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!

[malin]

I know how you feel This summer I was put back on pred n last time I had an appointment at Addenbrookes the doc said he thinks I've got pred induced cushings as well. Got very bad moon face, new stretch marks, weight gain no matter what etc. I mean I wasn't ever not big but since August I have gained (so far) about 25 kg! plus got the hairs growing on my face and spots all over my face/chest/back. Am at 30 mg pred at the moment, was supposed to reduce with 10 mg a month until I was down to 10 mg but that stopped short when I caught a chest infection so am still stuck on 30 mg now.

[JeanMarie]

Carrie, I'm looking at your wedding picture you were a beautiful bride & you still are!!!! Pred- the drug we love to hate but it works and that's all there is too it.

[carriej22]

Thanks guys - it's nice to see the support. I was a bit worried about what kind of response I was going to get back. LOL

My husband luckily, is a saint. Sometimes I want to kill him - but the marks don't matter to him and neither does the weight. He just wants me better. We have been together for 8 years now, and we've been through a lot together. He's happy to have me home and alive. I remember when I was in the hospital for a week the end of August, I came home and was harassing him from the bedroom since I was on oxygen. He said he missed my snarky comments.. lol. I doubt any other man (or woman for that matter) could live with me! Hahahaha

From what I understand, this is why my doctor is getting me off pred so fast. It seems as though most of you have been on for several years. I'm weaning down to 9mg and I've only been on since June, but as you can see.. This drug is destroying my body and I guess I just don't tolerate it well. He is hoping to get me off pred completely, and then just Imuran. Then hopefully off Imuran too... Would be nice... Sigh to be a regular human again!

It's just hard for me - I was never one to dress provocatively, but I am only 23. I don't feel comfortable in a lot of my clothes anymore, as I have the striae right down to my elbows. Looks like I'll be buying a lot of 3/4 length sleeved shirts. They are hot purple and stand out on my skin like no ones business. I can see people staring, probably thinking "thats a weird place for that many stretch marks"... And I agree since my arms haven't gotten that much bigger if at all, yet.. Still covered.

I know the weight will come off - It's already starting to come down some. My only issue is that I know my stomach is going to hang... I'm really not into having a tummy tuck (even though to make me feel better, my doctor said if I lost the weight it would be covered by medicare) as it just seems like a high risk to me, as well as the possibility of going back on pred in the future and blowing up again.