Information required about PMR

[Acorn0]

Hi,

I am new on this forum ( or on any forum ! )

I was diagnosed with PMR about a year and half ago, I was put on 20 mg prednisolone originally and am now down to 3mg and then every 3 days down to 2 mg. I am 73, female and have Osteoporosis and am marginally underweight.

I have a couple of very specific questions, I don't seem to be able to get any useful advice from my doctors.

Prednisolone is bad for my bones/Osteoporosis so I have to try and keep the dose as low as possible, however, keeping the dose low means my PMR is still very painful and restricts my use of the gym etc. Could anyone help me with these queries?

1 - I seem to be a lot better in the afternoons, would this be because my immune response is more muted in the afternoons? Therefore should I only exercise in the afternoons?

2 - Does anyone know if exercise actually aggravates PMR or does it just change everyday regardless?

3 - I am losing muscle mass which is worrying, does anyone know if there is any type of exercise that is suitable for people with PMR and Osteoporosis?

Any help would be much appreciated.

Thank you.

[Grants148]

Welcome Acorno ,l am sorry that you are still finding PMR,painful,but your dose is very low and maybe you need a bit more prednisolone.l can understand you not wanting to do this.lt could be that you feel better during the afternoon because the Pred is working then,it would depend when you take the dose.l find that l am better by the afternoon ,l take my Pred at about 9 30 am. There are people on this site who are far more knowledgable than l am and l am sure they will be able to advise you.They will answer your questions better than l can,best wishes ,l hope things improve for you soon.

[Acorn0 in reply to Grants148]

You may be right about the prednisone kicking in - I take it at about 9.30 too. Thanks

[PMRpro Ambassador in reply to Acorn0]

Have you tried taking it earlier? Many wake and take it early and settle down for another couple of hours - by which time it is starting to work. The sooner after 4am you take the pred the less inflammation has been caused so the less it has to do. The optimum time to take pred to avoid morning stiffness is 2am - the pred is there waiting for the inflammatory substances and it never gets hold in the first place.

[Acorn0 in reply to PMRpro]

That's a good idea and I will give it a try - though 4 am seems a bit early!

[PMRpro Ambassador in reply to Acorn0]

Depends what time you wake up - but even 6am and settle down for another couple of hours will give you a far better morning!

[piglette]

A side effect of steroids can be a reduction in bone density and we should all be given vit D and calcium when we start on pred along with a Dexascan. There are other things you can do to help your bone density which have been mentioned on this discussion board.

Keeping the dose as low as possible is not helping you. You need to keep the dose low enough so you are not in pain, otherwise the PMR will creep up on you and take over. The aim is to keep it under control. It is a waste of time taking it if you are putting up with pain.

It is a good idea to exercise, as everyone should. Just remember that PMR is intolerant to exercise you need to stop as soon as you feel you are overdoing it. Don’t go for the Burn! Walking is good as well, also weight bearing exercises. I go swimming regularly. Although I spend a lot of the time at the end of the pool chatting.

The important thing is to realise is that you are ill and need to look after yourself. Pamper yourself and rest. PMR is life changing and we do need to accept this.

[Acorn0 in reply to piglette]

Thanks for your email. Unfortunately my osteoporosis is - 3.1 in hip and I daren't increase prednisone. I go to dance fit gym sessions, do zumba and tai chi - all rather badly as I am now so stiff.

[piglette in reply to Acorn0]

The fact you have a low score does not mean you will necessarily get side effects from pred, particularly as you at such a low dose now. Who told you you must keep your pred dose down? If it is not working properly it seems to me you are going through unnecessary pain with no advantages. Your dose is so low anyway even a couple more mg really should not make much if any difference except make you feel better. Have you tried weight carrying such as a vest for example or weights round legs? There has been some good ideas for osteoporosis on this forum and people have actually improved their score by using them.

[Acorn0 in reply to piglette]

I am seeing specialist next month so can discuss this. In the meantime I am going to Google weight vests

[piglette in reply to Acorn0]

Good luck with the specialist.

[HeronNS]

I think you should take enough pred to relieve your pain or what's the point of taking it at all? you can do a lot to help your bones. See my post. I've been on pred since 2015,but at a very low dose most of the past two years.

healthunlocked.com/pmrgcauk...

