hi, After getting lots of good advice on how to go on from a fairly quick reduction from 60 mg to 20, i decided to reduce by 1mg for a start. That seemed fine. Then I went to the pool and did some aquajogging and a little breaststroke. I think that's what has stirred up an old problem with my sacroiliac joint (lower back) I've had off and on,in a lifetime of quite physical work as a gardener.Now after a couple of days it's quite excruciating. I see this as not being PMR related, except in as much as my muscles will have deteriorated in the five months since diagnosis, so wouldn't be supporting joints as they should. I have been very fatigued,so all movement has been very slow.
My question is, would going back up with the pred help? I've read that going back up with the dose helps in stressful times, but would this sort of thing be counted in with that? And would going up only from 19 to 20mg make any difference?
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Tiredcat
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Pred shouldn’t really be used as an alternative painkiller. Better to try paracetamol, heat/cold treatment and maybe physio - so long as you explain you have GCA/PMR to the therapist.
We do sometimes recommend additional Pred for stressful situations - but I wouldn’t suggest it for this. In fact I had similar pains all through my GCA journey - still do - and Pred didn’t do anything for it.
Thanks, Dorset Lady. I understand. I have exercises to do to help the old injury, I have started on them.
With my deathly fatigue but no pain, I have sometimes thought i would rather swap the fatigue for the pain. Now I remember what pain is like!
Ditto re pred. Heat on back, has many pillows as you can stand underneath your bent legs when you lay down. I want one of those they use of hip dexa scan as they are so comfy with lower back pain. You don't have IBS or something do you? I had a lovely surprise when Dr prescribed buscopan for tummy issues and it helped back, hip and thigh pain. Apparently some use it for period pain to stop the cramps.
Yes, thanks, I can see this is a different issue and not to be dealt with by prednisone.
I do have IBS, but amazingly it has been much better since I've been on prednisone, though of course still avoiding all the things that cause me problems.
I am in New Zealand so haven't heard of it. I've looked it up online and see it has lactose in it as a carrier (an excipient), so that would be no good for me, I'm lactose intolerant. Thanks for the suggestion though.
It's looking like I am at least sensitive to lactose and have had to stop eating dairy since may. I have tried it a couple of times but same tummy issues within 60 to 90 mins. I have been referred to gastro so trying to test what is tolerated by my tum and what isn't. If my tum starts buscopan really helps. I started on 2 to 4 a day.
If you are intolerant rather than allergic it is worth a try. They haven't got that much in as I have diabetes and they haven't effected my blood sugar at all.....unlike some other meds.
See if you can get kefir made without dairy. it could be a good way to rebalance your gut microbiome. I know people can make their own kefir using water or coconut milk or water and I believe a local company here has developed a commercial version, so you might be able to find it where you live.
At the risk of sounding rather pathetic, I have to say anything fermented is dynamite for my bowel. The opposite of what they say should be helpful I know. For instance,yoghurt of any kind, made with coconut or whatever, is, as I say, dynamite, don't want to get too explicit! The good thing is that since my first dose of prednisone my stomach has been much better. Strange.
Well, nothing really, except excluding more and more things from my diet. But there's always something that will upset it, giving in to temptation or social situations where it's just too much to refuse to eat something people have prepared for you. Or when I had to stay at the hospital when my mother was dying and eat whatever came to hand, though I tried to be as discriminating as I could.
The one thing that helps if it's only at the gurgly , tight tummy stage, is bubbly wine. We have quite acceptable affordable bubbles here. People think I'm kidding when I say it can help an upset stomach, but it works, though not at the later, rush for the toilet, stomach feeling like it's going through a washing machine stage.
Since I've been on prednisone I haven't had any wine, the fatigue has made me too weak to even feel like it, but my stomach has been better anyway.
