Although my symptoms began a year ago I was not diagnosed with PMR until the end of July when the RA Doctor put me on a 15 mg daily dose of Predisone. Within a week I felt like a totally different person. I thought I had my life back. In Sept my blood work showed my inflammatory markers had dropped to normal range. In three months the Dr wanted me to reduce to a 12.5 daily dose which I did. It only took about 4 days and all my symptoms were back full blown. She told me to go back to the 15 for a month and then try again. Again the same results and I went back to 15 for another month then dropped again. Same results. Only this time the RA Dr doesn't want me to increase the Prednisone but take pain meds to help me adjust to the lower dose. I ask if I can at least try lowering the dose slower she agrees so I go to 14 mg for two weeks then to 13 two weeks then 12.5 then 11 then 10. I want off the Prednisone as well having had many of the lovely side affects that come with taking it so even though my pain is growing I try to stick with it. I see my primary Dr for pain management. My blood work is showing elevated C reactive protein but my RA Dr seems to think it's an acceptable level. I start PT, and do a pain education class. Slowly the flu symptoms come back as well many nights sometimes all day. I break down many a morning trying to get up to start the day and often cry myself to sleep at night. I go back to my Primary Dr to see how to handle all the pain. She had put me on Cymbalta in January and I thought it helped some so she increased that. I don't like taking so much pain meds but I have to now to get through the days and nights. She does blood work again and my C Reactive Protein has doubled. I get a call the next day that she has talked with my RA Dr and I should go back up to 15mg a day till my apptmt with the RA Dr which was today. The thing is the 15mg is not subduing all the pain like it did before so here I am 7 months later back to where I started only I now have pain in more places than before. Today the RA Dr says she still wonders if I could actually have RA even though I am not manifesting the swelling in the joints that accompanies that. She suggests adding Methotrexate but I dont like adding yet another drug with its own set of side affects to the steroids until I research it. I have to increase the steroids now greater than the 15mg a day so I can have a life! I would like to hear any input/experience on the Methotrxate and just on the steroid use for PMR in general. I sometimes wonder if I was reduced too quickly !!
marla,i have had polymyalgia for several years now, and finally got all straight with the correct dosage that keeps me fine with NO PAIN...i am on 2 mg. of Medrol.....it works fine......good luck to you....
I did not do good on prednisone AT ALL, CAUSED ME SOME REALLY BAD HEALTH PROBLEMS....
Hi I was diagnosed with PMR over a year ago. I was on 20mg pred, I was seen by rheumatologist and I was told to reduce after 2 weeks when I was down to 12.5 all symptoms came back and worse severe headaches and CRP was 115 I was hospitalised and had a biopsy for GCA and was positive, I was on 60mg pred but week later I loss sight in right eye, but it returned after 15 min, I had 3 episodes of this which was very frightening, my dose was increased to 80mg. I'm down to 10mg now and reducing very slowly,
I think when I started on 20mg if they had of reduced my dose very slowly it might not have come to this , but be careful once pain is still there so is inflammation
Medrol is methyl prednisolone - prednisolone with a methyl group added to the structure. I had very bad side-effects with Medrol, next to none with prednisolone and none at all with prednisone. Everyone is different and even react differently to the different forms of corticosteroid.
If you are struggling with 15mg pred and even getting worse then adding methotrexate does make some sense. However, the most recent international guidelines for PMR (October 2015) suggest a starting dose of 15-25mg, not higher, which is higher than they were previously saying - and more in line with the old levels of dosing. It is possible that you need that high a dose to clear out all the existing inflammation and the 15mg hasn't done that so as soon as you reduce at all the inflammation spills over so to speak and you are in pain again. The increasing CRP does suggest that that is happening - for whatever reason. It could be PMR that simply isn't being controlled at the dose you are on or it could be late onset RA that has presented with PMR-type symptoms.
Like everyone you want to get off pred - and you have to decide really whether you want the pain to be managed or to be off pred and other medications because it may be a case of one or the other. If you aren't on enough to manage the pain properly you might as well not be on pred at all - there must be benefits to counterbalance the downsides. Your alternative is to try MTX - if it is PMR Cymbalta will not help although it may work in fibromyalgia, PMR is not nerve pain. MTX sometimes helps in cases that are thought to be PMR - but PMR and LORA are so similar you can't really know whether it really was one or the other to start with.
Obviously your rheumy thinks there is a chance it isn't PMR - and you have to work with her to find what does work for you. You were reduced in a fairly normal way for PMR - it may of course have been too fast for YOU, you have also got into a yoyoing pattern with your dose and that often causes problems with further reductions. But the bottom line at the moment is that the dose you are on isn't doing much - either you have to try a higher dose to see if that can get the inflammation under control and start over again - or you have to try something else. If it were me I wouldn't bother with the Cymbalta but I would try the MTX if the rheumy is not keen on trying a higher dose of pred first.
