Posted , 8 users are following.
I have been in so much pain lately. All last week I had my first PMR flare. What I had was joint pain and an all-over flu-like feeling. So I'm assuming that was a flare. It was over by Saturday but i still have joint pain in my hands and feet and my lower back to this day. I have chronic back pain anyway but it is out of control pain at this time more so than ever and I think it's acting up because of the PMR. I haven't called my rheumatologist because I have an appointment with her on Monday and I thought I can make it till then. I tried to change my appointment to this week but she didn't have any openings. Today I finally gave up and called her nurse. But it was late in the day and I didn't hear back from her. I'm sure they'll call tomorrow. The reason I didn't call sooner was because I figured the only thing there is to do is up my prednisone. Well I'm on 9 mg right now. I can't seem to get below 10 mg without pain.. She put me on methotrexate to help me get below 10. and it's not working. I was on 10 mg for 3 weeks when the flare started. At the end of the flyer I was supposed to drop down to 9 mg and since I was already in pain I went ahead and did it. The pain hasn't changed it's still bad. I am so frustrated at this point. And I am in so much pain. And I am on very strong opiates for my back which don't seem to be doing anything for the PMR pain.
0 likes, 17 replies
FlipDover_Aust amkoffee
Posted
I'm sorry, I can't do anything but sympathise.
How long have you been on MXT?
You might try a quick short blast of 15mg to try and knock the inflammation down to the point 10mg works again?
ptolemy amkoffee
Posted
I have discovered if you are in pain don't reduce, although I had a rheumie who did not seem to care. In fact you need to increase your dose to where you were last comfortable and stay on it until you get the inflammation under control again. It is a bad idea to try and put up with the pain. If you are OK on 10mg for example hang on there for a while. You can always try another reduction later and if it works fine if it doesn't just stay on 10mg for a little longer.
amkoffee
Posted
Going up to 10mg won't be enough. This all started when I was on 10 mg. But if I were to go up to 15 mg for just a few days would I then have to taper down again?
ptolemy amkoffee
Posted
MrsO-UK_Surrey amkoffee
Posted
It's a pity you reduced when you say you were actually "already in pain". Just because you say you "were supposed to drop down" doesn't mean that you should regardless of symptoms - symptoms are key, and no-one is wise to reduce when their body is telling them otherwise. How about trying an increase to 12.5 initially to see if that works? ??If it does, and I hope it does, then come back and we can advise on the way to reduce from there.
EileenH amkoffee
Posted
Opiates won't do anything for PMR pain, the only thing that manages PMR pain is removing the inflammation - using steroids.
Methotrexate does not always work to help reduce the dose of pred - if it did it would be included more emphatically in the latest 2015 recommendations for management of PMR. The link is in the usual post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Where it does work, I am sure, is where it is not "just" PMR but a mix with or misdiagnosed inflammatory arthritis whose symptoms can be very similar.
As MrsO says - never reduce if the PMR pain is still there! My own suspicion is that the MTX has masked the onset of the flare building up - you are quite right, 10mg isn't going to be enough.
You could try 15mg for a few days and see if it helps - if it does, you have an arguing point with your doctor. If it doesn't make any difference at all after a week you can a) go straight back to 10mg or b) discuss either further investigations or being allowed to try more pred. But obviously MTX is doing nothing and you aren't on enough pred.
And I would show her the recommendations - where they emphasise that MTX should be used "in discussion with the patient"!
amkoffee
Posted
Thank you all for your input. I am going to be strong with my rheumatologist about getting off off the MXT and upping the dose of pred and not be in such a rush to lower it. And I am going to reduce on my schedule not hers. I really think it's about tapering to fast. I picked her because she had a lot of good referrals from other patients,, so now is time for her to prove it.
amkoffee
Posted
I just want everyone who helped me to know that I finally decided on my own to up my dosage yesterday to 12.5. That really didn't help much though. But finally I heard from my doctor at 6 p.m. She said I could go up to 15 mg. So this morning I took 15 mg and I feel so much better. I have very little pain in my body today about the only pain I have is in my hands. That and I'm getting a little pains here and there in my joints that come and go but I can take that and I assume that will go away eventually. The nurse said she was hoping to get me into the doctor today if they had a cancellation. Otherwise I will see them on Monday on my already scheduled appointment. But from now on I'm never going to wait that long again. I am just going to medicate myself as I see fit. I am just so used to being on narcotics and you cannot just medicate yourself on those you have to do it as prescribed and I think I just thought that way about the prednisone too. Thank you everyone for your input and advice. I am just so thankful to not hurt anymore. The past week and a half has been so awful.
