i was diagnosed 17moths ago. I have been reducing slowly I am on 8mg at the moment, I was told that my shoulder problems were Rotato cuff problem since then have been having physio which has helped. My problem is getting up,after sitting down I am very stiff mostly in my legs. Once I am up I am ok no pain. I am still doing my 6 mile walk every morning. This is also helping with my weight I have lost 20lbs since last September due to advice on this site cutting out most carbs only having a glass of wine at the weekend. My question is should I increase Pred or does anyone think it is something else? I really don’t want to have to go up to a high dose again but am open to others opinions.
Answering what someone else said on this site my hair has also gone curly and I can’t do anything with it. I wonder if it will ever go straight again.
Margaret, I my just back on my taper after a very brief flare when up to 16.5 from 6.5mg stabilized and back down to 6.5 in 2 - 5 mg steps. It takes what it takes to stay ahead of the inflammation. At 6.5 tapering to 6 using 52 Day DSNS. Still nursing a sprained piriformis, which is more painful than the PMR at this time.
Treating the piriformis with ibuprofen.
Good luck, stay active, positive and try to smile. ☺️
I am not sure what therapy are you applying to sprained piriformis, but for that area in general, because the muscles are so deep, I use tennis ball that I place under me while laying on the floor and apply pressure to a "trigger" spots to increase blood flow and reduce pain. Before doing anything,apply worm, wet towel to the area for 5min or so. Stretch afterwards.
warm,wet towel works better 
Margaret, I lost my hair after only 6 weeks of methatrexate. That ended Jan. of this year. Bad.
My hair has come back so thick, silver with red highlights, and so curley that it looks like I slept on rollers!
Have to say, this was the one and only good thing about my experience with methatrexate!!
Am hoping it stays, but it might not. I was wearing caps for the baldness and now my beautician is thinning my hair.
Have you asked your beautician about a product to help you manage your hair?
I am 70, on 10mg pred. Have been diagnosed with PMR for 17 months and am in a nasty flare. Hoping to not increase the pred. My blood tests showed the flare. That was a first.
Hope you feel better soon.
When other issues crop up, they do complicate this journey...a lot.
MariGrace
Hi Nick, I been going for a therapeutic massage, heating pad then a cold pack, CBD on my leg and foot. Read someplace that CBD might help with diabetic neuropathy. So I am giving it a try. Oh yes light walks. Tennis ball sounds like a good idea, I will give it a try. Thanks! ☺️
Thought for a moment you had found a new version of leeches...
Lots of people develop "different" hair - curly, difficult to manage - but I don't know I've heard of anyone having hair that goes straight!! Mine went quite straight with PMR - which I had for 5 years before starting pred - but then it slowly went curly although not in the same way. With one sort of steroid it went like a brillo pad - dry and frizzy! Once I was switched to another sort it has calmed down - provided it is cut properly. I've just had to change hairdresser as my last one had a mid-life crisis with my hair after 5 years of cutting it well. What I do find now is that the hair on the nape of my neck is frizzy - because it gets wet with sweating in the hot weather and is too short to attack with the straighteners. It is growing out slowly though.
Difficult to say what the stiffness is - it could be as a result of the 6 mile walk being a bit much OR you are on minimally too low a dose. Or a combination of the two. You probably don't need a high dose - just 1/2 or 1mg more may be plenty.
Blimey - I'm glad I dropped the mtx after 4 weeks! My hair was coming out in tufts while I was on it - and has taken the best part of 2 months to stop coming out so much. It is still thick - and silver, has been for over 25 years. So I hope when the new growth appears it'll be better.
Not exactly curly but certainly a bit more "lift". All flattened out now. My sister who was diagnosed last December said that her hairdresser said, " steroid hair," when she last had it cut.
Getting up after sitting.... I know all about that, too I wrote about it recently with the title " Which Pain is Which?" but I have not been inundated with answers!
Where do you get a therapeutic massage, it sounds wonderful?
Mine has always been provided either by a massage therapist (in Germany, worked as the local footy team physio) or by a physiotherapist here in Italy.
The stiffness upon rising from a seated position was my first obvious PMR symptom. I have used it as a bit of a yardstick ever since. If it builds up to the extent that I experience this stiffness all day long then I know pred is too low. On the other hand if I have waited for a few days to see if it will go away more often than not it does, and I suppose that means it was only either pred withdrawal or the result of more activity and just "normal" stiffness from pred/PMR-weakened muscles from that activity. On several occasions this stiffness has increased and I have returned to a slightly higher dose of pred. Except when I stupidly allowed a flare to develop last year I have never had to increase by more than 1 or .5 mg, and after a few weeks have usually found the next .5 mg taper has worked.
Looking at your experience, the 6 mile walk is something you are used to doing, I assume? If so then I doubt it is a factor. If the pain has been the same for a while, or perhaps seems a little worse (bad enough isn't it that you now think it's worth asking about?) then it is most likely you need to go up by just a tad before the inflammation builds up any more, and wait until the stiffness is closer to the way it was when you were more comfortable at a higher dose. It could take a few days, and if it keeps getting worse then hit the flare with a higher dose (like 5 mg) for three days or so, then drop back to a level just above where the stiffness started to increase. And hopefully by reducing slowly you mean using something like the dead slow nearly stop approach?
Again, on a personal note, I was keen as we all are to get my pred dose down asap, especially as I had some fairly significant although hidden side effects (blood sugar, optical pressure, possibly bone thinning) so I was willing to tolerate a certain level of this stiffness. But I always made sure that for at least part of the day, the time when pred would have been most flooding my system, I didn't experience it. As time has gone by and now down to 1.5 mg I have very little of this stiffness, but it still comes back with every taper....
I have tried several physiotherapists, but none seemed to offer therapeutic massage that I am aware of. The swimming pool I go to includes a leg and foot massage in their spa area, but because I still have dressings on my leg they want to wait until my leg has healed, however they are more beauticians but may be as good, I don’t know.
There is definitely a difference in how they are trained. I think they are far more aware of the benefits of therapeutic massage here. When I was looking for intramuscular stimulation in the UK I think I got the impression that their physios offered something useful. And I do know that sports physios will offer it - all forms of sports make great use of it these days. Especially manual mobilisation of trigger spots. Even on court!
Could you let me know how it was, my legs are fine once I get moving it is just gettting up from a chair or even off the toilet. I went up an extra 1mg today but am still feeling stiff after sitting down. Maybe I need to go to a physio to see what they think.
I was thinking about posting a question this evening but have just got the answers from reading your post 🙂
Namely, it is not unusual to experience a little stiffness with a taper but to be reassured by the fact that the stiffness is not present all day long. I've almost finished a dsns taper from 12.5 to 10 (a fast dsns taper I think although definitely not the abrupt drop that my rheumatologist wanted me to do - one day it's 12.5 but next day to 10 for a month). I was a little concerned about the return of some slight shoulder stiffness but your post has helped. Thanks
I do go to a sports clinic to see my osteopath. I have been told they don’t have very good physios there though. You would have thought they should be first class!
If you do have this shoulder stiffness it would be prudent to stay at your new dose without tapering to make sure it doesn't get any worse. Ideally you would want ti to fade somewhat as the days on the new dose go by. I've been waiting at 1.5 for three weeks. Tomorrow I'm going to try 1 mg. This is the stage where I flared last year so I'm going to be doing the "nearly stop" part of dsns this time!
Right here in Los Alamos, NM Ptolemy. We may be in the mountains, but we do have a few perks. Los Alamos is a very interesting little town. Think positive with a smile. ☺️