Previously I mentioned last year about April/May time that I had an MRI scan of my head and neck, which showed wear and tear at the top of my spine. I had had a wobbly sensation in my head following shooting pains up the left side of my head behind my ear, which was thought to be a trapped occipital nerve . The wobbly problem lasted 5 weeks. Now I have a similar feelng in my head, which I have had for about 3 weeks. I did mention it to my GP in my 3-monthly letter to him (when I arrange my paperwork for my blood test) and he said he thought it was probably due to the wear and tear in my neck. However I am wondering if it is that or if it could be withdrawal symptoms from Pred. I am currently going down by the slow method from 4.5mg to 4mg and will reach that goal on the 21st February. I have had PMR since Oct.2017 and have in the past been down to 3mg, which wasn't enough. Current ESR is 2 and CRP is 10, which is the lowest it has been since it all started. My head feels very muzzy, and at times I feel disorientated with it, and a job to walk straight as well sometimes. I have been trying to do more walking to see if that helps as in the cold weather I did tend to sit quite a bit. I am totally free from any aches and pains at this level more so since I split my dose, which works really well for me. Any suggestions of what might help me?
Is this Pred withdrawal: Previously I mentioned... - PMRGCAuk
Is this Pred withdrawal
I'd be inclined to hang around at 4mg for a month or two - some of what you describe could be adrenal insufficiency as your adrenal function struggles to wake up.
I did wonder if I should have a synacthen test, but at 4mg maybe I need to be a bit lower first.
Probably depends on your doctor, many like you to be as low as 3mg
Probably - but you could ask your GP if they would be willing to do basal cortisol levels for you which will give you a signpost as to whether a synacthen test is worth it. If the basal cortisol is below 100 then you are adrenally insufficient, no question.
Basal cortisol level as I understand it, is a blood test done before 9am and then take Pred afterwards. Is that correct? Do I have to be 24hrs without Pred if I decide to go down this route? That is if the GP is ok with it as well of course.
It is just a cortisol level done on a blood sample taken between 9am and 1pm with no pred in the previous 24 hours, so yes, you delay the daily dose of pred until the blood sample has been taken.
I have got my next CRP/ESR blood test booked for the 15th March at 10am, and wondered if I contacted my GP whether it would be ok to ask him to do the paperwork so I could have a Cortisol Level check done at the same time. I have got a physio appointment already for Monday, so may know a bit more when I see her as to what she thinks the problem might be.
I'd ask - can only say no!
If your GP thinks your neck is making you muzzy and dizzy, has he got any suggestions on how to deal with it? It's not a very helpful diagnosis, is it? Does he realise that it's making your life difficult?
No, he did not suggest anything I am afraid.
the physio you mentioned below sounds like a very good idea! Can I come too?🤣
Sounds to me like you need more investigations as could be several things. Your GP can't just assume it's due to wear and tear and dismiss it.
Although I think your suite of symptoms require further investigation there is one thing you can do which may help the "wear and tear". I've had quite severe arthritis in my neck, most of my life, starting, I suspect, with an injury in childhood. At times I used to get very sharp, but transitory, shooting pains. When these began to happen more often and were accompanied by a tingling which I attributed to a nerve, I went for physiotherapy. There I was given very simple exercises which have strengthened my neck muscles, and dont get those sharp pains any more. I still have neck issues, but nothing like as bad.
I have decided to try physio first as my GP suggested, if no improvement then a cortisol check will be the next plan of action, as it doesn't appear to be getting much better on its own. Have to go private as a long wait otherwise.
Actually to be fair to my GP he did suggest physiotherapy. I had forgotten that-probably the muzzy head!
Let's hope it helps. Have to say it's something which has helped me a great deal over the past number of years, but I do owe a lot to a particularly intelligent physiotherapist who has what is probably an unsual knowledge of PMR. She has a good friend who is a rheumatologist, and apparently her own mother has RA. Therefore she's very good in the kind of exercises she recommends. However the neck exercise which stopped the shooting pain was given to me years earlier by a different physio and basically consists of using two fingers (index and middle) pressing them against the head (while maintaining the position of the head) front, back, right side, left side, then back again in reverse order, swapping your hand as you do the appropriate side. So: Right hand: front, back, side/ Left hand: side, front, back, side/Right hand again, but starting with the side which finishes the second set. I do this sequence three times so each quadrant of the head is pressed six times (I think 
). Of course one is sitting comfortably with as good posture as can be managed. You never use more than the two fingers because the idea is to strengthen small muscles in the neck, so if you use your whole hand you'd be getting bigger muscles to resist the pressure and that's not what we want. I think I'm supposed to hold the pressure for about three seconds, not very long. I should do this twice a day but nowadays it seems like once is enough, but if I neglect it too often I end up with the wrenching pain again so there is strong incentive to keep it up!
Thanks for that info. I hope exersises will help my problem.
If you can get it, an assessment by a good physiotherapist would be a very good idea. They do need to understand the limitations of PMR so they don't prescribe massive amounts of repetitive exercise, and know that we have to work into our exercise regimen carefully. All things in moderation!
My appointment is this coming Monday with a Physiotherapist in the same Medical Centre as my GP, albeit private, as I would not have got it that quickly in todays climate on the NHS, and I have already got copies for her of the MRI scan of my head and neck that I had last year, plus what medication I am on for PMR, so a discussion to be had before we start I think. Thanks.
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