PMR Treatment

[wolfgang237]

Following a diagnosis of having PMR which manifested itself with severe upper arm muscle pain almost overnight I was prescribed 15mg prednisolone reducing by 1mg per 28 days. Down to 7mg per day now. Instant relief from second day of medication!! I am not taking the prescribed alendronic acid plus calcium / vitamin D tablets though so as to limit side effects of taking too many different drugs ie the steroids although I don’t seem to be having any apart from tiredness. The question is am I risking osteoporosis bu NOT taking the acid tablets plus vitamin C and D chews ?? I am male aged 72 and have never been ill in my life and pretty fit at 6 foot tall and 13 stone 9 lbs so hopefully this will continue!!

[GOOD_GRIEF]

Definitely take the calcium and the D. Most of us need them even without Pred. Don't take them with the Pred. I take mine with a meal to minimize stomach discomfort , and at least 2 hours before or after any Pred dose.

Taking or abstaining from AA is a calculated risk best assessed by you and your doctor. Some won't touch it and do fine, and others have limited choices due to advanced osteoporosis.

It's all a balancing act. We need the Pred to deal with the PMR, and we need the calcium and D to deal with the Pred.

[DorsetLady PMRGCAuk volunteer]

Hi wolfgang237,

Welcome. There is no need to take the Alendronic Acid unless you have had a DEXA scan and it proved necessary. Must admit it’s a very contentious subject on here! I took it, but then I needed it, most won’t and don’t! But I would suggest you take the VitD/Calcium supplement for your bones. Plus good quality yogurt. Keep fit, but not too energetically.

You may find the level you’re at now a bit more difficult- it’s around the time your adrenals need to start working again.

Good news - males seem to deal with both the PMR and the Pred better than ladies.

You seem to be doing well, please keep in touch. We like good news!

[HeronNS]

Right, no OP drugs before having a DXA scan. And be aware that nutrition and exercise will improve bone density in spite of some doctors thinking that only medication works. Even if you feel you need to take an OP drug it's still a good idea to do all the "natural" things anyway. Eating right, taking a few supplements and appropriate weight bearing exercise can do you nothing but good. As none of the OP drugs should be taken for more than a few years really we none of us have any choice in the matter but to take our health into our own hands.

Take calcium supplement at a different time of day from your pred.

[wolfgang237 in reply to HeronNS]

Thanks HeronNS

YES I don’t want to take unnecessary drugs on top of prednisolone so good food and exercise seems a much better approach. So thank you for your response. Kind regards.

Wolfgang237

[Celtic PMRGCAuk volunteer in reply to HeronNS]

Heron, so agree with the "natural" way. Due to an oversight not even any calcium plus Vit D for me. I credit oily fish 3 x weekly plus other anti-inflammatory foods, plus Tai Chi and, once over the worst and on the lower doses, Nordic Walking as probably the reason I came through my years on steroids starting at 40mg unscathed bone-wise. In fact, there was a lady in my Nordic Walking class who had taken it up due to being diagnosed with osteoporosis and now has normal bone density. Nordic Walking is great for balance problems, too - at least it proved so for me.

My PMR/GCA was diagnosed long before the warnings were issued about Alendronic Acid and the need for everyone taking it to be given a break from it after 5 years at the most. If you need it, you need it, but rather than taken needlessly it should be held off until then.

[HeronNS in reply to Celtic]

That's great, Celtic. My friend who set me on the natural path told me later, when I asked her, that she believed the Nordic walking was the single most useful thing for her when improving her bone density. She started out with a diagnosis of osteoporosis, which she reversed (confirmed through her successive DXA scans), and continues to improve, so it's pretty good evidence that the natural methods can work. 😊

[Celtic PMRGCAuk volunteer in reply to HeronNS]

Yes, proof indeed, Heron!

[Celtic PMRGCAuk volunteer]

Wolfgang, I didn’t take any calcium or Vit D during my 5 1/2 years on steroids but that was purely due to an oversight - my GP thought my rheumy had prescribed them and vice versa, and at the time I was none the wiser! Perhaps I was just lucky but I came through unscathed. A calcium plus Vit D supplement is highly advisable whilst on long term steroid treatment to offset the potential side effect of thinning bones. The Vit D element allows more calcium from diet to be absorbed into your body. Most of us are deficient in Vit D whether on steroid treatment or not, and any serious deficiency can lead to body pain not dissimilar to that of PMR. The normal range is between 75 and 150-200 depending on your local health authority’s guidelines. Mine falls to the mid 30’s during the Autumn each year and I take 1,000iu of cholecalciferol (Vit D3) for 3 months of each winter which restores it to the upper 80s. If you still prefer not to take the recommended calcium plus Vit D supplement, I would at least recommend that you have a Vit D blood test if not already done plus a DEXA bone density scan to get a baseline reading.

[wolfgang237 in reply to Celtic]

Thank you Celtic for your precise and informative response. Much appreciated ! I am only on steroids for a year ( 6 months to go ) so hopefully no return of PMR once prednisolone stopped. Kind regards.

