past when I've had a bad infection which is why the immuno-suppressant aspect of sulfasalizine was such a problem. I'm trying to exercise as much as possible, partly for vanity reasons (!) but also because I find swimming really helps. However, the problem is that every week after taking the chemo I find there'll be at least two days when I feel so wiped out I just want to eat chocolate and drink wine and have no energy. Friends treat me as if I'm lazy or as though they understand how one can want a nap - I want to say it's nothing like that. I HAVE to sleep for about 4hrs in an afternoon the day I take the pills and the next day too. I don't know how not to feel guilty about it. I'd like to allow myself the space and time to do it, but just feel I shouldn't. Just like the exercise - I feel I should force myself but can't summon the energy. It gets me depressed sometime too. I feel as though I'm only living half a life - sometimes sleeping half the day. I think this owes more to the methotrexate than the condition, which is why I want to stop it as I see no point in taking a treatment that has no positive effect and only makes me ill.
Anyway, that's me and it's great to find you all. I do hope you can advise.
I have PsA / spondylitis (but maybe also Ankylosing Spondylitis) and am on Enbrel. It has worked well for me to increase my range of motion and hopefully slow down the damage and fusions. I have little to no side effects.
One thing about psoriatic arthritis is that it in itself causes extreme exhaustion. Most people can't understand what it's like to live with exhaustion so severe it interferes with life. Or that you can be having a good, active day one day and the next few days not be able to do much of anything .... or even be energetic in the morning and then hit a wall and need to sleep for 15 hours.
I hope you're able to get on a TNF inhibitor and it works well for you!
Some treatments do a better job than others, But the important thing to remember is that the fatigue is not at ALL related to activity. Most docs will tell you the more active you are able to be the better control of symptoms. Also no small amount of the fatigue is Depression related (lack of endorphins) activity boosts that as well.
The more active you keep (and that means working specifically on mobility posture etc) the better the prognosis. The problem is sort a vicious circle. Pain leads to inactivity, inactivity leads to depression, depression leads to increased symptoms. All this in the face of a disease that increases fatigue. Just remember the fatigue is in no way related to activity, its a result of the immune system Failure, activity won't make it worse even if its just a stretching routine. Failure with MTX generally leads to the biologics as the next step. Were I starting I would start with Enbrel, Its a pure synthetic so if it works, it generally lasts the longest. I would keep Humira the farthest away, not because it isn't great, it is. In the Spondylitis versions of PsA, there is often eye involvement (Iritis or Anterior Uveitis) the only biologic effective is Humira. so I kind of like keeping that one in reserve. Also the others usually end up having to be supplemented with MTX anyway. Also the others (aside from Humira which is 100% human and Enbrel which is syntheti are "humanized" mice (or other animal) DNA which can lead to some antibody formation or supplemental medication.
BTW that groin pain thing is what FINALLY got me diagnosed. A rheumy will recognize it immediately (or should) Its one of the more classic enthesitis Inflammation of the enthesis, where the joint capsules, ligaments or tendons attach to the bone, is a hallmark of spondylitis. This can be felt in multiple areas of the body where your doctor can check for pain and tenderness. The sites are sometimes referred to as "hot-spots." They can lead to swelling and tenderness along the back, pelvic bones sacroiliac joints, the chest, and the heel. The heel can be significantly affected, in which case the pain and tenderness can have a serious impact on a person's mobility. The two areas of the foot that can be affected are the Achilles tendon at the back of the heel, and the plantar fascia at the base of the heel.
Thanks for your reply. I'm not sure I understand - do you mean that the more I do the better the prognosis for my condition? Or rather, when you say symptoms do you include tiredness or mean the pain and mobility of my joints? I certainly think I keep pretty active. The methotrexate hasn't helped, neither has the cold weather w've had these last few days. The pain in my feet has been pretty bad these last few days. I stay up and about but it can be hard to keep working in those circumstances.
Yes, honest to gosh i got my first injection at the D.'s office and I could tell a difference on the way to the office. It hasn't been with out some peaks and valleys, but I have been able to take advantage of the Peaks and build some muscle mass. I can not stress that enough. I ddon't care HOW tired I am. i do something everynight before bed whether its my regular routine or stretch routine. I sleep better and wake up better with markedly less "morning stiffness" ( it seems the less morning stiffness the less fatigue later in the day.) But the BIGGEST difference is the markeldy fewer nasty effects from the meds. However we are all different.
Thanks again. What you describe about the heel perfectly describes the symptoms I've had today, the sacroiliac joints have already been picked up as problematic for me and I've never mentioned my suspicion with regards the groin pain but I should - it all ties together. Have you found the biologics have lessened your fatigue?
Thank you again - all so helpful. Makes me feel I understand it all more.