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Psoriatic arthritis(34 Posts)
I've recently been diagnosed with this and am struggling to accept it. Over 6 months I've gone from a swollen toe and some aching joints to being on Methotrexate (which reduces your immune system) and consequent fortnightly blood tests. I am crying every day. I hate having bloods taken - but I know they have to check my liver function. Does anyone else have this? I'm also developing psoriasis, which doesn't bother me too much at the moment. I feel like jacking the medication but I'm so scared of what could happen to my joints. Just interested in anyone else's experience really...
Hi korma yes it is the not getting better part which has devastated me too - just seems to have come from nowhere. Will check out Facebook, thanks. Good luck on the 4th - I have my 2nd appointment with rheumy on 17th jan and will have to tell him that in spite of the methotrexate I am getting worse every day. I didn't really believe the diagnosis at first - I believe it now!
Amazing. Happy story, I'm pleased for you and impressed. Good luck with dc2 x
Started out swimming as low impact and all I could manage then graduated to gym and cycling then running.
Even had to learn to swim!
Usual healthy diet stuff and losing weight really helped. Steroids and inactivity not good for weight gain.
Came of antiinflammatories first and then methotrexate with consultants blessing as bloods and X-rays were pretty good. Wanted off drugs as felt quite good and wanted to have kids.
Think withdrawal pains were mainly of a physiological nature.
Was talking of other drugs if worsened during pregnancy but so far so good. Did have relapse after DD1 but course of steroids and steroid injection helped.
Apparently breast feeding really beneficial got mum too.
Yes needalife congratulations and well done! Any tips on what diet/exercise worked for you? Tell me more about coming off the meds - was it the dr's advice or did you insist? Thanks for the hope!
Needalife that's fantastic! I will read your post out to DP in the morning.
Congratulations on your pregnancy
I was diagnosed at 25 with Psoriatic Arthritis 10 years ago having has psoriasis for previous 10 years. Was devastated.
Was barely able to walk,drive etc. Luckily had private healthcare and after a few medication regimes did not work was eventually really well with Methotrexate. No real side effects etc.
Changed my life, diet exercise etc and eventually came off all meds about 4 years ago. Have since run marathons,climbed mountains and am now pregnant with my second child.
Stay positive, I really does help.
Thanks wonkylegs yes have them done at hospital but happier there than with practice nurse despite parking charges as seem more efficient. It's not the nurse it's me! My big dread is that have been on mxt 10mg for 5 weeks now and seeing rheumy next week - and I've got worse not better so I'm thinking he'll either up the dose or put me on something else which will then mean starting again with the fortnightly tests!
Oh wow so much useful info on the inspire site - thanks again fergus
My blood tests are now 8wks. You start off with them closer together and after a short while if your results are ok they start to space them out usually working up to 8wk gaps. Do you have them at the hospital? If so would community monitoring (usually outside nurse at your GP) be easier? Check if they do this in your area? You usually can do this once you get you've been on the meds for a bit. I found it more convenient to do that for a bit, as it was much quicker (and didn't involve hospital parking fees).
i was diagnosed with PSA a few weeks ago
I feel devastated to be honest, it has completely pulled the rug from under my feet
I can't get my head round the fact that it wont get better, that there is no cure
I take lanasoprole with my anti inflammatories, I did have naproxen but they made me feel so ill with stomach cramps and diahorrea I had to go back to gp.
Have had x rays done and blood tests and got 2nd appointment with Rheumy on 4 feb
There is a really good page in Facebook which has some good advice
Ooh thanks Fergus that's inspiring - I'll check it out.
You see Agentfelix I think I could cope with every 8 weeks - that's reassuring, thanks
I have psoriasis. At its worst, it was 90% and i coukdnt dress easily, bend over, sleep etc. i was fed up with the treatments offered and decided to tackle it myself. I went on a juice fast for two months, mainly carrot, apple and beetroot juices. I lost about three stone (not ideal) but about a month after i ended the fast, it all disappeared. Topically, i found that shea butter was the most effective way to heal my skin. Even now i avoid the nightshades, but have slipped back into bad eating and it is coming back.
There is a great forum on inspire.com, check it out, i found it enormously supportive.
DP (don't know why I typed D'H' above) takes naproxen with omeprazole as well. He always gets a prescription for both.
His blood tests are about every 8 weeks I think.
