PMR & prednisone, a love/hate relationship
Posted , 12 users are following.
I've been dealing with PMR for the past 3 yrs on a decending dose of prednisone (from 20mg to 10mg to 1.5mg currently). I'm in the throes of a major flare & will no doubt have to increase the dosage. My MD recommended 10 mg but I suggested starting at 5 & see where that takes me first. He's ok with that. I suspect that wherever I end up will be where I'll have to stay for a very long time. I suspect my adrenals are already compromised. I've consulted a nutritionist to see what I can do nutritionally about helping the adrenals heal but I'm not terribly encouraged right now. I'd like some feedback regarding diet, etc. in bringing the adrenals back on line & doing their job! Thanks much & good luck to all of you out there!
0 likes, 23 replies
Charko kerry50362
Posted
Hey Kerry: Just to say that I have been dealing with PMR for 4 years now. I am 73 years old and lead a hiking group in Laguna Beach, CA, where I live. I am down to 1 mg and still hurt on my shoulders and neck. I get a weekly massage which helps and I do not want to go back up on Pred because of diabetes and my and I am close to the line. My Rheum says I can self-medicate up to 5 mgs but I keep low because I like to take 2 Ibuprofen three times a week for my hikes (3-5 miles per hike up hill and down dale). The worst thing is my tiredness and I know my adrenals are shot so I take mega doses of B12 (5000 mgs per day) but it really doesn't help much. I WANT A NEW BODY! I have tried all the diets, accupuncture, quit my wine, hypnosis etc but I am just a type A stress monkey and am v involved in my community. Hey Ho mideario, have a lot of courage and some spunk and you will soldier on like the rest of us.... Let me know if you come upon a miracle cure! Meanwhile keep it low and have your Glucose Blood sugar checked once in a while. BTW I am not overweight
kerry50362 Charko
Posted
Hi Charko! Thanks much for the input. I took 5 mg this a.m. & am already feeling better. I think that, coupled with some pain meds may work for me until I can begin reducing again. I just have to be patient with this blasted "self-limiting condition!" I too have concerns re: all the "joys" of prolongued pred use. I'm just determined to continue riding my bike & walk, walk, walk!!! And hopefully, get back to yoga when the hip & knee pain subsides. Thanks again, for the contact. It's just nice knowing I'm not alone with this thing!
Charko kerry50362
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Hi Kerry! You sound bonski this evening or is it this morning... don't know where you live. Like me you are determined to live with PMR as best you can until the fat lady sings... I am going back to Yoga next week, it has been hard for me to do that but the deep breathing is very beneficial. Have been looking after active grandsons and other busy activities so finding the time to just devote time to myself is hard.... but I must and so must you! And off I go to do my exercises...
How are you nights?
kerry50362 Charko
Posted
Hi Charko! I too am going to get back to yoga, aches and all, soon. I have a new grandbaby I intend to romp with down the road. Nights aren't fun but I'm used to it - and the pred contributes to being awake into the wee hours. Oh well...
iellen32 kerry50362
Posted
I am not sure if a diet will make the adrenal glands to do their job.
I have GCA.
I experienced flare ups last year and is taking me until now to get on 24 mg of Pred.
From this point on I will start tempering - with a different Rheumy though.
I wish you will get the Pred level where you feel comfortable regarding your symptoms.
kerry50362 iellen32
Posted
Hi iellen32! So sorry to hear you are dealing with GCA - that is not fun at all. I agree, diet may not help but it certainly can't hurt. Anything to plump up shriveled adrenals! Wishing you all the best in your quest for a return to good health! Please let me know how you are doing!
