4th attempt!

[AnniesRyder5]

Dear fellow sufferers and particularly our expert PMR Pro,

I started my most recent taper to 7mg of prednisolone on Christmas Day but similar to my previous experience, I am struggling with increased joint pain, worse in my lower back.

Based on my previous experience, I realise I could increase my daily dosage but I’m not sure if I should add 5mg or 1 mg back up to 8mg where I was comfortable and if so for what period?

I am so appreciative of this site as are so many fellow sufferers and long may it continue 🙏

[PMRpro Ambassador]

Just DON'T try to start a taper at a stressful (and cold) time of year!!!! There are rheumies who say not to try to reduce the dose in the winter! And the stress and extra activty and change of routine over this seasonal period doesn't help.

And remember - you aren't reducing relentlessly to zero - you are looking for the lowest effective dose at the time. Yours appears to be 7.5 or 8mg, whichever you are on currently.

The low back pain could well be myofascial pain syndrome or greater trochanteric pain syndome - and while pred does help, they do also respond to the right stretches if you are lucky and there are other treatments if they don't. Heat across the area that hurts helps me - and when it is really bad, an 800mg (flooding dose) of ibuprofen, taken with food, and sitting with heat in the appropriate place for a day or two can wreak a miracle!

[AnniesRyder5 in reply to PMRpro]

Thank you once againI shall go back to 8 mg tomorrow x

[DorsetLady PMRGCAuk volunteer in reply to AnniesRyder5]

You can take extra today, don’t need to wait until tomorrow..and not being rude, but what on earth possessed you to start a taper on Christmas Day - the most stressful day of the year 😳

[Blearyeyed]

I wrote a post sometime ago about tapering and one thing I suggested was that nobody should attempt to start a taper on or during a celebration , event or time which involves a lot of extra physical activity and Stress ( be that stress negative or positive ). Christmas and New Year is definitely one of those times when you should remain on a current dose that is working until they are over you have had a few days to relax and recover , and had chance to reboot and nourish your body so its prepared to cope with the next step down.

I would personally return to the dose you were comfortable on before Christmas if your increase of pain is not too severe . Keep on it for a week and get your body and mind "taper fit" with some TLC and then try again to take the next step back down again. Don't be tempted to use the time to totally spring clean the house or do more jobs because you feel relieved again , put those things aside and get your body back on track. Only the really essential stuff should be on your to do list , and at the top of that is , get my pain in control and feel better!

Best advice is though look at your week / month when tapering and try to adjust the timing of each new reduction to a group of days that you have kept free from other physical and mentally stressful activities , it can help your success in adjusting to the change.

[AnniesRyder5 in reply to Blearyeyed]

Thank you Bleary for the good advice

[Blearyeyed in reply to AnniesRyder5]

Don't forget stressful activities are not just negative things. Stress is either negative or positive activity that gives the body or mind more than it can cope with at its current level of health. So a trip out for fun with friends can actually cause the same rebound flare as a nasty job , piece of bad news or meeting at work.

[Viv54 in reply to Blearyeyed]

Its funny you should say that,just spent a lovely Boxing day with our family. But boy was i tired out all the next day ! !🌷

[mgrogers99 in reply to Blearyeyed]

Eustress .... term for normal type stress....

[PMRCanada in reply to Blearyeyed]

Exactly Bee! My PMR symptoms emerged after a number of “positive” stressful events that occurred within 6 weeks of one another (marriage, retirement, move).

[AnniesRyder5]

Thank you and I didn’t actually realise that👍

[Loyd]

Annie - I can only tell you my recent experience with my second flair. Both times at around 4 mg. I was advised by my doctor to go up to 10mg for a week then back down to to the dose I was last comfortable on which is 5mg. It worked a treat and now I plan to stay on 5mg for at least 6 months. There is no point relentlessly trying to taper if it’s not working because yoyoing is not good. I hope what ever you decides works well for you.

[AnniesRyder5]

That is so interesting I was good on 8mg but unfortunately I have the GP telling me to taper.

What I don’t understand is what, if any, serious effects would result from me sticking to 8mg for 6 months.

[PMRpro Ambassador in reply to AnniesRyder5]

If there are many - heaven help me after 6 YEARS at above 10mg (in fact it is probably more like 10 years though I did have a break at about 5mg for some time in the middle. Haven't identified anything life-threatening yet ...

[AnniesRyder5 in reply to PMRpro]

And did you have any argument from your GP?

[PMRpro Ambassador in reply to AnniesRyder5]

I don't live in the UK, my GP here in northern Italy is rheumatology trained and both my rheumy (a world name in the PMR/GCA field) and my cardiologist accept it is what I need to be able to function - I have atrial fibrillation that was almost certainly caused by the a/i part of PMR damaging the sinus node and it is worse if the PMR flares so closely associated with the vasculitis side. All of them are heavily into quality of life and for the last 4 years I have been sole carer for my husband so had to be able to function. I tried methotrexate but felt so ill it was abandoned. I might consider trying something else - but I live alone, no family here, so anything that makes me feel worse isn't acceptable.

[AnniesRyder5 in reply to PMRpro]

That’s puts my whinge into perspective!You’re are obviously a sufferer but how inspiring and knowledgeable you are while you take the time to advise and help others through the PMR fog!

[PMRpro Ambassador in reply to AnniesRyder5]

No - the point is I WON'T suffer, I take what I need to feel as well as I can and most of the time it isn't too bad at all. There are things I can't/don't do because they do make things worse - lifestyle changes can help a lot but not everything, And I don't consider I "suffer" from PMR - I have it, but it doesn't define me. I won't let it.

[Carriemetz in reply to PMRpro]

Go, Pro! 🥳

[Blearyeyed in reply to PMRpro]

Its the senseless, " one rule for one illness and one rule for another" method that all Doctors seem to work by that causes the trouble ( no matter what their status ).

They have their guideline for your particular disease , and boy are they going to stick to it ! Usually, without giving any consideration to the possibilities of life impacting on recovery and your full medical history making an impact on how quickly you will respond to medication or recover from the illness itself.

They will try and rush people down a slippery slope with PMR/ GCA while happily putting another patient on 10 mg for life for example , with RA or some skin and breathing disorders.

It's the lack of trust they have that their patients will act sensibly coupled with the constant fear that patients will get addicted , or it will be impossible for patients to come off steroids , if they are on them past a certain point.

What they don't seem to realise is that its actually their ill considered rush via a timetable that is probably the top cause for people having to yoyo on their steroid medication and extends the time many patients need to use them because of the flare ups this behaviour causes .

PMR / GCA doesn't read timetables , and it wouldn't take any notice if the rules if it could , trying to push it to behave like you want it to isn't going to make it go out of the door any quicker than it wants to.

[PMRpro Ambassador in reply to Blearyeyed]

Absolutely - good article in the Guardian today that is relevant I think

theguardian.com/world/2022/...

[Blearyeyed in reply to PMRpro]

I will check it out , thanks , Pro xx

[Noosat]

Have you tried a painkiller for yort back? I take Tylenol , which gives me some relief. So think backpain not related to PMR.

[AnniesRyder5]

Yes thank you I did take a painkiller and so now I don’t know if it was the additional 1mg or painkiller which unlocked my back in the end😊