I had CPR test this last week and all the markers have come up normal. I still feel a lot of the symptoms of pmr, the only change is I am much more able to walk and my mobility and pain is much better. I still feel very tired have brain fog and I have really bad days when I am not able to motivate myself. I have been blaming all these things on PMR but have also felt that here is something else going on too.I am always reluctant to visit the doctor so haven’t had any medical input and have been self diagnosing for the last 4 years. I’ve had PMR since 2015 and only seen the doctor half a dozen times in that period. If the markers are normal I’m wondering if I do have something else and I have been taking pred for a lot longer than I have needed to. I had t go to A and E last week as I had a funny turn and I have got very high blood pressure and the doctor has done a lot of blood tests.
I am under a lot of stress at present as my partner has just been diagnosed with a malignant cancer so that may account for blood pressure.
M query is, if the markers have gone away does that mean that my PMR has gone
If so any advice as to how I should come off my pred please.
Thankyou
Written by
Riversnan
To view profiles and participate in discussions please or .
Sorry to hear about your partner, very stressful for both of you.
As Coffeebeans says just because your CRP is in normal range doesn’t necessarily mean your PMR has gone, although after 5 years it may well be in remission.
You don’t say what dose of Pred you are on (would help if we knew), but you need to reduce sensibly and slowly or you risk an adrenal issue.
More info about doses etc would help us to help you.
Thank you Dorset lady I have left more info on post from coffee bean. I am currently on 4mg and will drop down slowly, I see the doctor in 10 days so I will be interested to see what he comes up with.
Below 5mg recommendation is 1mg every 4-8 weeks depending on patient ....most of us on here think tapering 0.5mg steps every month is the way. Even a 0.5mg step can be quite significant at low doses - and maybe use a slower taper regime - such as attached, others are available -healthunlocked.com/pmrgcauk...
You might like to have a look, and discuss with doctor
Many thanks that gives me some idea of what I am looking at if necessary, I have to wait to see the doctor before I do anything, it’s nice to be prepared and have an idea of what to do if needed. It would be lovely to get of steroids but I’m not holding my breath.
You are taking some pred so it may be there is not enough inflammation present for long enough to create the proteins that lead to increases in the blood markers. The inflammatory substances are shed in the body each morning and can cause some symptoms until the pred you take them starts to act. The pred only manages the inflammation - it has little effect on the symptoms of the underlying autoimmune disorder which continues in the background and it is that that causes the fatigue, lack of motivation and other problems. Normal range markers just shows the dose you are taking is enough (or more than enough) to manage the inflammation. Even 1mg can do that - but zero is found to be too little.
However - if you reject the option of medical input and self diagnose without any confirmation of the possibilities then you are at risk of having something else instead of or as well as PMR. Even GPs are more keen to diagnose PMR than their specialist colleagues.
As it is, I'm very sorry to hear of your partner's diagnosis - I remember the feeling well even after 26 years and I imagine that that is not only doing things to your BP but also your PMR, if that is what it is. Stress affects the immune system - and can lead to a flare of any a/i disorder but the markers will take some time to rise whatever it might be.
Thank you for all your comments, you are such a great bunch of people here I have got all my information on this site.I think my stress levels are greater as I have had two husbands who died of cancer and I don’t wish this disease on another person, I think long termthough the prognosis is going to be ok this time🤞🏻. But given my history I am afraid it drags up old demons.
I must wait and see how my doctor handles this for me and as he doesn’t know me I find it difficult to let him in.
On 5mg I had dreadful fatigue, which I assumed was the adrenal glands. I did up to 6mg which did help a bit and stayed there a while and then went down again, which really helped.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice Please.
Advice please (stage 2)
Steroid advice please.
The last lap? Advice please.
