Advice needed please PMR
Posted , 10 users are following.
Hi all
Can anyone please explain the dead slow nearly stop method of Prednisilone reduction?
I am new to this illness having been diagnosed in August this year. My initial dose was 30 mg per day and I was transformed. This was reduced to 15 mg after 1 month and I was fine at this level. I would not have known I had the condition.
My Gp reduced it again to 10 mg and all my symptoms have returned (although not as bad as they initialy were). I have been put back up to 15mg again, after three days on this dose I am still aching. Any and all advice much appreciated.
If anyone has any dietary advice that too would be appreciated
Regards
0 likes, 14 replies
faye______00403 sunnyliz
Posted
where it is understandable.....Funny how after finding this site
and getting so much info I can see right off the bat where
Sunnyliz was given so much wrong advice......
Oregonjohn-UK sunnyliz
Posted
Best of luck, John
Oregonjohn-UK
Posted
tavidu sunnyliz
Posted
Sorry you have had to join our club but this is the best forum to join with a lot of very helpful fellow sufferers. If 15 mg is still making you suffer I would go up to 20 mg for a month and then reduce slowly by no more than 10% a month and then slower after 15mg. I managed to get down to 15 mg last May but had a flare by dropping too quickly so have dropped by no more that 0.5 mg a month since then to avoid another flare. I am now at 12.5 mg without any problems so slowly seems to do it. Good luck, Dave (tavidu)
Anhaga sunnyliz
Posted
philoso4 Anhaga
Posted
It would be helpful to me (and perhaps others) if you could describe "comfortable". Is there stiffness? When? Does it go away during the day? Is there pain associated with the stiffness? Where? Must you wortk through pain, or is it quite bearable? Must you rise slowly from a sitting position and/or push yourself up? Is there pain lying in bed at night?
Is energy level involved at all in your "comfort", or is that a separate issue?
Also, when do you take your dose? Is it prednisone ort prednisolone? Do you take other pain relievers? Do you supplement with potassium or other supplements?
I hope I'm not asking too much. It's just that without specifics I don't know how to compare my situation with others'.
julian. philoso4
Posted
Prior to coronary stent about 6 weeks ago I balanced pred/stiffness/activity. Now I pace myself on all those little erratic lifting activities like carrying groceries, painting, cooking, polisihing, using spanners, but in coronary rehab found I could use gym equipment quite easily with little or no difference in pmr stiffness.
The effect of regaining some fitness has been huge increase in physical/mental energy level. With all the resulting effects on concentration, memory, problem solving, etc. I guess progression of the pmr, a few months ago on higher pred and same stiffness fatigue meant lots of doing things in small doses with lots of rests and snoozes. From early stages of having to force myself to do things I'd describe the fatigue as steadily reducing, but I also progressively lost my fitness.
For me the coronary stuff seems to have happened at a time that I could take advantage of the rehab for pmr, I don't know how others return to normal activity/exercise levels.
Relatively speaking I've so far been lucky with how the pmr has progressed in a relatively short time.
Anhaga philoso4
Posted
With regard to pain level, I am pretty lucky in that I do not have a time of day or night which is much worse than any other time. The worst experience I had so far was a sudden stressful situation which made me feel my body was on fire, and the next morning I took an extra 1 mg, the following day went right back to my dead slow protocol and have been fine. I was a bit more stiff the morning after my first 7.5 dose, but that has happened to some extent at the beginning of every other drop on dead slow, and has resolved itself away by the end of the sequence.
Energy is a different matter and I seem to feel more tired these days, or maybe I am just learning to relax more and take it easy as I was, like so many here seem to be, a very active (although not athletic) person.
Prednisone. I only take aspirin or acetaminophen for ordinary headaches. Because of a diagnosis of osteoporosis I am in the process of working up a proper supplement regimen for that which will include calcium hydroxyapatite, vitamins K2, D3, A, E. I also am taking liquid iron for low ferritin level, but hope that won't go on for long.
I hope I covered everything. I feel like I just wrote an essay!
Your turn now!
Anhaga
Posted
philoso4 Anhaga
Posted
Especially thanks for your definition of stiffness. I'll use your definition.
I'll also translate my dosage to prednisone dose. (Prednisolone 4mg is equivalent to prednisone 5mg.) My current dose is 17.5mg prednisone. I plan to reduce this weekend to 15mg, so I have some time ahead before getting to your level.
I have stiffness for an hour or two after getting out of bed in the morning. Picking up a twenty five pound stack of newspapers from the floor is painful. I need to be somewhat careful on standing from a sitting position, but the small pain is quite bearable. (Obviously I would prefer no pain at all.)
My primary reason for wanting to lower the dose relates to energy level and oxygen update. I have difficulty doing anything very aerobic. I play pickleball, but I have to pause for a minute or so between points to catch my breath. I really do not like having to do that, especially since it is very foreign to what I like to think of as my usual (before prednisone) condition. I would be willing to abide a bit more pain if I could get my "fitness" back.
I am also trying some supplemental chemicals that supposedly are beneficial for inflammation. A couple of grams of curcumin a day is usual, but I cannot say whether it is beneficial. My wife likes to cook and provides a really well balanced diet.
I've been diagnosed osteopena so I'm supplementing with calcium/vitamin D. I also eat yogurt regularly.
I also experience muscle cramps in my feet regularly, so I take 100mg potassium a couple of times a day. Don't know for sure that it helps, either.
Anhaga philoso4
Posted
Anhaga philoso4
Posted
philoso4 Anhaga
Posted
We live in a high rise condo of 120 units and the newspapers are delivered to the lobby in stacks. I could wait for them to be delivered to our door but I'm out of bed before 0530 and they don't deliver before 0700.
faye______00403 sunnyliz
Posted
Dr. diagnosed me gave me pred and almost no information about
pred or disease. Very general stuff..
Had no idea what this disease was about and really didn't find much
on what web sites I found. Somehow I stumbled on to this one
and have been so glad to find other sufferers with some good advice
Ask away, you'll find lots of help and info here.