Study on preds use for PMR, & side effects (with a surprise conclusion)

[Pipistrelle]

A link to this study might already have been posted, as it came out just over a week ago, but as I hadn't seen it posted I thought I'd put it up, as the results are encouraging for all of us who are or have been on steroids.

Basically this Mayo Clinic study found that people who've taken steroids for PMR, even for many years, have *no higher incidence* of ANY potential steroid-related side effect illness (such as diabetes) than people who do NOT have PMR and are NOT on steroids -- excepting for a higher incidence of cataracts, and that may be accounted for by the closer eye screening many with PMR will have had, due to possibility of GCA.

The other interesting finding here is that the median time people were on steroids was 6 years (!!) -- far longer than that 2-3 year estimate we all read/are told. Also, many patients were started on much higher doses of preds than has been recommended for some time.These two points will come as no surprise to anyone who has been here for a while!

The article is a fairly accessible read:

practicalpainmanagement.com...

Karlin (Pipistrelle)

[DorsetLady PMRGCAuk volunteer]

Hi Pipistrelle,

Interesting in as far as it goes, certainly in the amount of time people are on steroids. But, as you said, we, the patients probably knew that already!

Although I was on steroids for only 4 & half years, my total consumption (start dose 80mg) was undoubtedly high. The only real problem I had was Pred induced cataract, I did gain a bit of weight at beginning, but lost it as I reduced. BP ok, and slightly raised blood sugars but nothing to get excited about!

Steroids do seem to be regarded as the 'demon' drug by many patients and doctors alike (including Rheumies whom you would hope were more educated).

Hopefully these findings may change a few minds, but I won't hold my breath!

[PMRpro Ambassador]

"While the association guidelines do spell out an ideal dose range, they do not specify ideal length of treatment"

What a stupid comment! There is no "ideal length of treatment" - everyone is different and you treat until it goes away. How long is a piece of string?

Like DL - hopefully it will calm their fears but somehow I doubt it will reach them...

[GOOD_GRIEF]

Thanks for this. I'll be pushing it under my rheumy's nose when next we meet. She's in a rush and a panic about me being 6 months on 20mg pred, which I have reduced now to 19mg for the past 2 weeks, and will reduce next week to 18.5mg - with no signs of side effects. I would have been further along with reduction had she not insisted I go from 20 to 18.5 overnight last May, before I was ready and farr to fast, triggering a flare that has left my Achilles tendons still sore.

[GOOD_GRIEF in reply to GOOD_GRIEF]

Oh, and I already had the cataracts and the removal surgery long beofre PMR showed up. Not worried about that factor at all.

[Sandy1947 in reply to GOOD_GRIEF]

When you reduced did you simply go to new dose and stay there? I went from 25mg to 24 by alternating old dose new dose for a week then new dose for a week. Yesterday I dropped to 23 and I noticed increased shoulder pain during the night. Second day, today, I'm on old dose. I was thinking of just staying on new dose but I'm scared. Tapering is challenging and I do best when following a plan.The only reason I'm trying to go as quickly as possible is because of osteoporosis. My balance seems worse since diagnosis and Pred.

I am doing Tai Chi, Quigong and lower body exercises to improve balance. Also go to physical therapy to strengthen shoulders and help wrist tendinitis.

PMR is my new full time job!

I appreciate suggestions.

I am

[GOOD_GRIEF in reply to Sandy1947]

The plan I follow now is the one PMR lays out for me on a daily basis. I'm on a split dose, 10mg late evening and the balance in the AM at 6. If I am good in the morning, I go for the low dose. If I am not, I take the extra .5mg.

Since I still have a full time job, I get plenty of exercise commuting by walking, bus and ferry, and walking during lunch hours. And since our office is a full NYC block long and wide, I get plenty of walking in as I shuffle between meetings. The best thing is that I don't have much time to dwell on my aches and pains. I just get on with it.

It's all good. And will get better.

[Sandy1947 in reply to GOOD_GRIEF]

Love your attitude!

[Rugger in reply to Sandy1947]

Have you seen this?

healthunlocked.com/pmrgcauk...

It has details of several different taper plans. Sandra, who developed it , has PMR and is a Computer Studies student.

[SheffieldJane]

Thank you for posting this Pipistrelle, I hadn't seen it. It is good to read some good news for a change. I hope our doctors read it!

[Pam47]

Yes, thanks for this. Some reassuring news for a change!

Pam

[Jackoh]

Thanks for this- good to read some good news for a change!!

[RheaV]

My concern with Prednisone is osteoporosis! I've already been diagnosed with osteopenia.

[PMRpro Ambassador in reply to RheaV]

It isn't inevitable - officially I had osteopenia with t-scores of -1.3 and -0.7 or so originally. In 7 years they have "deteriorated" to -1.5 and -1.0, still a long way from osteoporosis. For more than 4 years I was never below 10mg and for another year or so at about 9mg.

I have taken calcium and vit D religiously and walk as much as I can - at least 1/2 hour every day and always do the stairs, especially down. That is all.

[RheaV in reply to PMRpro]

Thank you! That's very encouraging!

[Hindags]

Thank you for posting that link. Wish they had checked to see whether the PMR patients were taking other meds to help compensate or prevent Pred side effects, e.g. Statins, PPIs, metformin, fosamax, etc....... Can't tell from the article whether the Pred did not cause as many side effects as generally are prediced or that medicine was keeping those side effects under control. Would love to know, since those other meds can have other side effects.

But it is pretty good news over all.

[Christophene47]

Very interesting; I have been on steroids since Sept. 2016. My blood glucose is 99 (not fasting). No diabetes. My bone density is fine for my age. Already had cataracts removed.

Other than about a 10 pound weight gain, and slightly high white count , I don't believe steroids are harming me. At 71, I am not worried about prednisone; the only thing I must admit to is skin fragility and easy bruising. My blood and urine test results are substantially all normal.

Prednisone is controlling inflammation at 8mg. Since New Jersey, USA has legalized medical marijuana, I am going to give it a go. I have an appointment with a qualified doctor 7/16 and with a documented severe scoliosis and disk problems as well, I qualify. It takes about a month before you receive a license to buy, but I hear it is not hard.

The dispensaries (there are 2 in my general area), give classes on what types of plant strains are best for different conditions. It is definitely anti-pain and anti-inflammatory.