I would love your advice on the next steps, please.
I was diagnosed 6 yrs ago. I’ve been on pred ever since, never able to taper past 7mg. This week I have had my worst flare since my diagnosis - increased my pred to 12mg and it’s just about working. Beginning to worry I will be on it forever - even more worried that methotrexate appears to be the only alternative.
Feeling v.down & tired atm - totally unlike me - I’ve got too much to do!
Advice, lovely people?
SQ
6 years in for me too! No real advice from me, just sympathy. I've never successfully got below 10mg pred. I really don't think we are at the methotrexate is the only alternative yet. Have you tried the DSNS method? I tried it 10mg to 9 mg over 2 months - no luck but I THINK I've just successfully DSNS over 2 months to 9.5 mg .....small steps!
I have been on prednisone for 10 years in July, so I know how you feel. I am tapering once again. I got down to 4 mg 2 years ago and that was the lowest I have been and then I had such a bad flare up. I increased to 10mg but it didn't help, finally I increased to 20mg and felt relief, I wasn't tired all of the time, my muscles didn't hurt, I felt good. It is a great drug but horrible at the same time. I am now at 15mg (I got down to 10mg and had to go back up again) and at March 1st, if I am feeling okay, I will lower it again to 12.5mg for a month and hopefully I'll be okay. Even at 15mg I'm not feeling as good as I was at 20mg but hopefully it'll just take time to kick in more. When I get down to 10mg, I will taper 1mg at a time, so hopefully that will work . I know exactly how frustrating it is for you JCB3. My rheumy wanted to put me on methotrexate too but after I read up on it I decided it wasn't for me; some people don't mind it though. All I can suggest is to taper slowly and try to be patient with yourself as hard as it is. Good luck to you JCB3 and please let us know how your progress goes.
Almost identical to me - I believe it is just one form of PMR that most rheumies don't meet so won't acknowledge. Prof Mackie has a few patients like us and finally has come round to my concept of multiple forms of PMR (a bit like MS but mercifully not so disablling).
Hi As you described I am not willing to go on methotrexate either .having been on Pregabalin enough for me!relief to come off those horrible drugs.Yes I am on steroidsFirst.diagnosed with PMR.then Fibro.Yes I have Arthritis Spinal stenosis arthritis in my ankle.Steroids help with pain however some of my issues should be dealt with as per condition.not covered by medication to just mask the pain
I was diagnosed with PMR 10 years ago, and have tried several times to come off my Steroids. I have managed to get to 1mg per day but just can’t get past that!!! My doctor has now told me not to try again and to stay on that dose forever!!
I have been on pred since 2012. tapered to fast to start and flares followed. Did get to 6mg about 18 mths in but not again until now. Some of the issue will be the inflammation has not gone, but also the taper. I am now fully converted to DSNS and only go down by 1/2 mg at a time, sometimes over 2 mths. On my way now to 5 1/2 much more successfully. My inflamm markers do not reflect how I am, but apart from occasional wobbles, my GP trusts my assessment. Feeling depressed by setbacks and other other health issue I can totally identify with. It has taken me so many years to accept the slow nature of all this but hearing from others makes a lot of difference. Go slowly, go well.
I can only offer my sympathy & total understanding of your feelings. I am nearly 5 years into coping with GCA.Now struggling to taper from 6.5 mg to 6.0 having been stuck at 7.0 for a year. Below 10mg (when you manage to get there) just try reducing in 0.5mg steps which I think makes it easier to monitor any possible flares using the DSD method. I did go on methotrexate when I got stuck at 12mg but I felt terrible on it so stopped. Have your medics suggested you should go on Actemra to try & help your tapering. I still have some days when I have done only a little too much the day before when I could sit down & weep with how awful I feel. I do hope you start to feel better soon.
Depends what country JCB3 lives in - and if it’s UK (which I suspect) then Actemra not used for PMR.
Also 6 years on pred with PMR, feeling like you JCB3, very weary of this and all the add-on steroid-induced health problems such as Type 2, IBS, high BP, blah blah... I'm generally a very optimistic person but this winter, the incessant rain, the uncertainty and isolation of COVID, a gastro upset put my pred level up to 10mg from 7.5, the lowest I've managed, now tapering DSNS by 0.5mg to 9mg so far so good. I'm almost fearful of decreasing now. Perhaps for both of us there is 'too much to do' and we are still trying to do it when we should be pacing ourselves - good luck and sympathy. We'll get there 😊
Hi Just like you
Started 2015 got down to 7 about 2 years ago then back to 15 got down to 7 in Jan this year then stressful event back to 12.
