I folks. I haven't posted for awhile, but I did listen to all your previous advice and made some serious lifestyle changes. It's been quite hard emotionally giving up all the things I love to do, but it's in the hopes that I will get through this and eventually start to reclaim some of my activities. In the meantime, I am resting.
But I am concerned about the high dosage of prednisone I am on given that I still have symptoms.
Quick refresher:
- I was diagnosed in January and given a ridiculous tapering schedule which totally messed me up
- I started over again mid-February with 30mg and managed to taper to 20mg by mid March
- tapering below 20 didn't go well, so back to 20 in April and stayed there until I got back to Canada to see my dr in May
- my CRP was 30 in January and in May it was still 15. My dr. said he was surprised the CRP was still so high
- my dr said to remain on 20mg until I see the specialist in August
So I've been on 20mg now for 3 months. I am okay as long as I do absolutely nothing. Any little activity and I will require at least one entire rest day, maybe two, and I'll have pain in my arms. I am utterly exhausted. I would say the pain is about the same but the exhaustion is getting much worse.
So ... my question is ... is 20mg a lot on an ongoing basis for PMR? Sometimes I think I should take more. Is anyone taking this high a dosage on a long term basis without even trying to taper?
Thank you so much for your advice. I would really feel like I'm all alone in this without you guys!!
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BoaterAnnie
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My gut tells me that there is something more going on with you than just PMR. I would expect you to experience a greater degree of relief and energy by now. 20 mgs is an average start dose, 30 mgs is high. You really need your Rheumatologist to get to the bottom of this. I wonder if your experience mirrors that of people who have Fibromyalgia as well?
Yeah, that sounds like a good plan when you're travelling. I have been back in Canada for 2 months, on the 20mg for 3, but things don't seem to be improving. I mean, it's WAY better than before I was on prednisone at all, but it hasn't changed over the past 2 months. It doesn't seem like I could taper. In fact it seems like I should be taking more given the symptoms are still present.
30 to 20 in that amount of time seems too fast a taper. I would go to 25 (given you will not get answers or relief for 7 weeks from rheumi) and see if that helps....if it does just stay there for maybe 4 to 6 weeks. I started at 15, but had to ask Dr. to up it to 20 after a month, because, like you, I was still in some pain and exhausted. I stayed there for at least a month. Don’t ever taper more than 10%....it just isn’t worth it. Once you are on the right road...go slow and steady!! Prednisone will be your friend during this weird journey!
73 year old woman.....Diagnosed oct 2016, off Pred Nov 2018. No flares, but lots of little things along the way! (Numb hands, weight gain, etc.....all temporary) Lucky to be back to normal now.
I could try that. The tapering was going fine until I got to 17.5 and then I felt awful so I went back to 20 and felt better. But I haven't tried to taper down past 20 because there are still symptoms and the exhaustion is getting worse.
Did your doctor do tests for all the other things that mimic PMR? Do you have joint or back pain? What is worst?
I have been on 15mg for a long time but at 15mg I have no pain at all. What sort of steroid are you on? I managed with 15mg and less of both prednisolone and now prednisone but at one point I was switched to methyl prednisolone. It never worked as well as prednisolone right from the start and after a few months I had a major flare. I eventually went up to 20mg and even taking it at night it was lunchtime before I got any relief at all and it wasn't outstanding then. Taking it in the morning it would be late afternoon before anything changed. The methyl part of it is supposed to make it a better antiinflammatory but all it did for me was make all the side effects big! Weight gain, totally Cushingoid, black beard, hair went nuts etc etc. Last summer my rheumy persuaded me to try methotrexate - and that also caused magnified pred side effects that I don't experience with pred alone. People don't all respond the same to various steroids and other drugs.
How were you on the 30mg originally? 10mg reduction in a month is far too much at that level and that may have caused part of the problem - you can only reduce if the existing inflammation has been cleared out and you go in small steps. You probably didn't do either.
And it is perfectly possible what you are struggling with now are what I call add-ons - myofasicial pain syndrome and piriformis syndrome plus bursitis are my particular bugs and they cause trouble for my entire back and upper legs. You either need a long period of highish oral pred or you need targetted treatment, which is better really. Sort them and you usually find you can reduce the oral pred.
