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Medical Forum / Diseases and Disorders / Arthritis / September 2006Psoriatic Spondylosis Arthritis
Hi, I've been diagnosed with PSA and for the past 4 years, since the birth of our daughter, I've been going thru hell. It has nearly destroyed my sacroiliac joints and I'm on: MTX, Arava, Valpro 700, Oxycontin 80mg and now being changed over to Fentanyl 75. Breakthru pain is the worst and some days, it feels as if my hips/pelvis have been smashed with a baseball bat. It is sooo hard to walk most days and hydrotherapy doesnt really do much. There's so much I want to be able to talk to people about this disease so any input would be greatly appreciated as I feel like Im going mad. thanx ursh > I've been diagnosed with PSA and for the past 4 years, since the birth > of our daughter, I've been going thru hell > There's so much I want to be able to talk to people about this disease > so any input would be greatly appreciated as I feel like Im going mad. What is your age? Who made the diagnosis (what type of doctor)? Do you have the HLA-B27 genetic marker? Blood test? Rheumatoid factor? Uric acid level? X-rays to show bone changes over those 4 years? Physical therapy? (other than aquatic you already mentioned) Occupational therapy? The Arthritis Foundation http://www.arthritis.org has a Medical Information Series of Pamphlets which includes: "Ankylosing Spondylitis" and "Psoriatic Arthritis" ... When I die, I'm leaving my body to science fiction. > What is your age? Im 31 > Who made the diagnosis (what type of doctor)? Rhuematologist; Pelvic Surgeon; GP; Orthopedic Surgeon..... > Do you have the HLA-B27 genetic marker? Unfortunately Im B27 negative so Im not allowed to receive the brand new medication specifically for this type of arthritis. > Blood test? > Rheumatoid factor? > Uric acid level? > > X-rays to show bone changes over those 4 years? Because they have rated my arthritis as 'aggressive', I require CT scans every 4 months which continuously show changes to the SI joints > Physical therapy? (other than aquatic you already mentioned) I have an exercise plan from the physio's, but this constantly flares me up so they now limit what I can do. > Occupational therapy? Apparently there are 5 strains of Psoriatic Arthritis and they have labelled me as having the rarest one, esp in females, and the one that is very hard to treat. Based on my CT's, you would think I wasn't on any meds due to the constant deterioration of the SI joints. I've had psoriatic spondylitis for 22 years. My spine has fused up to the second vertebrae from the neck. My rib cage is also fused. The good side of this is that the pain goes away with the fusion. I'm now in remission. I just had surgery on my left hand to correct my bent fingers. I'll do the right hand when the left hand is back to normal. I've used all the meds you mentioned. What really worked for me, and could have led to the remission, was Enbrel. Similar drugs are Remicade and Humira. My doctor think Humira is probably the best. The drugs are collectively called biologics and are expensive. I self injected Enbrel once a week at $300 an injection. Remicade and Humira cost about the same-- about $15,000 a year. It takes a while for Enbrel to work, but all the pain went away and the disease stopped progressing. Ask your doctor about these drugs. Horace Enea > Apparently there are 5 strains of Psoriatic Arthritis..... There are 3 major forms of this arthritis, all of which may cause only minimum discomfort. In the most common form, only a few joints, mainly fingers and toes, are affected. In the second type, "classical psoriatic arthritis," the joints at the ends of the fingers are inflamed, and the fingernails' become thickened and pitted from psoriasis. The third type of psoriatic arthritis occurs primarily in the spine, causing the condition known as spondylitis. The sacroiliac and lumbar joints at the base of the spine are affected, and the symptoms are the same as those of ankylosing spondylitis. Some people with this type of psoriatic arthritis eventually do develop A.S. The Arthritis Foundation http://arthritis.org Psoriatic Arthritis What Is It? What Are the Symptoms? What Causes It? Treatment Options Who Is At Risk? Resources and Suggestions Visit The Arthritis Store To Request The FREE Psoriatic Arthritis Brochure. National Psoriasis Foundation 6600 SW 92nd Avenue, Suite 300 Portland, OR 97223 1-800-723,9166 http://www.psoriasis.org We Also Suggest: Consult your physician for appropriate diagnosis and treatment. Your local Arthritis Foundation chapter can provide a listing of physicians who specialize in arthritis-related conditons. ... Dont' lend money. It cause amnesia. > > Apparently there are 5 strains of Psoriatic Arthritis..... > [quoted text clipped - 12 lines] > psoriatic arthritis eventually do develop A.S. > The Arthritis Foundation Unfortunately I have the third type, which has basically destroyed my sacro-iliac joints and sacrum. This in turn is causing the worst muscle waste that I have ever experienced, thus the reason they are once again, attempting to try hydrotherapy. I now also have a form of femur/hip dislocation on the left side as it can't seem to cope anymore with