PsA outlook
Posted Wed 25 Mar 2020 10.10 by aliceb
Hey everyone,
I'm a 21 year old female and I was diagnosed with PsA few months ago, despite having no psoriasis. The diagnosis made me a bit sad, to say the least, mostly because of the lack of answers on the internet and a daunting possibility of developing psoriasis within the next two years.
I've been trying to find out how "crippling" the disease is and how fast it progresses. I was put on sulfasalazine 2 months ago, and it worked wonders, but now some pains are back. Maybe someone knows if sulfa stops the progression of the disease? If I keep taking it for the rest of my life, should I expect more pains and deformations? If no, are there any drugs that completely stop the progress?
I keep telling myself that the really bad testimonies of people on the internet or instagram are a very biased sample, but maybe I should be expecting to use a walker in 10 years time?
My pains have never been terrible, but a lot of my joints are affected by PsA, mostly the sacroiliac joint. I'm really scared of the possibility of not seeing improvement despite taking drugs. How serious is PsA and how possible is it to have full remission while taking drugs?
Thank you :)
3
Posted Wed 25 Mar 2020 18.51 by Mac
Hi Alice.
I wouldn't believe all that you read on the internet, unless from a credible source. A good lot of those questions you should ask your rheumatologist, and they should have gave you information on PsA. If caught early and treated it can be kept under control. Is there a cure sadly not.
Every one is going to have different experiences with PsA, and the same goes for the medication. The medication won't be a miracle cure, your still going to have flare ups, though it will tone it down greatly.
I'm no medical expert and these are from my own experiences.
Make a list of the questions that you need answer's too, and take it with you next time you meet your rheumatologist.
Posted Wed 25 Mar 2020 19.39 by aliceb
Hey,
Thank you for your answer!
From your experience, would you say that the disease progresses over time? Even with drugs?
I’m just really worried that if I already have it at the age of 20, and if it progresses, I’m worried what my life will look like in 20 or 30 years, when, to be fair, I’m gonna be 50 which is still a pretty young age.
Thank you!
1
Posted Wed 25 Mar 2020 20.04 by Mac
I'll put it like this, I was in pretty bad shape when I went to my GP, had been suffering for years, so not the best person to answer what the meds do if caught early enough (personally I would think it would be better). For me the medication has helped big time.
As I said earlier your rheumatologist could answer your questions better than me, as they will have an idea of how severe your PsA is.
I do know one thing though, worrying what things will be like in twenty or thirty year's time isn't good for you.
Posted Wed 25 Mar 2020 20.06 by aliceb
Alright, thank you so much! I guess you’re right, worrying won’t help me much :)
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Posted Wed 8 Apr 2020 07.23 by Mark
This last few weeks has been a nightmare. What with lockdown & the stresses that come from having to shield. That's enough to trigger a flare. Usual pain in smaller joints for me but this time have pain in shoulders that radiates to the elbow. Likewise pain from the hips that radiates to the knee with a burning sensation on the tops of my thighs. Severe heal & foot pain but only on the right. At times I'm struggling to mobilise especially on rising even after brief rest. Exhausted at this time as I'm kept awake with this disease. Still I'll get a phone consultation next week. Love to hear what others experience. Apologies if I'm off topic.
Posted Thu 9 Apr 2020 08.45 by Mac (edited Thu 9 Apr 2020 08.46 by Mac)
Hi Mark.
Your not off topic at all mate, it's good to beable share our worries/pain with others. I have found that getting as much exercise as possible does help with the pain side of things. As for the worry/stress I suppose it's easy too say not to, I'm lucky that road as I don't tend to worry or stress out over things I have no control over. Best try and just chill, it will come too an end.
Posted Mon 27 Apr 2020 23.01 by Jacop1984
Hello everyone. Do you have thimble nails for psoriatic arthritis? Do you feel more pain when the weather changes?
1
Posted Tue 28 Apr 2020 11.47 by Mark
Hi Alice B, what I would say it's my experience that the psoriasis normally comes before the arthritis first shows itself. I'm not sure I'd take the diagnosis lying down & would probably want a second opinion were it me. Unless it's beyond reasonable doubt. As you say, you aint got no psoriasis. In addition to that would say don't go wishing your time away, your not gonna need that frame, and you certainly must not let any disease come to define who you are, or what you're about, any disease must live around you. Hope that helps. Mark
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Posted Fri 8 May 2020 22.48 by CBMan
It seems as though you have been diagnosed quickly, which is good as one of the problems a lot of people have is that there has already been a fair amount of joint damage before they get a proper treatment regime going.
Its good to hear that Sulfasalazine has been so effective. I've had a good experience with it too, although in my case it took a while to get the dose right. You may be experiencing the same thing.
I have been on Sulfasalazine for more than ten years now (I am now 55) and have not seen much deterioration in my joints. I am still active (hiking, cycling, golf, cricket) and, in short, there is no reason to be pessimistic as long as you stay on top of it.
1
Posted Sat 9 May 2020 09.16 by aliceb
Hey,
Thank you for all your replies. @CBMan, you definitely calmed me down. I was diagnosed very quickly, I would say within two months of getting first pains and the only joint actually deformed is the sacroiliac joint. It's so nice to hear that you've been on the same drug for a long time and it is effective!
I'm gonna get a second opinion on the diagnosis I think, it's weird that I have no history of psoriasis and neither does my family. Nonetheless, I'm working on accepting the diagnosis and not fighting with it too much. It's really amazing that there's this community of people who just talk to each other, it's been great help :)
Posted Sat 9 May 2020 09.22 by aliceb
Actually, I was meaning to ask that in a private message but I can't find the option to just message someone directly. @CBMan, if possible, can you share how much sulfasalazine you're taking, or if you had to up the dose at some point? Did the drug work only after some months?
Posted Sun 10 May 2020 16.51 by Steve h
Hi Aliceb, I am also on sulfasalazine and I now take 3 tablets twice daily. My pain started with my hands and fingers and has now progressed to my feet since being diagnosed. My feet now give me most pain especially when I first get out of bed and eases once I have been walking around for a while. As I understand it sulfasalazine only helps reduce swelling slowing down any further damage. Hope you are feeling more informed with all the replies .
Posted Thu 21 May 2020 18.19 by CBMan
When initially diagnosed I was on 2000 mg (four tablets a day). That was upped to 3000 mg (six tablets a day) after about a year and on that dose I was largely symptom free, just the occasional flare-up usually associated with diet or stress.
I stayed on that dose for about another eight years, but at that point my doctor referred me to a Rheumatologist who thought that staying on that dose (she told me it was the maximum allowed) for much longer was not advisable. You will find that there is a tendency to rotate medications over the long term because of issues with habituation. She recommended that I try Methatrexate, which I did last year for about five months. However, that was not effective and both my arthritis and my psoriasis flared up badly.
I am now back on Sulfasalazine, but at a lower dose, 1500 mg (three tablets a day), which is controlling my arthritis, but does require the occasional resort to ibuprofen on a bad day.
With regard to dose it is worth bearing in mind that I am quite a big guy (6'2" and weight between 190 and 210 lbs over those ten years) which will have been relevant regarding the dose.
Posted Thu 21 May 2020 18.20 by CBMan
On your final point - yes, it typically seems to take between eight and 12 weeks to see material benefits.
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