Anhaga kerry50362
Posted
Well, the problem with diet for adrenals is that if you do a quick internet search no really science based sites come up. I think the best thing you can do is whatever helps fatigue generally, things like good protein and vitamin rich plant foods. Although I'm a bit of a tea addict I believe it's supposed to be a good idea to keep caffeine intake to a minimum. People who are not on prednisone can consider licorice, but it's contraindicated for people on pred, and because of a family history of haemorrhagic stroke I personally won't take licorice anyway.
kerry50362 Anhaga
Posted
Hi Anhaga & thank you for your take on diet to aid adrenal health. I agree, it's a long shot but I'm attacking this thing from a variety of directions - low dose pred, pain meds, diet, exercise, etc. There's a bike event I want to ride in - just for fun - but this dang thing is getting in my way! I will prevail tho!
amkoffee kerry50362
Posted
I don't know what kind of pain meds you plan on taking, I'm guessing something OTC. I am on strong prescription pain pills that I take for chronic back pain and even if didn't touch the pain of PMR. For some reason PMR pain is resistant to pain meds.
So I wouldn't count on them to much.
kerry50362 amkoffee
Posted
Yes, sadly I've discovered the same thing but the Rx I'm on takes the edge off somewhat. Or maybe it's just my imagination!
EileenH kerry50362
Posted
Diet won't help reluctant adrenal glands wake up - whatever you read on tinterwebs and whatever nutritionists say. They have an agenda - to make money out of the gullible with supplements etc.
It isn't entirely the adrenal glands anyway - they are managed by a very complex feedback set-up involving the entire hypothalamus/adrenal/pituitary axis and the hormones etc that do the job just have to settle down again to the right balance.
I've been down to 3.5mg - and back to 15mg because of a flare in February. I'm back to just under 10mg. I don't mind - on the right dose of pred I feel well and able to do almost all of what I want. Without I can't - and I haveno desire to go back to the 5 years of PMR with no pred I had to start with. I lost a lot of my 50s to PMR. I've no intention of losing my 60s too.
joey_12298 kerry50362
Posted
Since we are discussing Adrenal Glands......I just read the following this morning about recycling plastics & it shocked me since I use one of those double walled #7 cups every day to keep my water cold almost all day...... The #7 category (found on underside of plastic cups, etc) is a catch-all for Polycarbonate (PC) and "other" plastics. Know that the reuse and recycling protocols are not standardized in this group. The primary concerns with #7 plastics is the potential for chemical leaching into food & drink products packaged in polycarbonate containers made with using BPA (Bisphenol A). BPA is an Xenoestrogen, A KNOWN ENDOCRINE DISRUPTOR! The Mayo Clinic notes that the Endocrine System is made up of the pituitary gland, thyroid gland, parathyroid glands, adrenal glands, pancreas, ovaries (in females) and testicles (in males). Just posting this so we can at least eliminate one possible problem for us PMR patients when we are trying to reduce down from Prednisone..
kerry50362 joey_12298
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I just checked all the water bottles I carry on my bike! They are #4s. Now to check the double walled plastic water "glasses" we have... Thanks for this info.
Anhaga joey_12298
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I don't know what happened to a post I composed saying that according to a list I have from a reputable environmental organization, the safe plastics are #s 2, 4 and 5. They can be reused, none of the others should be reused, including those bottled water containers which are usually #1. The list is a few years old so probably worth checking. Shocking that #7 would be used for a container meant to be reused many times.
judy93591 kerry50362
Posted
I am adding my two cents! All of you that can walk, bike, care for grandkids, consider yourselves very lucky. PMR- 16 months, GCA diognosed in Jan, 2016. BUT, I now have broken pelvis, and multiple fractures! Also, rectovaginal fistula, which also requires surgical repair I already needed spinal and disc repairs, which are on hold, until these other issues resolved. There were other issues in between all this! I am down to 5 mg pred, and doing great on that part. Also had cataracts removed, and stents inserted to keep pressure down. I can now go without glasses! BUT, I AM RESTRICTED TO OFF MY FEET, except for necessity! So, be ever thankful you can walk, unassisted. I was a 5 mile a day, line dancing 2 days, to this. Also, 15 #weight gain. Have lost appetite, but no loss! Trying to keep chin up, it's hard! Had to give up my TOPS officers job-volunteer, but I love all my friends there. TOPS is a weight loss club in the USA. not sure about elsewhere. It's Take Off Pounds Sensibly! I gained so much help from this forum! Thank you all for sharing!
amkoffee judy93591
Posted
I feel so bad for you. That is a lot of broken bones. But I wanted to talk with you about TOP. I was a member for about six years. I served as Secretary and leader. I served each position for two years. I also did a bunch of other small things but basically was very active in my group. We went to SRD every year. It was a great time. But I had to quit. I did so, for a lot of reasons but I haven't looked back. Take care of your self. Very gentle hugs.
