Stiffness in legs
Posted , 13 users are following.
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.
0 likes, 29 replies
MariGrace margaret89358
Posted
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
EileenH MariGrace
Posted
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.
EileenH margaret89358
Posted
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.
BettyE margaret89358
Posted
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!
margaret89358 BettyE
Posted
Anhaga margaret89358
Posted
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....
lbh Anhaga
Posted
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
Anhaga lbh
Posted
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!
margaret89358 Anhaga
Posted
Thank you Anhaga, I took your advice and took an extra 3mg this morning hence my late post to you. The stiffness has not completely gone but getting up and down from a chair was definitely much easier, I played green Bowls tonight and I could bend down a lot further, so your advice on upping my dose has worked. How long do I stay on this dose before I reduce the extra 3mg? If I reduce and the stiffness comes back it will mean I have to up the dose again.
My curly hair, sweating, bruising is s9nething a lot of us have to put up with, it is comforting knowing such a lot of caring PMR sufferers are going through the same.
Thank you very much for taking the time everyone to reply. 💐
lbh Anhaga
Posted
I shall do exactly that, thank you. One thing I'm learning from everyone is definitely do not rush - it could easily backfire. I've got one more dose of 12.5 on Thursday then I think I'll stick at 10mg for a couple of weeks at least, starting the next taper hopefully only when I feel the same as I did on 12.5mg.
Anhaga margaret89358
Posted
I don't feel I can really advise about how long you should stay at your dose, or how quickly and how big steps you should go back down again. It depends so much on how you are feeling. But if you felt better today, and the improvement continues for a few days I'd be tempted to stay there for a few days and then taper down slowly, because it appears you had gone past your current best lowest dose before and you don't want to do that again. It will be quite probable that you'll be able to taper further in a few weeks, if your symptoms remain well controlled. It really does depend so much on how you feel.
EileenH lbh
Posted
Tinapoly1 margaret89358
Posted
I have PMR and Fibromyalgia . The PMR pain was crippling to the point that I would have ended up in a wheel chair before I started on steroids. With my fibromyalgia I have a hard time when I have been sitting too long & try and get up with being so stiff & in so much pain but once I take about 4 steps the pain goes away. The same with my hands too when I hold something too long it is painful to let go but I open & close my hands and the pain goes away. Slow movement helps my fibromyalgia so much but I can not scrub things,only wipe softly,I can not use a squirt bottle past the 4th or 5th squirt since the pain gets so bad so I have to stop,open & close my hand resume.
BettyE margaret89358
Posted
I really sympathise with the hand pain. I've just fought my way into a new container of yogurt. My Prestige jar opener is a big help but the way some things are packaged I sometimes think I'll starve to death before opening them.
Re the hair... mine did return to its usual condition but I can't remember at what stage. I'll ask my sister to note when hers reverts to normal. She's on 11mgs. at the moment and diagnosed last December.