Sallydoo

[Sallywoo]

Dear smeackles,

I have never responded on this platform before , although I've been a Member for years.

However, my heart goes out to your Daughter and I can only give you my experience. Having Primary Sjogren's which has caused the complete loss of teeth ,COPD, Autoimmune Hepatitis, Interstitial Cystitis etc. I too experienced hair loss when put on Hydroxychloroquine by my Rheumatologist but I don't have Lupus .

I happened to mention it during a private meeting with my Female Pharmacist and was told her Mother also took Hydroxychloroquine and she also experienced hair loss which she combatted with Minoxidil. I decided to cease taking Hydroxychloroquine and, in my case, my hair improved.

I'm not suggesting your Daughter does the same but decided to share my experience.

I hope with all my heart that you Daughter's side effects do subside as her mental wellbeing is just as important as her internal organs.

Sending much love xxx

[smeackles]

Thank you so much Sallywoo for you kind words and sharing your own experiences.

Knowledge is so important and hearing all sides is such a benefit.

Certainly taking this all into account and not about to suggest to my daughter to stop meds herself but definitely will talk to rheumatologist at our next appointment in December about this specific effect and possibilities they could be adding to the loss or if anything else can be given to combat this.

Cannot fathom the loss you have experienced. I truly hope you are in a good place now.

Thank you

[Sallywoo in reply to smeackles]

Thank you smeackles,

I do hope your Daughter's hair loss can be resolved as she has enough to contend with without the loss of her hair. It is not vanity and I appreciate the main concern is for the protection of her vital organs by the relevant Doctors but as aforementioned, her mental wellbeing is also so important - she is such a young girl and needs to be taken seriously.

Sending my heartfelt wishes for better health in the near future and beyond. Take good care.