Tapering at a snails pace but still having withdrawal issues

[Irldino]

Hello Everyone

I haven't posted for a long time butI keep in touch daily. Thought my story might be helpful as even though on a very gradual taper I am encountering side effects. I was diagnosed with PMR January 2015. I have been very lucky as never had pain. Stiffness was dehabilitating enough. I resisted steroids for 5 months. The practices I put into place in that period though have helped me along the way. Once on steroids stiffness disappeared within hours. Since then I have followed the slow reduction plan without any flares.

From May I slowed down even more and have been tapering by 1/4 mg. My last blood test in mid August show CRP of 3 and an ESR of 16. What has suprised me however is that I have been encountering side effects/withdrawal symptoms . The side effects are generally one sided. Tightness in right arm which lasted almost two months. Currently it's right knee not keen on bending since early October. Driving seems to set it off. No fun going up and down steps. Last few days I see an improvement though so I seem to be working through it and acupuncture has helped a lot.

As I have no pain these side effects are more a nuisance than anything but they are hard work and very tiring. I feel like the goal posts are constantly changing. My muscles are very weak too and am guessing that weak leg muscles maybe what caused my knee problem. I notice also, and perhaps this is due to cortisone being lower at night, that if I turn over during the night my arms are so so tired and I feel stiffness in my pectoral muscles. All is back to normal on waking. I am currently mid way between 1.5 and 1.25mg.

Generally quite tired but doing ok. Thyroid is a little out of kilter at the moment too but I guess it's part of the hormonal imbalance caused by pred. Hope this all may be of use to someone else on their journey.

[DorsetLady PMRGCAuk volunteer]

Hi Iridino,

Good to hear you are tapering okay, but would guess your PMR is still quite active as you are still getting problems.

Your knee could be muscular, think it might be something similar to bursitis, I had that in left hip recently and found that acupuncture and massage helped.

To help your leg muscles might be worth trying Pilates, Yoga, or Tai Chi - all will help build the muscles without being too strenuous.

Your tiredness may be thyroid, but might be worth reading up about Synacthen Test and requesting a test just to check your adrenal glands.

[Irldino in reply to DorsetLady]

Thank you for your advice. I practice tai chi and that helps keeps everything open and moving. It's the perfect tool to work with. The strange thing is the stiffness in the arm came out of nowhere and then eased off gradually after a period of time. The knee is following a similar pattern. My next blood test is in two weeks so will see how things are then.

[PMRpro Ambassador]

How interesting - I wonder if the thyroid imbalance is contributing to the tapering problem.

I get a small area of discomfort - really couldn't call it pain - at the base of the deltoid muscle, (at its attachment with the brachialis I think) which lasts a few days and then eases. It is most peculiar!