Tapering down....from 35 mg to 12.5 since August 31st

[Cairocat]

My rheumy has put me on a plan to taper down after being diagnosed with PMR in mid July and a set of x-rays have discovered lower spine weakness and degeneration so not pmr pain as I had thought . Blood work indicates that the inflammation continues to diminish and I started physio 6 weeks ago so have slowly been building up some strength, however I am really aching these last couple of days. To top it off, I had my flu shot and.....was then smothered by a cold. Almost a perfect storm here as I am achy, the cough makes my back ache and now I am getting tingling and burning sensation in my left leg. I am scheduled to drop to 10 mg on Monday and remain there for 4 weeks so am hopeful that things will stabilize. The tingling and slight burning is relatively new and could be a result of several 6 minute episodes of torture on the spin bike ( with the tiny, tiny seat!!!) . I have avoided taking any Tylenol or other pain meds, but know I need to exercise and have definitely felt the benefit...so any advice/thoughts?

[PMRpro Ambassador]

But does the PMR diagnosis stand? You can have both - plenty on here with PMR+.

I would hope the inflammation continues to diminish since you are on pred - but IMHO you should slow down now you are at a more usual PMR dose (starting dose 20mg or less) and wait until your inflammation levels have fallen to a low and stable level. THEN continue to reduce.

Leave the spinning bike - yes, you need exercise but normal cycling, walking and/or aquafit would be far better in the context of PMR. Your muscles are intolerant of acute exercise when you have PMR and need a touch of TLC and gentle exercise. Repetitive actions are poison in PMR so weight training and the like need to be kept gentle and minimal to start with and building up very slowly - I'm talking about adding a minute or two every few days. Not your usual training schedule. The gym and physio have their place - but they both require some reticence in PMR. It will come - but slowly. At the higher doses you may not have noticed the overdoing it - now you are lower, be careful.

[Cairocat in reply to PMRpro]

Thank you so much for responding so quickly. Yes, the diagnosis is correct because the blood work indicates the inflammation and all the markers are there. I have put up with assorted aches and pains for a number of years and always used the ....age/overweight/lack of exercise as the cause, but the x-rays certainly showed I do have lower back issues. My rheumy was insistent that there was something "mechanical" causing the extreme pain when I was on 35 mg ....and she was correct. She also told me I had been overprescribed by the family doc....so that is why she advised the quick drop. It is so confusing....is the pain pmr/withdrawal related or....back?? So I do appreciate your advice to take it easy. I have just finished my "work out"...and I use that term very loosely. I've never been a crazy fit type so it is not difficult for me to heed your "be gentle" advice. The area around my tail bone is so sensitive, but know I have to build up strength and managed about a minute and a half on the bike with the gel seat cover ....and that is enough for today! Heading into the hot tub and ....perhaps a glass of wine (hmmmmm....)....

Have a great weekend and thank you again. I read all of your posts and really appreciate your common sense and advice. I live in the middle of the mountains in southeast British Columbia so it can be pretty isolating and the cat is no help!....so please keep posting. Cheers

[PMRpro Ambassador in reply to Cairocat]

I have been forbidden to use bikes BECAUSE of my back problems. Bikes put a lot of strain on backs.

Where counts as SE BC? Further east than Kelowna? I have a very dear PMR friend east of Vancouver, stayed with them 2+ years ago and took a trip up to the wine region. I'd be back in a heartbeat...

[Cairocat in reply to PMRpro]

Who do you believe? My family are all fanatic bike people and my daughter in law is an internal medicine (gastro) specialist and they all say biking is great because it is not weight bearing. Well, I can tell you, after a few minutes on the spin..... it is "weight bearing" on my bum!!!! So, I am going to take it easy! Slow and easy is the way to go and we need to know ourselves....And I did enjoy the hot tub with a local micro brewed beer. My kind of Saturday afternoon!

Now, I am further east than glorious Kelowna. Right in the mountains and about an hour drive to the US border. On the Crowsnest highway from Alberta to the coast.

Yes, Vancouver is amazing......and.....wine country...... A great trip through there can provide tremendous relief to PMR symptoms!!! Come again!!

Have a fabulous weekend....and thanks again!!

[PMRpro Ambassador in reply to Cairocat]

Who do you believe? Those of us who have walked the walk!!!! Bikes are good - except in certain circumstances!!

Oh yes - I could fancy your neck of the woods!!

[patriciawhite in reply to Cairocat]

Is there anywhere you can go swimming. It's weight bearing but you would have to check if it's OK for your back first.

[SheffieldJane]

Yes! For goodness sake go to bed Cairocat and stay there until this thing passes. Xx

[PMRCanada]

Good to hear from a fellow Canadian! I lived in Northern BC for a few years, in the scenic Bulkley Valley Lake District, and often visit relatives in Vancouver.

Regarding your pain and tapering schedule please heed the advice provided, namely gentle exercise and don’t be in a rush to lower your dose if pain is still present. I had to give up on physio once we got to the stage they started wanting me to add weight to my strengthening exercises. My leg muscles revolted and I was experiencing more pronounced soreness. I’ve settled on deep water exercises twice a week, and short walks (which are getting less frequent as the weather gets colder).

You certainly have the right idea with the hot tub and beverage. I partake in the same regime here at home and find the hot water jets are so soothing and result in a temporary reprieve from any stiffness/soreness I may be experiencing.

Wishing you all the best with you back issues. I know from having “mechanical” issues of my knees, that such conditions that exist concurrently with PMR, can make things like exercise tricky. Keep us updated.

[Cairocat]

Thanks to all who replied to my earlier rant. I really appreciate the support. Have slowed down and fiddled with the bike seat so making progress on 10mg/day!

Yesterday I listened as the bells rang in honour of the 100th anniversary of WW1 and joined many others at our cenotaph here in Fernie. The entire ceremony was quiet and dignified but I was very touched when the first wreath was laid by the Silver Cross Mother. She was younger than me, but had lost her son in Afghanistan. Put my aching back and other complaints into perspective. So many gave so much for us.

Have a great week and keep smiling.....