[Acorn0 in reply to HeronNS]

I would take more if it didn't damage my bones I have had two cycles of Zolendronite and I think they like you to have a rest after that. I take calcium and vit D in winter, and vitamin k. I do dandelion fit, zumba and tai chi.

[HeronNS in reply to Acorn0]

I was diagnosed with low bone mass early on in my pred journey. I have no way of knowing whether it was the pred which was the prime cause of this as I had no earlier baseline DXA scan. However I was able to improve my bone density within a year, over half of that year still above the dose which they say causes bone thinning, and I did it solely through nutrition, supplements, and appropriate exercise, as outlined in the post I linked to above. Admittedly it was not full blown osteoporosis, but nevertheless I think it's possible for nearly everyone to effect an improvement in their bone health even while on low dose prednisone. I also personally think it's not a good idea to rely solely on bone medications to improve the bone status but in fact to follow the same sort of regimen as I did whether on medications or not. The only side effect from that will be improved health!

[Louisa1840]

Agree with all of the above! You need to find a dose of pred low enough to manage your symptoms. Any lower and the inflammation caused by the disease is doing your body harm!

Swimming is an excellent exercise. I too have osteoporosis and I do what I can to exercise within my limits. Cycling too is excellent though neither of these fields are weight bearing.

Blessings and Go Well.

[Acorn0 in reply to Louisa1840]

I find ibuprofen helps - my aim is to keep prednisone as low as possible to protect bones. I do dance fit, zumba and tai chi for weight bearing exercise. Take calcium vit D and K , and have had Zolendronite for 2 years, which may be maximum I am allowed.

[piglette in reply to Acorn0]

If Ibuprofen helps it probably means some of your pain is nothing to do with PMR. PMR is notorious for only answering to pred and really nothing else.

[Acorn0 in reply to piglette]

Must ask the specialist about this next month

[PMRpro Ambassador]

There are other ways of maintaining bone density for patients with osteoporosis than stopping them getting the pain relief they need to be exercising. Sometimes I really do wonder what they are thinking about. "As low as possible" really means the lowest dose that manages the PMR symptoms. Not just "low" - if you do that there is no point being on ANY pred. And inactivity is a high risk factor for osteoporosis - probably worse than pred.

If you look round the forum you will see a lot of discussion about alendronic acid/Fosamax - mostly rather negative. That is because many of us object tot he way it is used "just in case" when someone is put on pred. But for someone who IS osteoporitic there is a real role for it.

In the 5 years when I had PMR without any pred I did a daily aquafit class - after which I was mobile enough to do heavily adapted Pilates and Iyengha yoga. At that time I also skied - but that is by the by!

Most people find they improve as the day goes on - probably because they warm up and the blood flow to their muscles improves. Exercise doesn't aggravate PMR except the actual cause of the disease, an autoimmune disorder that causes your immune system to attack your body tissues as if they were foreign, continues despite the pred which is only managing the inflammation. The pred just relieves the inflammation to allow you a better quality of life in the meantime. This leaves your muscles intolerant of acute exercise - they will develop worse muscle soreness after exercise if you do too much and it takes longer to fade. You can do exercise but it is better to start with very little and add a bit more every couple of dayd - taking note of how you feel the next day. If you feel good and not sore, you can do a bit more the next day. But it does need to be slow - adding just a few minutes each time.

[Acorn0 in reply to PMRpro]

Thanks for your email. My osteoporosis is 3.1 in hip. I have been on fosamax and other drugs for many years, and since starting prednisone have had two infusions of Zolendronite. Due to see specialist next month to see how things are going. Also take calcium, vitamin D and K, and try to do weight bearing exercise several times a week. I need to balance medication so that I am well enough to exercise to keep bones as strong as possible, and enjoy life, but not so much that the medication makes things worse.

[PMRpro Ambassador in reply to Acorn0]

I'd have thought that you would have been better off on and a candidate for Forteo which is the only bone medication that actually builds bone.

[Acorn0 in reply to PMRpro]

Thanks I will ask about this- haven't heard of it before