Flare and hair loss

[Lily-fly]

Had pmr for 2years now and been on 5mg since May 2021. Doctors advised to stay on that dose for a year!! 6weeks ago started on 4mg twice a week 5mg on the other days and am now in so much pain!! Tried taking 7mg the last 2 weeks but still the same so have gone up to 10mg from yesterday.

Have had to wait 2.5 weeks to see a doctor.

Question is if 10mg eases the pain how do I taper back down?

Anyway while dealing with the flare have noticed I’m losing so much hair over the last 4weeks??? The way I’m going I’m not going to have much left before long.

Is this due to long term steroid use and is there anything I can do?

Read this forum every day and helps so much. Thanks all 👍

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that -couple of links -first how to treat /return to previous dose after flare -

healthunlocked.com/pmrgcauk...

Second on hair -

healthunlocked.com/pmrgcauk...

[Lily-fly in reply to DorsetLady]

Many thanks for the links. Very helpful and informative 👍

[LozzaSandstrom in reply to DorsetLady]

Thats very interesting Dorset Lady - my. hair has been fine all my life but has thinned a lot in the last 4 years and interestingly since my aches and pains got a whole lot worse so its probably the PMR not the steroids if thats correct. Also only started myself 3 months ago so not to blame steroids is good - thank you again for a great link for hair loss and how to manage it

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

Thinning much more likely to be ill health - but Pred can change structure- making it more frizzy. That’s something mine’s always been prone to, natural curls.

Since I wrote post have used White Hot Hair products exclusively-and really notice a difference -the Lifeshine Oil is brilliant and only need a very little to control.

[LozzaSandstrom in reply to DorsetLady]

Yes my hair has been naturally curly all my life - the older I get the straighter it gets - because its thinner I suppose. Its listed as a side effect on the pred but mine was getting thinner post menopause anyway, having fine hair is all well and good if you have plenty of it!

[PMRpro Ambassador]

If it eases it inside a week to 10 days you can drop straight back to the previous good dose. I'd suggest next time you try you only try 1/2mg, even with a slowed taper, and repeat the steps two or three times.

As to the hair - it's probably another "everyone is different". I have been on pred for 13 years and it has been through everything: fell out with untreated PMR, came back, has become quite dry and very curly, frizzy when shorter but smoother as it reaches a critical length! But very thick ...

[Lily-fly in reply to PMRpro]

Thanks will give it a go. Before I started the taper I saw the doctor who told me to try 4mg every other day but I thought that was a bit too much so did 4 twice a week. Will hopefully get back to 5 then do the dsns taper giving that a go. Regarding the hair, mine has become very curly underneath but it’s that hair that seems to be falling out. My saving grace is that I’ve always had a lot of hair so even though it’s a lot thinner, it doesn’t notice too much. Just hoping it stops at some point!!

Thank you for your reply

[PMRpro Ambassador in reply to Lily-fly]

A basic rule is that NO drop should be more than 10% of the current dose - and it does help but obviously gets harder as the dose goes down. You have been at your current dose for a long time - your body will notice the change.

[Seacat30]

I have read that hair falls our about 12 weeks after whatever caused the loss (which could be stress). Did anything change in your life about 3 months ago?

[Lily-fly in reply to Seacat30]

Omg 3 months ago was on holiday in Tenerife when I got severe food poisoning and was admitted to hospital for 2 nights with dehydration. Wonder if that could of been the trigger 🤷‍♀️ Thank you

[PMRpro Ambassador in reply to Lily-fly]

It could well be ...

[Deyazlex in reply to Lily-fly]

My hair loss was due to stress and over exercising/dieting . Sometime later my optician detected I had a macula hole and whilst waiting for hospital treatment I bought a lutien supplement from a health shop. The result - not only did my macula heal (much to the optician’s surprise) but my hair and nails improved in strength!!I have therefore continued taking the product….

[HappyDiamonds in reply to Deyazlex]

That's very interesting to me Deyazlex because I have been diagnosed with a macular hole very recently and have a Hospital appointment next week to decide whether I need an operation. Then I read that you have PMR affecting your lower body only and walking difficulties and I am the same although a GCA sufferer. The Rheumy will just not agree that I have PMR as well whereas I think symptoms have shown as I reduced from 60 Pred. butI also have arthritis so it could be that in my case. Its a bit of a minefield knowing what is what!

[PMRpro Ambassador in reply to HappyDiamonds]

Why on earth don't they READ - PMR can affect either/or/both hips and shoulder girdle. There is a wide variety of presentations - that is half the problem ...

[HappyDiamonds in reply to PMRpro]

I have an appointment with Rheumatology next week with a different Registrar and Im tempted to bring it up again. Im also tempted to try increasing my steroids for a day or 2 to see if it makes a difference. Im on 6mg for one more week then 5mg. Would I be ok to go up for 2 days and then straight back to 6 just to see if it proves PMR or is that unwise?

[PMRpro Ambassador in reply to HappyDiamonds]

Doesn't prove PMR - just another brick in the wall of evidence. I probably would try it though.

[RoadTrip in reply to HappyDiamonds]

I have GCA with PMR affecting lower body only. The PMR affected me approx. 5 weeks before headache started and helped me self diagnose GCA. Doctor thought headaches would just go away. I have had return of PMR pains at about 9mg and upped pred accordingly.

[agingfeminist]

I have had about 60% hair loss on 4mg....great bald patches have appeared...now wearing very brightly colored scarves turbaned round my head...if you do go baldy in places it is suggested you use coconut oil on the scalp to keep it in good condition and of course, don't go out in the sun without hat. Nothing stopped the great fall out...it seems to have slowed...not that there is much left...but at least it is not decorating my keyboard. I buy long vivid scarves from kettlewell colors.

Just the latest thing to cope with...