Have been on prednisone for about 3 months, started at 30 now at 20 after a disastrous reduction to 10. Have been on 20 for two weeks now. Still takes time in the morning to get going, afternoon and evening are better as far as mobility/achiness. I have steps in my house and it is Very difficult to go up the steps!!! GOing down is no problem. Am considering getting a stair lift. When I go up the steps, I take one step and have to rest a minute before taking another step. What do you all think?
I know just what your saying. I started that way two years ago and was not too bad in till this year when down to 5mg. Now I have a lot of original symptoms mainly a feeling of vasculitis where I cant get blood flow to muscles and they refuse to respond. My take is that it's all related to pred dosage. I'm very anxious to hear what some of my other friends have to say. Maybe we can all get you sorted out.
I don't agree with blaming the lack of muscle control and weakness on steriods. I've been on and off prednisone, 2 to 4 months out of the year, for almost 20 years, due to prior (before PMR) health issues. The only side-effects I felt were increased energy and very easily irratated. I never felt this total lack of energy and extreme exhaustion. This is just my opinion, not the opinion of this forum.
It's more likely the PMR that's causing the problems with your muscles and fatigue.
However, below around 7mg (for me it's 5 1/2mg) the adrenals have to start working again and sometimes you feel tired and lethargic until they work out you expect something from them!
Wilma, in my opinion you should do whatever you can to make your life easier. If you want to put in a stair lift, do it!
If you are still experiencing debilitating pain and stiffness, you may need to be on a higher dose of prednisone for a while. It took 25 mg for me to get the inflammation under control.
Doctors typically start with a dose of 15 mg, so I wonder why you started at 30 mg. Then the reduction to 10 was very fast- too fast, as you found out! But a puzzling series of decisions about your dose.
I hope your doctor is open to increasing the dose for a while, until the symptoms are under control. After a while with little or no pain and stiffness, you can begin a slow reduction.
Best of luck! PMR is extremely variable in severity and duration, so I hope you have an easy course!
Wilma I also live in a house with steps. At first, it was such an effort to go up or down ( honestly I was more concern about going down because of the risk of falling). I am a bit concern that you may not be at adequate dose of pred and that your decision on installing stair lift is motivated by your condition at the moment. If I were you, I would give it more time for pred to reduce inflammation and for you to adjust to it. My office is upstairs, so I make it a habit to stretch my legs and go get a drink or snack from a kitchen (downstairs) at least once an hour, thus forcing me to climb the stairs. I do it slowly, and take time to rest. I remember it took me about 2 weeks or so of this regiment before climbing stairs was not an issue any more.
While we have to careful and listen to our bodies even more with PMR, this does not mean not moving at all. In fact, I think that slow, measured movement is necessary to get our blood flowing again and help those muscles impacted with PMR to get some fresh blood with nutrients and oxygen.
Hi, I hear you, I am on 40mg of Pred a day and have 16 stairs to climb if I go out, and boy, it's hard > I also do one at a time, then stop. Once I decided to just go for it, and boy did I suffer the next few days in my legs and back.
I now have my food home delivered to my kitchen bench, and just have to learn to take it easy. I have had PMR AND GCA for 3 months, getting to know my body limits still .... I hope you find it easier soon. Cheers Dea
Hi Wilma, I agree with all other replies on here, it's still early days for you so would take enough prednisolone so that you are pain free enough to get moving.The longer you are immobile the longer your recovery will be. Even if it's just standing and walking to the other end of the house or to get a glass of water do it at least every hour. The less pain you have the more mobile you will be. Now after 2years and off prednisolone I don't notice the stairs anymore and make sure I exercise everyday. Another tip if you are housebound is to get your vit d levels checked you may need a supplement and vitk2 mk-7 is another supplement worth looking at especially if you have vasculitis.
