Posted , 8 users are following.
Just diagnosed in January 2017 with PMR. I have been in pain for 2 years, worse last 8 months. AnA elevated, RH elevated, sed rate and crp normal. Rheumatologist did not think it was Pmr, so went back to my gp, he started me on 10 mg pred and I started feeling better after 6 hours. Amazing. Now learning more.
0 likes, 20 replies
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MrsO-UK_Surrey Jlberg7777
Posted
Hello Jlberg and welcome to the forum although I'm always sorry to hear of another person being diagnosed with PMR, GCA or both.
?It must be such a relief for you having finally been diagnosed after two years of pain - I so empathise as I spent 4 months of my first undiagnosed year tied to my bed in agony and attending first rheumy appointments by ambulance and wheelchair. Unlike you, I did have highly elevated inflammatory markers but still no diagnosis. Thank goodness my second rheumy proved more knowledgeable!
?You are very lucky to have experienced such good pain relief at just 10mg (most PMR-ers are started on 15mg). However, if you have experienced at least 70% relief in your pain levels and this continues to improve, you will still be wise to remain on this starting dose for a good 4-6 weeks, at the same time taking things easy, remembering that the steroids aren't curing anything, they are just damping down the inflammation and relieving your pain whilst PMR takes its course, and that can be anything from 2 years upwards. At the same time, don't be tempted to carry on as you did before PMR - your body will need lots of TLC along the way, and allow the steroids to continue doing their job. So you will need to pace yourself to avoid the risk of flaring inflammation and thus higher steroid doses.
When you do start reducing, the best way is very slowly, tapering to each new dose by small decrements (never more than 10%), and then remaining at each new dose to ensure that any underlying inflammation does't have the opportunity to break through. Good luck.
EileenH Jlberg7777
Posted
I take it you have seen the reading list:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
I have to say though - I imagine the reason your rheumy did not think it is PMR is probably because the ANA was elevated as it is usually found to be normal in PMR and is used to differentiate between it and other possible diagnoses. I'm not clear - what is RH? It isn't an abbreviation I'm familiar with.
Jlberg7777
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EileenH Jlberg7777
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Raised ANA and RF - no wonder your rheumy wasn't convinced it is PMR. It could well be something else with polymyalgic presentation. However, if a low dose of pred works at present, fair enough. Do keep in mind that it could well be LORA/EORA (late/elderly onset RA) if you have problems reducing at some later point.
10mg is a fairly low pred dose so most people wouldn't suffer much in the way of side effects - difficulty sleeping perhaps at first and headache is common with pred. But nausea - not so much. Maybe you do have something else going on.
pam1793 EileenH
Posted
Headache is a side effect of Prednisone? Some days I feel like I'm just poisoning myself with this drug.
EileenH pam1793
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pam1793 EileenH
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Crazy, isn't it! Eileen, you always have such informed answers. Are you a physician or an administrator for this site? Or have you just been dealing with this disease for so long? I always appreciate your responses to my and others' questions/comments. Thank you!
EileenH pam1793
Posted
I have a physiology degree and worked in the NHS for a long time and also worked in pharmaceutical clinical trial monitoring as a translator - you need a load of background and learn a LOT. I don't read chic-lit to relax - I go on-line and read medical papers
I've had PMR for just 13 years now, been on pred for well over 7 years. If there is something to do with PMR - I've met it! If I haven't had it - someone on the forums has and I've read up about it.
Jlberg7777
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Jlberg7777
Posted
EileenH Jlberg7777
Posted
I'd try 15mg forst - you may never be totally pain-free, 15mg may be enough if you give it a week or so. 10mg is usually not enough to start with - but if you can avoid going to 20mg I would. Saves having to reduce from there!
patricia43906 Jlberg7777
Posted
Hello. I was diagnosed with PMR just before Christmas. Prescribed 15mg Prednisone, which reduced my symptoms within 24 hours, for which I was so relieved and grateful. However, now I'm trying to come to terms with this condition, the medication and the psychological effect on my sense of self. Compounded by recent diagnosis (June2019) of Atrial Fibrilation - prescribed anticoagulants. I used to be optimistic, fit and well. Now I worry about my future, and I'm acutely conscious of my mortality!! I'm not depressed, just going through a period of adjustment. I'm hoping joining a forum such as this will provide the support and reassurance I seek. I hope I can also offer same to others.