the weakness of the right side. ursh > Apparently there are 5 strains of Psoriatic Arthritis and they have > labelled me as having the rarest one, esp in females, and the one that > is very hard to treat. Based on my CT's, you would think I wasn't on > any meds due to the constant deterioration of the SI joints. I was talking to someone we know this Sunday after learning he has this strain of PA, though it doesn't manifest quite the same as yours does. (much back trouble, but his hips and knees are worst) He says his RD (actually ours - we go to the same guy) says it looks like Humira might be even more effective for PA than Enbrel. He's looking at trying it if Enbrel doesn't soon kick in again after going off it for his recent surgery. You might want to talk to your RD about it. You shouldn't be denied it by your insurance, it HAS been approved for PA. For some reason, more stubborn cases of PA don't seem to respond well to just one DMARD. I don't remember if you mentioned whether you'd been on two at the same time or if they were sequential. I've been on as many as three DMARDs at once and I know someone who is on 4. It may be that Humira with something else - mtx or Arava, most likely - would be more effective for you. I hope something works for you soon.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare I've got an extra shot of Humira sitting in the fridge. Wish I could send it for you to try, Nann. I don't now and never have had PA. What the prob. I have with Humira is it takes away the benefit of my Neurontin completely and since Neurontin is all I have for pain...well.... It's been a month and a half since my last injection and I'm just now beginning to come outta the storm, so to speak. The nerve pain was awesomely bad. It's a listed side effect and I got it in spades and clubs and diamonds. Hope you get to try it and I hope I get something better for my poor not PA bod. Hugs from Rosie Signature"If you wanna get it done, you gotta fight for yourself." -- Meat Loaf, Bat Outta Hell II > > > Apparently there are 5 strains of Psoriatic Arthritis and they have [quoted text clipped - 18 lines] > > I hope something works for you soon. Oh Rosie, I am sending so many none painful hugs to you. I feel for you sweetie and hope you can get something that will work. I know this has not been easy on you. I think of you all the time and hope things go better for you soon. SignatureLove and hugs Jo (\__/) .~ ~. )) /O O ./ .' {O__, \ { / . . ) \ |-| '-' \ } )) Warning: squirrels. .( _( )_.' '---.~_ _ _& > I've got an extra shot of Humira sitting in the fridge. Wish I could > send it for you to try, Nann. [quoted text clipped - 15 lines] > > Hugs from Rosie > > Apparently there are 5 strains of Psoriatic Arthritis and they have > > labelled me as having the rarest one, esp in females, and the one that [quoted text clipped - 15 lines] > DMARDs at once and I know someone who is on 4. It may be that Humira with > something else - mtx or Arava, most likely - would be more effective for you. Hi Nann, Im not sure what DMARD is.......silly I know, but they have me on MTX, Arava, Valpro, Fentanyl 75, Oxycontin 40. I have already tried things like Prednisolone, Sulphasalazine, etc all to no affect. It is being really stubborn and I guess I am no so sick of hearing all the specialists stating that they have never seen a case like mine before, in the way that it just will not seem to respond to any meds given. Im even getting forms of bursitis in my shoulders, hips, etc, which I should not even be getting due to the meds I am on as all of this should be reducing inflammation, not creating more of it....... Sometimes I really feel like I am going insane and they also make make me feel like I am a hypocondriac....even though I have all the medical proof, ie imaging, blood results. I guess I just dont know what to do anymore and I get really cross because I am still so young and I feel helpless that I can't do much with my daughter. Ursh The sulphasalazine, mtx and arava are all dmards. Dmards are disease modifying drugs and actually work on the disease. Prednisone works on the symptoms but does not actually stop the disease process. You are not going insane and are not a hypocondriac. Hang in there. Kelly >> > Apparently there are 5 strains of Psoriatic Arthritis and they have >> > labelled me as having the rarest one, esp in females, and the one that [quoted text clipped - 44 lines] > > Ursh > The sulphasalazine, mtx and arava are all dmards. Dmards are disease > modifying drugs and actually work on the disease. Prednisone works on the [quoted text clipped - 3 lines] > > Kelly Cheers for that Kelly. Im new to this abbrev stuff so oops on my behalf. Well, none of the Dmards are working, in fact, none of any of my drugs appear to be doing their job. Whatever you do don't give up. There are lots of meds and med combinations coming up - if you can take mtx you are already ahead. If enbrel does not work there is humira, rituxan, ornencia, cyclosporine, antibiotic treatment (doubtful though), penicillamine, gold, remicade, arave (oops sorry - you tried that one) and many many coming down the tube. Some others are clinical trials - the clinical trial I was on once unfortunately closed due to too