Down in the dumps

[chrissie2222]

I have had pmr for 3 years, started on 20mg prednisolone and tapered down to 2mg. Now I have had a big flare up, so sore and achey, back up to 15. Feeling so fed up and exhausted. Any words of wisdom gratefully received .

[DorsetLady PMRGCAuk volunteer]

Hi

Sorry to hear that - did you really need to go back up to 15mg? Usual suggestion is add 5mg to the last dose you felt okay at.

Hopefully a few days at 15mg will sort things out. If so, I should think you could fairly quickly get back down to 10mg - with a couple of steps of 2.5mg maybe even as low as 7.5mg. From then on slow down to monthly tapers of 1mg or even 0. 5mg. Using a slow taper may also make a flare less likely next time around -

healthunlocked.com/pmrgcauk...

At 3 years your PMR may still have some time to run, so don’t get too despondent.

Good luck, and please let us know how things go.

[chrissie2222 in reply to DorsetLady]

Thank you for such a speedy response. I hate having to increase by so much. The docs suggestion obviously!! It’s a hard illness.

[MhairiP in reply to chrissie2222]

I have come to the conclusion that doctors know a lot less about PMR and how to treat it than we do! We have access to the expert advice, and experience of hundreds of PMR/GCA sufferers, on this forum. At the end of the day, GPs are just that - general practitioners - they're not experts in PMR/GCA. It seems odd that you've slowly got down to 2mg, then your GP tells you to go up to 15mg - 4 or 5mg would have made more sense! As DL said, maybe a few days at 15mg will sort things out and you can swiftly get back to the 2-3mg mark. Keep us posted!

[SheffieldJane]

“You cannot protect yourself from sadness without protecting yourself from happiness”. 🌈

Good sound advice from DL.

[Dontwannabesick]

Wrap yourself in a warm blanket of hugs. You can do this.

[Rose54]

Just to say your not on your own

Its disappointing to have to increase but hang in thier you will get thier

[chrissie2222]

Thanks everyone! I feel better just knowing there are people who get it!!

[bunnymom in reply to chrissie2222]

I am 3 years and 4 months going from 7 to 6.5. You've done really well. You'll get it back under control. In the back of our minds we really think it's gone then BAM there it is again. Wishing you well today 🥀

[whitefishbay]

Hang in there. This is the yo yo disease among other things.

[PMRpro Ambassador]

You possibly didn't need to fo all the way back to 15mg - adding 5mg to where a flare happens is usually enough when it happened because you overshot the dose you need: the lowest dose that manages the symptoms as well as the starting dose did. That isn't the same a zero! But in that case you will find it relatively easy to reduce back to a lower dose.

The lower you get, the nearer you are to that target dose so it pays to slow down, reducing in smaller steps and taking longer rests between drops, preferably spreading a drop over longer period as well.

This is another version that can be slowed down as much as you need:

healthunlocked.com/pmrgcauk...

and is being used in a clinical study in the north of England - so rheumy approved!!

[chrissie2222]

This is brilliant! Didn’t realise there was so much information. I think I was going too quickly at a very low dose. Thought it was over😂

[PMRpro Ambassador in reply to chrissie2222]

It isn't over until you can get off pred altogether without a return of symptoms - and even 1mg ever second day can be enough to keep it under wraps!!!!!

[Valnvaughan]

Hi, I have had PMR for nearly 4 years. Started at 15mg Prednisolone and used DSNS to reduce. Hiccups along the way with husband’s heart attack and osteoarthritis in my hips needing 2 hip replacements in 2018.

However, I have got down to 2mg per day 3 times and thinking the PMR is gone, I have overdone it resulting in a return of symptoms. However, unlike you, after discussion with my GP I have increased to 5 mg per day until symptoms subside and then reduced slowly again.

I now anticipate a day or event that is going to stress me, like travel, and increase Pred to 2.5mg. This seems to do the trick for me. As a result of holidays and travel throughout the summer, I plan to stay at 2mg till a reduction programme in the autumn.

Best of luck. Remember the mantra, it is not a race. Pred will alleviate the symptoms till PMR burns out. Valerie

[Daisy-Roots in reply to Valnvaughan]

Hi, I think I'm looking at hip replacement. Did the PMR affect that much? Janet

[Valnvaughan in reply to Daisy-Roots]

I believe that Pred had masked the osteoarthritis pain. So, by the time I drew GPs attention to non bi-lateral pain the hips both needed replacing. The UK NHS treated the condition as urgent - I had referral to surgeon in Feb 18, first replacement in May and second in Oct. Surgeons have their own ideas on dose of Pred that is desirable during an op, mine wanted 5mg Pred per day. I was on 9 at referral and reduced to 5 by first op. I was given extra Pred during op. I did not notice any PMR difference, but I was using a wheelchair between ops. Recovery after second replacement was slow as 3 years of PMR resulted in muscle weakness. But 7 months on my hips are good, no pain, my PMR symptoms are controlled and I have continued a slow reduction in Pred. I am walking increasing speed and distance, I am swimming, ballroom dancing again and taken up Tai Chi to increase flexibility. Best of luck, Valerie

[Daisy-Roots in reply to Valnvaughan]

Wow that sounds fabulous! I agree about pred masking symptoms, what I thought was a flare turned out to be hip bursiitus, which when calmed down did not improve walking so looks as though bursiitus caused by the degenerated hip, not swimming excessively to get in shape for daughters wedding as I first thought. After some panicky phaffing about with pred dose I'm stable at 4mg. I have an MRI tomorrow so will know more then. I was interested in the muscle weakness aspect of PMR, I previously had Plantar fasciitis for 8 years which seriously atrophied my muscles, so actually I think this hip issue a result of that really. Wish someone had looked at me holistically and suggested that at the time but Que Sera. I have resumed swimming albeit only a fraction of what I was doing before and some physiotherapy exercises. Thank you so much for your reply, that's very reassuring. Dance on! Janet

[Nitrobunny]

I’m a big believer in self care when a flare happens. I had to take an extra 5 yesterday because I’m fairly miserable and I may do it today. I’m going to wrap myself in my favorite soft blanket and order food in later because sometimes the only way to go forward is to stop and shut things down for a minute. I always tell myself “tomorrow is another day, another chance to get it right”.