In August I will have had PMR for 4 years but I still struggle knowing whether I’m flaring or not. I have trouble reducing my Prednisolone dose despite doing .5 mg reductions over a 4 week period. I was on 10mg in January 2024 and three weeks ago had got down to 8.5/9 mg on alternate days as I’ve been told to do by my Rheumatologist. I’m currently taking 8.5 mg each morning after breakfast but experiencing intermittent aching arms and shoulders day and night.
What I don’t understand is why the aching is intermittent and random. It comes and goes without any real pattern to it and lasts for about a hour then improves. In the past when I’ve had a flare the pain is there all the time and gradually gets worse until I increase the Pred. I’m not sure what to do? I feel I want to increase as all this aching is affecting my ability to get on with anything. On the other hand I know my Rheumatologist will not be happy with me as he always tells me that it is usual to experience some pain whilst reducing and I should persevere with it. I’ve tried taking Paracetamol when the aching starts. It eases it a bit but doesn’t take it away.
Any advice greatly appreciated thank you. Tiggy 🌸
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Tiggy70
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The first sentence in your reply "I'm raising every eight weeks by 1mg" - some people try to titrate doses by increasing the dose. We don't think that works. Are you increasing (raising) the dose or lowering it?
Alternate days do not work for me, I think it confuses the body. Doctors keep recommending it though. It may explain your intermittent symptoms as your system searches for its usual dose.
It isn't his pain. And if 1/2mg is the difference between being able to function comfortably and discomfort I know what I'd be saying.
I've been trying 7 to 6mg (and no, I can't do 1/2mg, can't cut them. I do fine for a couple of weeks and the adrenal side of the change in dose is probably fine now after 4 attempts. But after that 2 or 3 weeks, my biceps and elbows, especially the left one, start to hurt when I need to use them. Even picking up the small kettle or the teapot hurts. Not having that!!!
Oh Pro, this sounds somewhat like me! I’m sorry you’re having such difficulty.
I’ve been trying for a year now to reduce from 7 to 6 and until earlier this week I thought I’d finally made it (slow taper and 0.5 drops). However…..on Tuesday the pains started up again in my right wrist, elbow and shoulder, and my muscles that side are really sore. I put it down to using a walking stick / grating 1oz cheese / holding my phone for too long…..you get the picture. Then last night I picked up a small bowl of fruit to move it from sideboard to table (just a couple of bananas, an orange and some grapes) and the pain shot along the whole length of my arm from fingers, wrist, elbow, shoulder….really painful. Now I can’t rest and am beginning to feel defeated and tearful.
My steroid injection in the shoulder isn’t for ten days and in any case this seems more widespread.
Would I be okay to continue for maybe years on 6.5 /7 mg if I have to? Neither GP nor rheumy seems to even allow for the possibility……😱xx
Well put it this way - if you aren't, I'm in trouble! I've been on pred for 15 years, took 4 years to get reliably below 10, managed to get to 4mg once and then had a massive flare and back to the start. Needed 15mg+ while my husband was ill to function and have been on Actemra for 2 years to get to 7mg. You're a beginner in comparison! You WILL get lower - but there is no point fighting reality, it just extends it all. My rheumy doesn't expect me to get lower than 5mg but he just encourages me to do what I can.
Thank you Pro - so sorry you’ve had such a tough time, but glad your rheumy understands 😊
I guess the best thing I can do is keep trying for a few days on 6, and if it’s not improving, try to have a proper chat with my GP, see if I can explain the situation properly and encourage him to support me on this journey…..It really doesn’t help when the surgery’s attitude is “so you’re still on 7mg!!! You do know you’re meant to be reducing…” Yes, I do know!
How frustrating, Nextoneplease, when the surgery assumes you actually want to be on 7mg! They should try it sometime...I don't really wish this but, at times....it can drive one mad!
Is the pain in just one shoulder and arm? I’m getting pain in one shoulder which sounds similar to yours but thought it couldn’t be a PMR flare as it’s not bilateral. I’m having physiotherapy for it and have lowered my prednisolone twice since the pain started but it hasn’t got any more painful. I’ve just had X-rays taken at my request to see if it’s arthritis although the doctor said at my age (72) I’m bound to have some arthritis!
I have moderate arthritis in my spine and hips but none in my knees ( just torn cartilage in both and waiting for ops) Doctor gave me the impression that he thought at my age I should expect to be in some pain!
I got that guff with PMR in my early 50s and a regular gym user! I was NOT impressed and told him so. At least here there isn't that expectation that you should be crippled by 60!
