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Tue, Feb 18 12:59pm · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hi Sue, I tried to excercise and push myself but found that it did not help. For me if I do not feel good in my body I rest and just do things that I can manage, I walk and try to do around 8000 to 10,000 steps a day walking briskly but not pushing it too far, that also depends on how I feel. I am fortunate in that I have a love for photography and that takes me to another place when I am in pain. Just walking around in nature and fresh air takes me out of the pmr world. I carry a backpack which weighs around 10kg and have found that while doing my photography and moving around I am limited in how long I can carry the pack for, when I stop and take the pack off my shoulders and arms are very sore, usually takes a couple of days to settle. I put on a fair amount of weight around 10kg and that did not make me feel better either, but I went on 800cal a day for two weeks and felt wonderful, very little carbs and lots of vegetables and protein, so feel that diet has a big role to play in this. Keep a food diary and log how you feel after each meal, you may pick up that something you are eating is flaring you up. PMR is a waiting game and you have to just give in to it and accept that it will take as long as it takes to get off the prednisone, like you I wanted to be off prednisone as soon as possible. I also am taking CBD syrup, the CBD oil is still not readily available in New Zealand and I have found that it helps me sleep at night. My advice is to be patient, once I was on 10mg from the 20 which took 3 months, I then reduced 1mg every 4 – 6 weeks because if I did it any sooner the pain would return, usually had a couple of days of pain once I lowered but settled after a few days and my body got used to the lower dose. Good luck Sue, I hope that this helps in some way. Kind Regards Linda

Mon, Feb 17 12:11pm · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hi@suemck, I was diagnosed in July 2018 and have been trying to taper down for the last 6 months from 5mg prednisone, it has gone in swings and roundabouts, the method I have used is reducing by 1mg per month once I was down to 10mg, I have got to the 1mg and found it really difficult to just stop as I get a flare up, so what I tried was reducing by days, I took 1mg every day for 2 weeks, then 1mg every alternate day for two weeks and I am now up to 1mg every 4 days. I cannot say I am pain free but it is bearable and subsides over days. I had my CPR level and it is down to 3 so hopefully in a few weeks all going well I can stop completely. I also have had strange pain reducing the prednisone, my knees are very sore and my feet ache, feeling of sharp tingling and heat in my legs, plus my body aches like the flu but not all the time. Think this may be related to my thyroid problem. I wish you every success in getting off the prednisone, but you also have to listen to your body and reduce when you feel the best, its no fun being in bad pain, my original plan was to be off prednisone in a year, but realise now that you also have to be sensible I have found this site a great place to get support and information as there is so little known about PMR and have had very little help or understanding from people around me apart from pills from my Doctor, so being able to talk to like minded people is a god send. Best wishes for a speedy recovery Linda.

Oct 14, 2019 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

Hi all, well Im back again to ask some advice. I had reduced my dosage down to 1mg and was feeling okay, then I had what I thought was a relapse but after upping my meds it mad no difference and the pain was different, I think you said John that you thought it may be something else and yes it was. I had a trapped nerve and had to wait for it to heal. Thats when I decided to drop the 1mg to see how I would go, I have been off the prednisone for nearly a week now and my whole body aches like having the flu, I am also very stiff if I sit too long and getting going is a bit of a task, I am really tired most of the time with very little energy. Is this my PMR or withdrawals from the meds. I could really do with some guidance.

Sep 2, 2019 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hi kd @kdmorris, thank you for your reply and information. John suggested that it may be a pinched nerve but I have no symptoms of that, no pins and needles or numbness, it's just intense pain in the muscle and my arm is so sore to press the muscle and bone. If it is nerve problem they say with rest it will settle down, so will see how this goes, I just don't want to be taking pain relief all the time as it affects my stomach. I am so happy for you that you are off prednisone, I will try and stay on the 2mg and hope this settles but if no luck in the next week will have to increase to 5mg maybe. Thank you once again for your wishes and prayers.

Sep 1, 2019 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hello everyone, well after feeling good about getting down to 1mg I too have had a relapse, after being on 1mg for around 2 months and slight pain in my shoulders it has now turned and I have unbearable pain in my neck shoulder and arm. The pain is constant but I have burst of pain so bad I can hardly stand it. Is this normal, as previously I had the pain all the time and once I started on Prednisone it lessened to a slight ache. I have increased to 2mg but has not made any difference and the pain is wearing me down…don't really want to push the prednisone to a higher dose, can anyone recommend some other alternative. Pain relief is not making any difference.

Aug 6, 2019 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hello again @jules11 I have to be very pro-active with this myself, my Doctor has only taken 3 blood tests since I first had this, 1 to diagnose which showed a CPR of 49, one 1 month later which was 5 and then pretty much have been told to reduce every month or less if I felt okay, so only having visits maybe every 3 months for repeat script. I am going on holiday Saturday and will be seeing Doctor on my return, I will ask then for a blood test to see what my levels are. My personal feeling is that if I still have symptoms this condition is still hanging in there somewhere and just waiting to rear its ugly head, that's why I am concerned about dropping that last 1mg. Doctor told me when I asked if I should cut down to half or every alternate day – just stop. I really don't find it that helpful and get more from this group. My partner has just told me that there is another drug not sure if anyone has tried this but evidently good results. Etanercept is the name of the drug or I think it is called Enbrel here in New Zealand. Would be interested if anyone has tried this.

Aug 6, 2019 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hi @jules11 I live in Wellington New Zealand and have joined this wonderful group to try to understand this condition, I have found it very helpful and it has given me emotional assurance as I got very depressed with this. I was diagnosed back in July last year and are now on 1mg. I was instructed by my Doctor to reduce 1mg per month once I got to 10mg. I did okay, like you just had a bit of stiffness in my shoulders and hips, when I got around 4mg I had to listen to my body as the stiffness was still there and I waited until I felt almost pain free before I reduced, it was normally around 6 weeks rather than 4. I am reluctant to go off the 1mg as I had a bit of a flare up when my doctor changed my blood pressure pills, Im slowly feeling better but still have days where the stiffness and pain in my shoulders is quite bad. I feel that as long as you have symptoms you have to listen to how your body is and respond when your feeling okay. I know we all want to get off this drug and go back to normal but feel is it worth the risk of a flare up and then have to go back on a higher dose. I think patience is the name of the game, good luck.

Jun 16, 2019 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Thanks for your reply, however the side effects were there even when I had a larger dose, so just think it is taking its time to get out of my system. The PMR is manageable even on the 1mg so do not want to increase my dosage if I am coping okay, none of the symptoms I have are to do with the PMR only the side effects of the prednisone. 🙂