Hi
I saw a Cardiologist this week who mentioned that there is a method of treating PMR that does not involve cortisone. Does anyone know anything about this?
I am very disappointed that after 10 months of treatment with cortisone the PMR in my blood is exactly the same as it was last February. Is this normal?
I think you need to double-check with Rheumy re alternative remedy - the only drug I’m aware of is Actemra - and that’s only licensed by NICE for GCA not PMR.
Are you saying the level of inflammation is the same as pre diagnosis - that’s what is measured, not PMR per se? If so, what is the reading?
Are you still on DM injections?
Unfortunately I am still not seeing a Rheumy. When I was first diagnosed with PMR they did a blood test, whatever the results it was it was the same reading last week.
I am still on DM, the blood test was done when I was due for an injection. I can now manage 6 weeks between injections (it was only 4)
Sorry, re read post - see you said Cardiologist- might be worth checking what drug he was referring to at some time.
Maybe you can “manage” 6 weeks - but perhaps it’s not giving you enough relief as the 4 weekly injection did - which is perhaps why the inflammation is not going down.
Trouble is, I don’t know as much about DM injection treatment as oral pred, so I’m only guessing at why you don’t seem to be getting better readings.
If doctors are going to say stuff like that then it behooves them to get the correct information. Actemra is licensed for GCA, no clinical trials for PMR have been done so it hasn't been approved for that anywhere - although it is as likely to work for PMR as for GCA. But it is more expensive (£12,000 per year for the drug alone without any other costs) and some insurances don't cover it. There are a lot of rheumies now beginning to realise it maybe isn't going to be the golden bullet they thought it would. It potentially has some hefty adverse effects and we have had a few patients on the forum who have experienced them.
It would be helpful if you could find out the actual numbers of your blood markers. Were they very high originally? Mine haven't changed much without or with pred but mine have also never been raised. If they haven't changed - are they sure it is PMR or do they fall when you have just had the injection and then rise again? How are your symptoms - since they are what matter, far more than the lab results.
If you can go for 6 weeks between injections without the symptoms worsening that is the sign the PMR isn't as active as it was - it is the same as us reducing our dose of pred. Pred doesn't cure the underlying cause of the symptoms, it just manages the symptoms to allow a better quality of life until the autoimmune disorder burns out and goes into remission. Without enough pred in the system, which is the case at the end of the interval between injections, the inflammation isn;t being as efficiently dealt with. The original work using depotmedrone didn't increase the time between injections, it kept that the same but used a lower dose every 4 weeks.
Thank you for the information. I can see why they are not dishing out Actemra to all comers. the reason that the Cardiologist would like me off DM is that sometime next year I should have a new valve put in and it is better without DM.
my blood tests show ESR 31 and CRP of 36, both are a foreign language to me .
And they have always been that level? Though if you have a heart problem, I think that can lead to raised markers, especially the CRP.
It would be interesting to know how Actemra would affect your heart surgery. I@d think it might increase the risk of infection too as it is a major immunosuppressant.
Those were my levels in February when I was first diagnosed, I was tested again at the end of November and I was told they were the same now.
I found that my inflammatory markers went down after I had been on an anti-inflammatory diet. I cannot prove a connection but there is no harm and no drugs involved. The main things to avoid are Dairy and Gluten as these have inflammatory effects on the body.
The way of doing this is to look at the Paleo diet but you do need to adapt things to something you are comfortable with.
In the new year I am going to try a natural way of ridding myself of PMR that will involve taking no steroids or any NHS prescribed drugs.
I can only report later whether it works or not. It is a personal choice, I am 19 months in with PMR and do wanting to be living my life on steroids and any posiible side effects they have.
The issue with the NHS is that they they do not examine the root of the problem, just give you drugs to hide the problem.
It isn't the NHS's fault - no-one knows what the root of the problem is: the immune system goes haywire and attacks the body in all autoimmune disease. There are no cures for any autoimmune disease, the best that can be done is possibly persuade it to go into remission but that is rarely permanent and in the meantime manage the symptoms as best they can. Actemra MAY do that - but the NHS can't afford to give us all that to try, no state healthcare system will be able to sustainably without the costs to us rising exponentially and even in privately funded systems that will make cover unaffordable for many more people.
But be careful with just dropping your pred - you must taper off it slowly enough to allow adrenal function to catch up. If you don't, it won't be the PMR making you unwell.
I don’t think I would dare give up pred, I could not bear to go through that awful pain again. I do agree a good diet is a very sensible idea, not just for PMR. If you are giving up pred, do remember to taper down, don’t just stop taking them or you will clobber your adrenal glands and could become very ill.
Just checking to see if the diet change has made a significant difference or not. I have gone Paleo a few years ago for other inflamation and it it helped. My dad has RA, and I have been told I have some sort of autoimmune, but never diagnosed. I have a family history of arthritis and have it in my hands, knees, hips, shoulder, breast bone. I have been doing lots of research and am constantly reading when I have a new flare up. With my current symptoms (pain in upper arms, hips, and sit bones) I have diagnosed myself with PMR, as my doctor doesnt know much about it. She has refered me to a rheumatologist, but I dont have an appointment until October. I am currently on 2.5 months of 20mg Pred, and have a little over 2 months until Rheumatologist visit.
I am very interested in a holistic approach if it would help.
I am down to 1mg of Pred so not much to taper from.
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