many drugs coming down the tube and not enough money but it was a great 6 months - have to trust the drug company and your test committee thoroughly - I did both. So never give up -it takes time for some of those to work (up to 6 months sometimes) and to try the combinations etc but you will get there. All of us have to get there. In the meantime don't forget rest - you and your joints with splints etc., pacing yourself, ice, heat, exercise - yes even if it is only a couple of range of motion a couple of times a day, levers and aid - levered door handles, reaching sticks, undercounter jar openers, raised toilet seats, grab bars, canes. High chairs that are easy to get up on. You get the idea. There are lots of ideas in the Arthritis Self Management Plan - see if there is a local Arthritis Foundation giving the class - it was invaluable. So stick around and never, never, never, never give up. I know because I have to remind myself of this several times a day - I walk the walk. Kelly >> The sulphasalazine, mtx and arava are all dmards. Dmards are disease >> modifying drugs and actually work on the disease. Prednisone works on [quoted text clipped - 8 lines] > behalf. Well, none of the Dmards are working, in fact, none of any of > my drugs appear to be doing their job. My apologies for diving into abbreviations without filling you in on them first. I usually try to be better about that, but some days it gets past me. I see you've already been filled in on that point by others though. I failed to notice before that you are posting from Australia. I don't know what the status of many of the new drugs is currently in your part of the world. As others have said, don't give up hope entirely - there are new meds coming out all the time now and your miracle may still be out there. The situation with your SI joints sounds horribly painful. I lucky that my back problems have all been of the slipping and sliding around variety rather than deterioration such as you have. That much HAS taught me to be much more sympathetic towards people with major back problems. Maybbe some pioneering surgeon out there can come up with sumething to help you. It's a nice dream anyway............... I know you want to be doing so much more with your daughter. The parents here have plenty of stories of their own about getting through that feeling. I haven't had to deal with that, but my dad was in that situation, especailly with me, the youngest. While I obviously wish his joints had allowed him to do more, I never felt cheated. i had a happy, loving home with parents who did what they could with me and, ironically, taught me how to live with chronic illness. That is hte best hing you can do for your daughter - give her a happy, loving home. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > Hi Nann, > [quoted text clipped - 15 lines] > > Ursh Dear Nann, You sound like such a warm and caring person that if I could jump thru the computer and give u a hug, I would. Yes, I do feel like we are wwwaaayyyy behind on the medical side of things here in Australia. When I read about all the meds everyone is advising me on, and go to look them up, they r not avail in Aust...typical!! Dear Nann, <snip> "Yes, I do feel like we are wwwaaayyyy behind on the medical side of things here in Australia. When I read about all the meds everyone is advising me on, and go to look them up, they r not avail in Aust...typical!!" hi ursh! i have a friend in south australia. she once told me that australia does have a lot of the same drugs as the u.s.a.. but in australia, our drugs are called by different names there, which makes it difficult to look them up and even find them. if that is the difficulty you are having, perhaps a pharmacist/druggist in your area might assist you in translating? kate Kate wrote: > hi ursh! > >.... she once told me that australia does have a lot of the same drugs > as the u.s.a.. but in australia, our drugs are called by different names > there, which makes it difficult to look them up and even find them. That is like looking for NEURONTIN -- brand name - and discovering that it's "gabapentin." Every single one of our drugs have both a brand name and a genetic name. FOSAMAX = Alendronate Sodium SULINDAC = Clinoril CASODEX = bicalutamide ... 98% of all dead owls don't give a hoot! > Dear Nann, > [quoted text clipped - 3 lines] > When I read about all the meds everyone is advising me on, and go to > look them up, they r not avail in Aust...typical!! It can be so very nice just to talk to others who know how you feel! BTW, you all aren't behind in Australia, just on a different schedule. There are actually some meds that are approved there or in Europe before they are approved in the US. Each country has its own procedures and drug companies have their own agendas and it does get a little too interesting at times. Of course, we weren't so aware of this in the past, but with modern communications we know so much about what is happening elsewhere. I suspect drug approval may happen more quickly thanks to this as patients put pressure on local officials. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > Hi, > I've been diagnosed with PSA and for the past 4 years, since the birth [quoted text clipped - 8 lines] > thanx > ursh Have they thought about using a bazooka like cyclosporin, or a combination of cyclosporin and one of the other drugs your on (or even mycophenalate)? I read your reply to firechief and it sounds like it might be time to do some experimentation (which ended up letting me put off a very very risky transplant for at least a year now from another autoimmune disease). It's an out-there option, but you can use less of each drug to get a better response overall with some autoimmune problems. Given that you're already on a downward slope and they're not offering many alternatives, see if they'll try it out. You might want to suggest that if it works they could publish you as a case study. For my illness, cyclosporin and mycophenalate (a new anti-rejection immunosuppressant) /in combination/ produced remarkable results. I'm also getting far fewer problems from the 'undifferentiated spondyloarthropathy' than I was having before adding mycophenalate to the mix to treat aplastic anaemia (can't take MTX when you're already fighting bone marrow failure, though they do use it as part of the transplant process). Regards, Ari Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ ursh, I wish I could offer you something that would help you. I just don't know. It sounds like you are trying all you can do. Are the docs talking about hip replacements? Could this be an option? I hope you get some much needed relief soon. I'm sorry you are in so much pain. debbie m. > Hi, > I've been diagnosed with PSA and for the past 4 years, since the birth [quoted text clipped - 8 lines] > thanx > ursh Ursh, Wow, it sounds like things have been going really tough for you. I'm sorry 'bout that. I have Ankylosing Spondylitis...so I can relate to a little of what you are saying. I don't have much to offer other than wishes that things start to look up for you soon, Charlene > ursh, > [quoted text clipped - 4 lines] > > debbie m. Hi Deb, I wish they could do a hip replacement, but it is the sacro-iliac joints that are affected. They advised that they could have done a fusion, but now the left side is also damaged and so that squashes that idea. If a fusion was possible, I would be laid up in a hospital bed for 6 weeks, not allowed to move at all, and then it would take approx one year before I would be able to walk again (which is basically what happpened after the birth of our daughter). Yet if someone was to have a hip replacement, they have them up and walking the very next day...... go figure that one out!! ursh Well, I went to my GP today and advised that Im still in a gr8 deal of pain and I don't really want to be taking oxycontin and the patch, so he has now changed me over again. The doc changed me today from Durogesic 75 to Durogesic 100 which is the max amount of Fentanyl u can get patch wise. Has anyone else been on the Durogesic 100 or Fentanyl 100 patch?? What were your responses to this patch and did you have any side effects?? Thanks Ursh I've been on the Duragesic patch for about four years, starting out at the 25 size, and am now on 125. Just because the biggest patch made is 100 mcs doesn't mean that that's the max dose. You just combine 25, 50, and 75 (?is there a 75?) and 100-size patches to adjust the dose. I use one 100 and one 25. I haven't really had any negative side effects from using fentanyl. My head is clear, and other than the fogs I get from Fibro and CFS, I don't ever feel doped up or high. Matter of fact, lately all I've been feeling is PAIN! I think I'm waaay overdue for a dose increase, but whenever I bring that up to my PM, I get invited to find another doctor! The Duragesic 'brand' patch is a booger to deal with -- it doesn't stick on very well by itself, so I've always had to use Scotch STORAGE (not Packaging) Tape to pull any loose skin, skin oil, body lotion, whatever is on my skin, OFF. Then I cover the Duragesic patch(s) with a 3M Tegaderm clear bandage that completely overlaps the edges of the patch. The Mylan brand generic patch is smaller and sticks on by itself better, but I don't feel I'm getting the amount of relief I should from it. And I still use the tape-and-Tegaderm routine to keep it on. Good luck -- let us know how it's working. Ginnie >^..^< You can catch more flies with funny than vinegar. __________________________________ > Well, I went to my GP today and advised that Im still in a gr8 deal of > pain and I don't really want to be taking oxycontin and the patch, so [quoted text clipped - 8 lines] > Thanks > Ursh hi ursh, i've no expertise, just hugs. (((((((((((((((((((((ursh)))))))))))))))). kate Hi, I've been diagnosed with PSA and for the past 4 years, since the birth of our daughter, I've been going thru hell. It has nearly destroyed my sacroiliac joints and I'm on: MTX, Arava, Valpro 700, Oxycontin 80mg and now being changed over to Fentanyl 75. Breakthru pain is the worst and some days, it feels as if my hips/pelvis have been smashed with a baseball bat. It is sooo hard to walk most days and hydrotherapy doesnt really do much. There's so much I want to be able to talk to people about this disease so any input would be greatly appreciated as I feel like Im going mad. thanx ursh |
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