ptolemy amkoffee
Posted
EileenH amkoffee
Posted
ricky23486 amkoffee
Posted
It was such a relief just now to read that you were able to take charge of your own pain and begin a self-care approach based on the accumulated wisdom and experience of the great people on this forum. The loneliness and fear that we feel while we wait for help from someone in a white coat (who is often unable to even imagine how pain really feels) is so disempowering that it can be as isolating as the pain itself. I think I am not the only one on this forum who breathed a sigh of relief on reading your post this morning
amkoffee
Posted
Well for anyone wondering why I'm such a silly head about all this I was just diagnosed in August and so I'm pretty new at all this. So it's taking me 5 months to realize that my doctor doesn't get it. I did try calling another rheumatologist and asked if they have a doctor on staff that knew anything about PMR and the person I was transferred to, to talk about this who supposedly knew something didn't know what PMR was. So that told me that there was no doctor that knew anything about the PMR. There was one other doctor office I could have tried but I didn't feel like trying any other. I think she's really the best I'm going to get here in Wichita. I'm going to show her the taper method on here and tell her that's what I want to do. After all her taper method hasn't worked so there should be no reason to not try mine.
Anhaga amkoffee
Posted
I have a very good doctor, but there is still a lot of stuff she doesn't know. I took in a copy of the Dead Slow Nearly Stop taper (I was about two months into the PMR journey) and asked her if she thought it would be okay for me to use. Of course I intended to use it anyway but I didn't tell her that. She was fine with it. There was a point when she thought I had serious osteoporosis issues (I didn't, it turns out) and sort of muttered under her breath that I really needed to get off pred soon. I think at the time I was at 8 or so. But I just carried on, also doing everything else I could think of to help myself get well, and now my doctor is very pleased with me! It was about a year ago I was at 7, and now I'm heading towards 2, I hope, and it's all due to being able to follow DSNS in my own way, because it can, actually, be a very flexible plan. Good Luck!
EileenH Anhaga
Posted
I do hope she has registered your progression Anhaga - because you are an example of what I hoped the DSANS would achieve. You've had no really bad experiences and you have got down in textbook fashion - which I suspect the vast majority of us could using this approach. Some will get stuck sooner than others - but there is no need at all to plunge from flare to flare. And if you had been flaring and having to shoot up and down the snakes and ladders - you wouldn't have been fit enough to sort out your osteoporosis.
It is a good example of how we can reduce the doctor's work if we have the information and encouragement to stick to it.
Anhaga EileenH
Posted
She did say at the very beginning that I would have a lot to say about how the taper would go, so she was definitely open to the idea. She also told me at the very beginning that some patients keep a supply of 1 mg on hand, even once they've tapered off, in case they need it from time to time. At the time I didn't realize pred wasn't a cure, but now I understand what's going on, and I think we've been a pretty good team dealing with the pred taper, mostly because she has completely let me set the pace, and has been very supportive, even congratulating me as I got down to 4 and then 3.
EileenH Anhaga
Posted
Definitely a "find"!!!! And worth hanging on to
Anhaga EileenH
Posted
She was more than a "find". Eileen you've probably read this story before, but for newbies - My doctor of many years had retired, leaving no replacement - he'd tried for two years and retired two years later than planned because of this. I was given over to a new young doctor who didn't have a clue. She did send me to physio as I thought I needed physio for my pain. That, of course, just made matters worse. She ran tests, told me the bolood tests were fine. I specially asked about iron as I've always had trouble keeping iron levels up. She said it was fine. Then she left for another practice, saying we could follow her if we wanted. I was glad to see the back of her, but it meant I had no family doctor. I went into the clinic one day and asked to see the duty doctor. They said I couldn't because Iwasn't a patient there any more. They said, as I knew already, that no one was taking "new" patients - never mind that I'd been going to that practice since the 1970s. I just stood there and tears begain to run down my face and I muttered over and over again that I felt I had fallen off a cliff. At this point I was having trouble dressing myself, getting out of bed in the morning, all the usual, and this had been progressively worsening for over a year. The resceptionist took pity on me, made a call, said I should go over to Section --- and Dr ---- would see me. I went over. expecting to be making an appointment for a future date. They said I would be seen that day. Within 15 minutes I saw the doctor. She ran some of the same tests the other doctor had run a couple of months earlier, and within a week I had my diagnosis. Plus my iron level was extremely low. If I had not had that melt down at that particular time in that particular place, I hate to think where I would be now.
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