Actemra and hair loss

Kia ora I have been on monthly infusions of Actermra for 6 months now and recently noticed daily hair loss and that my hair has become straighter. I am wondering if anyone had any experience of this or suggestions to minimise this?

[PMRpro Ambassador]

Are you also on pred?

[Hidden in reply to PMRpro]

Yes down to 5mg for last 3 weeks but high doses prior

[PMRpro Ambassador in reply to Hidden]

Pred can also cause hair loss - and so does GCA itself. Serious systemic illnesses often show an effect on your hair but it often takes a few months to be obvious. And then people think it is the medication. So you have 2 good reasons besides the Actemra - though I'm not saying it doesn't do it too.

[Hidden in reply to PMRpro]

Thank you PMR Pro, I will try some of the tips I read on the site from other uses and cross my fingers. I suppose there's worse things. At least the Actemra seems to be working! I would like to add how much I appreciate all the work yo do on this site and your experience and advice.

[Peep44]

I have been on Methotrexate and leflumonide. I blamed my hair loss on these, but the rheumy says it is the prednisone. I am also down to 5mg. My hair is disappearing!

[PMRpro Ambassador in reply to Peep44]

Your rheumy is obvious prejudiced! I don't normally have much problem with hair loss and I have been on pred for 9 years. I recently allowed my rheumy to convince me to try methotrexate. Within a week my hair was coming out in small chunks - 10+ hairs together. Needless to say - I'm no longer taking mtx, I felt worse than in the 5 years I had PMR without pred! And the hair loss has slowed. Methotrexate DEFINITELY causes hair loss.

[Peep44 in reply to PMRpro]

I had a month between methotrexate and leflumonide. The hair still kept falling. I stopped methotrexate because of hair loss. Leflunomide is my last d-mard. I don't qualify for the next step. I'm hoping it's the prednisone and not the Leflumonide.

[PMRpro Ambassador in reply to Peep44]

It is listed as a side effect of leflunomide.

[Peep44 in reply to PMRpro]

I know. Frustrating. Almost 5 months now and I don't know if the Leflumonide is working.

[PMRpro Ambassador in reply to Peep44]

My friend found the breakthrough came quite quickly - and was a sudden "I feel great, normal, healthy..."

How long are you to try the leflunomide for?

[Peep44 in reply to PMRpro]

I don't know. My CRP and bloods have inflammation. The only things that brought my CRP right down to normal was prednisone and down to 8 on Plaquenil. At the moment it is 17, but when I had to stop Plaquenil the CRP went up to 52.

[Hidden in reply to Peep44]

I suspect I am the same and pred is the culprit. A bit cruel on top of everything else! Hopefully we will both be sporting new growth as we reduce pred further. There are some good hints on older posts. Good luck.