Lupus Community

No I really don't know. Do you also have the fat pads from collar bone to jaw? I'm taking a wild guess here, but since you have stopped the prednisone, but still have that problem, you might consider phys. therapy with a TENS unit. This is an electronic unit that helps move inflammation and fluid build up away from the joints it surrounds. I really don't know. Just an idea. Ask your doc.

Squimy,

Thanks for the suggestion about the TENS unit. I don't have a TENS unit, but I do have an electrical stimulator that is designed to stimulate musclar activity, and to relieve pain. (How it works, I don't understand.) I hadn't tried using this for the removal of what I call the Buffalo Hump.

Squirmy, my "fat pad" exits only on my upper back, where it connects to the base of my neck. Because I had severe pain in that area, I thought at first that it was a compression fracture.

I'm in the process of attempting to decrease my prednisone dosage and hopefully get off of it complete. I am having to many medical problems to even list here, related to the prednisone's usage. However, my pain levels are not helped at all by the drug, Imuran, which the rheumy started several months ago when we began decreasing my prednisone usage.

I've read that prednisone still exist in the body for a year or longer after it is discontinued.

Squirmy, thanks for the idea. I know that this is such a minor issue, compared to so many other serious ones related to the lupus, but it does upset me, so that I decided to share my concern with my friends here.

Take care of yourself Squirmy.

HG

HG

I had Cushings syndrome (the buffalo hump, widht gain, moon face, bloated belly etc.) when I was on high dose steroids too! It will go away once you decrease your steroid dose.

Lupylisa

Lupy Lisa,

Compared to all of the other stuff we endure, I know my personal apperance is much lower importance. However, I am still learning to cope with walking with a cane, loss of 50% of my hair, and moon face.

Thanks for the reassurance.

Luv you friend.

HG

That is what I am experiencing now, fat pad on my shoulders, very visible, neck and face is becoming one, I feel like I have a mask on. I guess our appearance does mean something, so right now I don't want to go in to public places, not even to work.
Will this get better?

Thanks, it is so bad, that myt face feels like i have a mask on covering my face and neck, it has become all one.
I will talk to my Doctor on Fri, hopefully I will get a "good" answer
Thanks
Mccg12

Mccg12,

I am in the same situation that you are, I supposed that you read Lupylisa's response to my question.

There is one thing that did help "deflate" the appearance of my moon face. When I was being assessed by my new kidney doctor and my dosage of diauretics was increased, the contures of my face slimmed down about 50%. I still don't have cheek bones but it is an improvement. My blouse size went down about 3"-4" across the bust. I didn't lose the fullness in my upper arms, or my abdomen.

Because I lost 30lbs., I think the hump really looks bigger. I've been wearing tops with collars and jackets when possible. However, attending an important "dress up" special ocassion dinner this weekend, my husband's retirement party. Well, I plan to wear a stole to cover as much of my exposed back as I can. Oh, almost forgot, I am also having extensions added to my hair at the beauty shop this Saturday morning, another attempt at camouflage. I wish I could remember who said, "...If you have an eyesore, try decorating it"! (

When asked how long it would take for me to "return to normal" after discontinuing prednisone, she simply shrugged. I read that can take one full year to benefit from stopping the drug and for your body to begin functioning more normally.

I hope that some whose had success with eliminating this problem, will "chime in" and help us out.

HG

Mccg12,

Please come back and tell me what your doctor said.

HG

That with the tens unit is a very good idea, I even used it for my spondylosis/neuritis. I t really feels good.
Hope you give it a try

Thank you, that gives me a little hope, because everything you reference to, I have at this time. I am on 40mg Steroid, and have not been able to start decreasing.
Thank you

Well, the Pulmonary Specialist told me Friday, that once I start decreasing the Prednisone, that the "inflate" of all areas will start going down, but it is a long process. My face is connected with my shoulders now, I can hardly smile because of the swelling and are hiding at home for now.
Tuesday I will see my Lupus Doctor, Pulmonary and Lupus Doctor did some research with a Research Lab in Colorado, Tuesday the decisions will be made.
Have 3 options, #1 = Intravenous medicine over 6 months - decrease steriods at the time.
#2: Chemo medicine (pill form) if #1does not work, same time, decrease steriods by 5mg per week til I get to 20 mg per day.
# 3: If 1 and 2 don't work, they will send me to Colorado to the research lab.
She said with decreasing steriods by 5 mg per week, it will take a minimum of a month to see some decrease of the (fat humps), but the additional medicine has to be correct. At this time I have a little hope, since I have went for 2d opionion, my first doctor told me word by word "I don't know what else to do with you", that was enough for me to leave and seek out a better doctor. Well looks like it will pay off (at least I hope so)
The last time was the first time I posted something and I have to say, reading all the responses is really helping, since mostly everybody has the same symptoms, some people have just dealt with it longer and have more experience - that help's
Thank you

Guys,

Thanks to all of you for your information and advise. I felt so much more encouraged after reading all of your thoughts, suggestions. The saying that "knowledge is power" is true. I felt like "...I got my power back!", which was the theme of the night-time cold medicine commercial on tv during the winter olympics.

This past weekend, I had to attend a dinner celebrating my husband's business collegues hard work and his retirement. The dinner was in Dallas at a well known 5 star restaurant. Well, early Saturday morning I went out and had (temporary) hair extensions put into the back of my hair to increase its length and to cover up the "hump" on my back before I went to the party. After I received compliments both Saturday night at the retirement dinner and at a July 4th Bar-B-Q last night, I'm going to exchange the temporary extensions for the kind they sew into the hair. I'm thinking about keeping these until either my own hair, which I lost from lupus, grows back, or the "hump" deflates.

Thank you again and again. You know how important it is for ladies to feel self confident about our appearance. The changes in my appearance from lupus and the drugs used to treat it, have been an emotionally roller coaster for me and these are the small problems relative to the others.

HG

Thank you for sharing this with me. I'm not able to decrease my dosage by that amount becuase I am hurting with every 2.5 mg. dosage decrease. Nevertheless, I've plan to stay right where I am until my Imuran (sp?) kicks in, if it does kick in.

I've receive large doses of non-oral steroids like you. I've had 3 lumbar, steroid bilateral reformat injections under anesthesia this year and several IM injections on steroids into my left hip to treat hip pain.

Stay in touch and let us know the outcome of your treatment's progress. We all learn from each other here.

HG

I have this same problem. Never noticed it until I started taking cortisone shots for my knees. Could this be the problem and will it go away?