Charko judy93591
Posted
I too am so sorry to hear of your plight... but like you I avidly read this forum and even if I rarely reply it is great to be onboard and part of a group of other 'sufferers' like me who understand. Reading other peoples experiences, ideas, questions and answers, makes me feel a lot better and makes me know I am not alone. Thank you all for being there and continue to fight the good fight. ?Has anyone had Cortisone shots in their neck and shoulders for the pain?
Has anyone had Cortisone shots in their neck and shoulders for the pain?
EileenH Charko
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judy93591 amkoffee
Posted
Thank you for reply. I also have been coleader, leader, now weight recorder. I have approx 50 members each week, but about 70 on our role. It's quite a job. The past weight recorder and I use same PC program, so she taught me. She has taken over for me now, until I can get back. I hated to have to take off, but I really had no other choice I miss all my members, and they are genuinely supportive and caring. That office really got me through the winter. Where do you live? I live in Mid MI, NE of Flint. Our village, 1 mile from our home is Otter Lake. We have 10 acres, mow about half, and have a big pond in front. House up on a hill, and sandy soil. But no yard work for mr for last two summers. I have a wonderful caring hubby, who is worried to death (me too) I just pray to get back yo walking, and pain free. Please stay in touch. It helps to know there are others, and we're not alone, or crazy! I just turned 'a young' 75???? Sometimes I wonder! 😏
amkoffee judy93591
Posted
Our group was down to about 30 people total with about 20 showing to each meeting. We used to be one of the biggest groups in Kansas with over a hundred members. But that was before I joined. But even as I have been a member our group has declined in membership significantly. It is a shame but people join and other people quit and I really don't know why but it seems that our group has lost it excitement and joy of being a group. Frankly one of the reasons I quit was because I was tired of doing so many things without any recognition. In fact as I was preparing to leave I was telling my leader everything I was doing and she was surprised at how much I was doing for the group. The other reason I left was because I had lost the will to diet or to change my way of eating. I have been maintaining my weight for about 2 years but losing weight had become something that I just wasn't ready to do anymore. So I felt I was simply spinning my wheels. It was a hard decision because I liked the women in my group but it was a decision that I haven't regretted making.
kerry50362 judy93591
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Charko EileenH
Posted
EileenH Charko
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They weren't the sort that are used into/for joints, they were working on spasmed muscles. My entire back was as hard as floorboards due to myofascial pain syndrome and the local pain clinic worked on them for several months at intervals of 2 weeks initially and that spread to about 3 or 4 weekly later. They also used manual mobilisation on the trigger points and after about 6 months I was pretty well OK but it returned a few months later. The pain specialist couldn't understand why it kept returning - but just before she left to go to another job she did a final "all over" session which worked again. But a month or two later I had an upper wisdom tooth removed that was coming in at an angle and so just kept erupting (there has to be a tooth opposite to stop them just growing and growing). Since then I have almost no problems at all - the tooth was affecting my bite and that puts stress on the back muscles. Just this last week I have had a sore muscle to one side of my mid-back - don't know why but I have obviously done something to trigger it, carried something too heavy probably. But that was a gap of over 3 years with no problems at all.
The trick is to work on all the things together, not just one area, and preferably to identify what it is that is causing the back muscles to go into spasm. Often, once the muscles are got out of the spasm they will slowly improve, going longer and longer between treatments - and Before mine became really bad I found that Pilates and yoga helped a lot. Strengthening those core muscles is important.