This was me 18 months ago, I’ve gone from doing this and going to classes at the gym 3 times a week to being a decrepit old lady! This PMR is so frustrating 😡
Wow Mfaepink that’s amazing! Well done you 😊I was never as fit as you but I did exercise regularly and know only too well that feeling of having become a decrepit old lady. I honestly barely feel like the same person I was three years ago .
Thanks Nextoneplease, have you considered that your pain might not be a flare but something else like arthritis? I’m hoping that’s what I’ve got with it just being on one side. Best wishes
Yep - It is so sad... I feel like I'm 80 sometimes, then I look at my 81-year-old mother-in-law, and then I feel 90 😂 although my birth certificate says 56.
The pain starts in my right shoulder/arm/ wrist, where it is always most severe after an old fracture, but over a period of a few days it begins to spread to my left side and also to include knees and ankles. So I do think it is PMR - but certainly complicated by severe OA of the wrist and shoulder (shown on x ray). Physio says if it doesn’t improve soon/ I can’t live with it, he’ll refer me to surgery 🤷♀️
My much missed rheumy ( she has just retired ) encouraged me to stay on 7 mgs for over a year before starting to decrease again. I see it as a kind of watershed level after which I was able to cautiously start reducing again very slowly and without a problem. Now in my 7th year and following the DSNS . Currently 2 1/4 daily aiming for 2.
Actually I have been on 7mg for around a year now and thought I’d reached the point where I could start to reduce….but it seems not 😟 Took 7.5mg today and feeling a bit better, if not great. Have been invited out to lunch tomorrow and knew I wouldn’t make it if it didn’t up the pred 🤷♀️
Haven’t been able to wash towels, change sheets or lift a kettle etc since I started this reduction from 7mg. It’s not good is it? Thank goodness for my husband and my cleaning lady 😊 So depressing though..
Guess I’ll try to get back to what passes for normal then try to reduce very slowly to 6.5mg.
Many thanks again and well done yourself 😊xx
PS Actually haven’t been able to change sheets etc for the last three years, but my left arm was compensating a bit for the right in general life - but on 6mg it can’t do that. I think I need to go back to 7mg….
Well….as I’ve certainly begun to flare -7.5 was kind of a tester of that - I should technically go up to 10 for a few days and then drop down to 7mg. I think that’s right 🤔 I agree I need to be in 7mg as an ongoing dose for the moment. It’s just a question of precisely how I get there.
I was okay for nearly a year on 7 so I think/hope that a few days pulse at higher dose, then back to 7, should work 🤞
It’s beginning to feel like 7 is a magic number 🥹xx
That's also exactly me you're describing there - just my difference is between 10 mg and 11.25 mg ish. Blaming all sorts of activities, which I do every day anyway, just to avoid admitting that it hurts I am flairing. Then it all gets revealed by the shooting pain along the whole length of my arm from fingers, wrist, elbow, shoulder as you say - from just reaching out for the salt... after 4 years on prednisone I cannot get below 11.25 mg (I'm not even sure that's actually enough). My rheumatologist says, as PMRpro does, that there probably aren't big differences in side effects with a couple of milligrams more or less.
So sorry to hear this krillemy 😟I know just how you feel. Suddenly reaching for the salt is a mountain to climb 🥹 Chin up, I keep telling myself pred is my friend, I just have yo convince the GP if that xx
exactly, it isn’t his pain. Why do the Pros think we make it up. Sure they think we love being on Pred. I have been Pred free since 1 Feb but not pain free. Not any worse and Paracetamol eases it a bit so keep trying 😊
You can cut 5mg tablets with a pill cutter. It's dead easy with this one. That gives you 2.5, which you can then mix with 1mg tablets to get to the exact dose you want (unless you go below 2.5mg, of course).
DId you mean to reply to me? Doubt there is much about cutting tablets I don't know but NO, I CAN'T cut my tablets. They are a coated type of pred that releases after 4 hours having taken them at 10pm to achieve the ideal dosing time. They come in 5, 2 and 1mg doses. If they made the 2mg as a 2.5mg version it would be far more use but they don't.
I got stuck at 9mg of pred for 2 years! Every time I attempted a 6-week taper down to 8.5mg, I ended up starting to flare. Even my bloodwork concurred and my GP could almost predict it. The PMR symptoms usually started niggling the 3rd or 4th week of a 6-week taper. I atempted to taper by .5mg 5 times in 2 years…once I continued to taper and ignored the re-emerging symptoms and they just got worse and it took a pred burst to resolve and end up back at 9mg. SO frustrating!
