Understanding Blood tests when reducing preds
Posted , 11 users are following.
Dear Eileen You have been kind enough to advise me in the past, for which I have been most grateful, My present difficulty is trying to understand recent blood test results. This will be my sixth year of struggling with PMR and currently I take just 4mg of pred each day. When I rang for a recent blood test result, which included a FBC and an CRP/ESR the message that had been left for me was 'all normal, no action', However, when sitting with a GP a few months ago, and after saying that I was still experiencing PMR symptoms, particularly the aches and pains, and particularly now in the fingers of both hands and also along my arms, but also the usual pain in legs and buttocks. This GP commented, "You do not have PMR, your 76 years of age, you will get pain". However, yesterday,when I pressed for more detail of my blood ESR reading, I was told that it was 26. The last time I had a ESR test, about 18 months ago, the reading was 12. My dilemma is trying to decide whether or not to try to come down from the 4 as I can manage at that level, I am not free of pain or stiffness, but, I can live with it. The GP I mentioned tried to tell me to start reducing by 1mg each month. Saying, somewhat aggressively, "I want you off steroids". I have in the past always followed your slow method and that has been successful as I have been on much higher does. I have to say though, that another GP at the same practice took a different view, and agreed for me to stay at my current level. I live in Wales where there does not seem to be any specialists with PMR experience. I wonder if you would not mind me asking you what you would advise?
Mrs MAC-UKI
0 likes, 11 replies
lodgerUK_NE MrsMAC-_UK
Posted
Eileen will be along shortly, but in the meantime have you ever asked for a Synathecen Test. just to see how your adrenals glands are getting on with the 'waking' up which should start around 7.5mg or below. If not insist your GP orders one for you as soon as possible.
In the meantime, I would up the dose to 5mg and see if there is any improvement. If so , stay there till you get that test and make sure you see the 'nice' GP, even if you have to wait a little bit longer for an appointment.
EileenH MrsMAC-_UK
Posted
I would definitely see the other GP and refuse to see the one who is totally at sea (or should be). It is now accepted that the higher levels of ESR they used to think were normal for older patients are not - they are a sign there is inflammation that needs identifying if it is causing problems. If 1mg more pred is going to improve your symptoms - then that is what you need. I agree with my friend!!!!
""I want you off steroids"" - not your decision dear GP, PMR makes that call. And don't be such a prat as to leave your patients in pain when there is no need whatsoever at these doses:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
MrsMAC-_UK EileenH
Posted
Many many thanks for your detailed reply. I have now upped my pred to 5 mg, and I will request the test that has been suggested as soon as the surgery opens after Easter holiday. The detailed information you have supplied me with has made me feel that I could be more in control of this condition than I have been of late. And I shall make sure to choose a GP I believe will listen to me, and not the one that did actually bring me to tears. Thank you all once again, and will if I may, report back as soon as I have any results.
lois41428 MrsMAC-_UK
Posted
Like you I am struggling to reduce pred without support - just the same as you - Dr's advice :- you have to get off the steroids! and start on Methotrexate - I am resisting this as my immune system is compromised ++ already. I had 2 trials of Azathioprine in 2016 and became very ill with the side effects both times. I am sticking to the DSNS method currently and am nearing my goal to get down to 4mgms pred. I have to pluck up courage to see doctor to request a blood test soon.
?I have Sjorgren's syndrome as well as pmr - very uncomfortable symptoms as those who have it will know. Any good tips to ease this condition?
Anhaga lois41428
Posted
Where do these doctors get their training? Methotrexate can't replace pred in treating PMR. There is some evidence that in some patients it can help lower the dose of pred needed, but none that it helps a patient get off pred any more quickly. Besides it comes with it's own potential side effects. You also are at a comfortably low dose of pred. Good for you sticking to your guns to continue tapering only very slowly. You are quite right of course that even a modest increase in inflammation markers is indicating something and should at least be respected. The other point, of course, is that you can't keep reducing if the inflammation is still causing symptoms. Most of us, if not all, will have to stop at a certain dose somewhere for a few months, more likely years, to keep residual inflammation in check I'm grateful my doctor seems to recognize this, and my heart goes out to those who have to add fighting with their doctor to their difficulties.
EileenH lois41428
Posted
If you are at 4mg then your doctor is crackers to want to put you on methotrexate for the PMR! It doesn't replace pred in PMR and your limiting factor now is as much your adrenal function as the PMR.
HOWEVER - it DOES have a role to play in Sjogren's. Perhaps that is why he wants you to use it?
http://info.sjogrens.org/conquering-sjogrens/methotrexate-and-its-benefit-for-sj%C3%B6grens-patients
lois41428 EileenH
Posted
Thank you Eileen. I will check out the web site re. Sjorgen's Syndrome and Methotrexate/ benefits etc. I still do not want to take that drug. I wonder if any of these symptoms can just go into remission or are we likely to have them for life?? I have been affected since 2011.
EileenH lois41428
Posted
diana21296 lois41428
Posted
My close PMR friend has been on 5mg for nearly 3 years and her doc is quite happy that she sticks there. Unfortunately, every time she has tried to get to 4.5mg she has had a fall (she has a bad drop foot and is rather unbalanced) so had to go back to 5mg to get over the trauma. It seems that lots of docs are quite satisfied with their patients being happy on 5 and leading a near normal life as a low dose isn't too harmful to the body. Have tried to get her to do the DSNS method but she is unlucky with her falls every time she has had a go and also the pain comes back in her shoulders and arms. Oh dear.
connie28112 lois41428
Posted
I agree Lois re methotrexate. My Rheumy calls it a “steroid sparing agent”, in that it may help some patients reduce their levels of prednisone ... but I tried it and it was not the drug for me. Too many side effects no matter what I did about them... and I tried for 6 months. However, I have friends who tolerated methotrexate very well. Our bodies are all different. And our solutions may be quite invidual & specific. But how great to have a forum like this in which to share our stories!
lois41428 connie28112
Posted