Many people take/inject MTX, have few or even no problems and it works for them in RA - in most countries it is the first line approach for RA and you have to work through the list, "failing" each to move on to the next drug. "Failing" can be because it doesn't work for you or because you can't tolerate it - so if either happens, something else will be tried.
But as I see it - you have to try something else because what you are doing at present isn't enough.
If you've responded so well to steroids, you likely do have PMR, but it can be very hard to distinguish between some rheumatic diseases like PMR and RA.
As for the dose of steroids, patients with PMR are known to have intense responses to small reductions in dose, and it may take 1 - 3 years until symptoms go into complete remission, or at least decrease enough to greatly reduce steroid dosage.
There are some studies into the benefit of using an immunosuppressant for steroid-sparing therapy to allow dosage and side effects of the steroids to be reduced. In a study on mycophenolate, steroid dosage was able to be reduced to a fraction of initial dosage without symptom flare ups and no serious side effects were noted from the mycophenolate itself. Mycophenolate is generally easier on the body than methotrexate because it mainly only affects the immune system, but it has greatly reduced effectiveness compared to methotrexate when used for rheumatoid arthritis and wouldn't be of much use if you do actually have RA.
I wondered what Medrol was but Eileen H has kindly explained in her post. Thanks for your reply Claudia and happy that you have found something that works for you. I can see through reading these forums that each one of us is on our own journey with this disease. So very nice to be able to share with others who actually have PMR.
I do not have GCA so far but am aware to watch for the signs of it. What a frightening experience that must have been for you! Elizabeth! So you also question the quick reduction? After reading more on these forums it seems it is a standard protocol but still have to wonder if it's too much too fast and brings symptoms back and more. Wish you the best as you continue to reduce.
I'd be interested to see that reference - because the consensus from the rheumies I have had contact with is that mycophenolate isn't really of much use in PMR. According to the latest international recommendations, nor are any other of the DMARDs/ immunosuppressants used in RA besides methotrexate. Mycophenolate IS used in other forms of vasculitis but I have only once heard of anyone having it suggested for PMR/GCA.
Some of us are what are called Patient Research Partners and provide feedback to the research groups we have contacts with - the "dead slow and nearly stop" reduction approach is currently being used in a clinical study in the UK to see if it helps patients have fewer problems with reducing. Our experience is it does - and there are quite a few doctors who also emphasise slow reduction. The trouble is, in other illnesses where pred is used they can reduce in these sort of steps - either because the inflammation is limited and has gone away, as in chest infections or asthma, or because they are on other medications and the pred was to manage a flare as in RA. In PMR it seems to me to be a different situation - the inflammation is ongoing, topped up every day, and can very easily get out of hand so going slowly helps the body notice the change less.
Hi Eileen. I have seen and read many of your posts on the PMR forum and have wondered if you have a medical background or if your knowledge is from your own research and study of PMR. I do appreciate your reply to my post. I do agree the inflammation needs to be under control and yes my Rheumy (as everyone calls them on these forums) is increasing my Prednisone dose in order to do so. I told her I wanted to research the MTX before agreeing to try it and she was fine with that. I'm glad to hear you say her reduction was typical. I guess there always are periods of adjustment as you live a life with PMR .I want off the Prednisone but I also want to be able to function each day so for now the increased dose seems the answer. Until I found this forum I just read the medical websites detailing what PMR is, how it's treated.....but they fail to tell you much of the reality of it. It may still be I have RA. I have a brother with RA, a sister with ulcerative colitis, another brother who had Type 1 diabetes and also my daughter is a Type 1 diabetic so plenty of auto immune disease in the genes. I am so pleased to have found this forum as there's nothing like first hand experience from others who share the disease for guidance and support. Again Eileen I appreciate your comments.
I am on 8 pills of methotrexate now. I have not felt any side effects and my Rheum very wisely has not told me what they are because then I would manufacture them.
I do not have PMR now, I don't think. All pain and stiffness centered in my knees. I do have RA, he says. Markers one high one low. go figure.
I worked in the NHS in the UK in the laboratories so know about the pathology side, did a physiology honours degree and was a research technician after that so I can read scientific/medical papers and understand them. I have spent the last 6 years plus reading everything I can lay my hands on about PMR/GCA. I'm a patient research partner for PMR too. I had a hospital appointment last week - after the "it isn't x so it must be the PMR" I spent the next 40 mins chatting with the head of medicine about PMR - as an equal - and left with a load of papers he'd printed out for me. So it's both.
You sound to have a decent doctor there - some throw their toys out of the pram when the patient says they want to do some research and think about this next step. A few patients recently have be "sacked" by their rheumy for less! GPs often have paddies too...
