Pmr and reduction of symptoms)
Posted , 21 users are following.
this is probably the dumbest post ever, but I obsess over things, so here goes: some people with pmr are never pain free. I am one of those people, I got pmr in August, 2016, started pred late September 2016. I am never pain free. And I have lots of pred side effects, the common ones: increased blood pressure, blood sugar, weight gain, etc. on a good day I can walk 5000 steps but only in short spurts.
here is my question (my husband says I'm nuts): if I am never pain free, and never have been, how will I know when I am pmr free as I reduce on the pred? Right now I'm using dsns to get to 6 mg, I'm not any better than I was since I started pred. I've always had groin stiffness and leg muscle pain especially in the mornings.
So...let's say I manage to work my way down to 1 mg. pred...and I still have the same level of stiffness and soreness that I've had all along....I'm assuming I can't get off the pred because the pmr is still active, and I sure don't want a flare.
Please don't tell me to increase the pred right now...I've done that a couple times, all the way back up to 10 mg...no difference whatsoever, but remember, I'm not one of the ones who is pain free...I've never been pain free. Before I started on the initial dose of pred (20 mg) I was bedridden with pmr pain--had bad case.
i guess my question is: when and if the pmr burns itself out, shouldn't I expect to be eventually pain free before I can get off the pred altogether? (Yes, I understand that some people never do--but I'm just sitting here obsessing over life in general so thought I would turn to you all for thoughts). Thank you!
2 likes, 32 replies
lilian05079 Twopies
Posted
Hi Twopies
I have been off preds for almost a year. I suspect the pain you are experiencing is bone pain leftover from the preds and it's not PMR pain..This is what I had just before coming off pred completely. I had withdrawal symptoms for approx 2-3 weeks then a few weeks later i was hit with bone pain in every bone in my skeleton which was very painful and caused extreme stiffness. This took about 6 months to abate. You think it is never going to go but it does. I suspect some mistake the bone pain for PMR pain and go back on preds, but to find out it is a 'wait and watch' scenario to see if the pain abates...So if you are prepared to withstand the bone pain if that is what you have then come off the preds as you have planned if you feel confident. It's well known steroids affect your bones that is why we are prescribed Alendronic Acid and Accrete D3 to protect our bones and have dexa scans when on preds. My best wishes to you Twopies...
Twopies lilian05079
Posted
lilian05079 Twopies
Posted
Hi Twopies
I knew it was bone pain because all my bones were hurting!..this pain was nowhere near the initial pain i had when diagnosed with PMR..the PMR pain was a lot milder and was in my joints and muscles. The bone pain consisted of groin pain, hip pain, thigh pain, pain in all my leg bones, arm bones, sternum, ribs and shoulder bones, thoracic spine and in my feet it was all over. My pain continued all day 24/7 because i did not go back on pred even though my doc and rheumy suggested i did but i refused. I did use other pain management that helped, but gradually the pain abated. I knew it wasn't a PMR flare because the pain was different to PMR pain.....today i only have pain in my back and thighs due to degenerative discs in my lumber region diagnosed as osteoarthritis. ....apart from that i am doing ok....my best wishes to you Twopies and wish you success in coming off preds and beyond...
Michdonn Twopies
Posted
Twopies, we are all different, I could hardly walk, started on 20 mg, after about a month started tapering, was PMR pain free till my flare at 7 mg. Then had to go to 30 mg for relief for about 6 weeks. Started tapering again, now down to 11 tapering to 10, using DSNS, pain free. Presently skiing in NM, with a smile on my face. 🙂
Twopies Michdonn
Posted
Michdonn Twopies
Posted
Twopies, today skied the morning hours, started before normal start for customers. Taught novice skiers this afternoon, class of eight, had two other instructors shadowing me, helping and learning. Today was a 10 mg day on my taper from 11. PMR pain free, good active day, I could not do it without Pred. I do not like the side effects, but can lead a almost normal life and at 80 who ask for more than that! Thinking positive with a smile and a good diet. 🙂
Anhaga Twopies
Posted
Perhaps you've told us elsewhere but I don't remember. What dose of pred did you start at, what has been your highest dose? What else are you doing to improve your health and encourage your recovery, more specifically are you treating yourself kindly, as one with a serious ailment who needs a lot of rest and avoidance of stress?
I did experience complete remission of all pain, even non-PMR pain, on 15 mg of pred. Since about 9 mg I have had what I call "niggles" which is minor pain in all the classic PMR places. I continue the dead slow taper with careful attention to these niggles, never allowing them to increase. When, a few months ago, I experienced a significant increase I treated it as a flare and only now feel that I've got it under control again - but right now I'm tapering slowly to 3.5, whereas I had been as low as 1.5 mg mid 2017. So what I'm suggesting to you is that even if you are prepared to put up with some pain (I was because I figured I'd never be able to reduce otherwise) you must not allow that tolerable level to increase.
