HI , since i last added to here, i started sulfasalazine twice and had had chronic headaches so after a month both times was advised to stop.
it did however manage the pain and swelling and a big change in tummy pains for the better. physically i felt very under parr though.
My symptoms are progressing sadly, finger is now misshapen and painfull , at least 3 other fingers are painful.
My neck is awful sometimes and my hip and heel and wrist are going the same way. im still managing on a few painkillers every now and again.
i do have acid so try to avoid anti-inlams.
im also being checked out for chrones or IBD next week as this is getting worse too. This improved with sulfa too, and a short course of steroids helped massively.
Im due to see the rheumatoligist on 1st december to see what next step is.i m a bit concerned i have to say..
My mood took a real drop recently and i was off work for a month, the time off definately helped, it gave me time to focus o myself a bit, feeling muc more optomistic now.
As the winter approaches its making thngs worse i think, those cold days and nights chilling your bones and joints.
i do see a chiropractor every 3 months ,it helps , I THINK. keeps me straightened out at least.
Where to next is my concern, its a lon road ahead i think
Hi Debbie, PsA is an endless road interspersed with medication pitstops along the way. From ssz you are likely to be moved along to another DMARD ... probably methotrexate or leflunomide. Hopefully one of these will help but if not, and you have the requisite swollen/tender joint count then you will be eligible for a biologic. It's well worth checking out the NICE treatment guidelines (we have them posed in the UK group Cuppa House) so that you feel confident in pushing things along with your rheumy rather than letting too much time pass before the next step is taken.
I hope you don't get a Crohn's diagnosis but even if you do the PsA and Crohn's treatments are very similar and may even fast-track you to a biologic. Inflammatory bowel is a symptom of PsA too.
My advice for December 1st is to go to that appointment as informed as you possibly can be about your PsA and treatment options. If you want some pointers on what to read then let me know.
Thank you for replying . I have heard of biologic treatment , I think I have to try 2 DMARDS before I can even ask. I’m not sure tho .i think your right I need to arm myself with as much as I can for my next visit .any advise would be greatfully received . I was only diagnosed earlier this year snd took a while to admit they were right …
I think it might be ibd rather than chrones ( hopeful and wishful thinking)
It seems a long windey bendy bumpy road that everyone is on . Takes a lot to get to grips with doesn’t it , onward and upward
Thanks Jules
Debbie
Jules G said:
Hi Debbie, PsA is an endless road interspersed with medication pitstops along the way. From ssz you are likely to be moved along to another DMARD … probably methotrexate or leflunomide. Hopefully one of these will help but if not, and you have the requisite swollen/tender joint count then you will be eligible for a biologic. It’s well worth checking out the NICE treatment guidelines (we have them posed in the UK group Cuppa House) so that you feel confident in pushing things along with your rheumy rather than letting too much time pass before the next step is taken.
I hope you don’t get a Crohn’s diagnosis but even if you do the PsA and Crohn’s treatments are very similar and may even fast-track you to a biologic. Inflammatory bowel is a symptom of PsA too.
My advice for December 1st is to go to that appointment as informed as you possibly can be about your PsA and treatment options. If you want some pointers on what to read then let me know.
Yes, it is a long road. But, with the right company and the right supplies, it is possible to travel it comfortably. Of course there will be bumps and potholes along the way, but if you are committed to doing the best for yourself, it is possible to enjoy the trip, and even smell the roses. But you're not there yet, from the sounds of it, unfortunately.
Going armed with information is a very good idea. Don't forget that we have all kinds of information and advice in the Newbies' Guide (shortcut in the green band above). And drop by here if you have any questions. That's what we are here for.
I bypassed the sulfasalazine and the DMARDS, but that's probably because I had had moderate psoriasis which was treated with everything topical imaginable and sunlamp treatments for almost 40 years. Then, after diagnosed with PsA for nearly 6 years I guess my insurance provider thought it was OK to go straight to the biologic.
If you have moderate to severe plaque psoriasis along with the PsA, you could maybe go straight to a biologic. It worked extremely well!
