Q&A-7 for paid subscribers

HPV infection; to stop or switch fingolimod? Poor access to fingolimod in Lebanon; can you please help? Lymphoedema and a raised C-reactive protein; is this expected?

Questions

Q1: I am a 45-year-old woman with MS. I was diagnosed in 2004 and took part in a 2010 phase II fingolimod trial. I have been on fingolimod since 2010, with a brief break in 2012, which resulted in rebound activity and my restarting the drug. I have taken the drug continuously since then. This year, I was diagnosed with pre-cancerous vulval lesions and high-grade VIN removed surgically. I had noticed reddened skin and ulcers over a 2.5-year period leading up to this. My last smear in 2022 was newly HPV positive. Given this new cancer risk, should I continue with fingolimod, or would you recommend a change?

Q2: My sister, who has MS and lives in Lebanon, has been on fingolimod for several years. She now cannot get fingolimod. The pharmacy usually calls her monthly to pick up the medication. However, she has only managed to get it once since July. She has now had a call saying no more fingolimod is available for her. She can buy it through the black market for $480 per month, which we can’t afford. How can Novartis sell it on the black market, and we can’t get it through the healthcare system? Would you be able to look further into this matter, please? Thank you.

Q3: I recently attended A&E with a recurring leg infection, fever and relapse. Apparently, my veins from knee to ankle have collapsed under the pressure of lymphoedema. I am told nothing can be done about it. My CRP was 146 and I was given antibiotics. A couple of months later the pain in my leg returned as it often does and I expressed my concern to the GP about infections causing relapses. I was not given antibiotics but a blood test was ordered. My CRP was 22 and the doctor's notes read 'CRP raised, to be expected, no further action'. What is an acceptable CRP for pwMS, should it be monitored, and are we expected to have a raised level due to having MS?

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Answers