Wilma I too have problems with stairs, I am otherwise doing quite well and down to 4mg pred. But stairs are a real problem, I go up and down one at a time and feel as if my thigh muscles are the problem we are even thinking of moving to an apartment or installing a stair lift .
p.s I am now in my 6th year of pmt🤔
It sounds as though you are not on a high enough dose of Prednisolone. Perhaps for you a drop of 10mg was too much. We are all different in our response to steroids and of course how PMR affects us also varies.
i started on 15mg and was unable to to cope with the initial planned drop to 12.5mg and tried 13.5mg and this worked for me. I continued like this on reductions of no more than 10% and am now 2 years later on 5.5mg. The mantra is 'Slow and steady wins the race'.
Jeanne, one of the well documented side effects of prednisone is muscular myopathy. Without question, it happened to me. I am or should I say I was a ompetitive rower and in full training when I started to notice the thinning and shrinking of my musculature. Doctor confirmed the cause.
I think your doctor has reduced your dose far too fast and in far too big steps since it sounds as if you went 30/20/10 - though I stand to be corrected.
Using pred in PMR is not like the usual way pred is used: hit the inflammation on the head and reduce the pred to zero. You clear out all the existing inflammation with the starting dose and then reduce slowly, in small steps, to find the lowest dose that gives the same result as the starting dose did. As already mentioned, each drop should never be more than 10% of the current dose - so even at 30mg, 3 mg is ore than enough. At 20 you are down to 2mg, 1.5mg at 15 - so 1mg drops from there make perfect sense.
Try taking your pred as early in the orning as possible - many take it about 5 or 6am and then settle down for another couple of hours - by then the pred is absorbed and starting to work. That is if you are on ordinary white prednisolone tablets. Prednisone may take a bit longer. Enteric coated prednisolone will take 5 or 6 hours to reach its peak level in the blood and it will be much lower than for the white tablets.
You don't say how long you had had PMR pre-pred - it may be that your thigh muscles have lost strength over that time because as soon as I started pred I could walk up (and down) stairs normally - I'd been dragging myself up with the handrail or crawling on hands and knees until then. I had had PMR for 5 years though - no diagnosis!
Maybe a physio could help to get your thigh muscles back to beng some use? I do see the attraction of a stairlift (I live on the second floor and we have a lift to fall back on but I only use it with shopping) but there is a lot to be said for trying to get your legs going again. The exercise is the only way to get the muscles back to normal. You haven't really been on pred long enough for it to very much affect your muscles - muscle wasting can be a problem for some people with some steroids: I had it with Medrol for example but not with prednisolone or prednisone - as soon as I switched to prednisone the muscles started to build again.
Are you also on statins by any chance? They absolutely floored me within a few days - I was already on Medrol so it could have been the combination but they are notorious for that. .
I agree. My undiagnosed winter with PMR I was out shovelling snow with little difficulty (having trouble getting dressed or getting out of bed but I could still shovel snow and it was the winter from hell, go figure). Following winter, on pred for about six months by then, found I could not do nearly as much heavy lifiting, even though the flexibility issues caused by PMR had all been resolved by pred. As my dose lowered I felt I was getting a bit stronger again, but even that improvement hasn't got me back to where I used to be.
Handbrake what is Vitk2 mk-7?
Vitamin K2 not K1 is important for getting calcium into the bones where it belongs. It comes in a number of versions and there is some thought that mk7 version is the best. Usually we have to get it from supplements as it's not readily available in the modern diet. We can convert a little K1 in our own gut, but apparently we're not very efficient at doing so.
I hadn't thought about Pred bieng responsible for this, but perhaps I should. I have spinal stenosis and I also have narrow and steep steps where I live. I simply go up on all fours which is easy. However one cannot do that when out :-) so take it slowly and step up one step and bring the other foot onto that step before repeating the process (sorry not easy to explain). I assumed spinal stenosis was to blame.
that's the bizarre thing about PMR - I can do some things but not others. Putting on socks or a bra is next to impossible but I can paint a ceiling!