Taper Update

[Marie1479]

Hi everyone !

Just a quick update. I'm feeling great these days. I successfully tapered to 6MGs (dropped 1/2mg) and have continued my weekly Actemra shots. Here's an interesting question and observation. The year before I was diagnosed with PMR my nails were a mess. Splitting, ridges and very thin. Even my manicurist was surprised and said that this could be in indication of an illness or deficiency. In the last couple of months I noticed my nails starting to change. No ridges, no splitting and very hard. Could it be my nails were an indication that I was sick? Could it be that the condition of my nails now indicate I'm getting well? Also my hair is completely back to normal!

[DorsetLady PMRGCAuk volunteer]

Hi Marie,

Yes to both comments!

Back in the olden days that some us can remember, doctors used to check patient's nails for signs of damage. As I have recounted before, my mother was a hairdresser all her working life and could always tell the state of a client's health by their hair.

[HeronNS in reply to DorsetLady]

My hairdresser says he can, too.

Some people find pred improves their nails. Can't say it helped mine.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Not mine either, but maybe the Calcium tablets did make them a little stronger.

[Ladybird25 in reply to DorsetLady]

My hairdresser says she can too. Apparently they can tell when ladies are pregnant even before the news is out!

[Hindags]

Interesting question. I've wondered about hair nails and skin. (Diagnosed PMR 12/16, tapering to 9.5 at the moment.) The year or two before PMR I too had very iffy fingernails in stark contrast to nails I could use as screw drivers.

I have lost a lot lot of hair on Pred. Am using minoxidil to try to preserve my follicles for when the Pred shedding might hopefully stop. My dermatologist recommended taking biotin as well for my hair. No help there as far as I can see, but my nails are definitely stronger with a lot less splitting.

Now for my skin. It is thin and porous. I use various lubricants and it isn't dry, but sewing has become an extreme sport for me. The other day the back of a sewing needle punctured my skin. Any remedies aside from bandaids and antibiotic ointment at the ready?

[PMRpro Ambassador]

My nails split badly when I had PMR - and once I was on pred they started to improve. I think that the PMR affects the blood flow to the nail bed - and your nails suffer. Once the inflammation is gone, your nails get back to normal.

Skin can be improved by not using soap (anything that foams) and moisturising it well. Many people swear by Diprobase or Doublebase products - created for patients with eczema.

[Suzanne457 in reply to PMRpro]

Hi PMRpro....me too..! That is ...my fingernails with pred are much stronger now and grow really quickly . My eyelashes are longer too but NOT the hair on my head.. Unfortunately, I am finding hair on the floor, in the bath tub and in many other unlikely places instead of on my head . Hair loss like that is quite disheartening.

[Marie1479 in reply to Suzanne457]

In the beginning I grew dark peach fuzz on the sides of my face. My doctor said other patients have complained of this while on prednisone. I went directly to the salon and took care of it ! Thankfully never came back

[PMRpro Ambassador in reply to Marie1479]

I grew a black beard when I was on Medrol/methylprednisolone - thank goodness for my epilator!

[Marie1479 in reply to PMRpro]

Now that's interesting. Months before PMR I also noticed issues with my hair too. it just wasn't right so I just figured it was menopause. When I was at my worst I had shedding. Not only did I feel like crap, I looked like crap! I recently was looking thru some of my journals and just cannot believe how sick I was. One of the first entries is smeared because I was crying. It was Thanksgiving morning and I couldn't lift myself out of bed....

[Hindags in reply to PMRpro]

Thanks for the skin care rx. I use a non soap soap, vanicream. I also use nivea soft. I also use a combo I make 2/3 eucerin old fashioned and 1/3 albolene. These are all on sale here in the US. I'll look up Diprobase or Doublebase to see what names they might have this side of the pond.

[PMRpro Ambassador in reply to Hindags]

You can get at least one of them from Amazon - which is fine if you have Prime so you don't pay a fortune in delivery.

[Baileyw06]

My hair dresses says using a satin pillow case helps if your losing your hair.

[Hidden]

I have read somewhere, I think🤔 that vitamin D and Calcium will help with nail and hair growth. Someone will come forward and confirm if true or not. We all whilst taking pred should be taking it anyway 😳

Pete 😀

[karools16]

Lovely sentence'I feel great these days'. Good for you, Marie.