Am staying on 12 at present as just lost my lovely Mum.
Guess we just start over again
I just can't tell you how helpful it is to read about so many of us who are still battling with PMR after a long time. I am just going through another nasty flare which has reduced me to a walking stick in the day and painful nights. Thank you everyone, it is amazingly uplifting to know that others are going through similar difficulties. Thank you
Sorry sorry to hear about your Mum, Rose. Sending my very best wishes
So sorry, Rose, there's such a lot of heartache behind those words 'just lost my lovely Mum'. Gentle thoughts and a virtual hug.
Oh Rose, so sorry, Don't know how I missed your post xxxxx
That's Ok It was a beautiful departure
I have spent a lot of time with her this last few months but after calling GP out once last Monday ,111 Thursday.
Called for ambulance Friday morning 6.30am .
I was so lucky to be able to spend the day with her holding her hand and chatting she had DNR in place and spent final hours in End of Life Care Unit .
She went peacefully and gracefully
All she's been telling me last week was she's too old and it was time to go .
I have never seen so many bright stars in the sky as I saw Friday night walking home from the Hospital.
Heard today she had HA she had HF and was getting so much worse so I was expecting it .
OMG Rose, I missed the post about your Mom too. You and your Mom appear to have had a wonderful relationship right up until the end. You were very blessed.
My Mom died peacefully too, but I was miles away. I miss her to this day and it's been 24 years.
I empathise entirely. I too was diagnosed with GCA 6 years ago, which morphed into PMR. I've made numerous attempts to get below 6 mg, but flare every time. Went on to low dose Methotrexate 18 months ago (I think, need to check!), and so far no side effects from that thankfully, but not sure what good it's doing. My rheumatologist advised me to wait until the spring before trying again, I feel he's right, as I do seem to be affected markedly by cold weather, and I can't afford to fly to Barbados even if I could 😂
I’m in same boat on 4mg at the moment trying the dead slow system at the moment . My Rheumy wants me on MTX as he suspects I have Sapho syndrome also it maybe I had that all along , these immune illnesses mimic each other so much . Maybe MTX is worth a go as as sparing drug , my friend got off pred using it and is drug free now . I think I have no choice with my latest symptoms clavicle needs surgery now and sternum is very sore . Good luck and try to keep positive , negative thoughts create stress and it becomes a vicious circle
So much useful information on here for us “old timers”. I have had PMR for nearly 9 years and on pred. over 8 years. I have had many flares and could only get to 11mgs until this year. This is because I had very painful OA which kept giving me flares.
Now that is sorted, I am reducing using DSNS and going 0.5 mgs at a time. I.e. very slowly! I am just beginning a taper to 8.5- the lowest I have ever been. It’s hard not to feel some trepidation at this point, especially as I know the PMR is still there. I walked too far last week and therefore had a sleepless night and had to lie down all of the next day. This year though, that doesn’t turn into a flare the way it has done for many years previously. Progress!!
I too have had a flare up of OA, thinking it was PMR. I increased from 9mg back to 15 mg. I know I'm naughty and was advised to stay on each mg for a month, but due to horrible side affects again being back on a high dose of Pred. I decided to stay on each mg for one week. Looking back it does seems more likely it was OA but steroids nipped it in the bud. Today I'm taking 10mg but will remain on that for a month, just in case. Seems many of us only manage to get don to 9 or 8 mg then a flare of some kind. My blood glucose is raised, as is my BP, eyes have gone all weird again and keep getting hot and jittery. Sad for those, like a friend of mine, who has Fibromyalgia, where steroids aren't prescribed, as they don't seem to work for that. Keep taking the pills !!
Hi SQ
I’m just coming up 9years on Pred 😳 who’d have thought it? I’ve had PMR for 9&half years - l note you say “I’ve got too much to do!’ - have you been overdoing it?
I take MTX & you can read my story on my Profile Page or l can forward it to you later if you wish.
Try & let yourself rest this week to give the extra Pred chance to work.