Yes, I had tests for everything that mimics PMR back in January. It is my shoulders that are the worst. I do have some back pain, but I also have an old back injury that always causes me pain.
I am on prednisone.
I guess my reduction from 30 to 20 was still too fast, but I felt fine until I got to 17.5 and then went back to 20. I felt good when I went back to 20. But slowly the exhaustion has gotten worse.
I am doing some photography, but I have a whole different setup to help me continue with it. I made an investment in a rig that allows me to photograph without holding the weight of the gear at all, but I do have to hold my arms up a bit so my hands are at eye level. But I don't hold them like very long just a minute. So I sit in my lawn chair and wait for wildlife to come, and when it does I stand up and shoot for a few minutes and then sit down again. I do that for a couple of hours. So it would be equivalent to lifting my hands to eye level and putting them down again maybe 25 times. And getting up from the chair maybe a dozen times. I'm barely moving! Other than that, I sometimes work at my computer for a couple of hours - but not every day. I hardly ever go for walks or do my exercises because I'm so tired. It's not the pain so much as the exhaustion.
You are barely moving for normal - but you have a new normal, PMR normal. Even thinking is tiring. Chatting to someone, concentrating.
Fatigue is an inherent part of autoimmune disease. You are tired because your body is being attacked by its own immune system. It;s like having real, proper flu. But week after week, month after month. Permanently.
Honestly - I know it sounds crazy - but ask the others...
Not really - I do considerably more than that - so do lots of us. But what you do have to do is get into training starting at a very very low level. You have done very well in adjusting your approach - that must be acknowledged. But for the moment you need to do even less and build up very very slowly. It requires a lot of patience - if you don't learn anything else you will learn that
And here I thought I was doing so well listening to the advice and reducing my activity level, finding a solution that allows me to continue photography, and doing lots of resting. But it sounds like it still isn't enough.
Thank you very much for the advice. I really appreciate it and I'm listening. I will reduce the amount of time I spend photographing - after taking a few days of doing none.
I have decided to become a wildlife expert! Every week I pick an animal and learn everything I can about it and then move on to another animal the next week. At least I can spend some time learning. Although sometimes I feel too tired to learn and I have to watch a movie.
You just need to go a bit further down the scale - FOR NOW. It doesn't mean you won't get back to where you were, just not quite yet. Have you tried doing it on alternate days? Photography day alternating with a rest day where you use different muscles?
No, I haven't really tried that, I just go based on whether there's any wildlife action outside. Some days nothing happens and other days there is a lot. But I guess I should be basing it on me and not on the animals!
The concept of a rest day is very important at the start. That's when you assess whether yesterday was too much. It doesn't mean you can't do anything - just something different.
Now this is not for everyone, but has your doc mentioned Methotrexate? When you mentioned having trouble at 17.5 , it rand a bell. I was ok at 20 and for a while at 17.5 but couldn’t get past that. When my Rheumy suggested MTX I really wasn’t happy about taking it but I agreed because I knew I could just stop it if it didn’t agree with me. It was very effective in my case and I had few side effects.
My ESR dropped dramatically after a few doses. I’m down to 4 now with some ups and downs. As I said, it’s not for everyone but it might help.
I haven't been to the rheumatologist yet, my appointment is not for another 7 weeks. I don't think my gp would do that. But thanks for the info, that is something I will research a bit before I see the specialist.
I wouldn’t like to comment on the pain in your arms but I know when I was on 20/21 mg for a fair amount of time I found it very difficult to do anything. We went to London for a couple of days for my husband’s 70th and I found it so difficult to walk a short distance and was exhausted. I was never too sure if it was the effects of the pred or my GCAPMR. Is it possible for you to have a second opinion? Are you able to go for one consultation privately to a Rheumatologist who could get you in earlier? Need though I feel to have a recommendation of a good Rheumatologist . What area do you live in? I went privately for one consultation and then went on his NHS list. Let us know how you get on.
I'm not sure if you mean that you were unable to do anything because the dose was too high or too low. Are you saying that when you reduced the exhaustion got better?
I don't really want to go for a private consultation because it will cost me $1,000, plus 3 days of my time, plus 3 rest days afterwards. And I they will probably tell me I have PMR.! But that is an option. Or I could just persevere for 7 weeks until my appointment with the rheumatologist.
