Return of pmr - or is it?
Posted , 11 users are following.
Dear all sufferers - It is now 8 years since first bring diagnosed with pmr. For the past year I have followed Eileen's way of slowly reducing, until 5 weeks ago, having by then reduced myself to just a half of 1 mg. I stopped completely. However, during the past week or so the pain has gradually returned to such a degree that I am now immobilised once more. I stared to take the steroids once more, beginning with just 2mg each morning, however it just does not seem to be working, any suggestions please, as to how I should handle this, should I increase further and to what dose? I am 79 years of age, and normally quite active, i.e. yoga, gardening baking etc.
0 likes, 23 replies
EileenH MrsMAC-_UK
Edited
Nice to see you again - but the reason isn't nice.
All too common - 1mg or even less is enough to keep it under wraps but stop and within a relatively short time the inflammation builds up enough to cause symptoms.
If it were me I'd try 10mg for a week and see if that works. Then drop to 5mg for a week and then try 2mg , then 1mg - it is perfectly safe to drop that fast in that time scale and it should get things cleared out. If the 10mg doesn't work it's back to the drawing board .
MrsMAC-_UK EileenH
Edited
Dear Eileen, I thank you for your 'so very prompt' reply, fortunately, I do have enough tablets to follow your suggestion. I am so glad you were there for me today, thank you again Mrs MAC-UK
BettyE MrsMAC-_UK
Posted
Welcome back doesn't seem right so just Hallo.
As Eileen says, PMR seems to be able to hang around ready to pounce even when we feel we are safe. I does seem ridiculous that, having been ok on a miniscule dose, it won't let us take that satisfying final step to zero.
When I saw the pharmacist at the hospital before my hip replacement I was down to 1mg. She said she could not emphasise enough how important it was that I kept taking that 1 mg. until I was completely recovered so I suppose the inevitable stress of surgery could have precipitated a PMR flare. ( I was fine ) I wish I'd asked but I just did as I was told.
The times we are all living in are enough to aggravate any weak spots. Do hope you will soon be comfortable again.
MrsMAC-_UK BettyE
Posted
Thank you BettyE , I have always felt so very grateful for the help I have received over the years from fellow sufferers like yourself. I do hope you are now feeling well again, and yes these are worrying times. Let us hope that things will be back to normal before too long. Thank you again, and good luck for the future. Mrs MAC-UK
Michdonn MrsMAC-_UK
Edited
Hi MrsMac, I also have followed the DSNS method of tapering starting at 30 mg, no at 0.5 tapering to zero. I active each day and so far PMR pain free. I have had numerous flares on the way down and hit them hard and fast. If I had a flare at this point I would follow EileenH advise. Good luck get that inflammation under control, just think of it as another bump in the PMR journey, good luck from a guy who has had a very bumpy journey. 🙂
Twopies Michdonn
Posted
how many times have you bumped up, mr, very bumpy journey? an estimate of how often would you say youve dine that with success. thanks.
MrsMAC-_UK Michdonn
Posted
Hi Michdonn, thank you for your message, it is much appreciated Mrs MAC
Reeceregan MrsMAC-_UK
Edited
Hi all,
The same thing happened to me only once the pain started coming back it was rheumotoid arthritis not PMR. My rheumatologist said he sees it quite a lot, that over the course of treatment everything is masked and working well on pred, but underlying diseases then pop up later. I am now on medication for RA but now and then have a flare, and when that happens, and under drs instructions, I do exactly what Eileen suggested, have a month on pred, stating at 10 for one week, then 7.5, 5 and 2.5. It gets me back to normal, chugging away on the other medication which is to control the RA, and the pred handles the flares. Good luck, hope that works for you also.
MrsMAC-_UK Reeceregan
Posted
Hi Reeceregan, thank you for providing that detail of your experience, it all helps to hopefully arrive at a pain free life. Thanks again Mrs MAC
Anhaga MrsMAC-_UK
Edited
I'm in a similar position, actually tapering v e r y slowly from .5 mg to zero. But I have to say the pain I feel is definitely in my joints, not in my muscles. When I first had PMR, but before diagnosis, I assumed it was osteoarthritis getting worse and couldn't figure out why the pain seemed to be in my muscles, not my joints. I do have significant discomfort, but I do not have any of the disability PMR caused, you know, not being able to stand up, not being able to get out of bed, that sort of thing. I think I'm suffering because of the covid lockdown. I go for one walk a day, usually quite a long one, and then I hardly move for the rest of the day, which is stupid and I do know better!
Is it possible this is what is happening to you? Just a thought.
On the other hand there are a remarkable number of people who seem to need that last mg or .5 mg. indefinitely. I hope I'm not one of them, but we'll see.
Hope you get things under control asap.
Stay safe.
MrsMAC-_UK Anhaga
Posted
Hi Anhaga, Thank you also for you message, I agree we are both trying to get to zero with the tablets. I have not been for a walk since the beginning of lockdown and I do miss that. I do try to excersize, usually by doing some yoga. I am very stiff when getting out of bed, or a chair, with muscle pains in arms, shoulders, buttocks and legs. I feel that after 8 years that I am going to be on preds for life. I just hope that by getting back on them again I will be getting back a better quality of life. Mrs MAC
Reeceregan Anhaga
Posted
Hi Anhaga,
This was me after coming off years of pred for PMR. Pain is now in the joints, as opposed to the muscles in PMR, and it is different pain and not as debilitating ...yet. And when I have a PMR flare its different pain. Short pred course mops it up but doesnt deal with the OTHER pain. For me that's definitly RA now, established by ultrasounds of my writs and hands which shows bone erosion, so the other joints with more pain I assume have more damage. Just be aware it could now be something else other than PMR so getting more tests may be worthwhile. Take care. xx
Anhaga Reeceregan
Posted
I suppose if I can ever again have an appointment with my doctor it will be worth discussing with her. Right now no appointments, no tests, only emergencies will be dealt with, although phone appointments and prescription renewals are possible. If I get to choose between RA and OA of course I'll select OA! I felt a lot better on my walk this morning, but my knees are still painful. It may be because my sneakers are so worn out I'm not getting proper support any more, and no way of getting new ones until this covid crisis is over.
