Guest guest Posted November 24, 2005 Report Share Posted November 24, 2005 In a message dated 11/17/05 1:32:31 AM GMT Standard Time, hdtattoo61@... writes: Hi! I'm new but the pa isn't. I've had psorisis for about 30 years. The joint pain didn't start until about 15 years ago. Hi Kim, Welcome to the group. I'm glad that you found us. That's a downer, shelling out $398 dollers to be told you are healthy. I would have said you might be better trying to get another opinion but then you will need to pay out a similar amount. There are plenty of knowledgeable and caring people on this list so any questions, just ask. Someone will be able to answer you. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 Hello Sorry to hear that you have been dealing with the P for so long. I have had terrible problems with my skin since I was very young too. I just want to say it sounds as though your dermatologist is unfortunately seeing many of the symptoms and telling you right about seeing a rheumatologist and please, please change your mind about waiting to schedule an appointment with a good rheumatologist. The sooner they can get you started on the treatment that is right for you the better off you will be. Early treatment is so important to prevent further damage or at least prevent it from becoming such a rapid decline. I have been with my rheumatologist at Vanderbilt in Nashville TN for treatment of PA about four or five years now and although the pain is not gone completely I am happy with the results we have worked so hard together to get. This is why getting a rheumy ASAP is so very important. It may take them more than a few attempts to get you on the right medication or combination of meds for your system. Also you may not be happy with the first rheumatologist you see. I know for me personally it helped unbelievably when I changed doctors. Now I am comfortable with a physician who works WITH me and talks TO me instead of AT me. I hope you will not waste any time in searching out the right rheumatologist and treatment for yourself. You have my best wishes and prayers. P.S. I am only two years older than you and just like you and I suppose almost everyone else here as well, I never expected to be dealing with such a serious, dibilitating, painful and depressing disease in my whole life much less in my forties. I think it is probably a little difficult for any of us to accept at first. I thought my life was over for a few years there until I got with an excellent doctor and now I know it was just a new beginning. GOOD-LUCK ~Debi > > Hi everyone, > > I was diagnosed with P at age 3. I am now 46 years old and feeling the beginning symptoms of PA. Symmetrical sausage fingers, sore lower back in the mornings. > I'm in denial right now, even though my dermatologist has directed me to see a rheumatologist. > > Can't believe this is happening. I've read many posts and I feel for all. Can't bring myself to see a rheumatologist just yet. > > > --------------------------------- > Music Unlimited - Access over 1 million songs. Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Ok...you are the one to make us all feel thankful and YOU could teach us a thing or two about hanging in there. But I have to ask, did someone tell you that 50% of PA patients die within 5 yrs of getting diagnosed? Or did I misread that? I hope someone on here can give you some advise on how to handle this one. Prayers, -Betz Sharon <sharonm757@...> wrote: I have been diganosed with PA for 3 years now. My Rhemy gave up on me as far as treatment. I tried the sulfur drug,plaquenil, methotrexate which put me in the hospital. A little about my history I am a 3 time cancer survior! So when I first went to see my rhemy he said that I couldn't take the harsher drugs. When all else failed he said Enbrel or there wasn't anything he could do for me. I talked it over with my family doctor and she said NO WAY it would suppress my immune system so much that I would get cancer again and I would not survive it again. So I am currently taking Avinza,(morphine time released) and Lyrica for the pain but nothing to slow down the process. I have a 13 yr old son who I would love to see graduate high school but according to what I have been reaing 50% of people diganosed die within 5 years of being diganosed. I do not want to be one of those people. The only kind of excerise I can do is water aerobics which is hard to get to or even do with the pain that I have at times i can't do anything but lay in the bed. Is here something else that could be taking help fight this or am I just doomed? I don't give up easily the 2d me they told I had cance they said I was going to die and here I am 6 years later fighting another disease!!!!!!!! Anythng is worth trying this time. Thanks, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Dear Sharon Where did you read that 50% of people with psoriatic arthritis are dead in 5 years or did I misread what you wrote. Psoriatic arthritis is not a disease that usually kills. I have never read that and have done a lot of reading. You may want to get another opinion or several other opinions because there is a lot that can be done to alleviate the suffering of the disease and I think that the percentage of people who get cancer from or at the same time as taking there drugs is so small that I would be more concerned with being comfortable than the small percentage of chance of having a problem. I