Twopies Anhaga
Posted
Ok, niggles. Love that word. Maybe I have niggles...whatever I have, it’s an indication the pmr is still active. Do you anticipate that as you reduce they will go away?
Anhaga Twopies
Posted
Generally speaking I'd say the niggles have eased, but I've been on pred 2 1/2 years so it's a long process.
EileenH Twopies
Posted
" a lower dose might be more appropriate for low weight women"
It all depends - because there is not only the weight consideration, which has never really been used in the same way it is for other medications, but also the activity of the underlying autoimmune cause. The higher that is, the more pred you MAY need. But that is also why we taper from the starting dose - to find the dose that is right for the individual patient.
A study in Italy some years ago found that 75% of patients with PMR responded acceptably to 12.5mg/day - but they gave it a month. Results were better in the smaller female patients and less good in the larger male ones. Doctors who are looking for a miracle response (like my 6 hour one) would have given up long before that - and so might the patients if they had any trouble with side effects in the meantime but no respite from their symptoms.
I think that is perceived as an essential - I got major relief so was willing to put up with things I wouldn't have otherwise. Now I know a lot more about that period I know that not all corticosteroids work for everyone - methylprednisolone did nothing for me (except cause side effects) and I now know (as of yesterday) that during the period I was on it my ESR rose to match the return of symptoms! It was still in "normal range" but it was very high for me.
But it certainly makes sense to me to give a patient only 15mg to start and raise it if there isn't a decent response rather than say "you didn't respond to 15mg, it can't be PMR". Unfortunately, the new guidelines say "the lowest effective dose in the range 12.5-25mg/day" - but don't actually say any more than that. And as we know - many doctors seem very blinkered about dealing with patients with PMR.
artfingers Twopies
Posted
I liked the idea of experimenting with the timing of a split dose and the amounts for each. That might hit it before it starts to develop, since it seems to go away some after your morning dose, right? Maybe see what works and what doesn't. Split dose has worked for me after some experimentation. I think, of course, all the stress doesn't help either. They say for teachers, don't even TRY to reduce till the summer vacation or till you retire. I haven't listened to that of course, since I do believe the DSNS will eventually get me there. Good luck Twopies!
carlene22578 artfingers
Posted
dan38655 Twopies
Posted
I started at 15mg/day and was prescribed to reduce 1mg/month, but got stuck for a year at around 5-6mg/day for just over a year due to symptoms (including fatigue) returning with a vengeance. So your difficulty with pain persisting at this time is consistent with my experience since I wasn't pain-free until nearly four years passed. I figured my pain was due to some level of under-medication relative to my needs, and I have always resisted trying to up-dose to the point of no pain symptoms at all.
I was able to begin running after two years, very slowly at first, barely more than a walk and with plenty of bursitis pain in my hip joints. But I did work through that and could run up to a few miles normally after another year of such effort, and have since rid myself of hip pains nearly altogether (I still run regularly). For the record, I am now 57 years old.
My shoulders are another story, I still need about 3mg/day for that after four years on pred! But I have very little pain now, just an occasional flare-up of shoulder symptoms that suggests that I add another half-mg to my daily dose. I have been down to 2mg or less for some months on end, but I am more comfortable and my symptoms are more stable at my current 3mg/day.
I am one who suffers no noticeable (by me) symptoms from the pred I've taken since starting at 15mg/day four years ago, and my adrenals should be regulating my cortisol well at my current dosage, so I have few worries about persisting with my current dosage for as long as it takes. I had a bad cold some weeks ago but my immune system wiped it out effectively in just 2-3 days before I resumed outdoor exercise in the cold. I wish that I could help others who are not finding prednisone so easy to deal with, but I have no answer to that.
charles37446 Twopies
Posted
Has as split does ever been proposed for you to help with your morning stiffness?
Twopies charles37446
Posted
Yes, thank you. It's exactly what I'm going to do tonight! I'm at 6.5 mg, going to 6 using dsns. In fact, I posted about the advantages of split dose advocated by my gp, but I need to play around with the percentages some more. Will keep you posted...
Joydeck Twopies
Posted
Splitting the dose gave me 24 hours relief instead of just 9. I'm currently on a 13/7 split and I have been reducing either the morning or evening dose depending on the timing of residual PMR symptoms. In the last few days I have been symptom free for the very first time, fingers crossed.