Kind Regards
MrsN
Thank you! I would really like to read your profile. Is there a private message option? Or where could I read your profile? SQ
I've been on pred for 11 1/2 years - with 5 years of unmanaged PMR before that. It took me over 4 years to get below 10mg at all and although I did get down to 4mg a few years ago I flared when trying 3.5 and was eventually back to 15mg. I haven't been able to get even to 14mg for more than a few days without other problems worsening (I need some of that dose to keep atrial fibrillation due to the PMR under wraps) but I've just had a month of 14mg and been fine.I agreed to try mtx - I lasted a month before the overwhelming fatigue made me stop. It took a few months to get over that . All it did for me in that month was cause side effects that are usually put down to pred: constant hunger, weight gain, muscle aches and pain - I felt worse than I did in the 5 years with no pred! And my hair came out in clumps. We have talked about leflunomide - but I am worried about the common side effects. I'm sole carer for my husband and that makes me very reticent about trying more drugs now I have it down to 4 different medications to be taken at 5 times in the day. Polypharmacy always worries me.
Methotrexate isn't an alternative, it's an add-on that may or may not work for you. And it adds another layer of potential adverse effects.
40% of PMR patients still need pred at 10 years, albeit at a low dose - my rheumy says he has a lot of patients on long term pred, I just need more than most. Only half of patients are off pred at 6 years.
medpagetoday.org/rheumatolo...
practicalpainmanagement.com...
(same basic work, different emphases in the articles)
I accepted a long time ago that this was the way it was likely to be. The pred is the least of my worries - I need to lose a bit more weight especially after lockdown but I gained weight with PMR and one form of pred - and lost it all after switching to low carb. I have no sign of diabetes, osteoporosis, cataracts. My skin and hair aren't too bad, I bruise but one of the meds I take is an anticoagulant so not surprising. I make no compromises on the dose I take - I take what I need to be pain free. Most of the pred problems can be avoided or mitigated when you know how and quality of life is the most important thing for me. I lost 5 years of my 50s to PMR - no more.
Professor Bhaskar Dasgupta:
Item 10 about Methotextrate.
healthunlocked.com/pmrgcauk...
I was part of an online meeting which included a report about the trial of leflunomide in the Netherlands. It will have been held up by Covid I imagine but a few months into recruiting the patient numbers showed about equal numbers of men and women. Which, as I pointed out, will yet again provide a skewed result. I was assured the ratio would come round to something nearer the reality - at least 2 times as many women as men.
It will be 7 years in March for me and I’ve never been below 10 mg (started at 40 mg). Whether it’s flares doing too much, reducing too fast, the “type” of PMR I have, poor absorption of prednisone or whatever I’ve given up trying to pin it down.
I’ll be 72 shortly and decided several months back that from now on it needs to be about quality of life. Particularly after losing more than a year of normal life to Covid-19! For years I’ve felt pressure to reduce from medical professionals, which I tried hard to ignore, but they always ended up getting to me. I’ve never rushed a reduction; in fact, I’ve only reduced in .5 mg steps for years, but I’ve never stuck to the DSNS plan. For years, the main symptom of reduction was fatigue, often debilitating beginning when I get below 16 mg or so.
I had a major flare last August that took me from 14 mg back to 17.5 to control. I decided that’s it, from now on I’m sticking to the DSNS plan with .5 mg drops and repeating steps when there’s even a hint of needing to slow down. Six months later I’m back to 14 mg without any significant fatigue. I console myself by saying, the issue is with prednisone absorption. If I only absorb 50%, then I’m actually down to 7 mg. Perhaps I’m fooling myself, but what the heck. If I start exhibiting major issues with fatigue as I drop further, that may be the reason.
My GP will not be happy if and when I get back to Canada. (My husband and I have been isolating in Panama since the outbreak began last March.) However, I’m hopeful he will understand. As for the loony rheumy I was seeing, I shall not return to visit her. She was one of those who truly believed PMR should resolve in 2 years. While I was attempting to convince her otherwise and gaining some ground, I haven’t got the time for that anymore.
Hi SQQQ—So sorry to hear of your struggle. I'm trying to recover from my first relapse after being on prednisone for CGA/PMR for 8 months (started at 60 mg and am now struggling at 13/14 mg) and have had Actemra presented to me as an option. Has your doctor suggested Actemra (tocilizumab)? If you have access to it—not sure where you live—,would you consider it at this point? Wishes for the best!
I will be 6yrs in July currently at 7.5mg, hips stiff in morning for about 30-40 mins , take paracetamol when very bad, which helps, so may be something else. Tel appt with Rheumatologist last week, she wants me to carry on decreasing dose at 0.5mg every 2 months, if I have another flare she wants to put me on Methotrexate, I am not keen to take another medication. Has anyone had good results with Methotrexate?
Thank you.
Noisy night breathing with prednisone?
Prednisone
Heartburn and prednisone 
