Does anyone have experience of coping with a flare up of PMR without resorting to prednisolone?

[redteach]

This is my second flare up since ‘beating’ PMR in 2010. The first time it came back, I took prednisolone as my GP advised but was able to taper down and come off quite quickly. Now it has returned again and I’m aiming to cope without steroids. I eat very healthily, practice yoga and run regularly (though slowly at the moment). Nights are very painful and disrupted and I’m very stiff first thing, but as I get going I feel a bit better and by early evening I feel pretty good. Does anyone have advice or any thoughts to offer. Thank you.

[Hidden]

I had pmr six years ago at age of 46. It wasn’t ever diagnosed and I rode it thru without Pred. It was tough dealing with the non stop pain. It was relentless. At the time I was sick with it, I was in perhaps the best shape of my life. My life was miserable with the pain. Very painful for about six months and then i remember it taking another six months to be symptom free. I took about 1200 mg of ibuprofen. I am now ailing with pmr again. Received the diagnosis and stated with prednisone. I am so much happier with the prednisone. I would never try pmr without it. Hopefully there won’t be a third time. I am much better with prednisone

[redteach in reply to Hidden]

OK thank you. Sounds like perhaps I am not as much pain as you were.

[SheffieldJane]

My guess is that your PMR never really went completely and kind of lies in wait and flares up. Your healthy lifestyle must help. However, personally I would be reluctant to let the inflammation develop in case it morphed into GCA. I would be tempted to try 5 mgs to offset the night pain.

[redteach in reply to SheffieldJane]

Thank you I will see how it goes.

[GOOD_GRIEF]

It's your call, but uncontrolled inflammation is far more dangerous than pred, and useless suffering is useless.

[redteach in reply to GOOD_GRIEF]

Do you mean because of the risk of GCA? My GP seemed unconcerned that I wanted to try without steroids.

[Hidden]

If you taper too fast it's an indicator of relapse. Don't forget it never gets beaten but if you are lucky you may go into remission. As with all things that only go into remission it can come back. However, some people get pain in night but perhaps if that's the pattern you need to explore other possibilities like ankylosing spondylitis, especially as it seems to be coming and going as well.

nhs.uk/conditions/ankylosin...

[redteach in reply to Hidden]

Haven’t heard of that one, I’ll check it out, thanks.

[SnazzyD]

If it was me I think I’d much rather take a small dose of Pred (minimal side effects) early if possible than a larger dose because it has either got a lot worse or has become GCA. Whilst healthy lifestyle I’m sure does a lot I don’t think it is a fall back; I had a healthy lifestyle apart from persistent stress and I still got GCA. As Poopadoop says it’s worth looking into Ankylosing spondylitis.

[redteach in reply to SnazzyD]

Thank you for your comments.

[PMRpro Ambassador]

Not really - I "did" PMR for 5 years without pred prior to a very delayed diagnosis, not out of choice. The limiting effect it had on my life in so many ways means that nothing would induce me to try it again. I was in constant pain, depressed, bad-tempered, unable to keep up with friends so became isolated, was in bed at 9pm most nights because it hurt a bit less lying down, struggled to work even though all I had to do was fall out of bed and stagger to the computer as I worked freelance from home. I managed to remain fairly upright and mobile by doing an aquafit class every day which allowed me to get moving better. But it cost quite a lot and required a great deal of effort to get there - and when I was unable to drive for another reason I had to stop. I could go nowhere if I couldn't drive there, park close and not have to walk. The 15mg starting dose of pred gave me my life back and I was pretty much free from pain and have been since.

If that is how you want to live, fair enough. I wouldn't again.

But bear in mind it isn't a simple equation: the unmanaged inflammation in your body is doing damage to your cardiovascular system. The autoimmune part of PMR caused atrial fibrillation and it probably was worse because of the lack of control in those years. It is said by medical experts that unmanaged PMR is some 7 times more likely to progress to GCA - and I did have some symptoms of GCA for a short time and the rest is likely to have been large vessel vasculitis but we have no proof. If you do develop GCA then you have Hobson's choice: you take high dose pred (much higher doses than required for PMR) or you risk irreversible loss of vision, once one eye is affected, there is a 50/50 chance the other will go with in 2 weeks even with steroids. There are people on the forum who have the t-shirt. If your GP isn't concerned - he should be. But then, a lot of GPs wouldn't recognise GCA if it slapped them in the face.