Ok didn’t pick up that you weren’t in Uk. Yes I think for me I felt better when I was able to taper down to 18/19 mg than I had felt on 20/21mg. But one can never know why. Was it because disease activity had lessened or the steroids had had that effect on my body? Don’t really know. Not much help I know - maybe as you say your Rheumatologist may shed some light on it when you get to see him.
I would be interested to know exactly what your daily routine is when you are not resting. Have you tried OTC painkillers for your shoulder pain. If it works it probably delayed onset muscle soreness. I did a task that meant I was holding things putting them together the next 2 to 3 days I had terrible shoulder pain. Today it has eased.i have fatigue pre pred and after the initial 3 weeks it has been in the picture varying from needing bed early to not getting out. This is especially the case if I have been more active...visiting family for a few days and trying to do normal activities at a normal speed.
I get up in the morning, go outside the RV, and do some photography. I mentioned to PMRPro above about my new setup so I don't have to carry the weight of the gear at all anymore. I just stand up and shoot, so I lift my hands to eye level a bunch of times, but that's it. Other than that, I sometimes work at my computer for a few hours if I can. That's pretty much the extent of my activities now. I spend a lot of time watching documentaries and reading. Then I do the photography thing again around sunset. I do sometimes take OTC painkillers if I get shoulder pain and it does work. But right now it's not so much the pain as the exhaustion.
That does explain shoulder pain. Any repetitive movement can cause it and doms seems to be confirmed by OTC painkillers. The fatigue is just part and parcel for some of us. It did get better for a while but seems to be hanging around if I overdo it. The other thing is I have always rested every other day. I don't just mean not doing activities outside or shopping or whatever. Once the dog has been fed, watered and decluttered I literally don't go anywhere. I do stretches that are very gentle and that I have used for years. If I am extra fatigued I have a duvet day. Hopefully if you start to Slowly taper you.may hit a good dose of pred that controls PMR but doesnt hinder you.
Read, read! BUT I get up every hour for 10 minutes and stretch, light housework, waddle round the flat, etc etc. It's surprising how much you can achieve in 10 minutes.
Maybe that is what you NEED to do for a few days anyway! Take a hot bath (that was my saving grace at the beginning) and just do nothing. You will soon learn what works and what doesn’t. Get on the right amount of prednisone first. Don’t yoyo. Your goal is to feel like you can get through the day with as little pain as possible. You will learn to pace yourself. Everyone is different. Realize that life will be a little different for a couple of years or so. Day by day! This forum is the other thing that was my saving grace! You will probably learn something new every week! Because of the forum, I started taking these vitamins everyday as a result of various issues. VIT D-ZINC-MAGNESIUM-VIT B12 METHYL-VIT K2-VIT C. I still take them today. I swear they helped the numb hands etc. I think you are going through the hardest part now....learning how to manage this strange time in your life. Don’t let PMR define you...There is light at the end of the tunnel.
By the by did you have your vit d checked? That can make a big difference. My was low and the extra strength weekly dose for 6 weeks made a big difference to my energy levels. You also need a low carb diet so your blood sugar does not spike on top of the pred spikes. But the main thing to remember is the pred is there to his rid of the inflammation. It does not currently PMR but controls the pain. You need rest because it's harder to charge your batteries. Perhaps have a couple of days rest then do a 30min photoshoot....that includes setting up. Then rest the next day. If no bad effects Terry 35mins and so on.
I haven't had vit d checked recently, but I get A LOT of sun spending my winters in Arizona and summers in British Columbia and most of my time outside. It was checked a few years ago and the dr asked how much vit d I took and when I said none, she said "you must get a lot of sun". So I think it should be okay. I am on the low carb diet already.
The photography I am doing is not nearly as physical as what I used to do. My husband sets up my giant rig for me and I just stand and shoot and don't have to deal with the weight of the gear at all. I am not standing for 30 minutes or anything, I just stand when something happens for 5 minutes and then sit and wait for something else to happen. But there is the repetitive motion like you said and sometimes I find myself holding my arms up until they hurt and I have to put them down. So I guess that shows I am doing too much still.
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