Prednisone questions for PMR

[VALBARRY]

Recently diagnosed with PMR but not yet on medication. I understand that prednisone will be prescribed and have many questions. Does this cause weight gain and moon face? Is prednisone a long term solution? Does PMR go away, get easier or is it a lifelong condition?

[DorsetLady PMRGCAuk volunteer]

Hi,

This might give you a better understanding of what lies ahead - many do gain weight, but if you reduce processed carbs as much as you can it should be limited -

healthunlocked.com/pmrgcauk...

Have a read through, and then once you’re on steroids please come back with any more questions - I’m sure you’ll have many.

[PMRpro Ambassador]

You might gain weight - but some people lose weight on pred! The more rounded face is common - but if you can restrict the weight gain then the moonface is less obvious. It is possible to avoid weight gain and even lose weight you have put on - even while still on pred. I lost 35lbs of PMR and pred associated weight gain by cutting carbs drastically. I eat no processed carbs and little in the way of root veg and no fruit. I eat salads and above-ground veg, meat, fish and eggs and cheese. I have a waist and feel well - doctors say they can't tell I'm on steroids. I could do with losing more weight - but it's OK.

It can be done - but you have to be careful, honest about what you eat and consistent.

[VALBARRY in reply to PMRpro]

Thank you so much. I already do lazy keto so hopefully on the right track

Is prednisone a long term medication? Does PMR go away or will I have this for life?

[PMRpro Ambassador in reply to VALBARRY]

No reliable answer I fear. One in 5 patients is able to get off pred in a year, by 2 years about 1 in 3 has dispensed with pred. By 5 years, half are off pred. Those who get off sooner seem to be at a greater risk of relapse.

medpagetoday.org/rheumatolo...

There is no way of predicting who will be faster or slower nor what sort of dose will be needed. And after 10 years about 40% of patients still need a low dose of pred. So I suppose you can say that about half will be off pred in something under 5 years, the rest of us seem to be longtermers. But it is said that only about 5% have it for life - we know of people who get off pred even after 11 years.

But with care and lifestyle adjustments you can live a pretty decent life even with PMR and on pred. I can't complain too much - I still travel, life isn't too bad due to PMR. Worse limitations are due to other things.

[Arflane97G]

I started on 15 mg of steroids in September, now down to 8 mg. I certainly felt really hungry in first few months, especially in the mornings but was very careful about what I ate. No moon face and side effects were minimal but I did cut out tea, coffee, white carbs, processed foods, sugar, alcohol - am gradually reintroducing things to see how I feel but I guess everyone is different and it is a case of finding what works for you, best wishes

[VALBARRY in reply to Arflane97G]

Thank you so much for that invaluable information.

[twinkleyt]

My sister was diagnosed with PMR by her GP but said there was no sign in her blood test to confirm it. She began on the 8 tablets a day 2 years ago and is now down to 2.5. She said it was a wonder pill giving her super energy and stamina and loving everybody and her life.

She and I have always been slim with a large appetite and we never put on weight. She is tap-dancing as well as other forms of dance weekly.

I, on the other hand developed bladder cancer, an overactive bladder and lost weight/muscle tone and am housebound. My sister has also developed a leaky bladder but may be more due to our over 70 age-group than the steroids.She did have a Cystoscopy into her bladder but found no cancer, unlike me. At our age a moon face would pad out any wrinkles but neither she nor I developed one.

Good luck with your treatment.

[Pixix]

Good luck...I’m only 2 months in...there’s a lot to learn, I started by reading the links & info on this forum, & immediately went on the Keto diet. The steroids do help the pain, in most cases, but bring their own side effects, unfortunately! Surprised that they didn’t start you immediately on Pred, if your blood tests are done & PMR confirmed!

[Noosat in reply to Pixix]

Look into the Mayo Diet. It is much healthier for lifetime eating than the Keto diet

[Pixix in reply to Noosat]

Yes, my doctor suggested the Mayo diet and I think it’s the long term answer. But I just want to shift some quickly with the keto first, then swap, I’m on 5:2 over Christmas, but will be back to low carb very soon & aiming to reverse the diabetes issue! Thanks for your advice, will start researching the Mayo one very sooooon.

[Daffodilia]

Pred should help PMR - as you reduce you may get some aches and pains - depends what you can live with - some people get to 0 pred - some stay on low dose. Moon face will come and probably weight gain as pred makes you hungry. Pace yourself and enjoy less active pursuits - good luck

[anutycrixp]

When I started steroid therapy 2 years ago for P.M.R I was so ill and in such pain.Steroids had an almost immediate effect ; such relief ! At first I did feel more hung ry and slightly "wired" on 20mg a day but this soon settled down.I did not think to change my diet but was probably able to be a bit more active.Since then I have been gradually reducing dose - a few ups and downs but no huge weight gain and no moon face at all. now just quietly going along on 5mg/3mg [alternate days].hope to take it down a bit more soon.I tell you this so you understand that everyone may have a different experience,not all is bad news.I found steroids so effective with no noticeable side effects.A family member takes steroids for a different chronic condition,again no noticeable side effects with over 20years of treatment..best wishes and hope it goes well for you!

[animalactivist]

It goes away on it's own. Mine lasted 4 years. I never took steroids

[Loco99 in reply to animalactivist]

In some cases it goes away on its own. If untreated it can lead to GCA. Some people can manage without prednisone some can’t. It’s not a case of one size fits all.

[kulina]

Hi VALBARRY, my PMR started March 2016 and was diagnosed in Sept. of that year. I was given 20 mg Pred and reduced since then. Can't say I have had major flairs except one, when the doctor thought I could reduce by 2 mg at once. Yes, I got moon face but it went away at 7 mg. I lost weight by reducing carbs but gained back when I didn't watch my diet. Can't say I gained weight from Pred. I got facial hair but that went away round 5-6 mg. I got curly, thick hair. Always had a wave but didn't know how to control the new, thick, curly hair. That went away around 3.5 mg. I'm on 3.5 mg now and I couldn't have survived without Pred. The side effects were nothing compared to the pain of PMR. Don't get me wrong this hasn't been a walk in the park, it's been a painful, exhausting few years but there is light at the end of the tunnel. I still have some pain now and again, but I find stretching really helps. I hope this helped and good luck.