hi-I came on a few weeks ago and wanted to get some advice and give an update. I had my dr appointment and she said to continue the 30 mg until I had zero pain. I am there I think it my question is does it indeed need to be zero pain? I have some slight pain when walking but couldn’t that just be muscle soreness or is it still PMR pains? In know how I felt when I was in severe pain but I want to taper down to 25mg but want to make sure it’s not too soon. I need to get blood work before tapering but I’m feeling like it’s time but I’m just not sure. My dr said she’d like me to get to 20mg as soon as I’m able and I have another dr apt at the end of July to check in. I’d like to be at the 20mg by then but I don’t want to hurry things as it seems that is a really bad idea!
Any advice would be helpful! Thanks!
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Hwle
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How long on the 30mg? As your first post was 10days ago, guess it’s about a week.
Ideally no pain especially with the chequered start you had, but if it’s not far off that it might be okay… but what exactly do you mean by slight pain with walking? Where, and when does it come on, how far are you walking?
And as you say, reducing too quickly if not fully controlled, you will end up going back up . No point in that, better to stay an extra week on 30mg and see if things improve. .. a week here or there is nothing in the lifetime of PMR.
No matter how quickly you and your doctor want you down to 20mg -and she did say ‘when able’] it depends on how well your PMR is controlled… rushing too quickly will just extend the time..
Just to give you my experience. I stayed at 30mg for three weeks till all pain had gone. Bloods were also back to normal by then.
I tapered first to 25mg; stayed at that level for two weeks ( still no pain), then to 20mg. It seemed then that most of the initial inflammation had cleared up. Another two weeks, and I tapered to 17.5mg, which was ok. Subsequent tapers were much slower, and always no more than 10% of the dose I was on, and never if I could feel any pmr symptoms.
You really do need lots of patience with pmr - not easy I know, BUT, you do have to manage expectations - especially any foist upon you by professionals, who want you off pred as soon as possible. Pmr has a mind of its own!!!
I don’t think I ever hit zero pain and I would say that is true of a lot of people with PMR. They do say if you can get 75% improvement that should suffice. There are of course some lucky people who do become 100% pain free.
Yes, DorsettLady you are correct it’s been 10 days on the 30 mg. I take 10 at breakfast and 20 at lunch. I am feeling pain just in my hip flexors but this is during a 3 mile daily walk I take. It’s really just very minor tightness so I feel like a few more days on 30 might be enough to work on reducing. I’d like to start reducing soon as it seems that I will experience some pain throughout this journey. Thanks for the info!
I’m trying to learn how my body is now with this new type of pain as I’ve always experienced some amounts of slight aches and pains as I was a former competitive gymnast with 3 knee surgeries under my belt- but the PMR pain was something out of this world that I’ve never experienced before!!
I appreciate you are an ex athlete, but even for you a 3 mile work may be too much at this stage.. as you’ve discovered PMR is a very different beast to other things. Not saying you shouldn’t walk (you do need to keep exercising) , but maybe not every day -or not 3 miles in one go.
PMR affected muscles take a lot longer to recover completely-even with your previous history. And that’s what it is at the moment - you need to treat like any break in training, build up slowly and gently.
Can I ask why you are taking Pred in two doses rather than one … did we suggest that or your doctor or you?
Splitting the dose can be very useful to get a good 24 hour result but usually it is suggested the 2/3 of the dose first thing and the rest a bit later, the other way round to what you are doing. The earlier your take the pred in the day. the more is out of your body by bedtime and the less likely it is to interfere with sleep. But as long as it works for you ...
The other point is that some people NEVER reach zero pain.
On the exercise front, my understanding is that my muscles have been under attack from my immune system and had become pretty ravaged. They needed to recover. I used to run 3 x a week and do yoga. I realised I needed to rest which was hard. I think I spent at least a month not doing any exercise except for normal walking.
I then started to exercise gently, the hardest thing was the yoga as that caused pain. My guide was whether I would have normally had pain from the class. The running I started by a run / walk for about 5 mins running. I did feel I could do more but I held back always remembering my muscles were in recovery. It's really hard to be patient and I wondered if I was being lazy. It was the exhaustion I was trying to managed which always came later or the next day.
I had my symptoms 4 months before I started Pred. It's so hard to be patient but accepting you are in the long game is key.
I'm now running short distances 3 x a week and going 80% of my yoga class. I'm opting for more frequent shorter runs which help my head rather than any distance. Really listen to your body. Good luck.
It is true that pred can mask pain from various causes. I spent a fair amount of time on my PMR/pred journey trying to sort out the difference between PMR and re-emergence of osteoarthritis pain. The confusion extended to a time I was sure it was OA until I realized I was starting to behave like I did before PMR diagnosis, increased my dose (which was around 2 at the time) and obtained miracle relief just like when first taking pred. (This was followed by a lengthy taper, but I was never anywhere near original starting dose.)
In your case you say you've had some pain for years, probably from your athletic activity. Advice already offered here to take it easy on the return to your relatively intensive physical activity is worth following. This is one time when slow and steady wins the race. Pred can cause muscle weakness and make us more prone to injury. On the other hand it is important to maintain physical fitness through sensible exercises. A balancing act. You will get back your former level of fitness, but please don't expect too much of yourself until you have successfully (and very slowly) tapered to a low dose of pred.
If you had a broken leg you'd be taking a lot of care of that leg and accepting that rehabilitation will take time. PMR is an invisible disease and pred can be so effective at removing the symptoms that we feel we are well enough to go back to our former normal. But the truth is, we aren't. It will take time, and you measure your progress by carefully tapering, balancing activity with rest, and remembering your body tissues are still vulnerable to injury even when you feel good.
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