So, i saw rheumatologist yesterday, and have been taken off Sulfasalazine. I am having major problems with anxiety, and apparently sulfa can cause this. Anyway, i have a patch of psoriasis on my scalp, which the rheumy believes gives me a new diagnosis. Not rheumatoid arthritis, but psoriatic arthritis. I am to start mtx in 6 weeks, and just want to know. Am i still ok to post and have advice from you wonderful people? And, anyone with any experience of mtx would be much appreciated.
Penny
I have psoriatic arthritis too, and I post. No one has thrown me off yet!
Sulfasalazine causes awful mood problems in some folks. I loathe the stuff!
I have psoriatic arthritis & I'm still here. Psoriasis often clinches a diagnosis of PsA. There are a few key differences so it's possible that your rheumy feels your other symptoms to date tally with PsA as well as the skin disease. There is growing doubt that Mtx and other DMARDs control disease progression in PsA as effectively as they may in RA so if you 'fail' Mtx too you might qualify for biologics sooner rather than later.
I was eventually diagnosed when my toenails fell off, had bilateral Achilles tendinitis, and great fat sausage toes (which now look like talons!).
Yes you can iv got psoriatic arthtitis among other problems im due to start on a new injection called benepali iv been on all the tablet forms but had bad reactions everyone is diffrent to all medication and im sure metx will work fine for you keep us posted good luck xxx
Of course you are! As far as I can tell it's the same just with the psoriasis as well. I started getting psoriasis on my elbows in February 2015 but my rheumatologist hasn't changed my diagnosis, probably because I was diagnosed 21 years ago lol. My psoriasis seems to come and go which is odd. I'm not sure if the medication is very different for PA. X
PsA is under the umbrella of inflammatory arthritis Penny, so no difference as far as I can see & we have quite a few member with it! I had to push to stop SSZ because it made my mood very low, I can't honestly label it as depression because I know second hand the difference but it was enough of a concern for me to want off it.
I've been on MTX since my second year of diagnosis so later this year it'll be 8 years. I was prescribed tablets initially then switched to injections, doses varying from 15mg to 20mg, currently on 17.5mg & folic acid every day except MTX day. I feel less inclined to eat the following say so pick rather than have a proper meal & I'm a bit more tired but it really doesn't stop me doing anything. As a replacement for the SSZ I started leflunomide in mid Nov which seems to be suiting me with just a little hair loss. This doesn't overly worry me at the mo because I also had it when I first started MTX & whenever I had an increase in dose but it settles. A bonus is my hair has grown back wavy, particularly as my hair naturally is quite fine even though I have a lot of it, it makes it so much easier to style.
I hope your new diagnosis isn't a concern & you tolerate MTX well. It can be a very good med which doesn't deserve the bad press it gets in my opinion, thought that's generally by nay sayers who don't (or prefer not to!) understand it's not considered a chemo drug in much lower doses. It's helped me greatly.
What basis did the rheumatologist have for diagnosing RA initially? I have that diagnosis and certain features fit in with RA. However, I am damn sure I have PsA as I have a lot of features of it. I had a scaly rash on my feet which the GP said was Athlete's foot, lol. It isn't, as confirmed by a whole practice of chiropodists.
Like you, I have had a patch on my scalp for the last few months, and it is painful to the touch. The rheumatologist did not want to look at it, just keeps telling me to get confirmation from a dermatologist. This is all very well but the rash and scaly scabs come and go so to see a dermatologist I would have to pay so that I can be sure to have the rashes when I see the dermatologist. The rashes may not be present on the appointment day if I have to wait a long time for an NHS appt, and I don't particularly want to go back to the GP either as that takes even longer for an appt.
I would willingly pay but my experience is that you pay to see these specialists and all they can say is that they do not know but they charge upwards of £250 for a consultation. Then they want you to keep coming back and paying and you do not get a diagnosis. I think if they do not know, they should not be charging.
I think it may be as well to go for a dermatology appointment. At least that way there's something in the pipeline. Dermatologists are meant to keep their eyes peeled for signs of PsA in their psoriasis patients and refer them to rheumatology accordingly. So at the very least they should understand (hopefully!) what you're doing there, even if all you could provide on the day would be photos of your scalp when it was scaly. Unfortunately many rheumatologists do need a dermatologists view on possible psoriasis. Clearly something has to shift and doing something is better than nothing. I can see the problem though!
Yes, I'll try and get an appt when the rash is very obvious. I feel like asking some of these doctors if they have lost their glasses or if they need a sight test. I show them very very obvious symptoms but they can't see though everybody else can. It is a matter of rationing and cost, I suppose.
I have found psoriasis to be the most frustrating thing ever to get diagnosed. Lowest point: a beautifully coiffured lady dermatologist telling me that my baldness was 'mainly in my head' (caused by psoriasis but fairly unusual I think). I replied that it was all ON my head, leant forward, un-pinned the hair that I'd elaborately twisted and layered over my whopping great bald patches and she back-tracked, but very sniffily.
By contrast my rheumatologist told ME to take it seriously. He said he considered baldness in women a serious thing. He wrote to the derms repeatedly and his badgering eventually got them moving.
I wonder whether your rheumy could help at all .... perhaps by asking for a speedy appointment while you have symptoms? In any case, whether it's a rheumy or a dermatologist that moves things forward, it just takes ONE and until you get the ball rolling you won't find that person. Good luck.
