End results of PMR
Posted , 12 users are following.
I'm down to 4 mg of Prednisolone, am at about ~60% of my pre-PMR functioning. I don't seem to be progressing physically toward my previous level of functioning. Not in any meaningful manner = still limp, balance still poor due to stiff muscles that can't react as they should, having to compensate and refigure most self care tasks. Maybe not really 60%, closer to 50. I can sometimes put one foot into the car first versus having to sit first with my feet on the ground then assist a leg up to the floorboard. I can always pull the car door shut which I had to do in stages for a while, I can pull my hose across the yard, turn water on and off = do many things I could not do in the thick of it. I just don't see that at this rate I'm going to make it back to hiking, walking around the block and conducting my life as before. Do most folks make it back fully? Or, not. I wasn't super athletic but worked a 6 hour on my feet moving around job, hiked in unimproved areas that were uneven at best, I usually had above the average steps for a 71 year old. Not now. Not remotely now. April will be a year since my diagnosis, took 5 doctors over almost as many months to find one who knew what I have. My sed rate was 128 !!!! at that point. Do most people get better return or is this normal? I can see it's highly individual, and the not-doing-so well of us are likely the ones still on forums, but...what's what???
0 likes, 12 replies
alebeau clicklaura
Posted
As a 71 year old male I am now over a year since my diagnosis and had 2 or 3 setbacks due to reducing too fast. I am now at 10.5 and reducing ever so slowly by .5 mg via the DSNS method. I am hopeful this slow reduction will leave me pain free along the way. I too used to have difficulty doing the most simple things but only in the morning hours. I discovered that splitting the dose half in the morning and half at night gave me my life back throughout the day. I can exercise first thing in the morning with hardly any discomfort.
My initial Sed rate was 176 and at that point I could hardly walk, sleep, etc etc.
I hate taking so much prednisone for so long but the choice is live pain free or suffer. My bone density has taken a hit but with exercise and diet I hope to reverse it over time.
Good luck to you and the rest of us. 😃
krillemy clicklaura
Posted
Sorry to hear this. I believe that the idea is to treat with a pred. dose large enough to make you will well at least 80-90% fit (treat to target). This is to get the inflammation (including symptoms, not only SED) down. THEN after 2 months you start reducing slowly so you will not fell bad!
So go up in dosis, 10-15 mg and start reducing. Pred. is not a monster drug in these lower doses 😃 I am sure you will have more answers confirming mine here. Good luck!
clicklaura krillemy
Posted
Thank you so much for your input. I'm feeling a lot more informed than I started out. I was in way too unrealistic a rush to be done with this. Good luck to you too!!
Anhaga clicklaura
Posted
Provided your actual PMR symptoms are still well controlled an increase back to the start will do you no good. Pred itself can cause muscle weakening, at its worst "myopathy" can be quite debilitating. What we need to do is regular moderate exercise to maintain range of motion and gradually regain our strength.
If, on the other hand, your current dose is not controlling the symptoms properly the standard advice is to increase by up to 5 mg (in your case 9 mg) for a short period of time, a week maybe, and if that makes all well again, then you can step down very quickly, but stop at the dose where you last felt the symptoms were well controlled, maybe 5 mg? From that point, wait a little while to make sure things are stable again, then start a new slow taper. This will help you recognise whether or not 4 really is enough, and you can stop a slow taper at any point, either to pause, or to return to the previous dose, if symptoms seem worse, more than simple "pred withdrawal".
Also, are you tapering by half a mg now? Once below 7 or 8 mg this is a very good idea as each taper is a large percentage of the dose.
Anhaga clicklaura
Posted
Oh I should have added that if fatigue is the issue, then an** extremely** slow taper is the way to go. Pred is what has caused your adrenal function to partially shut down, so although more pred will help it won't in the long run improve things. Just go very slowly and give your adrenals a chance to catch up. I have found that for every period of activity, even pleasant sedentary ones like coffee with friends, let alone hiking, I need about an equal time of down time.
BettyE clicklaura
Edited
It doesn't happen overnight but my experience was that, after 5 years of my second bout of PMR, it took about 15 - 18 months my energy and stamina levels did return to what I was content with given that I was getting on for seven ears older.
WHY is there no paste facility on here? I tracked down my previous very similar response to a related question only to find that, although copy worked, paste did not. Also, is there a way to search one's own contributions? If so it would be a big time saver as, inevitably, questions are often repeated, sometimes some time later.
EileenH BettyE
Posted
WHY is there no paste facility on here?
Next step, posting my comment but this far it works for me Betty, I just copied and pasted your question into this reply.
EileenH
Posted
Yes, so it does work - you have to be a bit careful about being sure it is blocked with click and drag I suspect. It is very pale pink ...
If you click on your name you get to your Profile page - and that lists all your replies. It just shows the most recent but at the bottom there is a View All option. Doesn't help me much with over 19000 posts but you won't have as many to look through!!!
clicklaura BettyE
Posted
thanks Betty! Yes, apart from stiffness, aches and all that stuff, energy has been VERY low. I'm hoping that, too, gets better. I'm not too big a fan of my current level of functioning, however it is so much far improved from pre-Prednisolone. I'm currently 50/50 between blessed and impatient.
EileenH clicklaura
Posted
Were you better than that at the start on higher doses of pred? I wouldn't be happy with that level of functioning and would query I was on the right dose. If you drop the dose too far then you might as well not be on it at all - either you clear out the new inflammation created each morning and are able to function or it mounts up until you are back where you started. Some people do continue to have problems but it isn't usually as bad as you describe, The starting dose should achieve a 70% improvement in the symptoms within a short time - less than that means one of two things: the dose is inadequate or this may not be PMR.
However, 10 months in a very early days - PMR lasts much longer than that: only about 1 in 5 patients is able to get off pred in a year, only 1 in 3 is off pred after 2 years. I would suspect you have never got the inflammation properly under control and have just continued from there. You almost certainly need far more than 4mg - half of patients take 18 months to get to 5mg.
dan38655 clicklaura
Posted
One year after I became afflicted with PMR, I found myself at the 5mg dosage level that had been prescribed for that point in time.
But it became glaringly obvious by then that the dosage wasn't doing the job.
I took it upon myself to increase my dosage, at first by 1mg which noticeably improved my symptoms and my energy level.
Looking back all of five years later, I should have been on a higher dosage at that time.
I am now at 2mg/day, which I must adjust seasonally based on my symptoms.
I would start by increasing dosage by 1mg, and go higher if that doesn't make enough of an improvement that you forget about pmr for at least a few hours a day.
Mornings just an hour or two after taking prednisone will be the best time to get things done, including getting outside, while feeling energetic. If this energy doesn't last through most of the afternoon then I suggest increasing dosage 1mg at a time until it does.
Prednisone is a substitute for deficiency of natural cortisol. At dosages below 7mg/day or so, the body will begin regulating cortisol level with help from the prednisone. So at this dosage level or below it, you should be mostly free of any negative side-effects from taking the prednisone.
Best wishes.
clicklaura
Posted
Forgetting about PMR for over 10 steps would be wonderful. I've been way too focused on getting lower and lower on steroids. Thank you so much for taking the time to respond and share your experience. I just have to make some changes one way or another. I really appreciate the feedback!