PMR or Spine or both

[craighead72]

As previous posts tell I was put on Pred in April 22 starting at 20mg and down to 14/15mg by April 23. Could get no lower and no guidance from GP. Then in November 23 said he was shocked to hear I had not tapered and instructed me to drop to 13 for two weeks then to 10 and then if no relapse go down 1mg for 2/3 weeks at a time. That didn’t work so I am stuck on 12mg. Tried tapering to 11 and 12 mg on alternate days but no use. It takes 2/3 weeks to get even a telephone appointment so I am on my own.

Complication is that I developed bad sciatic nerve problem and after no improvement had an MRI scan on lumbar spine which showed age related degeneration with slight nerve compression at L4/L5. Osteopath treatment has relieved pain across lower back and left hip and leg. However still feel fatigued and have muscle weakness in legs after walking and generally both on waking and in afternoons. Feel as if PMR symptoms are creeping back. Any thoughts? Should I increase Pred dosage and see if fatigue and weakness reduce and then if so do a really slow taper. Clearly I am confused so glad of any ideas.

[123-go]

Your GP was shocked! I am shocked that he hasn’t noted the difficulty you’ve been having in managing your symptoms where reducing your pred dose causes problems. In my opinion - as you are having a problem with tapering and particularly as you have added health issues - I believe that your doctor should refer you to a rheumatology specialist who will have more knowledge of PMR. It is your right to ask for a referral. If he refuses then changing your GP may be your next step.

I appreciate that taking the step I’ve suggested may not sit well with you for various reasons but you need to be in the care of someone who is more knowledgable and sympathetic. It’s difficult to advocate for yourself when you are fatigued and so poorly but do try. Do you have a relative or friend who would accompany you to a face to face appointment for support? You do need to stand your ground to get an appointment 🙁.

I have just taken a look at your previous post where you were advised re tapering and also in your post 5months earlier. The advice offered then re tapering would be the same today.

[PMRpro Ambassador]

Beats me what makes him think someone can reduce their dose like that - that isn't a taper.

I have had back problems for the last over a year and it has really affected tapering pred despite being on Actemra. I think you need a consultant who can look at both problems in association with each other because they are linked, There are alternatives for improving things, it goes further than just forcing you to reduce the pred. Being able to move would be a start!