Wolfgang237

[SheffieldJane in reply to wolfgang237]

Eek, Wolfgang, Being off Prednisalone in a year would be unusual and painful. PMR lasts between 2-6 years statistically. Please don’t let your doctor be too prescriptive, it simply doesn’t work.

[wolfgang237 in reply to SheffieldJane]

Dear Sheffield JANE many thanks for the info. I feel great and no pain even with reducing down to 6mg from March 1st. I respect your knowledge and advice though so hopefully the next few months will tell. Kind regards. Wolfgang237

[Oldman-1 in reply to wolfgang237]

Hi mate, I felt the same for some 4 months of this strange medical condition. But it`s sneaking back just to remind me that it hasn`t gone. For me, it`s an experience to pass on to others who may feel it`s just a passing issue.

[Celtic PMRGCAuk volunteer]

Wolfgang, I really do hope that you reach your expectations of only being on steroids for a year. I have only met two people who have been that lucky. It certainly sounds from your first post that you are doing extremely well in having reduced successfully in textbook fashion in your first six months. You would be wise to slow the reductions from hereon in as you are now around the dose where your body’s natural steroid (cortisol) will need to kick back in with its pre-steroid production, having been suppressed by Pred, and that takes time. Failing to do this can, and often does sadly, result in flaring inflammation. Slowly slowly is key!

[wolfgang237 in reply to Celtic]

Celtic many thanks for your excellent information. I will take all this onboard. I am down to 6mg from March 1st and feel great with no pain but will value your advice and tread warily. Kind regards. Wolfgang237

[SheffieldJane]

Hopefully you have healthy bones? You may want a DEXA scan to be sure. I would take calcium along with your vit D - steroids are hard on bones. Alendronic Acid and it’s like are getting concerning reviews following long term use ie more fractures than people who don’t take them. Personally I fear the side effects.

[Mahnahvu]

My mother was on Pred for 2 years with her PMR. She lost 3 inches in height due to osteoporosis. Now that I have PMR, I'm being vigilant taking my Calcium and D supplements, especially since I don't drink milk.

[Oldman-1]

Hi mate, I was 6` tall and 74yrs. I`m now 5` 7" through scoliosis of the spine. I`m taking prednisolone, calcium vit d and alendronic acid. Personally, I don`t want brittle bone problems. My dosage for pred started at 20mg last September and is reduced to 12.5 now. My consultant has prescribed an 11 month plan to see what the effects are. Over the last 2 weeks, I had a mild reoccurrence of the original symptoms 5 times. Other side effects are a general weakness, loss of weight though not appetite. I`ve always been very fit so as I come to terms with this medical problem I`m as determined as is possible, not to give in to it. DO take your prescribed meds mate, in particular, the calcium and alendronic.

[wolfgang237 in reply to Oldman-1]

Many thanks for your info. Ok love in hope I can finish the prednisolone in the next 6 months ( one year in total 15mg reducing to 1 mg ) Kind regards. Wolfgang237

[Brandon47]

I've had pmr for two years now down to 1 mg about to cut out completely. I have been taking vit d etc and recently had a bone density scan which showed my bones were normal. Hope this helps

[Soraya_PMR]

You may find this of interest...

happyhealthylonglife.com/ha...

[wolfgang237 in reply to Soraya_PMR]

Many thanks for this info ! I will be starting on dried prunes this week from now on. Much better than taking alendronic acid plus chewing vitamin C plus D tablets daily ! Kind regards. Wolfgang237

[Soraya_PMR in reply to wolfgang237]

Enjoy!

[wolfgang237 in reply to Soraya_PMR]

Many thanks ! Will do suitably washed down with some quality red wine or a single malt whisky with ice !! Can’t wait. Kind regards. Wolfgang 337

[PMRpro Ambassador]

Ask for a dexascan and take the calcium and vit D. I have never taken alendronic acid but did take the calcium and vit D - my bone density has barely changed in over 7 years on PMR dose pred.

As for the duration of PMR - this is the most recent publication on the matter and one that can't really be argued with as it is a retrospective one!

medpagetoday.com/rheumatolo...

Under 20% are off pred in a year - so it may happen, but the chances are it may not. Don't care what your doctor tries to tell you...

[wolfgang237 in reply to PMRpro]

Many thanks for your comprehensive info especially the medpagetoday article. I live in hope I can cease prednisolone in the next 6 months as I’m fighting fit at the moment ! I might start taking the vitamin C plus D tabs but was told the body doesn’t effectively absorb them with ale fro ice acid also. Kind regards. Wolfgang237

[PMRpro Ambassador in reply to wolfgang237]

"I might start taking the vitamin C plus D tabs but was told the body doesn’t effectively absorb them with ale fro ice acid also"

Since I assume you mean alendronic acid - it is particularly important for you to take the supplements with AA as it can only work when there is enough calcium and vit D available for it to capture it into the bones and they should have been checked before ever starting AA. Without them you are at risk of developing low calcium levels in the blood/muscles and that can have very unpleasant effects as well as your bones not getting any benefit from the AA.

Feeling well and "fighting fit" on 7mg if the dose you need is 2mg is one thing - still feeling that way on 2mg is another.