Need some advice

[nanamaryj]

Hi.  I am new to the boards.  I have been reading the posts for a while now, so I know there is someone out there going through the same thing.  My problems started in my early twenties.  The first problem I had was a rash across my face, chest, and arms.  I went to several doctors who treated me for allergies.  Every three months was shots and predisone packs.  I did that for about 17 years.  My GP finally sent me to a dermatologist.  A skin biopsy came back Lupus.  He treated me for a few months with plaquenil.  I had other symptoms along with the rash, but didn't think anything of them.  My GP then sent me to the only Rummie in town.  He said I don't have Lupus, but SJS and arthritis.  I have been on plaquenil and predisone for over three years now and recently started Imuran.  My problem is that I have gained 50 pounds in the last three years taking the predisone.  My Rummie is hard to talk to.  I've asked him what I should do about it.  He says I can take it or not that he doesn't care.  Has anyone else had this problem and what did your Dr say?  Any help would be appreciated.

[JannaLee]

Nana,

From what i hear that is the problem with prednisone and I don't think there is anything they can do about it.

Hopefully I am wrong about this, but I don't think I am.

It seems to come down to a choice:  Chubby/fat with semi-wellness~ vs.  a bit skinny but sick-as-a-dog!!

Does anyone have a pearl of wisdom to shoot me down!?  I hope so!!

Welcome to the forum, MaryJ!
Janna

[Seeker]

G'day Nana, welcome to our family.  Sorry you are having such a time of it.  I do have one suggestion.  Ask your doctor about being tested for Celiac disease.  People like us with more than one Auto immune problem, should look into Celiac.  Celiac is as over looked by doctors as Sjogren's.

Welcome again and I hope you we will hear from you offten.

Seeker

[Scottietottie]

Hi Nanamary 

Welcome to Sjogren's world. I'm afraid I can't comment on the effects of prednisone as I've never been on it and I think it is a real shame that your rheumy is not easier to talk to.

I have a Sjogren's/lupus overlap and also Hashimoto's thyroiditid. Auroimmune stuff does seem to come along in 'packs'. Is your thyroid OK because it can certainly contribute to weight gain?

I hope you find the forum useful.

Take care - Scottie 

[Patze]

Hi Nanamaryj,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics that just might interest you!  If you can't find what you're looking for, do ask as there is usually someone about.

I'm sorry that I can't speak of predisone as I've not been prescribed that, but I can understand your frustration at the weight gain!  I have Hashimoto's and I can't seem to loose any to save my soul!

Boy, do we have the same rheumy?  It sure sounds like it!  Amazing, ain't it? 

Again, welcome, and hang in there, okay?

Take care -

Patze

[lynnmarie219]

Hi Nanamaryj!

Welcome to Sjogrens World! Ive been on prednisone but not for any long length of time....but I did want to make a comment about your rheumy. If you are not happy with him...try another one. Some of us had to try several different docs before we found one we liked...and some of us are still looking!     

Do you live close to a University or teaching Hospital or Medical Center? You can usually find good docs in these places as they see a lot of different patients and are involved in research. I have to drive about 2 hours to some of my docs...but to me its worth it for better quality care!

Welcome to the Boards...take the time you need to read all that you can and ask any questions that you may have.....someone will always be around to help out or offer some personal expertise!

[meme]

I agree, maybe its time you looked for another rummie.  It took me 5 months to get an appointment with the one my GP wanted me to see, he has no bed side manner but he is wonderful!  I can overlook him calling me pudgy!  A lot of peace comes from knowing you have a good Dr. that has your well being at heart. I'm also new to this site, and I am in love with it. I have all ready got some of the best advice I have ever heard from anyone.  We're blessed to have such a site like this.....
take care
Meme

[Bucky]

Hi Nanamaryj . . . welcome to our little (but quickly growing) family of Sjoggies.

I'm sorry I don't have any experience with Prednisone either, but have read many people here echo the same weight gain woes of this medicine.    

It's rough when you don't have a bunch of doctors to pick from in your town.  Again, I have heard many members comment on the distance they travel to see their doctors - some many hours away.  For something that is long term like Sjogren's is, I would really want a doctor who listens to me and cares about my treatment.

There is a lot of information on this site.  You can "search" for specific topics or threads by typing in the subject in the "Search" box located at the top of the forum page. 

Again, welcome.
Bucky

[nanamaryj]

Thanks everyone for the advice.  It is about an hour to an hour and a half to the next nearest Dr.  I may have to look into going down there though.  The excess weight is putting strain on joints that were not good to begin with.  Thanks again for listening to me.  Sometimes it helps just talking to someone who understands what you are saying without thinking you are crazy.

[lynnmarie219]

Sometimes it helps just talking to someone who understands what you are saying without thinking you are crazy.

I hear ya on this...how true!