Prednisone

[andrew]

Urk, sorry to hear that. I think the trouble is that your doc raised your expectations too high.

I saw no change until I was completely off the Pred. However, there are others that see changes on low doses. Everyone's different though and it's going to be trial and error too see where you stand as far as losing the effects from Pred. I guess you already worked that out though.

Does your doc have any plans when you are reducing again or is it a 'wait and see' approach?

You need to feel better. I suggest going shopping and buying yourself a couple of t-shirts :

http://www.zazzle.com/prednisone_fea...427?gl=restful

http://cure4lupus.org/product_pages/...es/predwar.htm

Also found this while I was searching for the t-shirts: http://idliketobuyabowel.blogspot.co...rednisone.html

I like the part where she says:

"I'm sure some of you reading are familiar with Prednisone, the corticosteroid designed by Beelzebub himself to provide miraculous results overnight at the cost of your long-term sanity and general health."

[capabayan]

Wow, thanks, I desperately needed that laugh! I think I'm gonna get me one of those pred bunny tshirts

I should hopefully continue to taper off soon. Because of the issues I just had with my white counts, the doc wants to wait another month or two before going down anymore, just to make sure things are stable. But then, hopefully, we'll continue dropping, very slowly I'm sure. I just hope my body can handle being on lower doses!!!

[Chica]

Ugh. I never realized how much you could hate something so essential to survival. The weight gain, the ravening hunger - my mom and I often joked up how I lovingly sidled up to the fridge looking for pickles or olives or ANYTHING! The moon face, the buffalo hump, the hair in unwanted places, the stretch marks - actually stretch canyons. I put on 70 pounds in a matter of months. Now that I'm on the maintenance dose of 5 mg, the weight has gone but not the scars. Inside and outside. I will forever feel like I don't recognize myself in the mirror. The trembling, the hot flashes, the insomnia, the mood swings are enough to make you feel crazy - I actually verged on paranoid some days. But when it takes away all the pain that is involved in severe inflammation, prednisone is like manna from the Gods! Consider it simply a lifelong love-hate relationship. Can't live with it, can't live without it. I do try to avoid higher doses at all costs if I can....but sometimes it's just unavoidable. Remember there is always a light at the end of the tunnel and eventually that prednisone is going to do what it's meant to and you won't need to take so much anymore.....

[Carol]

I seem to sleep OK for the first part of the night then am awake about 3pm. I find the best way is to cheerfully get up, make a cuppa (that's when I drink my Herb robert tea)and actually achieve something - fold washing, unpack the dishwasher, get some paper work done while I'm up - that is always a positive to go back to bed with. This achieving something is also good in that when you need a rest the next day you know you have put in time over night. Allow yourself something semsible to eat - I really needed that snack in my early days - maybe you are having a blood sugar drop. Sometimes having something sensible for late supper helps too. I meditate regularly so I think I don't need as much sleep during the night because of this.
Regards
Carol

[crackers]

when i started on pred @60 mg a day i looked in the mirror one morning and a total stranger was staring back at me.it just seemed to happen overnight. the weight gain was something i also was not prepared for.my weight had always been around 10 stone and for a 50 something very active and fit.suddenly i was craving chocolate bars and cakes, things i'd never eaten previously.sleep was another problem,i'd go to bed and wake up 2 hours later but because of the fatigue caused by wg i was knapping thru the day.the fatigue is also the reason i'm not getting enough exercise.you just can't win can you?

[capabayan]

Now that I'm on the maintenance dose of 5 mg, the weight has gone but not the scars.

I'm finally down to 10 mg, and have been for a few months now. Unfortunately none of the 40 pounds I've put on is coming off... even though the stretch canyons are most definitely appearing!! For someone who has always been on the smaller side, being overweight is quite depressing at times! What I really need now is an exercise buddy - but most of my friends work outside the home and want to do more than just walk once around the block, which is all I can handle right now. Oy!!

[crackers]

I certainly know where you are coming from with the mirror John says the same thing,it didn't help when he went to a clinic and one of the nurses said well you have certainly got the moon face associated with steroids if i had been there i would have insulted her too.
Hugs to you all
Sue xx

[nordberg]

These purple spots on hands and arms....not raised, not painful, appear, then fade, then new ones appear. Are they from Prednisone or Cytoxan or the WG itself ? They actually look like little old man liver spots..... just what I needed. N.

[andrew]

From my experience, unlikely related to the meds but more to the WG. How long have these spots been appearing? Have you reduced any meds (particularly Pred) at or about the same time as getting the spots?

[Sangye]

I agree with Andrew. I've had them on my legs since before the Wegs was diagnosed. They're common with Wegs, and usually indicate active disease. I had tons without the meds. Being on Cellcept only, I still get a fair amount, but mostly just when I'm overtired (which is almost every day *sigh*).