Should I taper or wait a while

[lesley2015]

Hi All

A question please, I have been tapering and now on 9.5mg preds and just started introducing 9mgs. (dead slow method).

However, today I decided to treat myself to a hair dye/cut (I usually colour it myself, but lifting my arms is tiring and thought I deserved pampering).

So of to the hair salon, all was well until the dye was washed off, firstly, the apprentice was rubbing my temples, she commented I kept moving away, and oh my, it really hurt, really painful, I had no idea my temples were so tender.

I also had my head back over the basin, really caused my neck and shoulders to ache.

So I thought I was doing well, but if my temples are that tender does that mean that the GCA is rumbling about and I should stay on current dose for a while?

The whole session was absolutely exhausting, I needed to rest all afternoon. But on the positive, my hair looks nice!

[PMRpro Ambassador]

Back washes aren't good for us! They can disturb the blood flow to the head if you are in the wrong position and that could have been the cause of the problems you had.

If you are that uncomfortable I'd hang around for a while and see what happens. If it doesn't settle - check with your doctor.

Personally I can't understand how going to the hairdresser is pampering!!! But then, I'm strange like that!

[lesley2015 in reply to PMRpro]

I generally hate to sit down for that long, lots of other things I would rather be doing, so I usually have a quick cut and do the rest myself!

Ok, so it could be the tipping back, thank you, I will have to see how long it takes to settle or as you say I will speak with GP.

Thanks as always for your advice.

[alice1940 in reply to lesley2015]

I am tapering slowly too and was at the hairdressers last week and found that while she was blow drying my hair it was very uncomfortable and felt too hot she had to turn it down l normally just wash my hair and let it dry naturally so maybe l will just go and get it cut then do the rest myself also l have naturally wavy hair but now it's very curly instead keep well Alice x

[lesley2015 in reply to alice1940]

Thanks Alice - it seems to have really taken its toll on me so I may go back like you, to a dry cut and do the rest myself 😟 Take care

[DorsetLady PMRGCAuk volunteer]

Hi,

could just be coincidence, hairdressers chairs are not the most comfortable I find - whether washing or styling! Sometimes when washing and rinsing particularly after colouring, can be a bit too vigorous. Plus you're sitting around longer than usual.

Just put your reduction on hold for a little while, and see if things settle, then you can carry on.

Unlike, PMRpro I like a bit of pampering as well!

[PMRpro Ambassador in reply to DorsetLady]

I like pampering - it is going to the hairdresser I detest, it is more like a torture for me!

[lesley2015 in reply to PMRpro]

Totally ageee - hate spending time at hairdresser!

[lesley2015]

Thanks elizcarroll

I already have GCA so the pain is unfortunately familiar - so will not put myself through the hairdressers again - unless they can do my head over the basin rather than leaning back. Such a pain in the neck - joke! Well almost anyway.

[bert403]

I have been on pred for a little over 2 yrs for GCA..finally down to 3mg from 60mg. I have been going to hairdresser every 6 weeks for years. get roots colored..then following 6 weeks highlights & lowlights. Since GCA I have my girl do the whole process instead of a shampoo girl wash it all out...just need to be gentle and never had a problem...even thru the hair loss issue, which I am now past that. (thank god). I feel when we go thru this illness, when we look good, we feel better. Just saying.

[lesley2015 in reply to bert403]

I will speak with my hairdresser and see what she can suggest, it looks similar to how I do it, but cannot put up with it making me poorly. Glad you experience is good at your Hairdressers.

[tgca in reply to bert403]

I was interested to read about your hair loss. I began to lose hair only at around 12mg pred... not in the beginning (30mg) and it seems to have stopped at my current 10 mg. I had no idea this coul happen. Is it usual?

[lesley2015 in reply to tgca]

I believe it is, Mine started a few months after being on preds and seems to have stopped now (18months into it), and I have lots of new hair growth which makes my hair have a mind of its own!

[tgca in reply to lesley2015]

I'm living with this new awful 'haystack' ... my hairdresser couldn't believe how much was coming out and was amazed and relieved when it stopped (so was I). Now it's all strange lengths but I am not really up for a skinhead style!

[bert403 in reply to tgca]

I started to lose my hair at around 15mg, which I stayed on for about 3 months because my CRP was elevated. I lost quite a bit and texture was awful..My hair stopped falling out also at 10 mg. During that time I was wearing a wig (I did not have bald spots) just thinning and unmanageable or wore ball cap at times. I started to take Biotin and Folic Acid. I am happy to tell you that my hair is looking great. Much thicker and healthier looking. I don't know if the Biotin really works or just the fact I a down to 3mg and the Adrenals I guess started to work. Whatever it is, I am so glad that the worst of this hair issue is over. So think positive, it will grow back and for me it was fairly quick. I also use some pricey hair products which I do believe has helped a lot. So, in answer to your question, I do think it is pretty common. Have Patience!!

[Ida-June128]

I too find the hairdressers challenging, mainly for the washing and the stress on my spine and shoulders and the fact that while I have my roots painted I have nowhere else to look except at my moon face in the mirror. It's no longer a pleasant experience. I keep my hair short as I can't lift my arms even on a good day, just ruffle it up while wet and hope for the best! Still determined not to go white though.

[lesley2015 in reply to Ida-June128]

Yes, the image facing me is a challenge also! I have long hair which I either straighten or keep in a french pleat and usually colour myself, and hide those greys . I was just so surprised how it has made be feel so ill! So I will see if my hairdresser can let me face over the basin or will continue to colour myself. But it is a challenge with painful shoulders dying it, showering not too bad.

But like you, in my fifties I am not prepared to go grey yet!

[Hidden]

I was never a great fan of the back wash even before PMR ~ it's a while since I had my hair coloured at the salon as I found the general odour of the product had started to bother my eyes, so I found an 'organic' colour & used that for a while but l too I found looking at the Moon Face with wet hair flat to my head upsetting!

I have, however not had to worry about that for over a year as I lost all my hair due to Chemo.

So now if I want a change of colour I change my wig, it is so much easier. 🙎🏻🙎🏼

My hair is growing again but it's much sparser than it was & now my hairdresser has suggested colouring it again but 'No Way' can't be doing with that at the moment! I'm currently Chestnut Brown but have a rather nice Ginger Chocolate Colour Wig from last Winter!

As a side note my PMR got dampened down with the Chemo & the additional Dexamethasone but it's rearing its head again now & I'm back up at 7.5mg from 5mg, my GP wrote to my Rheumatologist & she rang me to save me waiting for an appointment as she was going on holiday, so that's Pretty Good Service from the NHS

Hope everyone is doing OK 💐