Hello everyone, I am new to this site having just been diagnosed finally with PMR. I have been in agonies of pain for about three months and seem to have a doctor who initially thought it was just a flare up of my osteoarthiritis.
However after three border line blood tests he yesterday decided to put me on 30mg Prednisolone. So far one dose yesterday, one this morning. How long would you expect me to continue to feel so tired, stiff and generally unwell, before the steroids begin to work?
I have an appointment with my rheumatologist on 26th July, when I will be very relieved to get some realistic response about this most debilitating illness.
Initially my GP put me on eight cocodamol daily which had no effect on the pain whatsoever, except to cause me to feel really ill in different ways.
Have other's had similar problems please?
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shania
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I too have had an initial dose of 30mgs twice for pmr. The relief from pain was dramatic on both occassions, but everyone is different in response to drugs. Your rheumy is the one to sort you out . Most G.P.s do not have the experience. I was told to stay with 30mgs for a week. I could function even though I looked like a bloated mess. Your osteo. is bound to be complicating things, but hang on in there until you see your rheumy.
Good morning pats, thank you for the information. Today is my third day on the steroids, already I am feeling generally better, and surprisingly some of my tiredness is lifted. I am waiting eagerly to see my rheumatologist to get some low down on this illness and the possible consequences as I continue to age. I am 68 years old now, a widow and of course live alone. It has been a very frightening experience so far. Today I have an appointment for bone density, so shall see where we go from there. Again, many thanks. Shania.
Hi Shania. So glad you're picking up. I had a bone scan when first on pred. It was good. That one was about 15 months ago. I think I might ask my G.P. for another one.
So glad I was able to help. Pats.
P.S. Yes, it is very scarey, but it gets better because there's so much more support now compaired to what I've heard it was years ago.
Good morning pats, yesterday was an exceptional day for my pain reduction, consequently I went mad working on tasks in the house which I have been unable to do for months.
After this I went for my bone density scan and my day finished with all the physical exertion done by 6pm.
The day had consequences though. My pain was much more intense last night, and had difficulty in getting comfortable for sleeping. Is this a natural reaction for over exertion?
The other thing I wanted to ask, does our sleep pattern alter with the steroids? I am tending to not sleep as deeply or soundly, and am waking up very very early.
I couldn't go to bed before 3 am when I first started the Prednisolone as I was too wide awake, up again by 7 - before I would be tucked up asleep by 10:30! Now, two months later my sleep pattern is better , and getting back to normal. Still tired by mid afternoon though , and have to pace myself as I am very stiff and achey most of the time.
Take care,
Karen
Hi Shania, Sorry to say it, but you've fallen into the same trap that most of us do when we feel normal again. We assume we can push our bodies like we used to do and BANG, the pain is back! Try to remember, you've got an illness that can't wait to take over, and it will if you over do it physically or mentally. I was told - pace yourself, and I didn't understand what experienced sufferers meant for ages. I'm beginning to now. 17 months on and I'm getting the drift - do everything in short bursts. If you've got to go out, don't do a lot round the house as well. If you feel tired, put your feet up and take tea and a bite to eat or go to bed for an hour and rest. Spoil yourself! It could make all the difference as to whether or not you have to increase your pred.
As for sleep - we're all different, but on 30mg this was my experience. I had nightmares, I got up at least twice nightly for a pee. If I managed 5 hours sleep at a time, I was lucky. I made up for this during the day by going for a nap. As I said, spoil yourself.
It will get better and easier as you drop the pred. Knowing what causes these side effects is half the battle. It's a combination of the drug and the illness. For me sleep is a great help. It's as if my body is trying to tell me this and often I will sleep for long periods. I always feel better for the extra rest.
Again many thanks pats for a very informative answer. When you talk about really restful sleep, it seemed that for the past three months or so, after lunch I would just get on the sofa and totally collapse although I was in huge pain. Sometimes, it was for a couple of hours, but the contra implications were that I woke up stiff as a board and had to go through the loosening up process again. Seems we are darned if we do and darned if we don't !!!!
Hi Shania, The stiffness is caused by the illness. As the pred knocks it back the stiffness will ease off. In the early days of my illness I was just the same as you are now. Stiff as a board after sitting or laying down for any length of time. You just have to go with it. The stiffness will diminish as the pmr dies down. I was on 10mg and below when this began to happen. One night after watching the Bonfire Night display at Dartmouth, I got out of the car with my partner to go for a walk before we motored back home. It was before I was on pred and still undiagnosed. It was very cold and both my legs were paralysed. I couldn't walk one step. Just collapsed back into the car.
I've been on the lap top for quite a while now. When I'm finished I will get up and walk away with ease. A few weeks ago I couldn't have done that.
Good morning, Pats and Karen, thank you very much for your responses.
Sorry for the delay in my reply. I took my 30mg Prednisolone for one week with wonderful pain relief. Now though my GP has put me on a sliding scale of 25mg x 4days 2omg x four days 15mg for four days until I am down to one 5mg for four days then nothing. I do not see the rheumatologist until the 26th July, and already am feeling the effects of lower dosage. Will this be a continuing thing, or will my body acclimatize? Most concerned to wake up this morning with stiffness in my shoulders again.
Hi Shania,
This is my advice based on my personal experience of drops on pred. 30mgs got your pain under control. GREAT. Why, I wonder, were the drops reduced to four days between when, unless you were experiencing problems, you could have gone with the original regime, and stayed with the 7 day drop.
I was advised by both my G.Ps. and rheumies to listen to my body. It does not make any sense to continue drops if you are in pain for more than a few days i.e. 2 or 3. If the pain comes back, go back up to the dose that knocked the pain back, and then drop more slowly. That means extending the period between drops. That way you will get off pred more quickly.
When I was down to 20mgs, after a few weeks, I found any drop more than 1mg at a time impossible. The pain came back. My rheumy had done the research and was happy to leave my drug control to me. She said that if the drops continued whilst I was in pain I would be on pred for too long. I know she is right. I'm now on 7.5mgs and hope to drop to 7 next week. I reduced by 1mg at a time after 20mgs. Half a mg after 10mgs.
Today I felt a bit achey. So I took 2 ibuprofen and then I felt fine. I am allowed to take ibuprofen now and again to act as a back up to the pred. I would not take it every day. It is the only other drug that works for me.
If you really are in trouble with the pain, my advice is go back and see you G.P. and make that very clear.
I hope that when you see you specialist your drug regime will get sorted. Go armed with data regarding your experiences of pain and dosages etc.
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