Yesterday my doctor decided on a plan which is "minimal" to see if I can get some of these symptoms under control. I am starting on just Prednisone, but 60mgs/day. I understand that is pretty high. I did not want to use the Prednisone because of the kidney nephritis from which I suffer, but another blood/urine next week and we shall see where I am.
The damage to the kidneys was not the only reason and I am ashamed to admit that part of it had to do with the horrible side effects that I read/hear about. Although I never thought of myself as vain, perhaps I am to a certain extent as I am very concerned about the physical changes to my appearance at that high of a dose. I have always been thought of as "cute" and compared for 20 years to Jamie Lee Curtis. (I obviously am being very honest here and hope that I don't sound like a whiney, conceited brat).
I need to attend my husband's office Christmas party next week and am concerned that I will not even be able to fit into my clothing by then. I started losing my hair and had other symptoms of SLE over the last several months, but have been able to conceal these to a certain degree.
I guess what I am asking is...what can be done to minimize the physical effects, are there make-up tricks :), and what are other people doing to handle the physical changes with different treatments. I hear so read so many brave stories here that I feel very small in even asking, but there it is nonetheless.
Thanks,
DeAnne
P.S. On a positive note, I actually went to the store (only one) and did some Christmas shopping for the first time in 4 years! It was AWESOME!
I understand how you feel. I had weight loss surgery 11 years ago, and lost 75lbs. I have regained about 10lb off and on, and I don't like it! My rheumie didn't put me on prednisone because weight gain is a side effect.
Lupus affects us all differently, some of us gain, some lose..... Watch your diet, learn about foods that are inflammatory. I'm having surgery in a few days, and I'm concerned about hair loss. I have been growing it for 4 years now. I lost a lot of hair after my mother died, - I developed pneumonia days after she died and had a major flare. I lost hair after my surgery as well.
My mother's lupus was never diagnosed, but she never looked her age. I remember one time she was getting lab work done, and the lab tech said "I don't believe this is a 72 yr old woman sitting here!" So, its not a given that you're going to have all the physical changes you read about. I don't think you're being vain, this is the place to share your feelings, and you're allowed to feel them and express them. Trisha
Hi DeAnne. I’m also taking 60 mg of prednisone daily aside from plaquenil. Gaining weight is inevitable. I don’t want to sound negative but that’s the sad truth. I’ve already came to terms with losing hair and gaining weight. I just tell myself wait till i’m off these meds, i’ll lose the unwanted pounds and grow my hair back. What’s important now is to control your flare and lessen the symptoms. You don’t want to be in pain because of this. Ask your doctor about supplements to counter the aweful effects of steroids. Right now i’m taking omega 3 1000mg 3x a day, cal-mag-zinc, vit D 5000mg, ashwahganda and something to cleanse my liver. I’m done with colon cleansing. I’ve been consulting a holistic doctor too aside from having my conventional doctors for lupus treatment and kidney nephritis.
No, you’re not vain. Don’t worry about it. We’re somehow on the same boat.
You may read my personal blog on the left side of my site. I put a link there.
I just want to reassure you that you are NOT being vein and to not feel small!!! I actually cried when I had to give up all my really cute shoes because I just couldn’t wear them and the thought of boring flat shoes was very sad to me until I realized that it had nothing really to do with the shoes themselves but more to do with losing just one more thing that made me who I was. You are more than entitled to your concern over your appearance!!! I think to a certain extent we all worry about it. There is much more to the whole weight gain thing than just how you look. It effects how you feel on the inside and along with all our medical bills its an added expense to have to buy new clothes. So don’t ever feel bad about your concerns!!! I wish I had some advise on how to mask it all :(. Good luck!!! Hopefully your body will tolerate in a way that does not change things too horribly.
Its been a while since I responded although I read and take in alot if the information that this site has to offer. Everyone is right weight gain is unavoidable, it doesnt happen right away. Unfortunately it is the only was to get a flare under control for now. When coming off of prednisone you have to do it gradually and look at the foods you are eating and just know certain food that you use to eat maybe affecting your flares (Seafood). I have been off of steriods now for 2.5 months after being on for a year, it hard sometimes because steriods supresses your pain and symtoms, but I excercise when I can and to be honest it feels good...I push through the pain and rest when my body tells me too. I will not give into Lupus.
Just remember it's not how big the package is ..it's how well it is wrapped!!!
My doctor had me on prednisone for 3 weeks and I gained 25 pounds with being on weight watchers. Once she saw that the prednisone worked with my joint pain and daily fevers, she put me on methotrexate. It worked but after only 4 months on it, I had signs of liver damage. She took me off it for 6 months to make sure my liver enzymes were back to normal and started me on leflunomide and it seems to be working better. I still have pain but not as bad and no fevers. I have been on it for about 6 months and so far I have good lab results :)
I’m concerned to hear your doctor is calling 60mg of prednisone minimal. If he/she is not a rheumatologist, i would get a second opinion from a specialist. From my experience, 60mg in combo with a drug like plauqenil is pretty aggressive, especially if you are just starting treatment. I was diagnosed 22 years ago, so I’ve experienced a lot. The only time i was put on prednisone that high (and higher) was in 1990 by a GP and then again in 2009 in the hospital when my life was in danger. I am on plaquenil, as well, and have been tapering prednisone, because of the long-term damage that is now becoming evident. I have started benlysta, though, because i am in bad shape and my new doc won’t let me taper prednisone further till we get the lupus better under control. The only tip i have for concealing hair loss is what i did when i lost mine – headbands and clip-on ponytails. Had i known the prednisone would have resulted in osteopenia and cataracts 20 years down the line, i would have thought twice before blindly taking it without questioning the docs first. My hair has grown back in the last 3 years and three things that helped are horse shampoo (specifically eqyss megatek hoof and mane rebuilder), only washing my hair twice per week, and a biotin supplement. Oh, and accenting my eyes with eyeliner and eye shadow helped draw attention away from the lack of hair. Learned that trick from some cancer patients on chemo. PS - you are NOT vain
Thank you to everyone for the great ideas and support. As you said, Queenie, feels like I am losing just another part of "me". I am a former Special Ed teacher and now my life revolves around docs and meds and how I feel that day...I still don't know how to respond when someone asks what I do? Lone Wolf, my doc is a Nephrologist (excellent reputation) who started seeing me in hospital after a stroke. My BP was uncontrollable. He was the one that kept looking and found that Lupus and the nephritis. Many of my symptoms and lab results have been evident for years, however he was the only one that followed up, so I do trust him. I haven't been able to find a Rhuemy that can see me until after the first of the year. I see him again next week (weekly visits) so I feel that he is taking the tx very seriously.
Just as a PS, thank you to everyone. This was just what I needed to hear (or read :)).
Nephrologists are very well versed in treatment of lupus nephritis and sometimes even preferred to the rheumatologist The first decade or more of my treatment was under a nephrologist as that was the main manifestation of my lupus I was on prednisone 60 for almost 2 years- a rough go for sure but sometimes the big guns are needed The side effects of prednisone are often less than the alternative