Hi Grandma J, Debbie is here in the UK with me and unfortunately nothing gets us straight on to a biologic. Our national healthcare system, whilst 'free', sets a framework of treatment protocols for both psoriasis and psoriatic arthritis which have to be followed in order to access the biologics. As Debbie says you have to have tried (and failed either due to side-effects or inefficacy) two DMARDS before you can even be considered for a biologic for PsA and even then you have to meet other stringent criteria for tender and swollen joint counts.
Unfortunately, even folks with their own financial resources or private medical insurance in the UK, will not be able to access the biologic any quicker because the supply chain and ongoing monitoring is simply not provided for outside of the healthcare system. It's a cr*pper but the best we can do is understand the system and try to work with it and make sure our rheumy keeps on track and on the timeline!
Grandma J said:
I bypassed the sulfasalazine and the DMARDS, but that's probably because I had had moderate psoriasis which was treated with everything topical imaginable and sunlamp treatments for almost 40 years. Then, after diagnosed with PsA for nearly 6 years I guess my insurance provider thought it was OK to go straight to the biologic.
If you have moderate to severe plaque psoriasis along with the PsA, you could maybe go straight to a biologic. It worked extremely well!
Thanks grandma j and jules . I will gather as much info as I can when I go . Your advice and thoughts are very helpful. So thank you . I have some swollen painful joints I have heard the issues with biologic . It’s a real stress isn’t it . I’ll be prepared to try another DMARD and hope for the best . Things have definitely got worse since I first posted , even though Iniyially better with ssz .
I will focus on next week and December 1 st . Another step forward I guess regardless of outcome of next drugs .
This is such s useful site , so glad I found it
Thanks sll of you for taking time xx
Debbie, if you have stomach issues generally and your docs suggest methotrexate ask to have the injectable version from the get-go as by-passing the stomach helps avoid the nausea. Some people get the headaches with mtx and the best way to minimise is to drink lots and lots of water. Wish I'd known about this when I started it. I managed to avoid the ssz headaches with increased water intake but it "got" me with other side effects! I found leflunomide very tolerable and effective for a while.
thanks jules . When I took Ssz I was aware of the water issue so I drank a pint with eac dose . I didn't mind as I drink water mostly . Caused problems going out I have to say . Constant needing toilet . Spoils a few days on holiday. Second trial I drank half a pint and made no difference . I have to say I'm scared of these drugs . The tummy issues frighten me , I'm vom phobic ( ametaphobic ) quite severely .i wish I wasn't . I'll write all of this down I think for my appointment. It's great to be offered all this well researched and founded advice . X
Jules G said:
Debbie, if you have stomach issues generally and your docs suggest methotrexate ask to have the injectable version from the get-go as by-passing the stomach helps avoid the nausea. Some people get the headaches with mtx and the best way to minimise is to drink lots and lots of water. Wish I'd known about this when I started it. I managed to avoid the ssz headaches with increased water intake but it "got" me with other side effects! I found leflunomide very tolerable and effective for a while.
I'm in the UK too and am all too aware of the annoying treatment protocols. However it is, arguably, 'better' to have PsA than RA treatment-wise, at least at the stage you're at, as we do not need as many swollen / tender joints to meet the criteria for biologics.
I get the impression that more and more rheumys are coming round to the idea that moderate to severe PsA does respond a whole lot better, generally speaking, to biologics than to the DMARDs. However that can be offset by concerns about cost. So being our own advocates is really important. Easy phrase to use, might not seem so easy to actually do that! But basically it just comes down to being polite but stubborn and informed!
From what you say, in your shoes I'd be hoping to be put on injectable Mtx or Leflunomide in December. Mtx made me feel better, Jules found Lef effective ..... I'm not so sure we hear as much positive feedback about Sulfasalazine. And I would ask the rheumy whether he or she is thinking in terms of biologic therapy down the line. I saw several rheumys one way and another in the early days and all of them, with the exception of the individual who was my 'official' rheumy, talked about bios as the way to go so I really think it's okay to flag up that you are aware of this form of treatment.
It's a long old haul at first, isn't it? Glad you've joined!
Oh, and just seen where you are ..... not far from the rheumy dept. I now go to (I have a bit of a journey to get there). So if your treatment gets a bit hum ho I'd thoroughly recommend my rheumy, he wouldn't let the dust settle! (And we do have the right to see a consultant of our choice, even if in a different CCG).