So I can empathize with you and your tapering struggles. I try not to get hung up on the “numbers” however I did want to get to what is considered a “low dose” (7.5mg and lower). Trying to discern between pred withdrawal and a flare while tapering can be a challenge….sometimes it feels like solving a puzzle with guesswork and luck, but listening to our bodies is key.
It’s important that our doctors recognize that we are trying our best to lower our pred dose. My GP was supportive of my efforts but we eventually decided together that I would try a steroid sparer (that has helped me taper albeit slowly). Hope you navigate your way through your tapering challenges eventually. Quality of life is important too!
Thank you for your response. I know it’s been discussed on the forum before but I do feel like a failure every time I have to go back up to a higher dose. I know I’m not but it just feels that way. My Rheumatologist gives me a lecture on the bad side effects of steroids which I am fully aware of as I have most of them! Can I ask which steroid taper you have been taking. I’m constantly being pushed to try one and think I may have to. Methotrexate does scare me as I suffer with IBS and I’m worried about losing my already thinning hair. It’s such a struggle isn’t it? 🌸
I suspect what’s adding to your feelings of being a failure are the lectures your doctor is giving you….shame! Of course you are aware of the side effects of long-term pred…you’re living them. And no need to repeat the same lecture either. I’d be tempted to remind them you ARE trying (hence your lower dose since the beginning). Neither your doctor or you can control your disease activity. I feel strongly that doctors should not blame the patient, instead blame the condition. This would likely reduce the conflict between folks who should be trying to work together for the betterment of the patient.
I blamed my body for awhile instead of the autoimmune disease. That didn’t help either. So I started focusing on what I COULD control (diet, activity, rest, who and when I shared about my condition, who /how I got support). It helped me feel like I was giving myself the best chance at coping and healing.
I reluctantly started Methotrexate just over 2 years ago. I’ve had some success with only one, manageable side effect, slight hair thinning. I started at too high of a dose I think which resulted in my getting sick a lot the first winter. After re-grouping with my rheumy last spring we decided upon a lower dose and no problems since. I did have to stop my MTX a number of times when I had a diverticulitis flare and was on antibiotics. (I had Diver prior to starting MTX and it has not made it worse overall). This slowed tapering. I still think I’ve made the right decision for me as I approach 5mg pred currently. When I had to stop MTX once for 3 weeks all my PMR symptoms returned, so I know it’s doing something.
Thanks for your response. I’m glad that the Methotrexate is helping you to reduce your steroids. I think I will have to give it a try at some point. I have one question. If your pains come back when you stop Methotrexate for a few weeks how will you know when your PMR has gone into remission. Will you have to take Methotrexate long term? I’m already taking 9 prescription medications and have recently had to start injecting insulin for my diabetes. I really don’t want to take anything else! 🌸
The long-term plan created with my rheumy was continue taking it and attempt to get to 0 pred, then taper or just stop the MTX. If symptoms don’t return, I would be in remission.
Of course if I can’t taper pred to 0, that requires another conversation about remaining on MTX and low dose pred. I’ve often pondered which would be better….low dose pred and moderate dose MTX, or no MTX and potentially higher dose pred with attempted tapering again. I seem to have only a few manageable side effects with both medications and I don’t take any others (only supplements).
Everyone would choose differently based on their individual circumstances. On bad days I sometimes think “that’s it, this is taking too long, I’m coming off of MTX, I’m raising my pred and I’ll feel better and take my chances” On good days it’s more like “this is working, the last pred drop was easier, I don’t have many side effects and I have to be patient….the lower the slower.” My rheumy would be consulted either way.
I hope this helps…..it seems my journey has been filled with re-assessment, decision-making, and changes/adjustments with my body/symptoms guiding the way. Having PMR has meant years of uncertainty…you don’t know until you try. Sometimes your body makes the decision for you.
Thanks for your explanation. As I’ve so far refused to take MTX I haven’t had the conversation with my Rheumy about how it would work for me. The fact that the MTX doesn’t give you too many bad side effects is a bonus. Prednisone is playing havoc with my hair, skin, bone density and diabetes. I guess I won’t know how MTX effects me until I try 🌸
Hi Tiggy70. It seems that the method your Rheumy wants you to follow is not being very successful and I think there are many here who don't like the alternate day reduction. It's probably/possibly worth trying one of DL's tapers, can be found in FAQ's, and moving to 0.5mg reductions over five or seven weeks. The five week one has worked well for me, but even though five weeks is the plan it's not set in stone, if it doesn't feel right to start the next taper then give an extra week or two. Doctors and Rhemies need to get their heads around the fact that patients are individuals and that their treatment needs to be tailored around what works for them and that gives them the best quality of life.
