I am feeling very confused on moving forward with my treatment of PMR. Like everyone else, my doctors have pushed to bump down and get off Pred no matter how I am feelng. I have been on Pred for 3 yrs now. Recently got down to 2 mg.but after a fall had a major flare up. I am 57.
My 3rd Rheum Dr. started giving me Cortisone shots over a year ago, a set of two about every 3 months. They were mostly in my shoulders (4 sets) and one set in my hips. He said it was a better alternative to Pred. I felt great after the injections(like a miracle) for 2 - 3 months but by the mid-end of 3rd month was feeling stiff and painful again. I was however able to gradually bump down the Pred to the 2 mg.
My last visit I was feeling awful but I told the Rheumie that I was concerned about the Cortisone Shots side effects. His reply was that Pred has side effects also. He seemed a bit annoyed. He also pointed out that my bloodwork was normal and maybe I didn't have PMR (after 3 yrs of telling me I did), maybe it was Fibromyalgia or this or that. It was very frustrating and disheartening.
I told him I was going to pass for now on the injections and try to bump up Pred to 5 mg. and see how I feel. In the meantime I have pulled a muscle (Iliopsoas) in my leg/groin/hip area and finding it difficult to walk. I called his office a couple of days later to ask for one injection in my hip. They called back and told me that he didn't do that and was referring me to an orthopedic surgeon who wants me to go for x-rays! (It's a soft-tissue issue!)
Anyway, I am now trying to find another Rheumie outside of this med group for another opinion since this one seems to have thrown up his hands with my diagnosis. He told me I had a difficult case because I am considered young for this disease (54 at time of onset) and now my markers are in normal range (high normal) but still have muscle pain and severe fatigue. When I 1st went in, 3 yrs ago, my Sed was 101 and my CRP was 100.
Sorry for the length. Would appreciate feedback on Cortisone Injections, normal numbers while feeling awful, etc.
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Cortisone injections are not normally given for PMR, they are used for arthritis etc in specific areas, hips, shoulders etc are therefore localised to that part of the body. They do not work in the same way as Pred does on the inflammation with your blood vessels.
Pre diagnosis it was thought I had a frozen shoulder (I didn’t) so I had a total of 3 cortisone injections in my left shoulder, they did diddly squat for my shoulder or my GCA!
Post GCA I have had them for arthritic shoulder and bursitis in my hip - and low and behold they worked!
Pred does have side effects, but nothing significant if you are below a 5mg dose.
If the Pred is doing it’s job then your markers should be within an acceptable range, but as we’re always saying on here some people never have high reading even when their PMR or GCA was at its worst.
You are at the younger end of the spectrum for PMR, but that’s no excuse to say you are a difficult patient!
The steroid injections that can be used in PMR are depot-medrol and usually given in the buttock - I'd suspect what your doctor has been giving is not that.
This is a link to the latest guidelines for managemnt of PMR:
I can't say I'm impressed by his attitude - but perhaps I'm being unfair. 54 is not particularly young - plenty of us on the forums were in our early 50s when we were diagnosed or the symptoms started. Many patients do not show raised ESR/CRP while taking pred - and it is the symptoms that are significant, not the numbers.
There are next to no side effects due to using pred at PMR level doses. If you can manage on 5mg that is a physiological dose, not as much as the body produces in the form of cortisol daily. It is excess of corticosteroid that leads to side effects.
I hope you find a listening and empathetic doctor who knows that PMR lasts between 2 and 6 years for 75% of patients. So you are well within the range!
So sorry to hear about the illiopsoas issue. Boy does that hurt. I pulled that muscle a decade or so ago and still remember it. It did eventually heal on its own. I don't have any idea how long it would have taken had been on Pred or suffer from PMR.
I hear your frustration and know how it feels. Been there. I honestly don't know whether it's arrogance or ignorance sometimes with MDs. We are definitely given mixed messages these days. We are supposed to be taking responsibility for our health, but we had better be careful about how we question our health care providers. What are we supposed to do if we responsibly research our medical conditions and have questions about our treatment as a result of what we find?