I hope you don't mind me piggybacking on your thread, as I could also do with some advice.
I had increasing joint pains for some 6 months until I eventually saw my GP who referred me to a Rheumy last September. None of my blood tests/scans have confirmed RA so I was told it may be seronegative, nor do I have classic finger swelling/redness. But apparently when I've described all my symptoms to my Rheumy, he says they sound very much like RA - stiff fingers, painful feet (like standing on glass - first thing in the morning), shoulder, elbow, wrist, knee, hip, ankle joints all complaining at different levels... sometimes low-grade constant throbbing, sometimes sharp stabbing, but I'm always aware of pain somewhere.
In September, Rheumy gave me a steroid intramuscular shot to see if it relieved any inflammation, even though bloodwork didn't show inflammation. It worked like a miracle and within a few days I was pain-free for the first time in months. Although it didn't last long, by the next appointment in December, Rheumy was satisfied that I did have some kind of inflammatory arthritis and started me off on 200mg daily of Hydroxychloroquine (HCQ) as he was (understandably) reluctant to prescribe MTX at this point. I persuaded him to give me another steroid shot to tide me over the Christmas period whilst waiting for the HCQ to kick in. Unfortunately, the steroid shot didn't have any effect this time... or if it did, it was pretty subtle and not the miracle effect I'd experienced in September.
I was on HCQ for 3 months and went back to see Rheumy last week. As many of my pains had come back (though not as bad as before September, when it hurt my hand to even adjust a pillow at night) and neither 200mg HCQ was helping nor had the December steroid shot helped, he wasn't sure that the inflammatory arthritis diagnosis was right after all. He told me to stop taking HCQ - though I'm not sure why he wouldn't up the dosage instead. He has given me a week of oral steroids (15mg once a day), as he's now thinking it may be PMR. I'm seeing him again on Monday. So today I'm on day 3 of the oral steroids and I don't feel any difference yet. I also had blood tests repeated, so it'll be interesting to see if anything new shows up.
Any thoughts/opinions would be very welcome, as I'm beginning to feel very deflated about all this. Whilst I would love to be pain-free, I'm currently trying to balance whether living with pain is better than the side effects of long-term steroids would be, which I gather is the normal treatment for PMR. I plan to at least get copies of all my blood test results so that I have my own record, as I'm losing faith in doctors who can only go by their best guess sometimes. :-(
I've been on pred for over 6 years now and I haven't fallen apart - and it definitely beats PMR and pain! There are a lot of us who are the same. And I speak from personal experience - I had PMR for 5 years before being offered pred and nothing would persuade me to go back there.
It is said pred leads to a lot of things - weight gain, osteoporosis, raised BP, depression, diabetes - whatever. I can guarantee you that long term unmanaged PMR leads to immobility and hence weight gain which in turn leads to raised BP and cholesterol, diabetes, depression - which is compounded by being in constant pain - and a whole load of other things.
Unmanaged inflammation in your body - which is what happens in PMR without pred - leads in the long term to general cardiovascular disease (including heart attack and stroke risk) and can even make you more likely to develop cancer. It isn't as simple as no pred good, pred bad.
Your response to the first steroid injection was promising but you have been messed about since and there is far more inflammation probably. 15mg for a week may not be enough, some people need more or for longer to get a good result. The latest recommended starting dose is between 15 and 25mg depending on the patient. You'll find a link to those recommendations in the list below - 2015 recommendations from EULAR/ACR.
Here is the reading list:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
All I can say is that I had sessions of 20,40, 60, 80 pred. just to get inflammation down. That is of 3 years ago--a combination of PMR and GCA. I am now on 3 mg Prednisone and an antiviral--doing well but flairs of PMR when I try to go to 2,1 Prednisone. We are all different but you know the pain..and they should listen.
No worries on "piggy backing" on my post as I totally understand the deflated feeling regarding managing the disease. Eileen H has some really good points in her response to you. I know for myself the pain is too great to be able to cope with and live any kind of life that isn't centered around it. After reading hours of these forums last night when I couldn't sleep I've resolved myself to the Prednisone. I don't want to live with the pain anymore. I consider myself a fairly strong person when tolerating pain but this has certainly gotten the best of me. Hoping you are a feeling a little better now with a few more days of Prednisone under your belt.
I understand the Methotrexate is a common drug used for RA however Prednisone is definetly the first go to for PMR. I love what you say about not being told the side affects because you would "manufacture them".
At least you know that about yourself!
Those are some high doses of Prednisone but I understand that is what is necessary to control the GCA. My Dr constantly asks me if I am having headaches or jaw pain but so far I have had neither. It is encouraging to see you are down to 3 mg and doing good at that dose. How often do you have flares now and what do you increase to when you do?