What A Long, Strange Journey It's Been.

I am a 59 yr old woman, diagnosed with psoriatic arthritis (PSA) when I was 25, 34 years ago. The disease has progressed over the years, at first slowly, but then more rapidly with age. During Chemotherapy for Breast Cancer, the Chemo killed the psoriasis, and arthritis symptoms for about a year, but then it came back with a vengence. I am now to the point that all of my joints have been affected, even my rib cage and spine are full (per my last bone scan).

Back in the 80's when I was first diagnosed, Ibuprophen under the brand name Motrin was the prescriptive choice of the University of Minnesota. I was taking an astromonical 3600mg a day, and finally burned out my stomach lining. Then I was switched to Methotrexate, but at the higher dosages, it made me sick to my stomach. The Docs threw Mobic at me and I immediately broke out in hives. I'm allergic to Sulpha, it seems, and this really narrows down my prescription choices. The very best I have ever felt since I got hit with this disease, was when I was piggy backing Methotrexate and Vioxx. I LOVED Vioxx. Yep, it damaged my heart, but I sure did feel good at the time. But THEY took Vioxx off the market, and I was back to square one, taking OTC ibuprophen. Yep, I ulcerated my stomach again. So, After I got over my temper fit from losing Vioxx, my cherished GP (I have the best in the whole wide world) put me on Humira. I injected myself once every other week, and it was OK. I did not feel symptom free, by any means. I still had Chronic pain in my hands, shoulders, and hips. Then one morning I was scooping out the litter box and I felt a sudden pain on my upper lip. There was a small red mark, and it felt swollen. By dinner time, I looked as if I had been punched in the mouth. When I got up the next morning it was swollen, red and oozing. I thought it was a mega cold sore, but I thought my GP should see it, it was that big. He gave me some Viral salve, told me it was Herpes simplex, and told me it would be better by the next day. NOT> The next morning ,it was swollen so huge, I COULD SEE MY LIP ! It stuck out further than my nose. My husband took me to the ER, and found that my blood level was a 4. I had NO immune system, and a simple infection was killing me. I went into isolation, was given transfusions, and was in the hospital for 10 days. That was it for the Humira. My GP and I decided that I should seek help from a Rheumatologist. She explained more about the Humira, how serious my event was, and No more Humira, ever. She also diagnosed me with Fibromyalgia. She precribed Cymbalta for the Fibro, and Remicade for the PSA. Remicade is administered just like Chemo, intravenoiusly for 4 hours, but only once every six weeks. This drug did quite well for me, however, the astronomical cost of this medication caused me such financial hardship and emotional anxiety that after 15 months, I chose to end the Remicade therapy. It really is a wonder drug, but the financial ramifications were traumatic. Back then it was approximately $5600.00 per treatment. That's for the drug, and the administration of the drug. I just couldn't take it anymore.

So now I'm on Enbrel. I've been taking Enbrel for almost three years now, and so far so good. My psoriasis is minimal, and my chronic pain is generally manageable. After heavy exertion, such as the Christmas Holiday, I have to supplement with Vicodin until the pain subsides to a manageable level. My entire body is affected, every joint in my hands and toes, and now my spine and rib cage. I find that swimming is the only excercise I can get without causing major trauma to my body. I'm becoming less mobile, and these days my gracious husband must do the household chores.. I have neuropathy from Chemo as well, so my level of chronic pain is very high.

I guess my question for the group would be if you too, find that the disease attacks your body with extremely high levels of pain for a certain time period, say three of four days, and then tapers back to its normal chronic level? I call them attacks, I don't know what else they could be. Anyone else have these? Thanks.
An Ep User An EP User
1 Response Jan 11, 2013

