Mycophenolate and hair loss

[Mrsdoozer]

Hi EveryoneIt's been a while since I posted as been having a rough time of things . Long story short I have Sjgreogns primary and Lupus secondary. I was taken off Hydroxychloriquine as it started to effect my eyes and put on Azathiropine.

Aza worked pretty well apart from it made my white blood cells low and I became neutropenic. However I was on it for 6 years then suddenly taken off it and was left 9 months with nothing . In that time I flared and ended up with trochantric bursitus and my joints very painful . It was then decided to put me on mycophenolate which to be fair has helped but my hair is falling out . To the point my 1 year old Grandaughter was sat on my lap and as baby's do she grabbed my hair and ended up with some of my hair in her hand . I'm trying all the usual shampoos scalp treatment .

I just wondered if as any one else has experienced the same ? Currently they are considering an alternative but in the mean time I dread brushing ,washing my hair . Xx

[lupus-support1 Administrator]

Hi Mrsdoozer!

I am sure this is depressing. My advice is to speak to your doctor who may refer you to an expert. It can cause reversible hair loss.

Mycophenolate therapy.

Possible side effects

Most people don’t have side effects, and everyone reacts differently to medication.

However, if you have any concerns about your symptoms contact your doctor or

pharmacist. Mycophenolate may cause sickness, vomiting, diarrhoea, abdominal pain,

reversible hair loss and sensitivity to sunlight. These side effects usually improve as you become use to the medication.

The effect of Mycophenolate on the blood is rare but it weakens your immune system and therefore increases your risk of infection. If you develop any signs of illness or side effects such as infection, unexplained bruising, bleeding, sore throat or mouthulcers, fever or malaise contact your doctor or pharmacist immediately.

Additionally, if you have not had chickenpox and come in close contact with anyone who has chickenpox or shingles contact your doctor.

swlimo.southwestlondon.icb....

Hope this helps!

With good wishes,

Ros

[Yellow92]

Hi Mrsdoozer,I've been prescribed mycophenolate for lupus nephritis. I did experience hair loss for a while when I started using it, I cut my hair shorter as I used to have long hair. Eventually it started becoming a bit thinker again and now I'm growing my hair longer again. Fingers crossed the hair loss will settle soon and you will see an improvement.

[Mrsdoozer in reply to Yellow92]

Hi Thank you for those encouraging words . I have just booked myself in for a cut and blow dry Tuesday .

I find the mycophenolate is helping. And I want to purservere with it after all everything has side effects of some sort.

The nurse said stop taking it if you wish! Not ideal as everything has settled with my white blood cells.The idea of going cold turkey whilst they umm and err about what to do next for another 8 months is not appealing in the slightest . It's OK for them I'm just another name on a piece of paper,but in the meantime I become unwell and life becomes uncomfortable & quality of life drops dramatically.

Thank you for your advice x