to really knock this out.
Hello, been on 15 mg since February 18th. I feel 75% better overall..all hip and flank pain is gone, but my neck pain seems to have come back some. I see my GP next Thursday March 30th, and am hoping he will allow me to try 20 mg for week or so (I asked him on the patient portal and he said no, that we will wait to see my blood tests first..although my blood tests were fine to begin with.
I felt the"almost miracle" pretty quickly, so I do think this is the correct diagnosis. We have literally ruled out everything else possible, I have the medical bills to prove it. I am getting worried as I leave on a cruise April 28th, and really want to feel ok, obviously.
I guess my question is, anyone else out there who had to take the 20 mg to get real, true relief? I have read that on here, but would love to hear it again so I can go in there 100% adamant about it to him. I am not small, 5'9 and 199 lbs and don't know if it matters, but logic would tell me it does (that I would need a bit more than say a 105 lb, 5 foot person) to get the desired effect.
You DID make lifestyle changes to go with the pred? Pred isn't a free pass to go back to your previous level of activity - moderating actions that prod at the PMR is also required.
How much you need isn't entirely related to weight though often larger people do sometimes need more. But if you only manage 75% improvement it is always worth the doctor trying more - and that is what the 2015 Recommendations say - the lowest effective dose in the range 12.5-25mg.
Yes, I basically don't do much. Just putz around the house from the recliner to the kitchen and back mostly. The most I ever do it go to a store for 20 minutes, and that is like once per week. I am very afraid to do anything else, really. Thanks for the quick reply.
Maybe you could do with doing a bit MORE? Gentle exercise is helpful. Before I was put on pred at all I went to the gym every day to do aquafit and the earlier I did it in the morning, the better the day afterwards. I could manage Pilates and Iyengha yoga having done the classes - impossible without. You have to be gentle but exercise of that sort in a WARM pool is very helpful. It also reduces the loss of muscle tone.
ok, I actually looked up the nearest pool where they have a Tai Chi class..maybe I'll try that. I am always stretching the neck and into the shoulder because that is what it feels like I should do for the soreness, but it seems to make it worse, actually. Only thing that helps is lying flat on my back for about 45 minutes. Then is subsides and is lesser for a few hours, until it starts up again. It was glorious not having it for those first few weeks on the pred. Thanks again.
I had serious neck problems at beginning of PMR and also with a serious PMR flare about six years after diagnosis when at very low maintenance dose. I attributed the pain to osteoarthritis both times, but both times pred helped like a miracle. I've done neck exercises for the OA for many years, and continue those (plus a couple more from my current physiotherapist). These exercises didn't help at all, first before I knew I had PMR and then later with the flare. Neck and shoulder issues appear to be one of the key markers of active PMR in my case. Please ask your doctor if you can try the extra pred for a few days to see if it helps. (I have to say in both instances my symptoms disappeared very quickly at a lower dose than 20, but we are all different and you need what you need.)
An important point is how well an individual metabolises pred and I believe I may be very efficient, whereas someone else may only be benefiting 50%, or anything in between. Are you taking your pred with food, but not with any calcium supplement which can interfere with absorption?
Agree with PMRpro that it's a good idea to get some appropriate exercise. You don't want to lose too much muscle strength. Just take it easy and build up slowly and you should be fine.
Yes, I have done all the physical therapy for the neck (got worse each time), went to a muscle guy who tried to get adhesions in the fascia out and spent thousands and drove 1 1/2 hours each way, got better temporarily, but it never went away. The only thing I haven't tried is botox injections in there, but almost no docs do it. Each time I had a medrol pack the first few days I felt like my old self..but as I tapered under 20 mg it came back..hence another reason I think I need 20 mg..at least. Thanks for the reply!
Before diagnosis I was doing more and more exercises thinking that I was just out of shape, because a lot of my pain was just like the stiffness you get after unaccustomed exercise, only it never went away. Sure I made myself worse. Pred dealt with it all, and I was able to go back to exercising and walking without pain.
It was odd, that winter before diagnosis was particularly bad here and I was able to shovel snow, but getting out of bed, even standing from a chair, was agony. I do not know why this was the case. 🤷♀️
If I had a dollar for every pain management guy or gal that said "Have you tried exercise or physical therapy?" Golly gee! Never thought of that! You think I'd be near tears in your office if I hadn't tried it ALL. I have had MRIs, x-rays, PT, trigger point injections, muscle relaxers, painkillers, amitriptyline, you name it...this is the end of the line, Mister!
I note you're in the US. You know how during PBS fundraising they show lots of health-related specials? While I was so ill with PMR I watched that one on "Classical Stretch" and she was so convincing I thought I'd try it. Well, I practically crippled myself! At that point I thought I was dying. And it was soon afterwards I managed to get diagnosed by a new doctor. So I'd almost say if exercise doesn't help or even makes it worse, PMR should be one of the first things for a doctor to think of - although of course they must run the appropriate tests to eliminate other perhaps nastier conditions before confirming the diagnosis.
Agree, I think people (docs and friends, etc) all think you are lying when you say stretching/yoga/ whatever type of PT makes you worse. It's the first thing doctors suggest when you say "muscle pain". And also agree 100% that IF that is the case, PMR should be mentioned. No one knows about it, I saw like 10 different Drs and therapists. I found it on my own by googling "what condition does prednisone make better quickly" after another Medrol pack in 4 months made me feel 80% better overnight in Las Vegas (couldn't walk after flight) and this site popped up, thank goodness. And yes, I thought at that point I had a mass (which they did look for with the contrast MRI) because after ruling out infection and any bone type of condition with an immediate x-ray..that is what the orthopedist surgeon thought, too (a mass near the hip) and then he literally never told me anything again. After I told them my mind after blowing me off, I found PMR on this site and called the GP (again).
When I googled my symptoms I did turn up polymyalgia but when I saw it was treated with steroids I dismissed the idea as I couldn't believe I'd ever have anything which needed such serious medication and promptly forgot all about it. Goes to show how effective denial can be.
And yes, been taking with food, and taking calcium supplements 12 hours later
The advantage of the pool is that the water supports your unhappy muscles. Even just getting into a warm pool and walking in the water helps