Just wondering if anyone has suffered with shingles since they have been on Ruxolitinib. I was diagnosed with MF 7 years ago.

[October]

I have been on Ruxo for 10 months which has been marvellous and has reduced my spleen by 50%, but still low hg and have started to itch again. Shingles appeared last week so am now taking 800mg 5 times a day of Aciclovir for 7 days. Have stopped the Ruxolitinid for a few days as one of the side effects is shingles. Seeing my Haemotolgist tomorrow, but would be interested if anyone else has suffered. Thankyou

[eire]

Hi October,

You poor thing shingles are so paiful. I've been on Rux combined with Panobinistat for 15 months. My spleen reduced by half but has remained the same now for 6 months. I was on a higher dose of the Pan but found it a tough drug to cope with so it was reduced and the spleen has remained the same size since then. I have MF but other than the usual tiredness which I combat by going for walks I'm doing really well. I didn't know shingles was a possible side effect. Good luck today.

[skodaguy]

Sorry to hear about the shingles, hope you got acyclovir quickly as it is quite effective then. I started ruxolitinib Nov 2012 for MF and found the itching went but now it has for about the past 6 months. Interested to ask if you have noticed any return of the fatigue as well?

[October in reply to skodaguy]

Thank you for your reply. My fatigue never went away as my hg was 10 or under and has remained so. My energy levels are still a problem. I always have to push myself to do things. I am a golfer but haven't played since December and have only been playing 9 holes. We used to go on walking hols, but now I can"t keep up, especially if it is uphill.

[Twinkly in reply to October]

Hello October ,walking holidays? Wow I couldn't manage that even before I was diagnosed , we have changed our routine ,my husband takes me out in the afternoons in my car we drive to a park or leisure centre ,I walk my 4 dogs holding his arm ,for at least half hour ,then once round the supermarket ,I love my life ,,I enjoy every day ,,it's a mind thing ,if you don't mind ,,it don't matter.

[bernie62]

Hi October,

I did not know, that you can get shingles, by taking ruxo. I have been ruxo for 13 months,

did get very bad headaches, for the first few weeks, but since then been ok,

my spleen is a lot smaller, which is good news, hope your shingles clear up very soon,

all the very best,

[babbittybumble]

Hello,

Just wondering if you have been in contact with any children with chickenpox as the two illnesses are related . In adults it develops as shingles . Hope you are feeling better, as it is very painful. Bye

[October in reply to babbittybumble]

Hello

No I haven't been in contact with anyone with chickenpox. I did have them when I was 10, which means you are a likely candidate for shingles. I am feeling much better. Thankyou.