Does anyone know anything about steroids medication

[Polar Bear]

This is me hoping to pick someone's brain and their experience.

I was diagnosed with Temperol Arteritis/Giant Cell Arteritis which was a medical emergency have been taking prednisone for about 7 weeks starting at a daily dose of 50mg. No known cause and solution is steroid in particular because the temporal vein feeds the back of the eyes and there is a very high risk of damage to sight.

The steroid has been reduced at 2 weekly intervals and I am now at 30 mg daily. When I get to 20mg daily it will then reduce much slower i.e. by 2.5mg every 3 weeks.

The side effects have been numerous but necessary, no choice. The medication itself has worked really wel

Unfortunately to date I have put on about 12 lbs. You wake up in the morning and aaahhh..... there are another 2 lbs on the scales.

All my clothes are too tight and jeans etc are well up in size. Im not just bigger all over but a big 'roll' is hanging around the middle over the waistband. My face is fatter and puffy etc. etc. all comes with the steroid.

Everything that I read says once the steroid is reduced/stopped that this puffiness should disappear. However, even tho I am reducing it, I am going to be on it probably for about 6 months because the condition requires that it is such a slow reduction.

Has anyone any experience of how soon the bloating and puffiness starts to reduce. Would it be below a certain dose of steroid. Or perhaps the steroid has to be completely out of the system for some weeks.

Over the past 2 years I had worked at losing weight and this gain is so disappointing. I am going out today to buy 'leisure bottoms' with an elastic waist etc, just for comfort.

I know there are internet sites out there that would have steroid information, but I'd like to hear what any of you have to offer in the way of experience or knowledge. When on our own RLS Board I feel like I'm asking friends.

Sorry if this sounds like a rather vain post.

[ViewsAskew]

I wish I could remember how long it took my friend; she has lupus.

I would say that it did go away mostly, but I think she feels that her body shape changed a bit and she's heavier in the middle that she was. She lost weight, afterward, but she didn't seem to lose that middle roll. She's not sure if it's middle age, menopause, or the lupus, all of which hit her at the same time.

[Polar Bear]

Thanks Ann, I have to admit that even pre-steroid I didn't go in at the middle as much as I'd have liked. My thoughts are more on the line of wondering at what point of dosage of medication does the weight/puffiness start to shift.

Hmmm... probably no answer to that, kind of like how long is a piece of string. As in everything - we are all different.

[Wayne]

I took prednistone for about 6 weeks when I started chemo (this was almost 30 yrs ago when I was a teenager).

I experienced all the symptoms that you describe. The weight gain and appetite increase was a good thing for me, because prior to my chemo treatments I had lost about 35-40 pounds, I was way, way under-weight for a guy that's 6 foot 3. But I remember an almost constant craving to eat, even after I just eaten.

So in my first 2 rounds of chemo. I did little except eat, sleep, eat some more, watch TV and getting a little exercise as my strength came back.

The puffy face, or as my doctor called it "frog face", was disconcerting, but then, my hair fell out between round 2 and 3 and I stopped worrying about having a puffy face.

I don't remember what the prednistone dosage was, but it was halved at the 2nd round of chemo, and changed to every other day, then halved again by the 3rd, and stopped completely before the 4th.

Once, stopped the frog face went away, the huge appetite fell away, and I went back to my previous eating habits of a normal teenager, meaning I still ate a everything in sight, but I wasn't craving food.

[Polar Bear]

Wayne - when you mention having had chemo as a teenager it kinda puts a bit of weight gain into perspective. Trust you are now well.

Yes, the craving to eat, its not even about feeling hungry, its just wanting to eat. I am really now trying to control that urge, tho it is not normal weight gain as in all over, its all middle and face.

Good to know that the craving and the 'moon face' did go away for you.

[Wayne]

Wayne - when you mention having had chemo as a teenager it kinda puts a bit of weight gain into perspective. Trust you are now well.

I am thank you. I would do another round of chemo if it was discovered to cure RLS!

But that's what steroids do, they build/bulk you up and give you energy, which is why athletes risk taking them, to give them an edge over the competition.