The longer you leave the PMR, the more the inflammation builds up. For the first year I was just stiff and my muscles became sore when I exercised. But eventually it built up. NSAIDs didn't touch it - and NSAIDs have their own side effects. One friend with PMR was told by her GP to use ibuprofen. After the 3rd dose she was admitted to hospital with a gastric bleed. It is impossible to say, but did the 5 year delay in recognising what I had contribute to the fact that after 15 years it is still active? To my knowledge it has never gone into remission, it doesn't for about 5% of patients.

If PMR always went away after a year it might be different - but the median duration of management with steroids is 5.9 years. That's a long time to anticipate being in pain and restricted in what you do.

[redteach in reply to PMRpro]

I will consider the points in your reply carefully, thank you.

[FRnina]

Read and read again what PMRpro has written (and others of course). That build-up of inflammation and the unseen damage it can cause should help you decide. Healthy life-style yes- but it does not do the work of pred. It supports the work of pred. No way will you want to risk the chance of it developing into GCA as well. Among the many, many things I learned on this forum is to listen to your body. Painful disrupted nights? Take it as a warning.

[redteach in reply to FRnina]

Thank you for your reply.

[josvanloo]

I "relapsed" 4 weeks ago - after being of steroids for 3 years . Things are under control now with 3 mg of prednisolone .You may have in the back of your mind that you have to go back to 15 and 20mg - and do the whole thing over again - like I initially did . Maybe there is a chance that you can get things under control with a much lower dose

[OutdoorsyGal in reply to josvanloo]

What exactly was your treatment/taper for the relapse? Starting dose and duration, please.

[josvanloo in reply to OutdoorsyGal]

Took Steroids for 16 months in 2015 until Q2 2016 (from 20mg) . Started taking steroids again on june 3rd - GP told me to go up 1mg at a time to find what the minimal dose would be to be OK. So peaked at 5mg when taking flights to the USA (intercontinental flights are one of the big PMR miseries for me) - now at 3mg . Will go back to 5mg in 2 weeks time when I have to go to Taiwan - then no more intercontinental flights and hope to stay at 3mg to gently taper off

[OutdoorsyGal in reply to josvanloo]

Thanks. This may come in handy for others of us if/when we relapse!

[redteach in reply to josvanloo]

Thank you for your reply.

[Navion]

I had a very healthy lifestyle prior to PMR and even healthier now, except for having to cut back on some exercising. I still got PMR and it it didn't help with pain or stiffness. Prednisone has helped and I hope my healthy lifestyle mitigates some of the prednisone side effects.

[redteach in reply to Navion]

Thanks for your reply.

[Blearyeyed]

Have you seen the GP and had a relapse of PMR confirmed ?

Sorry , I wasn't quite sure when reading your post.

If so , then in reality as before Steroids ( or the appropriate steroid sparers medications) are the only sure way to deal with the PMR inflammation quickly and prevent the reduction in your quality of life and potential damage that you do to your joints and muscle that you will do as you try to compensate for the pain in certain joints while putting extra burden on others.

You can of course help yourself too by decreasing certain types of sporting activity that put more pressure on the joints like running and Yoga , and swap for something else like Tai Chi , Low impact Pilates and walking ( normal and Nordic) , Aqua based exercises .

This would help ease the pain and joint Fatigue whether you take Pred or not while suffering a flare in any joint related condition.

If you already have a healthy diet and take regular vitamin and mineral supplements and lots of fluids , as well as pace your activities , and you still have the pain then you know in yourself you do need the extra medicinal help.

If it hasn't been confirmed by the Doctor , you could try taking Paracetamol or other Anti Inflammatory medication for a while to see if the pain is coming from other causes rather than PMR first before starting Pred.

If you are not suffering alot of pain yet , and only in the mornings, it may not be a PMR relapse but some other form of joint , muscle or cartilage inflammation caused by doing activities that aggravate joints that were previously weakened or have issues with wear and tear.

[redteach in reply to Blearyeyed]

Thanks for your reply. My PMR was originally diagnosed by a very caring and thorough consultant. My current GP turned the question round on me by asking “Well do YOU think it’s a return of PMR?” to which I replied yes unequivocally. The same aches in the same places, same restricted movement and same depression and brain fog. The inflammatory markers in my blood were not raised, but neither were they raised by much the first time around.

The comments on here have pretty much convinced me to take the pred and stop being stubborn. Thank you.