I really want to know what I'm going to experience when taking this drug for an extended period of time. I was just diagnosed last month and have now been taking 100mg of Prednisone for about 3 weeks. I don't think I have noticed any side effects yet and I feel like I'm just sitting and waiting for them to start.
I was started on 50mg and now lowered to 30mg per day and so far i've hve not noticed ny side affects at all
i have been on them now for about 6/7 months now
Has anyone been on 100mg per day for any period of time?
Hi VB,
Your doctors will probably have the goal of slowly tapering that down over time. I have slowly tapered down from more than that to 20mg / day,since the summer of 2012, but my prednisone is being supplemented with 2000mg of cellcept (Mycophenolate). Cellcept is also an immune modulator-it's primary use is to prevent rejection in organ transplants. Because of that primary use, and the fact that no one knows anything about using it for CIDP (or CIDP,itself, for that matter) Medicare declined to cover it for me.At a cash price of $780/month, I went without for about 3 months. They finally relented due to multiple aappeals by my doctor, and I'm back on it. I honestly am not sure it makes any difference over the prednisone alone. I'm thinking of stopping it, will need to see the neuro first.
Sorry for the long digression, but the point is that he tells me that the cellcept works with the Prednisone allowing me to use less of that.
So... has your doc talked about cellcept or another drug to "boost" the prednisone?
Yes, the steroids do have serious long-term side effects, BUT...
1.The side effects aren't as bad as the out of control effects of CIDP!!!
2.The side effects can be managed/minimized.
3. Steroids got me back on my feet from total paralysis from the neck down.
The three side effects that I have experienced are;
~(Possible) bone density loss. I did break one of the small bones in one foot when I dropped a trailer hitch from a jet ski on it. I was helping my son move it and I should not have been. I was only out of the wheelchair a few months and still using a cane.On a slight downhill slope, it started going faster than I could hobble,so I let it go but couldn't get out of the way fast enough.
I don't think that would have broken a bone had I not been on steroids, but who knows.
I take a once/week drug called Fosamax (Allendronate) to boost bone calcium.
If you are on steroids long term, talk to your doc about ordering a bone density scan. If you're a woman, you should have it done anyway past a certain age.
~Wieght gain (dammit). They did warn me about it, and they were correct. It may just be from an increased appetite, but you will get a little bit of a gut. I'm trying to work it off by swimming and cutting out a lot of carbs, etc, but it is hard to lose once you get that pot belly.
~Irritability. I don't know about this one...you'd have to ask my wife. If you see her, tell her I'm sorry and ask her to come home.
I kid.
I admit to having a little less patience with some people,some times, on some days, or maybe I'm just grouchy.
For me, raging heartburn, increased senses, insomnia, hypertension, and tremendous weight gain....good luck!
Well I'm only on 20mg. prednisone a day and my IVIG has been changed from 3 weeks to every five weeks, so I'm feeling pretty positive about that. Along with epilepsy for over 60 years, scoliosis for 50, and degenerative disc in my neck and lower back and now this CIDP, I've found that a positive attitude can work wonders. I now have my own business repairing and programming computers. Unlike Sunshine I don't believe in luck, I believe in a positive attitude will get you where you want to be, Gary
I was on Prednisone for 6 straight months.The only side effect i had was some weight gain.Man did I love to eat.I do have to say Prednisone cured me completely.I was in a walker when starting and now i`am running playing golf every day.It for me really was the miracle drug.I started out with the same dosage as you and in time went down the amount I was taken.
I hope it helps you like it did for me.good luck