Prednisone and coloring hair?

Judy, I've looked up so many sites re PMR simply to familiarise myself with it all and I've seen on loads of American pmr sites that the correct way to treat pmr is NOT the way your so called rheumatologist is advocating. No wonder you are scared. 2.5 is way above the recommended 10% especially now you have reached the 10mg mark and as for reducing every 3 weeks, that's not really giving each dose long enough to really work.

is there not a primary care dr you can see? A different rheumatologist? In England unless you are atypical then you don't have to be treated by a rheumatologist anyway. Please stay strong. Regards, tina

Judy, the rheumy you have got does not seem to know much about PMR. I wonder how many other people they are making these mad suggestions to. Can you ignore them? 

Time to find another rheumy who will work with you. If you continue to reduce at 2.5mg every 3 weeks you will be back to square 1 very soon. How about reminding her who is paying her bill?

Hi again, and thanks for so many kind suggestions. The Rheumy I had found after my PCP diognosed, SAYS she treats all her patients this way. I believe my PCP would be much more agreeable to the slow reduction, and I am going to adjust my dosage tomorrow,mind make an appt with PC Dr. He was so concerned and did much research before diognose. He even called me at home to check on me!  The Rheumy has been condescending and sharp, like I was ignorant, if I suggested anything I read. I also, have done a lot of searching and reading. I was so happy to find this forum, and know I am NOT ALONE, OR FREAKY. as has been stated so many people think all is fine, as I put on MY HAPPY FACE (very fat and round right now, I might add)   Will send updates. Thanks again, so much, Judy 

Hi Tina, I am sure you will read post Eileen. Do you by any chance recall any  PMR sites in US or what you used for the search option?  Thanks

Sorry Judy that you are suffering so much! You must find a doctor who will work with you on the prednisone. Tapering so fast is a disaster! Best wishes on finding a new doctor.

She may treat all her patients with PMR that way - I bet a lot of them go away and find someone else so, of course, she may think it works. Or that it leaves her to concentrate on patients who are "really ill with RA". Or I could be very cynical and wonder whether patients who are in with a chance of being treated with the vastly expensive biological drugs provide her with a better income than someone who just wants a bit of cheap as chips pred.

I was slapped down on another forum recently by someone who is a retired GP who basically suggested what is on the forums is not as reliable as her opinions since SHE "is a GP and the others aren't" (she hadn't actually expresed any). Apparently our own experiences are of no value. I really did think that this attitude of "don't worry your little head, Dr knows best so you're not to question me" was fading. Not all that is on the internet is reliable - that is fair enough but what I write about is either from charity sites which are allied with top rheumatology experts, the same medical documentation they could use if they could be bothered and the personal experiences of hundreds of patients who have visited the forums in the last 6 years (and more, because I have read every post since this forum began).

The Mayo clinic, Harvard education and Johns Hopkins have excellent resources - and if I remember rightly they don't suggest such a precipitate reduction plan. UK texts certainly don't.

Eileen, you are SO right about Rheumy PREFERRING 'patients worse than PMR'. I am happy you folks who commented just gave me the little push I needed to leave her. I have printed some Clinical info on slow reduction, and had the ones from here, and will take to my GP. HE very receptive, and searches. I feel in beginning, he wasn't aware of best course of treatment. I have been with him since he was a 'newbie', LOL, my hubby and I like to tease him, that we raised him to be a HUMAN DR., and he IS!  I am pretty sure he will trust my judgement, when I talk to him. It was my pain management Dr that had suggested a Rheumy , after I was into the PMR about 3 mos.  in reality, Rheumy has done nada, but confirm DX and renew script!  thanks for this time, judy

My very slow "Dead slow and nearly stop" reduction plan is being used in a clinical study in the north of England which is looking at how slow reduction and exercise (in the form of walking, nothing more exciting!) can help in the management of PMR. There have never been any such studies about the best way to use pred to avoid flares and get patients to the lowest possible doses which really does seem a bit daft to me. Of course, there is no money in it for Big Pharma and the funding has to come from somewhere.

If you reduce pred too fast, in too big steps, you induce either steroid withdrawal pain or a flare - the knee jerk answer to both is to go back to the previous dose, which is probably higher than you really need. Do it slowly and you will get to the same end without so much return of pain and stiffness. Because steroid withdrawal usually mimics the return of the illness - how can you tell unless you try to minimise the steroid withdrawal discomfort as much as possible? From what we're seen on the forums it does seem to help.

Funny how the prednisone can cause "side effects" that come and go!

when my hair was dry, brittle and thinning I purchased every conditioner I could find, but my hair was like "Barbie" hair, impervious to anything.

wonder how long my hair will stay healthy!

So am I, Eileen. In and out of the hairdresser's in 30 minutes......cut and dried...literally!

Usually takes a bit longer for me unfortunately - she is determined to blow dry so it looks like she envisages when I leave! I've told her repeatedly it isn't worth it as by the time i'm home on a damp or windy day it will be doing its own thing... But just thinking about the time taken to have your hair coloured makes me feel weak at the knees.

Unlike many, I don't like going to the hairdresser but just go so my hair gets cut.  I wash the styling out the next day. I'd rather go to the dentist! As for colouring, I feel I can use the time more usefully. Each to his own.

 

No, I leave her styling as it is so well cut it works OK. I can go well over 2 weeks, sometimes 3, without washing it and it has definitely improved it not washing so frequently. But then, I live halfway up a mountain with lovely clean air and a long way from the sea - I can tell the difference when we are over in the UK.

Yes, on balance I think I'd rather go to the dentist! I don't understand the LIKING going to the hairdresser either 

I'm happy with the cut ....it is only the styling I don't like. I wonder if I should wash it less. It's so fine and has been thinner for a long time but even more so recently. The effect of the steroids!

Mine just drops out so washing it out would just be a pain. They were horrified here at the idea of washing your hair as often as is common in the UK - unless you did lots of sport. It took a while for it to settle down - but it was wonderful when we were in China! Didn't need to wash it at all!

Is your hair curly or wavy? Mine is fairly straight and would be flat if I left it. It looks better when I wash it.

Yes! It was curly when I was younger, then it just had some "swing" and then with PMR it went straight! Where before I just needed a really good cut and I could just wash'n'go it became unmanageable - and then with pred it was even worse! With Medrol it became frizzy and stopped growing and then when I was switched to Lodotra, a form of prednisone, 3 years ago the new growth was curly again! Now that new growth is almost shoulder length it is smooth again, bit of frizz in the underneath layers but not curly the way it is cut now. I quite like how it is at the moment.

That explains being able to wash it less. I looked at mine this morning and reckoned a passing farmer could use me for a scarecrow!😳😳 I'll continue with the daily wash. Mine had been shoulder length but when I had it cut recently I decided on a short bob to give it some body. At least it is still on my head and not thinning too much. I feel fortunate when I hear of how others are faring with PMR and the side effects of the steroids. I also have a new GP who has just left me to it and signs the repeat prescription request. So far so good.

I find the shampoo makes a LOT of difference. The Aussie moisture one is particularly good - you can get away without conditioner if youare lucky and that makes a big difference too - I find it sort of claggs your hair up, whatever sort it is,

It also took some time to get to being able to leave it longer between washes. 

Thank you, Eileen. I think I know the one you mean. It's almost hat and scarf weather so I could hide my hair under a hat.⛄️ I could be like the queen and keep my hat on at all times. 👑 I could change it for a nightcap.....not the alcoholic variety......then if I'm whisked off somewhere in the night(heaven forbid)my hair will be covered.🎅