EileenH patricia43906
Posted
It is very possible your a/f was caused by the same autoimmune process that causes PMR - the cardiologist is confident mine is. I've had plenty of time to get used to it but it really isn't too bad. I now have a pacemaker which has made a difference my daughter said.
PMR isn't the end of the world! The trick is not to fight it it but look for different ways to do things and accommodate it. And between the forums (also one at HealthUnlocked) you will make lots of friends you would never have known without PMR.
patricia43906 EileenH
Posted
Thank you Eileen. I did wonder if the AF and PMR could be connected in some way. As you say, a matter of accommodating my new situation. Could be worse!
EileenH patricia43906
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My AF does get worse with a flare - and the cardio agrees it is related to the vasculitis. One thing I find a pest is that a bad evening of AF - mine is always a night bird - makes me very tired next day, confusing with the PMT fatigue!!! And magnesium supplements do seem to help - especially a liquid form I can get that is used in the hospital to be taken as soon as you notice any tachycardia which is how my AF always seems to start, brief bursts of tachycardia and then later the AF appears.
patricia43906 EileenH
Posted
Thankfully - perhaps worryingly? -I don't really notice the AF rapid/irregular heart beat most of the time! I've been discharged from the cardiac clinic and I continue to take the anticoagulant Edoxaban (although I'm a bit concerned about long term use and bleeding risk). I think I'll buy a BP and heart rate testing machine to monitor my heart rate at home. Can anyone recommend one re quality and price? My GP is currently more focused on the Polymyalgia Rheumatica, as am I! . And I'm concerned about long term use of steroids (up to 2 years or longer)! But pleased there is a limited life span for the condition, at least. I've also started to use magnesium gel.
What do you take for PMR? How long have you had it?
!Wishing you AF calm days/evenings.
Anhaga patricia43906
Posted
If you haven't already, make a new post as you've replied to an old post not many people will see. It does take a while to adapt to a new normal, but I have to say the new normal of PMR with pred was so much better than the old situation of more than a year without a diagnosis the clouds lifted!
EileenH patricia43906
Posted
I've had PMR symptoms for 15+ years and been on pred for 10+ years. Used properly and carefully pred is fine - this study found that the rate of so-called adverse effects of pred are no higher in PMR patients on pred than in an age-matched population:
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
I am on Pradaxa/dabigatran after my INR went out of control on Sintrom, a form of warfarin, about 4 years ago. Initially I was put on the higher dose and I am also on propafenone for the AF and that raises the blood level of the dabigatran if you take it at the same time. The head of our local hospital lab is a specialist in clotting and we did an unofficial study checking my blood levels with and without the propafenone at the same time. I was quickly switched to the lower dose and then we established I needed to take the dabigatran about 2 hours before the propafenone. So now I am fairly happy about it. My husband ended up in hospital with a blood level 10x what it should be of apixaban (I think) because of a similar situation with a different cardiac drug. The surgeons here say it is a very common problem - which is why this hospital having the testing service available is rather comforting. My husband switched back to warfarin - even that isn't easy to get right with him at present so he has ordered a self-testing device to reduce the trips to the phlebotomy clinic. He also doesn't feel his AF which is pretty much permanent, mine is paroxysmal so I do notice it when it changes from the usual 60/min it has been since last May with a pacemaker.
We have a sphygmomanometer but rarely bother checking our BP now. Instead my husband got a pulse oximeter to check his oxygen levels as he has lung problems - but I find it ideal to get a quick record of my pulse rate.
If you do get a sphyg for BP be sure it is one to use with AF - it messes up the readings on some.
But don't get too fixated on 2 years for PMR - only about a third of patients are able to get off pred in 2 years or less. But once you taper in SMALL steps (not more than 10% of the current dose) and slowly (a month at each new dose) to find the lowest dose that works as well as the starting dose you will find living with PMR and pred is not as bad as you think.
patricia43906 EileenH
Posted
Thank you Eileen and Anhaga.
Yes, I should've started a new conversation (I'm new to the site). But your responses have been helpful, thankyou.
Anhaga - sorry to hear you waited a year for diagnosis! My symptoms started early October 2019 and I received a diagnosis on 20th December. So I feel fortunate.
Eileen - 15 years! How are your symptoms now?
EileenH patricia43906
Posted
Currently awful because I've had a stressful month and I'm flaring badly! But most of the time I'm fine and it doesn't bother me greatly as long as I keep taking the pills!!!!