Thanks for the advice. The psoriasis is not that bad though it has been worse the last few days.
I wonder if the difficulty in diagnosis is cost-related. There are so many conditions that the NHS does not treat and it evades treatment by refusing to diagnose. The creams for psoriasis are quite expensive (around £50/month) and it seems to me that they don't want to diagnose anything that is going to cost money and which they consider non-life threatening, however perverse their reasoning as to what is life threatening.
I think it is the crux of all my problems. I had a protracted viral infection around 2003/04 and true to form they did not know what it was. Extensive antibiotics did not help but gave me dreadful systemic candidiasis (another condition hardly recognised). I then got appalling urticaria (another condition scoffed at as a minor ailment) coupled with dizziness. It was then that I developed the rash that seemed to be psoriasis. I had to take anti histamines at that point which stopped the urticaria and psoriasis, reluctantly as they made me drowsy.
I seriously believe it is that history that has led to the inflammatory arthritis. I've told two rheumatologists that and they agree it probably is but said they have to go on established evidence.
Have you found anti histamines have helped your PsA? They certainly help relieve the pain in my hands, which is another reason for thinking my arthritis is psoriatic rather than rheumatic. However, the DMARDS did cure my frozen shoulders.
By the way, I still have the cold virus and it has come on quite badly in the cold weather - I've had this since 2003 and the first hospital said it was an allergy and my problem. I've wasted a lot of money on allergy tests. My current hospital, which I attend for the RA, has said it is a virus.
I took Ashwaghanda last year, a herb that boosts the immune system against cold viruses and it nearly cleared up. Unfortunately, it set off the RA and my shoulder was worse than ever.
Some friends, who have studied and teach microbiology said they think all cancers and so called auto immune conditions are caused by viruses. It was a friend of theirs who said I had a cold virus initially - she has done a lot of research into virology and was a university teacher in microbiology.
I think the cause (or rather 'trigger') for our RA or PsA is something a lot of us wonder about. I do ponder this myself but to be honest the key thing that concerns me is getting effective treatment.
Psoriasis does genuinely seem to be difficult to diagnose, to be fair. If you are currently taking DMARDs then they may possibly be 'partially treating' your psoriasis, if that is what the rash is. And that can mean that it presents atypically i.e. is even harder to diagnose. Thing is, really all we can do is push for treatment and if you have psoriasis (even very mild psoriasis) that will obviously give your rheumy food for thought and could influence treatment options.
Incidentally, it can be very risky taking supplements that boost the immune system because we people with RA and PsA already have overactive immune systems.
Thanks for the info.
I realised to my cost that taking Ashwagandha to boost the immune system impacted on the arthritis. It really made it bad but. It was such a pity though because it nearly cleared up the cold virus, which is now getting severe again. I went from sneezing and coughing up phlegm all day to barely sneezing at all with very improved breathing. Unfortunately, it is as bad or worse than the RA as it affects my breathing and thus curtails all my everyday activities.
I have been taking Chinese herbal tablets (containing Danshen, Dong Quai, Myrrh, Frankincense and Liquorice) and they do have anti allergic and anti psoriatic properties. I can't get them any more and the psoriasis returned after I stopped taking them - around October.
Have you found, though, that anti histamines help your arthritis? They certainly help the pain in my hands. I told the consultant that the swelling must be histamine and he all but fell about laughing. I have never seen anyone on here say that anti histamines help RA but I have seen reports of them helping PsA.
Thanks for all your help. Looks like I am going to have to pay to see a dermatologist.
I've never taken an anti-histamine in my life! I don't think so, anyway. I was listening to Inside Health on radio 4 yesterday. The doctors were discussing how paracetamol may not be as good a painkiller as was thought. They went on to say that rating painkillers is actually very difficult, because as soon as they dismiss one treatment along come patients who swear it's the only thing that helps with their pain.
This cold virus thing, sounds like a right nuisance. I've noticed that many of us get recurrent sinus problems and I'm beginning to think it is related to RA & PsA.
Some say there's little difference between RA and PsA but personally I like having a firm diagnosis of PsA (well, I do not like it one bit, but you know what I mean). There are differences and a good rheumy will pick up on them which can iron out a lot of confusion and ease some worries.
I'm aware that we're chatting away and might be hijacking PennyW1's post, I do hope some of the things we've chewed over are relevant to you too Penny, sorry!
Yes, thanks. Well PennyW1 could try anti histamines, as could you, and see if there is any difference. I did read in some medical article that they do work on PsA but not RA. It is not such an illogical thing to think the swelling in my hands (shown as effusions on wrists and hands on ultrasound and MRI) is actually histamine.
Hope the mtx works for you. I was on mtx for about a year for my psa but unfortunately it had virtually no effect for me. The addition of sulfasalazine only made me pee orange!
I was then taken off sulfasalazine and put on humira injections every fortnight whilst still on max mtx dose. 6 months of that and no noticeable improvement. The occasional steroid injection would help, but found their effect would wear off within a week. Managed to get an appointment at rheumatology flare clinic and they suggested changing from humira toxi by infusion. What a difference! Within 2 weeks, it was like I'd never had psa. I'm now 5 months into new treatment and take no pills at all. Just couple of hours every 4 weeks sat at hospital with a drip.
Be positive, it may take time to find the best treatment for you. Where possible, go do your blood tests when you feel it's at its worst if you can.
Psoriatic Arthritis
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