You poor woman. What a lot you've had to deal with! Yes, I believe that these dreadful relapsing and remitting phases are all part of the joys of Psoriatic Arthritis. I have not been professionally diagnosed with this disease as yet, but am certain psoriatic arthritis is what I have suffered from for 23 years. Bear with me as I tell you why I have just taken things into my own hands by going out of where I live to see a research rheumatologist in Sydney with the hope of some support and ideas. I've had severe spinal and feet pain for all this time, with the last three years spent in my bedroom, predominantly alone. Last October I started on foot surgery, with three more they reckon, as my tendons have huge complete tears the length of the tendons themselves and my metatarsil bones have collapsed also, along with plantar fasciitis, morton's neuromas and on it goes. The two rheumatologists I've seen have smirked when I've described the terrible burning in my feet (as the tendons tear apart and the bones collapse), telling me I might be "hypersensitive to pain"!!. I believe my care has been grossly mismanaged and that I have been misdiagnosed for years and so I'm taking myself (well, not myself obviously as I could never drive that far with my feet the way they are) to see another rheumatologist in Sydney in August for certain confirmation, I expect. Not one person has asked to see my scalp which has been covered in sores form psoriasis since I was three years old (I am 48 this year), my feet and spine have gone from bad to worse and I have had to stop even part-time work 5 years ago, as can barely walk or stand to even do my dishes or make a meal. I have not been able to shop for myself for years and yet they treat me as though I'm exaggerating my symptoms . My G.P. of 25 years has always told me she felt I was falling between the cracks of diagnosis and that she believes I have seronegatyive rheumatoid arthritis. I just happened to look it up the other day, after trusting the specialists opinions and ridicule for years and saw the sub-heading of psoriatic arthritis, which I'd never heard of. I investigated because of my scalp thing all my life and voila, there it was, everything I have had in my peripheral joints, yellowing, thickened, toenails with deep transverse ridges, the horrible inflammation in my spine, eyes like conjunctivitis for about 8 years and very fast heart rate in recent times, which I have to get a 24 hour heart monitor for in the coming weeks.....it could have been written about me, except for the "sausage fingers"......I don't have those. Do you know of any other people who don't have sausage fingers as part of the disease.These guys have told me I was just fat and that there was "nothing wrong with my feet", even after viewing the exact same scans that the orthopaedic specialist looked at and got tears in his eyes. He sent me straight to a friend for surgery and didn't charge me for the appointment and put his arm around me, telling me he was amazed at how much was wrong with my feet! It's hard to believe, but I've been ditched by nearly all of my friends as time has gone on and my isolation has been necessary due to lack of mobility and even family have been less than understanding because I've never had a specific diagnosis which explained it all. I've been told I had osteoarthritis, gout, fibromyalgia, degenerative, inflammatory arthritis...you name it...all the things that psoriatic arthritis is usually misdiagnosed as, I've now found out. I could go on and on, but I won't bore you to tears. I also have a blood-clotting disorder (which seems to make the pain worse...I only know this because following last year's surgery, I had to inject clexane for my blood clotting problem and noticed a significant increase in the pain levels when it was stopped as I started to "walk") . I have a kidney disease also and the doctor is worried about my kidney function presently because of the use of mobic for years (mixed with the kidney disease), which I've used just to walk and stand at all, but geez you've got to have some quality amidst the pain, both physical and emotional, don't you? Years ago the rheumatologist tried salazapyrine (sulphur) I think it was called and my pain completely eased off (mind you, it was not at this level then), but I was also allergic to it and kept vomiting which got worse and worse the longer I was on it. He didn't want to use Methatrexate I think it was called, because of my kidney disease. Years ago, I was not overweight as I loved exercise so much that the same man who's basically called me a fat liar in recent times, wanted me to do videos for his other "lazy"patients because I was such an inspiration. He has forgotten all this as well as his manners over the years and I certainly don't think much of his attitude these days, along with his other colleagues in the old boys club who are ready to retire. I hope this young research rheumatologist in the big smoke is more interested as he is kind of my last hope in all of this. From what I've now read though, it could be too late for mine as no aggressive treatment was worked out and administered in the early stages of the disease, which sounds quite imperative. My feet have literally fallen apart and my spine is absolutely killing me to do this now...sitting and standing aggrivate it and it feels like it's crushing together, my knees suck and have lost all synovial fluid and most of the cartilege, my shoulder tendons are weak and tear easily if I overstretch. When I swim, it feels great doing it, but an hour or two later, my whole spine will go into complete spasm for days, making even my old love of laps a very painful form of exercise. Even doing little 1 kg weights lying down as instructed by an exercise physiologist, with the support of the bed, is too much for my judas spine. It's all incredible, I know...but truth is always stranger than fiction, isn't it? Now that it seems to have gone to eyes and heart, I believe I probably am in the severe category in latter stages of psoriatic arthritis. My 24 year old son has always had severe psoriasis in horribly visible spots for him to deal with, so I'm hoping to god his joints don't start hurting. At least if I can actually find someone who gives a rats, it may help his future!!

Sorry to ramble, but I've never done this before and written it all down to tell someone...lucky you! I wish you luck with your flare-ups and disease progression and hope you know some pain-free days in your life to remind you how great life can be. At least when the pain is not as bad as normal some days, we can appreciate things much more than others and take joy in very simple tasks as a luxury to do rather than a chore!
Please let me know anything that may be of assistance and any others you know don't have the finger thing. My hands are sore but nothing like the feet.

All the best,

Brigitte