I need some help from you knowledgeable people.
Posted , 8 users are following.
Had to go to the blood clinic as I have enlarged red cells. I don't remember if it happened after I started taking pred. I don't know if they caused it. Now I have been told no vitamin deficiency and no anaemia so the next thing is bone marrow biopsy. The rheumatologist says I don't have polymyalgia and has told me to reduce steroids by 1 every three months as I am on 8 at the moment it will take 2years . I would be grateful for any input. I have had more information on here than from Gp or Consultants.
0 likes, 6 replies
r.d.s26296 kathleen21605
Posted
Kathleen sorry to read you have further tests to complete...
Look on the bright side love , that you have good doctors and the ability to find out what's actually causing the problem ...
We are all so lucky to have help and advise when we are ill 😷
Also that we have this wonderful support forum. Especially Eileen, who's advise is invaluable.
Stay strong Kathleen, and please let us know how you get on.
Cyber hugs
BettyE kathleen21605
Posted
Usually we hear of patients being told to reduce too quickly. 1 every three months sounds pretty slow. How long have you been on Pred. and what was your starting dose?
The slow reductions are, I believe, to give our adrenals time to wake up and d their bit so perhaps something in your condition requires the extra long reduction time. 8 is not a very high dose so side effects shouldn't be too much of a problem.
Best wishes for a correct diagnosis.
EileenH kathleen21605
Posted
Why has the rheumy concluded you don't have PMR? I would have thought he couldn't be sure of that until the cause of the large red cells is identified. I think that sometimes being on pred can lead to the effect but there are other reasons and the bone marrow biopsy will answer that.
However, you are already at what is called a physiological dose, the same sort of amount of corticosteroid your body makes anyway, and he has actually suggested a perfectly safe, comfortable and reasonable reduction to allow your adrenal function to get into gear without you feeling uncomfortable.
Do let us know what they decide.
kathleen21605 EileenH
Posted
I will let you know how things go I had ultrasound on shoulder and it showed inflammation my next rheumatologist appointment is in October.I have also had ct scan which was clear so don t really know what's going on.i started on 15 in August last year and am only down to 8 now. Pain in shoulder is ok although can't lift very high right one is ok. Get pain in neck.well I am one so I'm told. Told not pmr because it didn't affect both shoulders I do get hip pain but that's put down to arthritis. Thank you for replying I much appreciate it.
EileenH kathleen21605
Posted
It took me 4 years to get to 8mg! Honestly - they really are blinkerd aren't they! It is USUALLY both sides - but some people are worse on one side than the other
However - all you describe could be due to myofascial pain syndrome which can lead to spasmed muscles and more one-sided pain. A private sports physio or sports massage therapist might be helpful.
kathleen21605 EileenH
Posted