Hi scidude, I am on 7.5 mg prednisone myself, down from 10 mg the past few months. I actually tried 2.5 mg one week ago, and it was not a good day. I had balance, staggering, general weakness problems. I do not have double vision problems, but had in the past before prednisone.

The day I took 2.5 mg was so bad, I took 10 mg the next two days to get control back, then 7.5 mg daily once again. I think I will stay with 7.5 mg for now and just be happy I don't need 10 mg.

Next month I might try alternating 7.5 / 5 / 7.5 / 5. I really want to lower prednisone.

I've done 60 / 50 / 40 / 30 mg doses and I hated it. Yes, it was effective, but only while on those high doses and the tapering takes so long, I hope to never go back to those levels again. That is why I just went with 10 mg and overall it is effective enough. I really want to try cellcept now, in hopes of weaning off prednisone completely.

Good luck, please keep us up to date on your dosages and symptoms. Your post really helped me.

I'm off of prednisone completely now (I'm still on azathioprine), but before I was completely off of it, my neurologist mentioned that I may need to be on a small dose indefinately, as if that was common, and I've heard of other people being on a small dose like that. I don't think it would be that bad as far as water retention or weight go - I've been on up to 50mg and the puffiness was way worse on 5mg than it was less than 10mg.

As far as bad things happening when I taper down, I had a recurrence of my symptoms when I was tapering down very early on, when I was going to 30mg from 40mg or something like that, but I was under a lot of stress and honestly that makes my symptoms worsen more than anything. When I first got diagnosed, I actually started getting better right before I was on prednisone because I think my anxiety started lessening when I felt assured that I was going to recieve good treatment at the neuromuscular clinic I went to. There gave been other times like that where I started getting markedly better when I had assured myself that my doctor was confident and experienced in her decisions about my treatment (one time this even happened when she declined to increase my dose, but I figured there must be a good reason not to!) Aside from that, I get a little irritatable for a few days when I step down.

I'm on a physiologic dose of 5 mg, and there are no plans to change right now. The dose is low enough that I don't have side effect (or side effects that I notice!), and I don't have symptoms unless I have really pushed myself or am sick with something else.

The prednisone comes with a lot of risks, but the trade-off is quality of life and insurance against sliding into a crisis. I don't think I have a choice about it, really!
~Joe

I was on 60 mg for a year, 45mg for the next year, and then 20mg for 9 month. I have tapered to 17.5 and am hoping to go down to 15 next week. The neuro says when you start tapering you can feel worse for a while until your body adjusts to the lower dose. I've had every known side effect to Pred there is, including Avascular Necrosis and thus having my hip replaced. Since you aren't having noticeable Pred symptoms, my advice would be to just stay on your dosage and feel good. I hope this helps!

I am on now on 30MG Prednisone daily. I was on 40MG for about four months. I reduced slowly last year down to 20MG every other day. At that point after several months I started having the symptoms you are experiencing. My symptoms got so bad I spent a month in the hospital in March of this year. I don't think you should expect the Prednisone increase to work in a week on even a month, but I expect that varies with the individual. I have had only slight puffiness in the face, but again each individual is different. My doctor told me he had someone on 30MG Prednisone a day for 30 years. I am also on 2500Mg CellCept daily and Mestinon as needed.

I've been alternating between 30 mg and 15 mg daily for some time now. I just saw my Neurologist and he considers this a low dosage. He advised me to take extra Vitamin D and Calcium-Magnisum-Zinc and to watch my sugar level. So far, my main concern has been controlling my weight gain.

I'm on 20 mg of prednisone a day. I wasn't always on this, but after a major setback in 07, i was stuck on the steroid. I may have to go up to 40 mg a day because my systems have came back severely. Seems like it takes my body longer periods to adjust and create the natural steroid that prednisone took the place of. Keep at it, it will get better.

first post here. I've been taking prednisone for 25 years (I'm 48) due to ocular MG, currently at 5 mg/day but have varied up to 50. I'm sure my adrenal gland is toast so I'll never get off it short of a cure. When I have more issues (eye and lid weakness) I bump up to 40 to 50 for 2 weeks or so, then taper back down slowly. For me, the big increase is very effective, as opposed to a smaller increase which seems to do nothing. Reducing too fast, esp. w/ low doses, is miserable - don't do it.

Also, I've been on cellcept for about a year and it has greatly reduced my need for prednisone. It's also cheap now and seems to have less effects than prednisone, so it's worth talking to your Dr. about.

I've had the same symptoms you described in eyes and face. Yes, I had problems with slow reduction. When I went from 20MG every other day to 15MG, my symptoms returned. Up until then I had been reducing in 5MG increments every three weeks. My doctor tells me I will probably need to be on some Prednisone for the rest of my life. I never got puffy and fat. I have been on high doses in the last few months (40MG per day). I don't think I have ever gotten any short term relief from anything but IVIG. I am improving at this point (probably 85% of baseline). I have also been taking 2500MG per day of CellCept for seven months. I was in the hospital in crises during the month of March.

First make sure your neuro knows what you are doing and follow there guidelines for weaning!! I am now on 20mg one day and 10 mg the next and that is the lowest I can go even though have tried to go lower a few times with out any succses and had to go back up. also if you have a infection that can change your needed doseage for a while sometimes.
So good luck hope this helps
Chuick