Hi Bcol, thanks for your response. I’ve been doing the alternate day regime since January mainly to appease my Rheumatologist. The last time I saw him in December 2023 I gave him a copy of the DSNS method which he hadn’t heard of. Strangely the alternate day method worked for me getting from 10 mg to 9.5 and 9.5 to 9 but I’ve come unstuck on the 9 to 8.5. 🌸
I find it hard to suss out if I'm having a flare or not. I'm down to 2 x 5mg Pred per day with a hope to go down to 9mg per day from next week.
I have been going to the gym 3 days per week and working on building up my stamina with mostly cardio work and adding exercises like push-ups, planks & wall sits and lost a good bit of weight on no-carb/lo-carb diet. I increased the push-ups this week to 3 sets of 50, interspersed with the planks etc. and about 7km on a mix of treadmill/bike/rower. I also added a few light exercises of resistance to the arms and legs with weights/machines.
Woke up a bit stiff in legs and arms about 4.00am went back to bed thinking is it/isn't it a flare, but eventually got up ok with only my hands and fingers stiff. As a Writer this always unnerves me a little as keyboard awaits! However, it was so short-lived that I think it was just the normal reaction to gym work. So I will carry on reducing unless I get a really bad hit on rising like the original attack.
Meantime, I'm putting the hands/fingers stiffness down to aging arthritis that always happened even before the PMR.
What I'm trying to say though is it is hard to distinguish, but the mental side is maybe half the battle. Any thoughts from those more experienced sufferers?
I think you need to listen to your body and cut back on that increase in the push-ups. No reason not to use the gym with PMR but you do need to adjust the amount you do so you let muscles adjust more slowly.
Thanks Pro, I do tend to listen to my body. Even to the point of not attending a session when just feeling lethargic. I tend to feel that so long as I get 3 good sessions in a week I'm fine. At 74 I just want to keep going no matter what. Trying to lose weight while on Pred is tough though. I'm sticking to Low/No Carbs in my diet but have plateaued and am desperate not to start adding weight. We are forever trading aren't we?
Bcol has kindly given you link to my tapers…. so won’t repeat… but not a fan of alternate days tapering….and once uni get belong 10mg, it’s easier if you only drop 0,5mg a time…
Thank you. For the past two years I have tried to reduce by 0.5 mg each time. I just can’t do 1mg drops. Currently I’m thinking I may have to increase the Pred by 5mg for 5 days then go back to 9. I’m due to have an ultrasound guided steroid injection into my shoulder next Friday. Should I hold back on increasing my steroids until after the injection?
Dear Tiggy70, your problem reminded me a lot of my own, except that I've been on Pred for 2 years, not 4. Reading everyone else's posts tends to make me feel better, in a perverse sort of way! I've recently had to increase from 10mg to 15 for a couple of weeks, then I decided on 12.5 for the same time and am now on 10, where I'm staying put for a while.
I've found it difficult to identify this as a flare, tbh. It's not the sort of PMR pain that I endured originally but it feels more like I've been walking for 25 miles and the stiffness/pain one experiences for a while after that. A few years ago I walked part of the Camino in Northern Spain and it's sort of similar to that pain, which went away after a bath and a good night's sleep. This pain/stiffness never really goes away and I have ceased up completely on one occasion.
I understand what you mean about feeling a failure too, though I realise that is not the case, but it's psychological, I suppose. And my Rheumy is under the impression I like being on steroids, with all the side effects, including my hair going down the drain! He also has suggested Methotrexate but I've resisted thus far, particularly since I'm on drugs, needless to say, for other conditions. I discussed with a neurologist and he wrote in a letter that I shouldn't take Methotrexate, which didn't please the Rheumy...
So, apologies for not being able to give you any advice, except I guess, to keep plodding on, reducing V slowly at 0.5mg, using the DSNS method and to continue venting your feelings on this excellent forum. I just keep trying to remember PRO's and DL's words: we WILL get there.
Thank you for your comments. Using the forum does make me feel less alone with this illness. I don’t personally know anyone with PMR. We don’t have a support group close to where I live, the closest is 40 miles away. My sister had PMR about 12 years ago but luckily she was off the steroids in 15 months. I was hoping it would be the same for me but it was not to be. As your name suggests ‘time flies’. Let’s hope our PMR will not be with us for too long and as you say we will get there 🌸
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Suspected as much but I don't like to assume!!!!
I cannot get below 11.25 mg (I'm not even sure that's actually enough). My rheumatologist says, as PMRpro does, that there probably aren't big differences in side effects with a couple of milligrams more or less.
Increased prednisone to address this longstanding flare
flare
Flaring
Is it a flare?
