What Prednisone does to your body, or atleast what it did to mine *disturbing pics!*

[carriej22]

Not really sure why I'm posting this. I guess I'm angry.

While my doctor informed me of weight gain and all the other side effects from pred, he did not mention the one that affects me the most. The striae. I understand not everyone has them, but prednisone basically gave me steroid induced cushings disease. This disease is not pretty. My body will never go to back to the way it was. I understand Im alive and should be thankful, but this drug has destroyed my confidence and my ability to enjoy life at the moment. Someday I will probably get over it... But it's really affecting my mental state right now.

So before diagnosis... I was never skinny girl. But I was relatively trim with nothing jiggling around, proportionate and confident in my skin.

(sorry for the crappy pic, its one of the only "full body" shots I have that does not include dresses or other body shifting/changing material)



Here is a picture of me the day before my wedding. Panic was ensuing because I thought my face was getting fat at this point. HA



My face the beginning of July. Approx 1 month after Prednisone started.



It's worse now, than that. But it's coming down.. I think

Anyway... I gained some serious weight in what.. 6 months? About 30lbs.. All belly.. Let me show you.

Beautiful isnt it... See those lovely marks. Notice how my legs are pretty much the same size. You have no idea how many people ask me when I am due for a baby. It's depressing.



If I didn't know better I'd think something was growing in there.


Even places that haven't grown have the marks.


I have these marks from my ankles to my neck. They're even on the back of my neck, legs, everywhere. Only place none have arrived is my butt. My butt and legs have not put on any weight.. But this serious nastygram bag of lard stomach is no walk in the park. My doctor is all like "i've never seen someone have quite a time with it before..."

And I have lost 10lbs of it at this point.. So it was worse than this. At first I admit, I had quite the appetite. I had lost a lot of weight (I basically starved for 4-5 months prior to wegs. I just couldnt eat) so at first it was nice to eat again. Once I seen the scale go up 5lbs I said, whooaa mama. Immediately cut back to what I would consider normal portions. What I would normally eat when I was healthy. It was hard, I wanted to eat the fridge, table.. etc.. lol. Then, the weight kept coming. I lived off cucumbers from papas garden, iced tea and frozen grapes. Weight still kept coming. Now that I am lowering on pred some of it has come off.. But man, I don't care who ya are Jack... That skin ain't going back where it was.

[pberggren1]

Yikes, I didn't know pred could cause Cushings. What is Cushings exactly?

[Debbie C]

Carrie ,I am so sorry that pred.did that to you.How high of a dose were you on and for how long ? I never heard of steroid induced cushings until now,then I googled it. You would think that drs. would have lowered it sooner. Have you seen a dermatoligist to see if there is something they can do for the marks. I know I have like bumps on the back off my arms and he just suggested putting cream on it but maybe there's a laser treatment or something that can help ???? As far as the weight goes U can lose that in time, you just have to really get a seriuos workout routine down and stick to it..even if it is just a few days a week...congrats on losing the 10lbs.

[carriej22]

I was on 100mg for 1 month. Then down to 60 and tapered 10 a week til 20. Then got sick again and ramped back up to 60 and am now down to 10mg. Sucks.

Most of this happened in the first three months. It's horrible. There isn't really any treatment for the marks, that I can afford anyway.

Prednisone can cause like a "temporary" cushings disease that will go away when the pred is stopped. I also grew hair on my face. Luckily, I'm an esthetician so I took care of that and it doesn't seem to be coming back anymore so I'm assuming my body is calming down. It just sucks.

My husband keeps telling me to tell people I was attacked by lions.

Hilarious isn't he!

[vdub]

That is a very discouraging side effect. I had an unknown disease back in 1960 (probably WG) and I was put on a new wonder drug called cortisone. I was only 10 years old so doubling my weight was not to difficult. I gained so much that I was eventually put in a wheel chair -- partly because of the weight gain and partly because of the lethargy and fatigue. I was sick for two years and then came out of it or it went into remission. Anyway, I still have the stretch marks from that time period 50 years ago. Eventually, I lost the weight.

Best of luck to you... I know this is a terrible time to go through. I hope your husband is staying supportive -- that is so important.

