No where to go; No way to get there

hi. I am a blogger from way back. I have a blog ( that I've maintained since 2009....however that blog is more general and is more focused on another illness I have. The PsA however is gradually taking the lead as far as being the most destructive of my diseases and the one that causes me the most difficulty in adapting to it. I've had PsA since.....maybe since 2005 when I first started making the rounds of doctors looking for a reason why my fingers were twisting and getting huge knobs on the joints. I was told by one that I have OA and there's nothing they could do for me....however when my spine and my hips began to be painful as well, I dumped that doctor and went to another. This doc took one look at my hands and listened to my tale of woe and pain and he said to mel, "Listen to me. You have a bad case of a serious disease. This disease will change your life. We must treat it very aggressively." And he sent me home on a cocktail of five strong medicines including humira and MTX and prednisone. My husband looked at those medicines and said, "You don't need that stuff. There is nothing wrong with you. Those are toxic meds and here you eat all organic and you will pollute your body with those toxins??" Well he said the magic words to make me not want to take these meds. So I didn't take them and I never went back to the doctor.

Well,if you know anything about this disease, you know that was the stupidest thing Icould have done....since early treatment is so critical. Before I knew it, EVERY joint was swollen and hurting and my hips were so bad Icould not walk nor sleep. I had bilateral hip replacements,getting MRSA in one of them. AFter that was Healed up the hip kept dislocating which is, I am convinced, a hell worse than anything else this earth offers. So I had tohave two revisions on that hip--the last being on Jan2nd of 2013. Today I almost dislocated it....This joint that is supposedly dislocation proof. So now I'm stuck in bed for a few days.

I went to a new rheumy last week because I can nolonger get to my Dr.Wonderful in Manhattan. And this rheumy did not want to take the chance of prescrbing a Biologic like the Enbrel Iwas on....because I get life-threatening infections at the drop of a hat. Instead he put me on Prednisone and already itismaking me too hungry. I had been trying to lose weight and since Ive been on Prednisone I've regained three pounds I'vedecided that it is notworth gaining weight, since the relief it was offering was minimal. So now, I either have to find me a brave rheumy or go completely unmedicated. It's a hard spot to be in because almost nodocs will be willing to take this chance....and yet my spine isfalling apart.My shoulders and elbows are a mess. I couldn't find a doctor willing to risk the infection by operating on my arms. I seriously believe the decision about my treatment should be mine but in these litigious days no doc is willing.

That's pretty rough. Here is the only thing I wanted to offer up. . . Prednisone is ideally used for short term acute situations, and not ideal for long-term use. If you're in the NYC area, would you be willing to try a teaching or research hospital? You already know that you need to slow things down.

HI Stoney, If I could get into Manhattan I could go to my old rheumie and there would be no problem because he was willing to prescribe Enbrel (along with an antibiotic I took daily to avoid infection. The problem is I'm almost 3 hours from Manhattan and no longer have a person who is willing to drive me there. I used to have a guy who drove me but he is no longer available. I'm no longer able to drive myself and no longer have a car...

I was wondering if your old Rheumy would be willing to do a letter to your new one, or find another new one stating what your treatment is..

Doctors are sometimes reluctant to change another specialists course of treatment if it is working. Just a thought.

Perhaps there is a major hosptial you might be able to try that has a Rhuematology department.

Please read previous posts about Prednisone or steriods or do an internet check on the long term affects of Prednisone as there are serious irreversible side affects for long term use.

I don't think that a letter would change this rheumy's mind. When he heard that I got endocarditis shortly after beginning Enbrel, he pretty much made up hismind not to prescribe it. He did just change my meds to arthrotec so I will be beginning it tomorrow....Hopefully it works well.