must remember too that if it is you who gets the problem statistics don't mean a thing. Good luck Anne [ ] PA I have been diganosed with PA for 3 years now. My Rhemy gave up on me as far as treatment. I tried the sulfur drug,plaquenil, methotrexate which put me in the hospital. A little about my history I am a 3 time cancer survior! So when I first went to see my rhemy he said that I couldn't take the harsher drugs. When all else failed he said Enbrel or there wasn't anything he could do for me. I talked it over with my family doctor and she said NO WAY it would suppress my immune system so much that I would get cancer again and I would not survive it again. So I am currently taking Avinza,(morphine time released) and Lyrica for the pain but nothing to slow down the process. I have a 13 yr old son who I would love to see graduate high school but according to what I have been reaing 50% of people diganosed die within 5 years of being diganosed. I do not want to be one of those people. The only kind of excerise I can do is water aerobics which is hard to get to or even do with the pain that I have at times i can't do anything but lay in the bed. Is here something else that could be taking help fight this or am I just doomed? I don't give up easily the 2d me they told I had cance they said I was going to die and here I am 6 years later fighting another disease!!!!!!!! Anythng is worth trying this time. Thanks, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Hi, yes, I was wondering about that too. I sure hope that is wrong. Never read it before, whew !! Thanks Jeanette [Editor's Note: It is totally without foundation. Kathy F.] RE: [ ] PA > Dear Sharon > Where did you read that 50% of people with psoriatic arthritis are dead in > 5 > years or did I misread what you wrote. Psoriatic arthritis is not a > disease > that usually kills. I have never read that and have done a lot of > reading. > You may want to get another opinion or several other opinions because > there > is a lot that can be done to alleviate the suffering of the disease and I > think that the percentage of people who get cancer from or at the same > time > as taking there drugs is so small that I would be more concerned with > being > comfortable than the small percentage of chance of having a problem. I > must > remember too that if it is you who gets the problem statistics don't mean > a > thing. Good luck Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Thanks Kathy F. Jeanette Re: [ ] PA > Hi, > yes, I was wondering about that too. I sure hope that is wrong. Never read > it before, whew !! > Thanks > Jeanette > > [Editor's Note: It is totally without foundation. Kathy F.] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Sure hope so - or I'm 15 years past due(g).... - Editor's Note: And I should have kicked the bucket 36 years ago, LOL. Kathy F.] > > Hi, > yes, I was wondering about that too. I sure hope that is wrong. Never read > it before, whew !! > Thanks > Jeanette > > [Editor's Note: It is totally without foundation. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 Hi all, Been reading that vitiman D may be helpful for PA, does anyone out there take it & what dose are you using, also started taking mtx 20mg per week about 6 weeks ago and so far have not had any relief from the pain & swelling of PA., how long before relief does it usually take, I'm also on sulfasalzine, prednisone, celebrex, folic acid? Have a great day....Armand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2007 Report Share Posted November 4, 2007 I have been on MTX for almost 4 years now. I take 22.5mg per week by injection (0.9cc). I find that the timing of folic acid is very important in how well the MTX works. For me I take MTX on Sat, and 1mg of folic on Tues night and 3mg of folic on Wed. If I leave folic until Thursday it seems to reduce the MTX on Saturday. Too soon - same thing. Liver functions have been completely normal. I also drink lots of fresh OJ which has naturally occuring folic. If you also take vitamins you have to start watching how much folic you are taking. When I did add it all up I was over 7-10mg a week including the supplements, so I cut back on the vitamins with folic. On the vitamin D - I started taking 1000units each day and as well take a couple of the name brand Omega-3-6 complexes. Maybe I am just lucky but I have cut down the NSAID's to about 3 per week and this week have had none. Four months ago I was 2 per day. The other thing that I have done is switch to a much higher fibre diet. When I first got PA and before I started MTX 4 years ago I was almost immobile. It was very difficult to get out of a chair and very laborious to climb stairs. Today, I am 90% symptom free and am able to play street hockey with my kids. Now, I made a number of changes at once, so I cannot be sure which one is working - but in the end it does not matter. It shows that there is hope and the disease can be managed. Regards, Glen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Sherry: I had to go off Enbrel twice this past summer for minor eye surgery. Was off it for 2 weeks each time and really couldn't even tell. My doctor has said that studies are now being undertaken by the mfg to see how long people can go in between shots if they're asymptomatic. Joanna Hoelscher Quote Link to comment Share on other sites More sharing options...
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