Hi I'm Newbie/PA

[kcobain]

Hi all! I just found this forum and wanted to post/vent. Please forgive me if this sounds like a whine...it's not meant to be. I've been diagnosted with PA since the late 90's. It seems to effect my right side more than my left. The mid joints on my right hand are extremely swollen and very weak. Now the pain is traveling to the upper finget joints by the nails. The mid joints on my thumb and pinky are distorted more than the other fingers but all are painful. My neck, shoulder, hip donw to the knee seem to be recently effected and painful. I seem to be in one huge flare up constantly. The PA also zaps my strenght and energy to the point that I can do much because of my constant exhaustion.
OK here is the whine. As of two yrs ago we have been self- employed. We had been covered by COBRA following my hubbies move to his own business. I have become UNINSURABLE in the state of FL! No one will give me health insurance because of the PA. I was under the care of a Rhumi Dr for a while when we were covered. I was on MTX which did help but it made me so sick for 2 days it seemed the cure was worse than the disease at first. I can afford to go to my regular Dr but I can't afford a specialist or the tests one needs. Now I'm not on anything and feel helpless and hopeless as my symptoms get worse. We have too many assets for Medcaide but I do have an appoint for Disability next wk. I realize that even if I qualify, it can take yrs to get it. Are there many here in my situation?
Thanks for the ear.
L

[FlakeyMatt]

I am so sorry that you are having such a hard time Dealing with PA is bad enough but having medical complications makes it even worse.


I hope disability will be a benefit for you Not sure what to say on the insurance angle but see if someone else can advise


A quick thing to ask about MTX You said the cure was worse than the disease? Did you take folic acid while taking MTX THis helps many patients with some of the sideeffects


Hang in there and we will do what we can to help


As for the whining, kinda funny but we all say that when we first stop in here. I have already told someone else today it is a birthright!!!! ;)


Your in P F.M.

[kcobain]

"A quick thing to ask about MTX You said the cure was worse than the disease? Did you take folic acid while taking MTX THis helps many patients with some of the sideeffects


Hang in there and we will do what we can to help


As for the whining, kinda funny but we all say that when we first stop in here. I have already told someone else today it is a birthright!!!! ;)


Your in P F.M.[/QUOTE]

Hi and thanks for your reply. I did take the FA as recommended by my DR. I remember spending 2 days on the couch after taking my dose. I'm 50 and can't afford to lose 2 days out of my life LOL
I did call my Rhumi Dr after I posted. I can afford to pay "self paying patient" as they called me ( better than being called "Uninsured" by far) and will explain to the Dr to keep the labs low if possible. It's not smart for me to deny myself care. At the rate my hands are "warping" I'm afraid I will be crippled in no time if I ignore the problem. I'm on an anti-depressant and my Dr just sent the Pharma company a "patient need form' for me. I do know there are ways to help myself cost wise if I look into it.
I think I feel sorrier for my husband as he knows the pain I'm in but feel guilty and helpless for my situation.
Any outside support from the forum will take some of the burden off of him
L

[RichJ]

hi kcobian,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have good night all

richard

[alli]

kcobain,
Welcome to the boards. You'll find a wealth of information on these pages and some really great people.
Where are you from in Florida? There are a bunch of us who post here that live in the Sunshine state ( darn state is so large it makes it difficult for get togethers). I know there are some active support groups in the south and a couple support groups that are forming in the Orlando area and north. Just an option you might want to check out ( take some of the burden off the husband :) ).

Alli

[docmks]

HI and Welcome to the Boards,

You are in the right place and we are glad to have you. I am so sorry about your insurance situation and I hope that you will be successful with the disability route. I currently am on "extended medical leave" from my job and this will become disability (with my home state) in a year (I am a state employee). But I also have to start the application process for federal disability. It is a bit of a bureaucratic maze but we can help each other through this site. There are resources through the NPF to help with the disability process, most notable is the packet they can provide you, which has information about PA and P and the problems that they present.

A couple of things to keep in mind: you might want to approach your rhemy about other treatment options. The biologics are incredibly expensive, but many pharmaceutical companies have programs to pay for medications for people in need of financial assistance. I do not have the links in front of me, but we've had other posts on the board about these programs. Currently I am on Humira, but was on Enbrel for a year and experienced some relief with that drug (though I later flared when job stress and fatigue became problems). Many of us do opt for biologics or other combinations of medications because of the potential for severe joint damage with PA.

I, too, was on MTX but discontinued it because of the extreme fatigue I experienced, as well as the stomach aches that it gave me. I have both P and PA and, like you, am 50 and don't feel like I can lose two days a week to lie on the couch. Fatigue is for many of us, a bad symptom of the disease anyway, and MTX can be a contributor to this. I am glad that you sought help for depression and that your doc is helping you get the antidepressant that you need. Depression often co-occurs in situations where there is chronic pain and loss of mobility, as in many folks with PA.

Good luck to you, and please feel free to come to the boards, and ask questions, or just vent. We all need to vent, and express our feelings about these conditions and the problems they cause us. People here do understand.

Again, welcome! And take care,
MK

[twobpresent]

I'm new to the board, too, and am finding it a tremendous help. Great information, wonderful sense of community. So, welcome. You are among friends.

I agree with the others on the thread here - keep reading. I believe you'll find some good support, maybe even some answers. And we will all keep you in our best thoughts in the meanwhile.

As to the whining, I had this thought today: maybe it's a treatment option none of the doc's tell us about. Sure know it's helped me feel better! ;-]