[Debbie C]

Carrie.at least yr hubby has a sense of humer about it...I likes the lion comment.Hey he still loves you thru all this so thats all that counts. Things will get better

[annekat]

Oh, Carrie.... Thank you for having the courage to post those pics. Now we know what you are talking about...... I wish your docs hadn't thought it necessary to put you on 100mg./day of pred at any point. That is really a lot, and unusual, from what I've read on here.

I do think it likely the excess weight will come off and you will feel better. I wonder if there are any docs specializing in Cushing's syndrome who could give you more answers about dealing with this. And maybe there are some Cushing's support groups in your area or online, where you could talk to others who are going through the same thing. It could be therapeutic.

As for the moonface, you are a very attractive woman with a pretty face, no matter what. If it is coming down since the third picture, that is great!

Your husband sounds funny and awesome, with a great attitude. I don't think you could have picked a better one!

[HopeinTN]

Girl, I'm so sorry you have to not onlt go thru this dreadful disease but now this. Maybe they will disappear as fast as they came about. I'll be thinking of you and wishing you well. I too struggle with the weight gain and all the issues it has now caused, but liek many have said, it's better than the alternative. Tell that to my big booty.

Hang in there and I'm so proud of you for sharing, that had to be tough. But really, no one would have known how bad this was without seeing the pics.

You really are a beautiful lady. Take care!

[chrisTIn@]

My daughter ( she's your age) had some stretchmarks on her hips and tummy, but since she lost weight, the stretchmarks eventually got less visible (no so red).
Nowadays they can hardly be seen.

It's lovely that you have such a loving and humorous husband!
Still I can understand that this damage of your skin and connective tissue is at this time hard to accept for you.

I remember that during my pregnancy I was also very afraid to get stretchmarks, and that I tried to prevent that (from what I read in books and magazines about that matter, there was no internet at that time) by massaging my skin (rolling skin and connective tissue between my fingers to stimulate the bloodcirculation) and using creamy bodymilk to keep the skin supple. In my case, that treatment worked. I never got any stretchmarks during my pregnancy.
I know that damage already done (as in your case and the case of my daughter, in a period that she grew quickley) can be treated with specialized lotions. That kind of lotion and cream is available in Europe, and I 'm sure it will also be in the USA. You as a beauty-specialist will surely be able to find such creams, would'nt you? Good luck with that. My daughter sure benefitted from those creams. But it takes some time to see result.
About the tummy tuck: I totally agree with you that such an operation would be too risky. When you loose weight and you take moderate exersize that you slowly increase, you probably will get result. When your muscles and your abdominal wall get stronger through abdominal exercise (I repeat: start slowly, let your body get used to it, especially since you're still on pred) your tummy will get flatter over time, and your skin will be elastic enough -since you're still very young- to get into shape again.

Maybe you told it earlier, but is your doctor a real vasculitis specialist? With enough experience?
Can you get a second opinion about your treatment and the side effects in a vasculitis centre otherwise?

[carriej22]

Yes, my husband is a godsend. He never fussed, not even when I had to have him help me was my hair, etc when I was unable to do it.

I have tried several different creams. Both professional brands that I purchased through different wholesalers, as well as prescription creams. Unfortunately, as a Esthetician the main thing I preach is prevention. Once you get a stretch mark, the dermis has ripped/torn and even though over time the appearance will improve it's almost like a sort of scar. The creams did not do much at all. I began the creams before it was this bad, but they kept coming.. They were uncontrollable. I would wake up with many new ones, it was very, very frustrating.

From what I was told, prednisone can restrict the production of collagen and elastin fibers which is why I have so many. Even areas that have not gotten any larger (for example, I am still wearing all my same pants, yet my ankles (weird???) are covered) have these marks. My skin is like tissue paper right now. It's extremely soft and loose feeling. Very weird. It also sticks to itself. For example, when I'm in the shower I have to be very careful not to rip my skin. If I put my arms at my side the soft skin of my arm will literally stick to my underarm. It's quite painful sometimes, and my skin is constantly ripping and weeping.

I have a few doctors, but my main doctor is a rheumetologist. He treats quite a few other wegener's patients (well, many for the rarity of the disease) and I believe he is only 1 of 2 in the province that deal with it. I also didn't really get to pick my doctor. We need to be referred and he is who my family doctor suggested and referred me to.

I do not believe there are any vasculitis centers even in Atlantic Canada, however if another Canadian (seems to not be too many of us) could chime in on maybe where there IS one I would appreciate it,