Lupus Support Group

Thanks to everyone for the awesome support that has been giving to me. I did want to know if anybody else has had some of the side effects from medications that I have had. I now, take a supplement pill, potassium. The chemo therapy I took twice now has destroyed in my system the organ that processes the potassium. I have spinal damage from the steroids I have taken for 17 years, and now have to have coritizone injections in my back. the worse side effect I am dealing with now, I believe is the drug induced diabeties. I now have to take another medication (amayral) for that. This is so depressing. I would like to hear from and body that has side effects to meds also so, I can prepare myself for the future.

Trimbell,

The side effects for me so far is. I have been on prednisone for three years now. I now have osteopena the stage before osteoprosis. I went from 5/7 last year to 5/5 this year. BUT!! I can't live without the prednisone. I have inflamation throughout my body. Including my heart. I know when I take my 19 pills a day, that the side effects are bad. But I don't want to go backwards, I want to move forward. I want to live!!!

It makes me mad because we have no new meds in 50 years for lupus!!

Gen

I'm not currently suffering from any major side effects from meds. I can only imagine though, like in another 10 to 20 years... if I'm still taking lots of meds... yeah- my body will probably be in a different mess.

I look at it though as... I have to take care of me "now". I have to actually live to see the future.

Thanks for the response. It is funny how the meds that save us are acutally killing us somewhere else. Gen, I use to be 5' 4 1/2" I am now 5' thats alot of inches. It is depressing to see family pictures that my sister and I are in now and I am so much shorter, and plumper then her. we use to be the same height and close to the same weight. Does any one have excessive wrinkles or stretch marks from the constant changing of prednisone doses? If I was to loose to much weight (which would actually be a healthy weight). I would look like a prune from the constant exspanding of my cheeks. That is from the steriods. discouraged, however, encouraged by your comments. Thank you.

trimbell,

I have so many stretch marks from having my daughter 20 years ago, so I don't know if there is any new ones!! LOL

I keep wondering if I ever get off the prednisone, what will I look like.

Yesterday I was crying to my daughter again, because they are upping my prednisone to 60mg again. More weight. She told me that her Dad (my husband) and her love me no matter what. With the prednisone weight gain or not. So very nice of her to say that to me.

Gen

I'm like Gen I have so many stretch marks from having my son 28 years ago it looks like a map hee...heee...

Eva

Gen, that is like me. I hope to some day be a normal looking person. I do try to cover my scars from lupus. you know, make up, jewelry, etc. Some days I feel worse about it. I try to focus on the important things in life. My family, my career. And now I have this wonderful group of people to focus on. Thats awesome. Glad to be here.

Trimbell I used to be a skinny thing and always the smallest of my three sisters but now I am the widest and still the shortest but I am still the same on the inside I am still ME!!! Lupus did not take that away from me.

Eva

thanks Eva,

I really never looked at it like that. Thanks, I will remember that. So many people in the world today look at you from the outer and forget all about who you really are. Thanks again.

Hi,

I also have the osteopenia from the steroids but I think it might be more from being on the Lupron which is a drug that puts you in menopause. I haven't gotten any shorter yet, I am still 5'7 and I hope to stay that way but I have been on steroids for a year and a half now with no prospect of getting off of them. I guess in a way luckily for me, not right now so much because I am too skinny at the moment, but I have so many weight issues between the celiac and the lupus that the steroids have never caused me to gain weight...I did have a nice co-worker tell me I looked like a chipmunk once though when I was on a high dose lol.