He's had various symptoms from the different meds. Methotrexate gave him horrific headaches and sickness. His injection is painful sometimes, but any discomfort doesn't last for long. We've noticed that he picks up colds a bit more easily as well, probably due to the lowering of his immunity.
I'm a bit annoyed too! I was given 3 months of Naproxen without any protection...thanks for the info I will add it to my list for my rheumy next week!
I take omeprazole to protect my tummy & Etodolac which is a gentler but less common AI than Naproxin. DH is a dr (not rheumy) and he told me that all long term use of AIs should be accompanied by something like Omeprazole as otherwise you can end up with other problems (ulcers, chronic indigestion, stomach damage) he was really annoyed that I had to push to get it prescribed by GP!
That's interesting wonkylegs I have stopped taking my anti-inflammatories (Naproxen) as they were giving me terrible stomach pains in the night. I know there is some kind of 'tummy protector' that can be prescribed alongside - am waiting to see my rheumy next week to discuss with him as I don't have much faith in my GP.
Once I found a meds combination that worked for me (took a while) I generally feel fine on them. I used to find I had terrible nausea after taking mtx but somebody suggested taking it at night before going to bed... So you sleep through the worst of it ... and that really worked for me.
I have to self inject for the Anti-tnf which took some getting used to but bar feeling thirsty for a while after & getting a bit of swelling/itch at the injection spot (take anti-histamines and that helps)
My rheumy works on the theory that unless you generally feel better (as a whole not just RA bloods) that sideffects shouldn't put you off taking a meds if it's that bad then there is probably a better combination out there which would work & make u generally feel better not worse on a day to day basis. It just might take a while to find the right combination.
I actually have had bigger problems finding an anti-inflammatory that my tummy can tolerate than finding the scary DMARD
Thanks for all your replies. For those on medication, do you feel normal or grotty most if the time? And how often do you have the dreaded blood tests??
DH has psoriatic arthritis in his ankles, knees and elbows and his mobility declined dramatically as a direct result of stopping taking methotrexate, so please don't make any changes without discussing it with your Rheumatologist - not that I think you'd be as silly as he was.
This lead to him being retired from work at the age of 36.
That was 3 years ago and things are getting better. He's on leflunomide now and he has a humira injection every 2 weeks. The injection is expensive so not everybody gets funding for it, but it's the best thing he's tried.
He's had 2 arthroscopies, 1 on each knee. The first was successful and gave him virtually 100% relief for 2 years, the second didn't work at all.
He doesn't do anything about the psoriasis on his skin. His is very mild, just a bit around his ears and pitted nails so not really necessary.
The lowering of his immunity is an issue at the moment as he has a chest infection and cannot have his humira injection so is in more pain than normal.
If there's anything you want to ask him, let me know.
My doctor did suggest methotrexate once, but that was when my skin was very bad. I went to the Dead Sea instead and found it worked so well, I was clear for a year.
I stayed on the Israeli side, at the En Bokek resort. Lots of different priced hotels. (I'm not sure I could afford it now, mind you.) If you do go, look into booking the flights and hotel yourself, as the packages can be a bit of a rip-off. And I have heard that it is better value to go to the Jordanian side of the Dead Sea, btw.
DH was diagnosed with PsA about 10 years ago, aged 30.
Methotrexate did not agree with him, but he us on Sulfasalazine, Hydroxychloroquine, and Celecoxib.
He is worst affected in his hands and feet, and has had injections into his knuckles befpre now, but has been stable and leading a normal lief for about 5 years.
linerunner that's wonderful. Very brave - did the dr try and persuade you onto medication?
Also, whereabouts did you stay at the Dead Sea? Thanks!
Also wonkylegs good to hear your positive story, thanks. Will have a look at Arthritis Care website
I had the PA mostly in my hands (painful and stiff finger joints), and I do exercises and meditation every day and I'm hardly bothered by it at all. I type every day, for example.
I appreciate that this might be unusual, but I just wanted to say that there can be all sorts of outcomes. I've also met people at the Dead Sea who have had great results from the medication that wonkylegs refers to.
Thanks wonkylegs I guess I need to speak to a counsellor to try and come to terms with this. Can't carry on weeping and wailing everywhere! Guess I'm still shocked from the diagnosis.
linerunner what happened to your arthritis?
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