Hello, Pred makes muscles, ligaments and tendons so much more prone to injury especially after months of reduced activity as you say. On the face of it, if it were me, I’d not see this as needing an increase in dose. Although we often comment that people should go up if undergoing a hard time, the dose of Pred should be minimised where possible. Trying to mask an injury with more Pred may be counterproductive. You might be better off finding someone who can attend to your old injury like a physio, osteopath etc.
Yes, thanks, SnazzyD, you are right.I have been pleased with how I have felt on my latest reduction so it would be a shame to go back up.
But it's the most stunningly beautiful morning here with the sun shining on the sea which is like a mirror, it's so still. My son and DIL are walking on the beach and I would like to be too!
I have SIJ problems too, Tiredcat, pred does not make a lot of difference to mine, but I find wearing a light back support (courtesy of Amazon) makes a lot of difference and I can manage fine with it on. I do have a proper hospital made support as well, but I keep that for emergency use!
I had so much pain at the beginning of this year, lower back, left leg, ankle, could not sit, or walk and the only time I got some relief.........lying down on my other side.
Physio............Bowen, nothing helped...........then I remembered Acupuncture which I had had years previously on the NHS. So found one and 6 weeks later.....................no pain at all, just a low grumble in my lower back if I overdo it. Worth a shot?
I forgot to add he also did Cupping. Now I had never heard of this and when I looked it up (Wiki) it is older than Acupuncture. Those ancient Chinese seemed to be onto something that has lasted. I know it does not always work for all...............but tell me something that does. We humans are complicated lot. 🤔
Yes, Mr. Liang, the acupuncturist I know, does cupping as well. i have been to him off and on over the years. I went to him when I had the painful shoulders that were the beginning of PMR, and since we didn't know what it was and there was no improvement after five visits he told me to see my doctor.Better than keeping me coming back indefinitely. Also interesting that others on this forum haven't had much relief from PMR with acupuncture. Ordinary lower back pain is a different story though.
Ditto jinasc re. Acupuncture. It has been helpful for SI joint pain. I am pending a lumbar nerve block procedure, which I hope finishes off the lower back pain for a while.
Also have used gentle chiropractic treatment, which has helped.
I'm no "expert." I am down to 4.5mg. and as of to-day, after 3 weeks, will try dropping to 4mg. I do have lower back pain, however, before PMR diagnosis, I knew that I had osteoporosis. So I am doing back exercises. I start them while in the morning hot shower and try to remember to do some during the day. When I was on a high dose of prednisone, all my physical pains were relieved, although I felt I was living in a perpetual fog. In the afternoon I become very fatigued, but that may get better as the adrenals do better. Perhaps, we all have to decide what distress we can live with, to make each one of our lives bearable.
Yes, I can't help but wonder at the fact that an old injury has started playing up just as the deathly fatigue has started to lift. The prednisone made me totally painfree until now, but the fatigue has been terrible. It does seem you can't have everything! Well, maybe one day...
Yes Noosat I am down to 5mg for the second time, last time I got down to 4mg and had a flare up, had to go back up to 60mg, so now I am back to 5. But as you get lower you do notice all your old symptoms coming back with a few new one too. Since being on press the muscles in my thighs are very painful I try to walk for exercise but some days I just can’t go as far as other I just feel wiped out. I think it must take a while even after the press are finished to build back up again. Best Wishes Kathy. xx
Thanks for kind reply. I have been trying to build back muscle, but am somewhat alarmed by one post that said I could permanently, tear, injure muscles by pressing so hard.
Most of what I'd say has been said. My experience - don't use pred for this purpose. I have some very painful arms now and I am sure it's a result of pred weakening the muscles. I no longer really expect them to get better until I'm completely off pred; I know it's not PMR pain.
The hospital guy I saw said I have 'steroid myopathy'. I think that means the reaction of the muscles to the prednisone, mine have overreacted and got weak in only five months.
It's complex, isn't it, but ultimately it's just time, eventually it must all come right. Musn't it???
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