I have had Myelofibrosis since 2010 and have been on Ruxolitinib since late 2013.
On Saturday 19th September I was at home watching TV in the evening and felt what seemed to be an insect bite in my right side about waist high. There were no insects around and there seemed to be 3 tiny spots. I went to church on Sunday and had to visit the Dermatologist on Tuesday afternoon to look at results of skin cancer operations. I showed the doctor the small rash on my side because it had grown a bit. She put it down to being the blood tablets causing poor immunity and giving me the rashes. The following day I went into town in the bus and noticed that the rash was becoming more painful as the day proceeded. When I got home later in the day the rash had turned an angry red and stretched around to my navel and up the spine. I phoned the doctor and sent a photo and she told me I had shingles and gave me Aciclivor, I think that’s the name!
For some time, I have been using an app with the name “Covid-19, by Zoe”. It is a British firm that has been supplying information to the NHS and asks you each day how you feel and has a list of questions, mainly asking about symptoms that are known for the Covid-19. When I wrote down that I had shingles the app told me to have a Covid-19 test!
I managed to get the test the following Monday at a local walk through test centre and on the Wednesday, I was advised that I was positive, which surprised me as I had no symptoms, other than maybe a bit of awareness of congestion in the top of the chest, which lasted for two days and being a bit confused at times.
The Covid-19 app suggested that I look at research that are being conducted with NHS Covid and Dermatology because they have a library of over 400 photos of skin rashes which seem to be associated with Covid-19, although it is not a published knowledge.
I completed my 10 days Isolation period Saturday 10th October and went beyond the limits of my garden for the first time on Tuesday 😊
The shingles is slowly improving and hopefully that will be the only problem I have due to Covid-19.
Is it the Ruxolitinib that reduced my immune system and allowed me to catch the Covid-19 and that lowered my immune system even more and so the Shingles woke up and hit me? Its a big question.
Written by
MichaelS
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Wow l hope you feel better soon. Good to know you were not too badly affected. I recall a reference a brief summary in relation to Ruxolititnib on the MPN Voice Covid Webinars and l believe in the Covid guidance - perhaps Maz can recall and clarify ?
Shingles is unpleasant and can be bought on by stress as well as a weakened immune system. I am hoping to get the vaccine Shingrix at my Heamo appointment tomorrow which l understand has a 95% success rate. Might help others to know about it as a preventative measure
I got shingles when i went on Rux so it does make sense that maybe if you were impacted by Covid that it may have triggered it.
I dont think Rux will have contributed to you catching it, i think the danger with Rux and any meds that impair our immune system is the ability to fight it.
That said research is underway on Rux as there is evidence it helps prevent covid affecting us as bad as its actually the immune system that causes the main issues...
During this covid my husband has been in hospital with s gallbladder attack . Cut a long story short they sent him home he was in agony by day 8 he had sepsis and was rushed back in he's had emergency surgery had the gallbladder removed. He's on ruxolitanib so they say they are immune suppressants however , my point is he got over all this trauma within two weeks.
I think all this covid is absolutely terrifying people.
It's had us so frightened.
Yes becareful follow guide lines but in my husband's experience he's immune can't be that bad on this medication.
It’s quite encouraging to hear that you have been asymptomatic, apart from the shingles. There’s so many lessons to be learned about Covid from people such as yourself, so thanks for posting your experience. You are undoubtedly an interesting case.
My 94 year old Mum had shingles last year and recovered remarkably well. With my perseverance of getting an early diagnosis she was put on Aciclivor at the outset. Shingles runs a far less aggressive course if this drug is taken very early on.
It’s just a thought, but is it possible this antiviral drug Aciclivor had some beneficial effect on your Covid response....?
Thank You for sharing your experience there Michael, , I was aware of a rash significance in children but not adults so I'm very interested to read your post.
Just before my SCT (for MF) 5 years ago I began taking Aciclovir at quite a high dose remaining on it ever since and recently i have been wondering if there's any value in taking it this far down the line. I'm not questioning it now after reading your post !!
I'm glad that so far at least your symptoms don't appear to have been too troublesome which is good news. There's no rhyme nor reason to how Covid affects each person in different ways. I know 2 folk who tested positive, one has severe COPD , the other only one lung and fortunately both had only mild symptoms.
Thanks for your comments Chris. Luxe is full of surprises, Some good and some sad. I don't know what is helping most, whether the Rux is withholding the worst of Covid, or the Aciclivor helped ( I had it only for a week to reduce the shingles), or whether it is trying to get on with life and trying to think positively. Something you know all about. Best wishes from Michael
Hard to know exactly what's going on my friend, best be thankful thus far it's not got a grip on you and I hope it stays that way. There's a timing issue as with many who get Cv in that you don't know when you got it but you test positive for the antibodies so is it still active or was it weeks ago. I'm unsure of these issues around testing.
I recall you and I joined this site way back about the same time as back then there were but a few of us with MF. Sadly over time this has increased particularly with those who have unfortunately transformed from ET / PV to MF.
You are doing well on Ruxolitinib, you must have been on it as long as anyone. It didn't seem to be too effective for me and after a year on it I ran out of options hence my decision to have the SCT.
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