Feels like I'm stuck in limbo! | Arthritis Information

 

Hi folks.
Let me apologize in advance for this ridiculously long post. Hello and welcome! I Would be a crabby hermit too! I do not know what to say quite frankly, just know that most of us have been that route and it is not an easy one. At least you have insurance...I do not and it makes RA just something I have to live with due to not being able to afford so much as to go to a Dr.

I don't know about you but there are times when I wished I could just turn back the clock...man oh man would I have done so many things differently.

Jodehave you checked into Still's Disease..you didn't mention fever but the rash fits

Hey Crabby, sorrrrrrry for all your troubles, aches and pain in the a$# RD (good for you, kicking him to the curb!)  I started out with an RA diagnosis, then fibro was added, now it looks as if Sojgren's is coming fast.  I guess you just learn to live with it, you have good days and bad days and then the horrible days. Sometimes meds help, sometimes meds make it worse, some days you wanna give up....I have had a rash on my body at times. Initially looks like poison ivy and then forms these little postules and eventually goes away. Itches like crazy. I have been to the dermatolgist, had skin biopsies that seemed to indicate a photosensitivity. But could never identify what was causing it. Especially since the rash would occur when I had not been exposed to sun. They then tested be for lupus which was negative. I still on occasion get these rashes but I do nothing now. I believe it is somehow caused by Enbrel. I wonder if the biolgic is causing a lupus like-reaction.

I also have that throat rasp thing. Sometime when I begin a sentence nothing comes out or it's just a squeak (very embarrassing). Went to an ENT. Could be caused by drainage (tried antihistamines and nose spray) or reflux (tried a strong reflux med). I still have it. I noticed it get worse if I drink alcohol. I have heard about RA cause but not certain that is what it is.

The pain in your butt/leg/back could be sciatica.[QUOTE=hessalina] I believe it is somehow caused by Enbrel. I wonder if the biolgic is causing a lupus like-reaction. [/QUOTE] [QUOTE=CO_Mel] [QUOTE=hessalina] I believe it is somehow caused by Enbrel. I wonder if the biolgic is causing a lupus like-reaction. [/QUOTE]




[/QUOTE] I have never gotten the butterfly rash. The rashes I get are usually on my arms, trunk, legs...basically everywhere BUT my face. I get them 4-5 times a year. They are usually quite isolated - like just a baseball sized spot on one forearm. Usually little pimple-size "satellite" spots appear elsewhere at the same time.

My RD and Dermatologist basically threw up there arms about it. I'm confused-you had high CCP?  That is an RA specific test.  Hi again, and thanks everyone!
Yeah, Mel, that's what I have--like a "catch" in there. (I'm constantly swallowing and clearing my throat because all the spit just won't go down. Also makes an icky, clicky-poppy noise.) But alas, I have a non-sexy rasp. It's more like a teenage boy whose voice is changing. Not a big turn-on.
Oh Jode, that sucks so bad to have to go without treatment. Have ya checked with any of your local hospitals to see if they have any programs for financial assistance? Maybe pcp doctors that offer a sliding fee? I had both available and didn't even know it until right before my insurance went into effect. I knew that drug companies had programs to help out with medications, but what good was that if I couldn't afford going to the doc. for the prescriptions?
(I feel really stupid about that assumption now, though. My dr. appts. would've been 20 bucks and blood draws 8!)
I hope you can get something soon. I know what a miserable ride it is to go solo.

No, I don't think it's Still's. Haven't had any fevers. (Another weird thing though: before when I was making the "rounds" my temp was consistently between 99.7-100.something. Since I began my new rounds, it's been consistently 98.2 or below.) Geez, I'm sure sounding more like a hypochondriac every day.



Hey crab.....THe docs that are at the clinic will nto touch the RA...they say they will give me a referral but there are not any RD's that take poor peopl ( basically is what they are stating) SO have to find a job but really do nto want one around here...the economy is sooo bad that if they hire you, you are typically out the door before the insurance kicks in.

Was your anti-CCP a low positive?  It can be low positive in other conditions.  See the hyperlink below that contains this information:

Anti-CCP positivity and its diagnostic value is best known in patients with rheumatoid arthritis (RA). Anti-CCP antibodies have a positive predictive value of 87.9% for RA. The sensitivity of anti-CCP antibodies for the diagnosis of RA is 77% and the specificity for RA is 86.1%¹. A relatively high frequency of anti-CCP antibodies has also been reported in patients with non-RA connective tissue disorders such as systemic lupus erythematosus (SLE; 15%), Sjögren's syndrome (SS; 14%), polymyositis/dermatomyositis (23%), and scleroderma (16%). The median level of anti-CCP antibodies, however, was lower in these non-RA patients (7–35 units per ml) compared to patients with RA (100 units per ml or more)².

 

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