Heavy legs

Hi, have had pmr now for 18 months, down to 8 mg pred but have really heavy feeling in legs which makes walking and stairs/inclines difficult.......also having horrid frizzy breaking hair........not the best start to 2016......!! Anyone else feel this? Thx

[PMRpro Ambassador]

Are you sure your 8mg dose is still enough to manage the PMR? The concrete legs description is often used by people with PMR - and often a bit more pred sorts it out. That said - I'm down to 5mg but I sometimes find walking up hills a bit much. But then, I live in the mountains!

My hair did that when I was on Medrol, not been a problem with the other sorts of steroid I've been on. Try experimenting a bit with shampoos - I found that the Aussie Miracle Moist is the best for my hair although I have NEVER needed shampoo for dry hair in my life! And don't wash it too often. I know how you feel though - don't do clothes and make-up at all but my hair has to be "right" or I don't feel happy at all!

[Hidden in reply to PMRpro]

Thank you so much for your prompt reply! Maybe I am on too low a dose.......but desperate to get off the pred...... will see Dr not week and get bloods done. Sorry to be complaining. ........We could be a lot worse I know......I just find pmr is so misunderstood!

[PMRpro Ambassador in reply to Hidden]

I know you are desperate to get off the pred, everyone is, but if you try to force it you are most likely to just end up with a flare and maybe having to go back to the beginning again to get it under control - and sometimes it doesn't go as well the next time round.

A review article on PMR suggested that about 25% of patients get off pred in under 2 years - but they also then are at a higher risk of a relapse later, requiring going back to the beginning. About half of patients take 4 to 6 years to get off pred altogether and the rest need a low dose for much longer, a very few for life. That may be due to poor adrenal function though, no way of knowing.

The underlying cause of PMR is an autoimmune disorder where your immune system attacks the body by mistake - and as long as it is active you will need some pred to manage the symptoms. Remember, that is all it is doing, managing the symptoms to allow you a decent quality of life in the meantime. Nothing you can do will speed up the going into remission - unfortunately. If there was, believe me, none of us would be keeping it a secret!

[HeronNS]

Isn't it a bummer having, on top of everything else, unmanageable hair! A good friend of mine was very ill with a gut disease (don't think it was Crohn's but it was something like that) and had to go on some sort of regular infusion to treat it. She was actually hospitalized for several weeks and afterwards her hair was awful - scraggly, dry, thin. But as it started to grow in she wanted to let it all grow. At the same time she was really frustrated with the unhealthy bit, the longest part. With some trepidation I suggested to her that if she had her hair cut short she would not only be getting rid of the frustrating hair, it would also help her let go of the bad experience of, seriously, looking and feeling like death warmed over in a hospital. She did, in fact, have her hair cut short, and I note that several years later she has let it grow back to its wonted medium length and it is fine. How about shorter hair which you treat every couple of weeks with oil as a heavy duty moisturizer? Don't know your circumstances or if it will help, just a suggestion. ☀

[Hidden in reply to HeronNS]

Trip to the hairdressers then I think! Thanks very much for tips......much appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi May,

Sympathise with the legs - mine aren't as good as they used to be ! But then whose are! I've been on Pred for nearly 4 years so think the muscles aren't as they should, so I decided to try Pilates last year as I find it difficult to walk far - OA in knee and lower back. Found it very good, lots of leg exercises, but done on the floor so it builds up the muscles but doesn't put pressure on arthritic joints.

As for your hair - try Argon/Argan Oil ( used on dry hair) or Elvive have just brought out new product - Extraordinary Oil in various guises, - shampoo, conditioner, oil or cream. Have used the cream (free sample) and will definitely buy - can be used on wet and dry hair.

As PMRpro says don't wash too much, it dries the hair, and gets rid of natural oils. Central heating doesn't help either, nor all this wet, damp weather!

[Hidden in reply to DorsetLady]

Thank you so much for the very helpful comments.

[Rose54]

Hi May 2014

I agree with Dorset lady Argon oil ,Coconut Oil or Almond oil rubbed into dry hair

the longer you can leave it in the better

[HeronNS in reply to Rose54]

Yes. At least half an hour. Rub it in when you get up, then have your morning routine, breakfast, stretching exercises and so on before washing your hair. I've used argon oil, olive oil also good.

[SweetSue]

My hair went from being very fine & limp to the consistency of a steel wool pad & no regular shampoo or conditioner helped. A friend gave me some Argan Oil, which helped a lot. The bottle she gave me was sold by Avon. Someone else then gave me some Wen, a conditioner cleanser that can be bought online, and that helped more than anything else. I only cleanse my hair every few days with it, and use the Argan Oil before drying and styling--the only thing that's still allowing me to go out in public without my hair covered! lol

[joy-bells]

Have you discussed this with your Dr., it could be your veins and valves in your groins. I had heavy leags when I was in my forties ( now ) in my sixties.

I had an operation on my veins and faulty valves.

I t did the trick and haven't had any problems since. I must say heavy legs is not a nice feeling. I hope you get to the cause soon.

With your hair, make sure you are eating well -- protein, fats, fresh fruit and vegges, and my favourite Chia seeds.

I have had PMR for 18 months and am down to 3 mg of pred. One thing I was having margarine for a spread, but when I developed PMR, I had a craving for butter. So it's butter now for me. My hair is not dry, and I would get a good treatment. I am grey, argon oil is a brownish colour so wasn't right for the grey hair.

Also avoid all stress if possible.

All the best. Hope you find out what is causing the problems soon.

[Hidden]

Yes i have heavy legs, it is a horrible feeling, seems to come and go.