psoriatic arthritis

[Ronnied]

Hi everyone,

Have been reading all your notes tonight. I have PA and have been on sulphasalazine, leflunomide and methotrexate. Massive problems on MTX so now back on sulphasalazine. MTX caused liver problems and hair to fall out, which was very devastating. I live in England and have an excellent understanding GP and excellent Rheumatologist. I have arthritis in hands, feet, knees, elbows and neck. I get very tired and swollen, and hot, and headaches. I find this disease very frustrating as you never know how you are going to feel from one day to another, so booking outings etc is very difficult. I work 5 hours a day, and after a lot of time, my employers have now accepted my problems and are very good. Have recently upped the dose of sulphasalazine and end up sitting in a vest with the window open because I am so hot, I am normally a cold person so this is bothering me, as last time I had hot sweats was when the mtx was affecting my liver. Has anyone elsehad liver probs on sulphasalazine?

Ronnie

[mcjonval]

Hello Ronnie, Sorry to hear you are haveing so much trouble. My Husband has PA also and what you describe is the same as he has described. (for the most part) He changes from day to day also and it gets a bit discouraging to him too. He has never been on the medicines you have been on....but does get the hot flashes from MTX. he is on the highest dose of it and they are watching his liver which is so far very good. He has had trouble with cloudiness a lot lately, and also a pin like feeling in his eyes. It happens almost every time he take the MTX and is relieves a few days later usually. It is however very strange. Do you suffer from that too? Let us know how you are today. Keep well. mcjonval

[chellsbells]

Hi
Im a 20 yr old from Ireland, I was diagnosed with PSA in febuary of this year although Id symptoms from as far back as 2000 but I never did anything about it just used over counter pain relief, but this year I the morning stiffness and all pain became too much I used set my alarm for 6am so I could get up for 8 without anyone realising I was so stiff it was when away for a weekend with my mom when I cried all night in my sleep and couldnt move for 3 hours in morning she decided to make me go to the doctor, since then its been a whirlwind It affects almost every joint, ive psorisis on my scalp and a few skin patches its the pain and swelling and stiffness in my joints that really bother me I also have bowel bleeds and chronic anaemia asthma , hypermobility syndrome and history of ovarian cysts and aterial clots i had major surgery to correct this and since then it seemed to kick this off, I first was tried on difene 200mg a day then added deltracortil of 40mg reducking down to 5mg this helped settle it but once i came off the steroids it flared up again so the decided bcoz of this and errosive signs on my bone scans to start me on methotrexate, im on it 4mths but im still in agony and get really bad swelling and redness and pain, im now on MTX 15mg, 15mg of deltracortil(predenisol) 200mg difene a day 80mg oxycontin, oxynorm5 to 10mg as i need it and 400mgtramadol and 4gsolpodol 100amitriptyline 7.5mgzimovane 20mglexapro, 40mg nifedipine, 40mg nexium, im on stemitil to help the nausea, ive steroid creams nd lotions and folic acid to help control side effects of MTX yet im still losing my hair and getting lots of infections and even on iron injections twice a week im still chronically anaemic witha Hb of 10 which is high for me as it was 7.6 Im wondering if anyone has had similar problems or does anyone have any advice for me im v depressed and feel very isolated by this disease and would love to hear from ppl who understand where im coming from, thanks for taking the time to read my message hope to hear from some of ye.

also is anyone on humira?? my rheumotologist is talking about starting me on this also
and im waiting to see my pain specialist to review my pain meds adn get me better pain relief
i find heat pads very good too if that can help anyone
chell xxxxx

[Ronnied]

Dear mcjonval,

Bit fed up today as my drug dose has been doubled (two weeks ago) and my liver is playing up already. I feel rough and have bad pain in side. I have now on these disease modifying drugs for 3 years and do not seem to be getting anywhere apart from suffering from loads of side effects. My joints have all flared up and I feel taking these drugs are a waste of time now. I have been on them all, and cannot find one to feel good on. I have now asked my gp if I can have the steroid jabs instead. Awaiting for call from Rheumatologist. Just a nuisance all this pain all the time, and getvery low at times.

Hope you are both ok. Ronnie

[Ronnied]

Dear Chell,

Just to let you know that I use Betascalp on my head as I have psoriassis in scalp still. I have arthritis everywhere and have night sweats, and hot flushes on the disease modifying drugs. If you read my other posts you will see that I have tried all the drugs for arthritis now over a 3 year period and do not seem to be getting anywhere. My knees are very painful, my wrists were so bad they have given me a jab to help with the pain. I really want to get up on the dance floor and enjoy myself, and it is so frustrating not to be able to. I am so sorry to hear about all your probs. Hope you are feeling bit better today. If you want to ask me anything please do not hesitate.

Ronnie