Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

thx looking forward to learning

Hi, I am newish. 10 mg per day prednisone for PMR. Last 10 days. It helps 80% after about 2 or so hours. I take it 7 AM or before. I am diabetic so I have to take insulin at same time to cover the big rise. By 5 or 6 PM the pain is returning...not as bad, but not great. My rheumatologist suggested I try splitting dose. 5 AM and 5 PM. How would you all do this...I am most uncomfortable 5 PM through the evening. Also, when I get up but not as back as PM. I rise about 5:30 AM. Thanks for ideas.
Sharon

I split 10 taking 2 or 3 mgs. at night and the rest first thing in the morning (using one 5 mg. and five 1mgs.). It may be that you're reducing too quickly.It doesn't sound like 10 mgs. is enough to cover enough of your pain. You don't say when you were diagnosed, but taper slowly especially below 10 keeping to no more than 10% of your dosage.

Diagnosed 2weeks ago. Not tapering. On 10 mg/day. Want better relief at end of day. I may try the way you suggest! THANK YOU. I think I might need a little more but Bec of diabetes I want to minimize the rises in sugar and the need for a lot more insulin! I changed my diet to low carb and Sm going intermittent fasting too. It really helps w need to cover sugar rises. I’ve last 2 lbs this week doing this which I am happy about. THANK YOU For response !!!.

Sounds like you have a plan and a good reason for it. Low carb should help. Congrats on the weight loss. Not to be a downer, but just to manage expectations. Many of us PMRers have or have had plans, but the PMR dictates how it will go. I just recently had a great plan to get to 8.5 (half mg at a time). At 10 I'm pretty good; at 9.5 okay; and then at 9 the pain gets worse. I stayed at 9 for a month to wait it out, but finally had to increase my dose again (for a few days by +5 mgs. to 14, and then reduced back to 10, the place where I last felt decent). I know you have diabetes and more to concern yourself with, but the objective with PMR is not a drive to zero prednisone, but to find the place where you are mostly comfortable. The PMR is still there covered by prednisone. If you don't take enough, the pain will increase or you'll have a flare. The best to you truly.

Thank you for these helpful reminders! For me, there is no plan yet to begin any taper...I just got going! I think my Rheumatologist is pretty sane and cautious. I feel very supported. It's the weight and diabetes impact of the steroids I am working to mitigate and it seems at this point successful which is gratifying. Thanks for all the reminders! Best, Sharon

Hi Sharon...my last two cents here (don't want to bug you): I know everyone is different, but in general people start out between 15-20 mgs. That seems to get the inflammation under control and provides the all day and night relief you are looking for. Since you mentioned being at 10, I assumed you'd been on for awhile and were tapering. Anyway, if you continue to experience discomfort in the evenings, you may want to talk to your Rheumy about increasing the dose (which, yes I know, is not what you want...none of us do). I felt complete relief at 15 mgs., It's the tapering that's been a challenge. It takes time, but you'll work it out. Regards, Kathy

Hi there
I am new to the group ..I hope everyone is doing well today. It’s been 3 years PMR/RA for me. The first day of my doctors appointment I began 10 mg and after three years I am at 4 mg . I taper very carefully to a half .. sometimes a quarter mg. However I have noticed even the most smallest increment of tapering lower - I am aware of. So being aware and actually toughing it out is what I have played with.
I have managed so well my weight, I exercise daily if my body is able in the pool, very thankful for water exercise. Being very conscious of bad carbs, sugar, . One thing I’d like to mention is I don’t know if this discomfort will ever go away since it’s been with me so long and when I try to taper it just comes back. I hope it burns itself out at some point but in the meantime I’m hoping that everyone who has this hangs in there and just manages their symptoms the best they can. Thank you for this site. It is wonderful to have a group such as this to discuss and run things by each other!

Hi leilalou, PMR and its big sister (I call it) Giant Cell Arteritis are self limiting diseases that are supposed to eventually go away. The length of time before remission varies a lot. Prednisone, at the proper dosage, is supposed to dramatically reduce the symptoms. I was not diagnosed for a year, so not on Prednisone, but with the PMR especially I always felt much better at night, somewhat human, but then, every next morning the horrible pain and stiffness was back. I have GCA now, started on 40 mg of Prednisone the third week of May, tapered down now to 15 mg. for the last two days. I'm always apprehensive when tapering, based on what I've read here, I know the pain can come back with a vengeance. So far, I've noticed an odd twinge once in a while, but nothing like the stabbing pains I was getting in my head or the incredible neck pain and stiffness before I started the prednisone.. I remember volunteer mentor @johnbishop posted a schedule of how he tapered, based on the scale of pain he experienced. It's probably in a tapering discussion. Wishing you the best, tsc

Hello @leilalou, I would like to add my welcome to Connect along with @tsc and others. It sounds like you have made some lifestyle changes to help control your PMR. I wished I would have done that the first time I was diagnosed with PMR in 2007.

I've had two occurrences of PMR both were treated with a starting dose of 20mg prednisone. The first time it took me 3 and half years to taper off of prednisone. The last six months I was going back and forth between 1mg and 1/2mg prednisone until I could stop taking it with only minor aches when I got up in the morning. Then it came back with a vengeance 6 years later and my second time around went much better because I started what you have done - more exercise, eliminating sugar (almost 🙂) and eating more healthy and anti-inflammatory foods. It took me a year and half to taper off of prednisone the second time. My rheumatologist suggested I keep a daily log of my dosage and level of pain (1 to 10) and I used that the second time around to help with the tapering.

Here's a discussion you might find helpful:
-- Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/

There is another discussion you might be interested in following since you mentioned being very concious of bad carbs and sugar.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

What has been the hardest challenge for you with PMR?