Do you think there might be a 4th Rheumy out there for you?
Oh dear! You challenged a Demi god on his wondrous programme for PMR sufferers and he chucked you off his list for having a reasonable intelligent conversation about where this treatment is going and wanting to minimise the risks. It infuriates me that lazy doctors say it's Fibromyalgia if some of your symptoms fail to conform. What we have is an inflammation of the blood vessels that is controlled by steroids, most usually Pred. Fibromyalgia as far as I can gather from my friend is a hugely disabling condition that centres around the perception of pain, it can hit all age groups I think.
You do need a good Rheumatologist. Where are you? Someone may be able to recommend someone. I have personally never heard of PMR being treated this way. See the surgeon he or she might be great. You'll probably have to up your dose until you get a new Rheumie. Are you positive that you have pulled a muscle? My PMR pain was very disabling in that area.
You are at the young end of the spectrum for PMR but not freakishly so. I would have thought it would enhance your healing capabilities. I seem to be riddled with things since I passed 60.
Let us know what happens. So sorry you were cast adrift by this man, let's hope it turns out to be the best thing that has happened so far!
Why did your doctor think you needed cortisone injections two years into your PMR/Pred treatment? What dose of Pred. were you on when he started? Had you been struggling with flairs?
From what I've read, quite a few people on this forum do have cortisone shots from time to time to deal with the pain of bursitis that comes along with PMR. But I haven't heard anyone yet who has had them on a regular basis as a substitute for some of your Pred dosage which is what I understood your treatment to have been about.
The pain you experienced at the end of your three month cycles, did it feel like the PMR pain you had at the outset? Did you feel like you were falling back into that full body illness, or was it primarily pain limited to shoulders and hips and stiffness where you felt the pain? Did it feel like a flair or isolated joint pain? I ask myself these questions with every taper. Is what I feel today the beginning of a flair, my joints complaining about the lower Pred level, or just a reaction to having overdone/overused those joints? If I wake in the morning and am able to raise my arms above my head I assume whatever discomfort I feel isn't a flair.....yet.
I used to have epidurals consistently (cortisone injections into the spine), every 4-6 months because of lower back issues and sciatic pain. They were very helpful and I was very grateful to have found something that worked. About 4 years ago I started qigong exercises and working with an osteopath on a monthly basis. I've had PMR for almost a year now and have had my share of painful shoulders and groin and a bit of sciatica but luckily no need for more epidurals in the last 4 years.
I know I've asked more questions here than I've given answers to your questions. But I am curious.
My curiosity aside, your Rheumy does not seem like a doctor for the long run. Not at all. And that is who we need when we have PMR.
Wow thanks for the replies. Very tired today but will try and answer all the questions...
My PMR case is complicated by the fact that I have scoliosis and had surgery at age 15. I have a rod in my back and fusions down most of my spine. I have neck problems, Lower back pain and shoulder pain that I have dealt with for years. the doctor decided to give me Cortizone shots in my shoulders in order to control the pain but also to taper down on the prednisone. They were amazing and made me feel normal again.
This last flare up was all over my body. Sore legs, unable to lift my arms, intense fatigue. (I had gotten down to the 2 mg ) The painful illiopsoas muscle maybe from the PMR or the fact that the one hip is higher than the other and one leg is a bit longer so I don't stand completely straight. Going to PT 2/wk now to help with that.
I bumped up to 5mg last Thu. and the overall muscle soreness is better but still back pain and severe fatigue. Not sleeping well for a while now. After three years of the PMR/Pred roller coaster I am getting discouraged. I am starting to wonder if I'll ever feel normal again.
Giving you shots of cortisone won't help you taper down the oral pred dose on a permanent basis - cortisone is also a corticosteroid and once it wears off, you will have symptoms again if you have reached an oral dose that is too low.
