Hi There,
I have had chemotherapy for CLL. Diagnosed a couple of years ago, I am now on Imbruvica and have been for eight months I am suffering from numerous symptons but just recently have developed "ROSCEA" which is very painful also I have not been diagnosed but think I have fibromyalgia. I was wondering if anybody else has had Roscea and how they have dealt with it.
John
Hi John,
Sorry to hear you've developed rosacea which is a miserable condition. I have a close member of my family who suffers with it and uses Dermalex cream to very good effect. It's also advisable to limit time in the sun because that aggravates it as does alcohol and very spicy foods.
dermalex.co.uk/rosacea/what...
It's interesting that you also feel you may have fibromyalgia. Can I just ask where the rosacea rash is John. Is it in a 'butterfly' pattern down the bridge of your nose and cheekbones? The reason I mention it (and it may be totally unconnected to you but worth exploring) is the condition lupus causes this nasty rash and muscle pain and fatigue. There's also a connection between fibromyalgia and skin conditions which seems badly understood and researched but widely acknowledged. It's thought to be related to dysfunctional nerve signalling. But this is something you'll obviously be discussing and having diagnosed.
It may be connected to the use of the Imbruvica of course or chemo induced but push for it to be looked at. If the rash becomes a real problem, a referral to a Dermatologist would be advisable. But if you haven't already tried it, the Dermalex cream is very good (but not particularly cheap). Good luck.
Newdawn
CLL experience
CLL and Surgery (not CLL treatment )
CLL with “normal” FISH
CLL diagnosis with Obinutuzumab and Ventoclax offered as treatment
ME/CFS and CLL
