Hi everyone I am currently on the jakafi trial for ET at guys and have Been feeling unwell for about a week headaches and sore shoulder, two days ago my wife noticed a rash all over my right side shoulder and chest and neck, all bubble blisters and red,very sore. By now my head and jaw are hurting very bad and I can barely walk about, so went to gp in isolation for suspected shingles and after everyone talking about what to do with me they gave me a letter for the hospital.
Went up to Margate hospital and it was packed as Canterbury has closed it's a and E department, nearly went Ashford but went Margate instead, they kept moving me around as no beds or even rooms,poor nurses and doctors were run off there feet but still smiling, after a diagnosis of shingles and bloods and xray of chest, they gave me a prescription for pregabiling and sent me home cause no beds or they would have kept me in.
I have been in bed since then two days ago I have been in extreme agony with my head and chest, at times I have felt like punching myself in the head really bad,after a few days of the meds I'm a little better but really dizzy and can't think straight,and my head hurts but it's numbed with the painkillers, wife ringing nurse at guys tommorow to see if they want my jakafi lowered not sure what's gonna happen.
Anyone else had shingles prob causes by jakafi?,really feel for yah if you have gone through this.
I've been on and exhausted hydrea,anagralide,interferon,pegasys and now this trial, does any one know whats left to try if this don't work. Don't mean to go on I'm in bed and awake for once and wanted to tell someone.
Wife is really good even brought me up homemade veg soup and looks after.me.when I'm like this. This has been a ride is all I can say one I would not like to go on again....
Take it easy everyone, blessed..
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Rastavapa
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I'm so sorry to hear everything you're going through -- it sounds awful. I wish I could help with some useful information, but I haven't gone through what you're describing --wanted to at least give you a friendly voice. Your wife sounds wonderful and you're so lucky to have her by your side. I'm sure others here will give you good information. In the meantime, I hope things get better and I'll be keeping you in my prayers.
Hi Rastavapa, like Kim I have no helpful information with regards to what your other options might be if Jakafi doesn't work for you..but this time last year I had shingles so I really sympathise with you. I hope the pain relief you are getting is decent, and helping a bit and of course the love and veggie soup from your supportive wife. Let us know how you are.
Thank goodness for your caring wife, I hope you get over the worst soon. I'm sure the trial team at guys will be advising you. It's rotten when you feel so rough. I had shingles last year and it was the itch that drove me crazy. I don't have any experience of jakafi though, as I take hydroxy for ET which I am juggling at the moment as my counts are unstable and the fatigue is ridiculous. I hope your shingles calm down soon. Best wishes
shingles is dreadful. you r more likely to to get it if on Jakafi but Jakafi doesn't cause it. I think Jakafi is a great drug for many people ; stay with it and get more advice on alleviating the shingles symptoms for which u have my every sympathy. Try nhs direct?
An update, im in isolation at guys as I type this they are giving me an iv of a drug I cannot remember, just had my canular put in so I'm in the best hands now, thanks for all the replies, just want to get back to my normal whatever that is.......
Nick, fingers crossed for you to feel better ASAP. Glad you are in Guys and getting treatment. Sending a load of E hugs and hopes for a speedy recovery. Aime xx💐😻
Ah Nick just been reading your post and now the update - just to say thinking of you kid and really wishing you easier days soon ahead - I am glad you are in Guys as you are in the right place to get the very best assistance and help - sending thoughts and care to you and your wife
So sorry to hear you’re having such a rotten time, I’m sorry I can’t answer your question but just to let you know I’m thinking about and hoping you feel better very soon. Kindest regards Aime x😺
Hi thanks for your concern but yes there are quite a few other drugs and combinations they can use for ET, I just did not get on too well on some and run the course on others. I was on hydrea for ten years before it was causing bad sickness and anemia, hope you find your right med to use we are all very different.
Still here had three bags of cylo something and painkillers and such and I'm feeling better still got blisters everywhere and hurt but it's all being controlled. Got my own room at guys on suite too. They have said they want me to stay in for another day or two so they must be concerned in case it goes to organs I suppose. They also said I would have to take a tablet form of the iv drug in combo with my ruxolinib to keep it from happening again and I might have to keep taking the pregabiling if the pain persists which can happen sometimes.
Putting this info all up as it's a new trial for ET with this drug and it might be of help to someone.
Can't thank the team enough at guys esp Claire who rang my wife early in the morning after reading my post here, how's that for going beyond the call,within a few hours I was picked up by nhs transport and taken straight to guys from Canterbury, if I had stayed in bed just with the painkiller as Margate hospital told me to do I might not be here or be in a lot worse position.
I'm so pleased to read that Guys are looking after you. You have been through a really rough time. I just wanted to send greetings and best wishes to you all the way from New Zealand, and hope that you are feeling lots better soon.
Thanks Peter, my wife and kids just visited for a short time, they have just left, I'm starting to feel a bit better now but they are keeping me in the weekend I think to be sure, take it easy man
Hi, sorry to hear your problems but it looks as if you are now in the best hands.
I think the drug you’re now taking with Jakafi (Ruxolitinib) is probably Acciclovir. It’s an antiviral drug used to prevent Shingles and I was prescribed it as soon as I started on Ruxolitinib. No problems in nearly three years.
Hope it does the trick for you.
Hi,
I am on Jakafi now for one year now. Could not take hyrea, have not taken pegasys and wont take anegralide.
I an very sensitive to everything and had a hard time like you when I first started taking Jakafi so my Dr. decreased the dose in half. I could tolerate that but my blood counts started to rise. I have PV.
Let me add too that I had a blister on my lip in the beginning but not shingles. Also Jakafi is the only thing that stopped my itching even at the low dosage.
Anyway, during this past year, we slowly increased my dosage to let my body adjust, and it is. I am currently at 25 mg a day and will check soon to see if needed more.
I feel that I should have been started at a low dose in the beginning and slowly increased instead of being started at a high dose and couldn’t take it.
But thats where I am at now and just wanted you to know that I did better having to start at the lower dose and slowly increase.
I wish you well and its good you have someone who is supportive.
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