Bursitis of the trochanteric or iliopsoas bursaeis not uncommonly part of PMR - and a high enough oral dose of pred for long enough WILL relieve it. But a local cortisone injection will relieve it far quicker - bursae have a poor blood supply so the oral stuff has to diffuse from the blood to the area of the bursa. But it would only relieve your hip pain better if it were given locally - like he's used it for the shoulder.
Your doctor is probably creating part of your problems - if he allowed you to remain on a stable higher dose of pred you wouldn't be flaring and relapsing. Once you start yoyo-ing the oral dose and doing that you get deeper and deeper into trouble.
Hate to tell you but 3 years is at the low end of the length of time PMR lasts, whatever any doctor tries to tell you about "2 years". Half of patients need about 4 to 6 years to get off pred - at least a third of patients are still on some pred at 6 years and a quarter need pred for far far longer.
Thanks for all the answers. It makes things clearer-both your Dr's use of cortisone and your frustration of having a full blown flair despite the cortisone shots. The shots seem to have helped you taper all the way down to 2 with less pain but they didn't forestall a flair once your Pred got below the level you needed to control the PMR. Why wouldn't you wonder about continuing them. They too have side effects long term.
If the shots helped you taper after being stuck, that's a very interesting piece of information for all of us who suffer through joint pain as something that must be accepted as a side effect of Pred withdrawal or the result of prolonged Pred treatment causing changes to our muscles and joints, or as a result of PMR bursitis.
It begs the question whether joint pain itself is one of the causes of PMR. Pain is a marker of inflammation of course, and inflammation begets pain that begets inflammation that begets pain. Where it begins I don't know, but for many of us it ends in PMR.
Just some thoughts. I think you are on the right track now raising the Pred and getting another opinion. I wonder if there's a correlation between chronic pain and PMR.
Thank you again for your responses. I am definitely shopping for a new Rhuemy and I definitely think that chronic pain and PMR go hand-in-hand. It doesn't help that I had the pre-existing condition of scoliosis with back and neck pain. However prior to PMR and during the good stretches of the PMR I have been able to workout at the gym three days a week and walk my dog twice a day. This morning I could hardly get myself out of bed.
Yes PMRpro when the Cortizone was wearing off I needed more, The pain and Stiffness returned. The rheumatologist said that it was better to be on a localized steroid than a "systemstemic" steroid like Pred. I thought that the Cortizone was all through my system because my whole body felt better! But I wanted to believe him because it seem like a miracle I felt so much better. The holy grail was getting off the prednisone and I was down to 2 mg! I thought I was seeing the light at the end of the tunnel, until this last flareup which has been the worst.
Funny I saw my next-door neighbor yesterday, she hasn't been out in a while. She said she saw a rheumatologist for her arthritis and is feeling so much better. I asked her who she was seeing and she said my doctor's name! She said that he's been giving her Cortizone shots and she feels great. She recommended to him! Wow San Diego is a big city what are the chances my next-door neighbor is going to the very same doctor for a Cortizone shots!
BTW I hate hearing the reality of how long PMR lasts. The doctors all act like I am a weird case because I still have it at three years.
I am single and this is really difficult to go through alone and even more difficult to think of the prospect of trying to date.
" The rheumatologist said that it was better to be on a localized steroid than a "systemstemic" steroid like Pred."
But PMR is a SYSTEMIC DISORDER!
Sorry - but so many doctors tell people it will be gone in 2 years - and when it isn't the patient feels (or is made to feel) a failure. Then they arrive at the forums upset - and we tell the truth. Had they been told that at the outset and then were better in 3 they'd never have had unrealistic expectations and would be delighted.
Once you have it properly under control you should be no worse than you were anyway - PMR doesn't really stop me doing much, I gave up skiing but there were other factors involved too. I travel. It is perfectly possible to learn to live with gorilla!
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Update ... flare has nicely abated...not on methotrexate YET! what do I do when medical insurance stops my cover for PMR?
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