EileenH Anhaga
Edited
Yes - a bit silly here: the supermarket is open but couldn't sell stationery, still no toys or electrical good or shoes. And at one point I noticed laundry racks were taped off too! Covid-19 doesn't stop breakages or shoes wearing out ...
Twopies Anhaga
Edited
interesting that you mention shoes--this is off topic, i know, but a few years ago--pre-pmr--when i was walking a lot i attended a clinic for seniors put on by a well known local running/walking specialty store. they said that you need to get new shoes every 6 months because even though they dont look worn, they are. the inner cushioning, not visible, wears down, causing a myriad of problems. i now replace mine a lot more often than i did, i think it makes a difference. my physical therapist said the same thing--replace every 6 months. im more once a year girl, and walking very little with pmr (although i try!)
Michdonn Anhaga
Posted
Anhaga, is it possible to buy the same sneaker, style, model and size online? Just a thought. 🙂
Reeceregan Anhaga
Edited
Definitely go for OA, I did. Thought he was being ridiculous even suggesting RA, my hand, wrists, elbows, ankles...none of those were painful, just hips, neck, knees, back. When methotrexate was mentioned I refused and asked for more proof as my blood tests showed no inflammation or RA markers. He suggested it was seronegative RA but the ultrasound convinced me. Unfortunately for me the MTX isn't working so next week he wants to add Humira to the cocktail. I'd rather scotch. Here in Aus we also have the tele appointments but can also have face to face if the dr thinks its necessary. Our free flu shots will be done on Monday in his "drive through clinic" in the car park....drive up, put out your arm, drive off. Kind of looking forward to it.....will be the first time I've left home since the beginning of March. Even though our lockdowns aren't quite as severe here, for us high risk we go no where and see no one for our own good. And everyone elses.
Anhaga Michdonn
Posted
If only! Companies are notorious for slightly modifying every new model so what works perfectly suddenly doesn't. The only time I bought shoes on line, at considerable trouble btw as the company doesn't actually ship from UK to Canada, I thought I was getting exactly the same shoes, in different colours, as ones I'd bought from a local store which then discontinued selling the brand (FitFlops). I got my cousin to mail me two pairs, exactly same in pictures and description. Turned out they killed my feet. Couldn't return. Fortunately a friend was happy to take them off my hands. I have very difficult feet at the best of times. I then got "old stock" by mail from a store in Quebec, and they were indeed wearable, but they, too had been changed and didn't offer the same support as the original ones so I could wear them indoors, at work for example, as a change from ugly running shoes, but they weren't suitable for a proper walk.
Since I started pred I've been very good about going for a long walk or a couple of shorter ones nearly every day, and had been buying two pairs of shoes every time, so they would last about a year. I intended to get new ones before Christmas, but the day I set out to do that, passing store while returning home from a trip to the physiotherapist, I did some impulse Christmas shopping first and thought I'd better wait to spend money on shoes for another month! Big mistake. First of all I had one physio visit since Christmas and the weather so bad I wasn't stopping anywhere on my way back, and then covid came along....
Btw I'm currently tapering to zero. I'm doing each step of the DSNS taper twice, so it's really slow, but it seems to be going okay so far. Unfortunately because of covid restrictions I only go out once a day so I tend to have one long walk early in the day, then don't move enough for the rest of the day, which isn't good. Must improve! Yesterday the weather was so gorgeous in the early evening I really wanted to go out for a short walk like in normal times. It's harder living in the condo because I can't just step out my back door into a garden and I'm missing that more this spring than I did last year when we had more freedom to come and go.
You can tell from the length of this reply that I don't have enough social interaction! Sorry.
Stay safe.
Anhaga Reeceregan
Edited
Of course! You are just entering flu season in your hemisphere. Well, let's hope it's a mild one and the vaccine is a good match. Funny what can give us pleasure these days. My husband ran out of breakfast cereal (I don't eat it since going low carb with pred) so I suggested he buy some at the drugstore around the corner where they have a little food section. Of course he procrastinated. So I went in the next day and got him some. Not another soul in the store, the cashier was behind a plastic shield. Nevertheless I felt I'd had a real adventure when I came out with my purchase, first time I'd been inside a shop for a couple of weeks.
Anhaga Twopies
Edited
I think you're right. I usually buy two identical pairs and they last me a year, so six months worth of walking each. The ones I have now, the bottom layer of rubber is wearing well away, the older pair I had kept look pristine by comparison. But although they feel very comfortable I think the interior support is all rotten. This morning at the start of my walk I was approaching an intersection and the walk signal was on. Normally I could sprint down and catch the light. It's one of those annoying crosswalks where if you miss the light it's two minutes before it cycles through again, and only if you remember to press the button. However I got a stabbing pain in my right knee which nearly buckled beneath me. So I hobbled to the crosswalk and waited. I did manage a long walk but I was slower than usual; must start doing knee exercises again. Sigh.
What old women told me when I was merely middle aged, that old age is not for the faint hearted, is certainly true. But it beats the alternative. 😉