I wanted to ask for some advise please, I have had ET for the past 2/3 years and am on hydroxycarbide 1 tablet Mon to Friday and 2 at weekends touch wood i am tolerating it very well at the moment. I have been told by my GP i can have the Shingles vaccine but ofcourse not the live vaccine has anyone with my condition had this vaccine? I spoke to my consultant who was a bit vague but overall thought it a good idea for me to have it, i would love to hear from anybody who has had this vaccine. Thanks so much for the support from this lovely group.
I have ET/myelofibrosis unfortunately I can’t offer you an answer as I’ve not had the vaccine. My late mother did have the vaccine & was completely fine & im sure you would not be given something that would compromise your health any further. Do you have a clinical nurse specialist that looks after you? Maybe if so you could speak to her & get her take on it. If you are still feeling cautious call our support line where they will be happy to advise you. 08082080888. Sending you warm wishes
Hi @JanPS, thank you for your post, and I do hope you’re doing okay. I’m sure others can share their personal experiences of the shingles vaccination here, and as @JoJoflowergirl has mentioned contacting your Clinical Nurse Specialist is a good idea if you have any concerns, as your team know your medical history. You are indeed welcome to talk things through with our Support Team, too. I thought I’d share our website information on this topic too, just in case it’s helpful- Blood cancer and staying safe | | Blood Cancer UK. The NHS also has some information on shingles and the non-live vaccine known as ‘Shingrix’ - Shingles vaccine overview - NHS (www.nhs.uk).
I hope this is helpful,
I had a stem cell transplant for Acute Myeloid Leukaemia, and had shingles twice once off the antivirals (aciclovir) - so unfortunately had to go back on them. Shingles was not nice at all, but taking extra meds every day is a nuisance too. Then I heard about Shingrix (the non-live vaccine that works for 5 years) and my consultant agreed it would be better than taking antivirals every day - so I’m having the jab tomorrow. I’ll report back to you on it in a few days. I’m hoping I won’t get nasty side effects, because I’ll be at work!
All the best.
That’s very interesting to hear about the Shingrix vaccine, @Fullofbeans - I didn’t know that there was a non-live vaccine for shingles and I’m definitely going to ask my consultant about that.
I hope that works out well for you @JanPS
I have Chronic lymphocytic leukaemia (CLL) and I have been on a global trials program for over two years ave Chronic lymphocytic leukaemia (CLL) and I was advised by my haemotologist to have Shringrix about six months ago. Two shots in total about three months apart without any side effects. I was also advised and I have had all my childhood vaccinations again as well again with no side effects.i
Yes, it was a revelation to me too. I heard about it on a stem cell transplant support page on Facebook, rather than from my consultant, several months ago. At my last appt, my consultant confirmed it would be fine for me to have, so I booked it with my GP practice immediately. I’m surprised consultants don’t promote it a bit more, as one jab must be cheaper than 5 years of daily antivirals, surely? And the fewer pills we have to take, the less like a patient we tend to feel, which must be better for our mental (and therefore physical) health.
I remember arriving home from my transplant with dozens and dozens of medications to be taken four times a day. I felt completely overwhelmed by them, and felt so disabled. I’ve been chipping away at them, and once I’ve had the Shingrix vaccine, I’m down to just two. Am so pleased with this - it’s a real result for me. I hope it’s something that makes a difference to you too. X
Would you believe this, @JanPS? The surgery rang me yesterday afternoon to ascertain the reasons why I wanted the Shingrix vaccine, and told me it wouldn’t stop me getting shingles, but would just lessen the pain of an attack. As not getting shingles at all is important for me (it emerges through my weakened immune system) it’s better for me to stick with the antivirals, it seems. So there goes that plan! Best of luck with your decision though.
Thanks for the update @Fullofbeans, yes, I always think it is good to have a plan, I feel more in control then.
I have WM Waldenstrom’s Macroglobulinemia and have just had my second dose of shingrix.
I had it because I have now reached 70 but would have asked for it if I hadn’t been nearer that age.
WM does affect your immune system and make you more susceptible to picking up shingles.
I would far rather have the jab than suffer the pain of shingles.
The first dose had no effect on me but the second did give me a raised temperature and flu like symptoms. This is not uncommon for any vaccine. It only lasted a day.
So yes if you have any concerns get in touch with your CNS or comsultant before you make your decision.
Hi, I am on the same Hydroxycarbamide as you. I have had two doses of Shingrix recently as it is apparently non live. Felt a bit rough for a day after both but otherwise fine. Good luck
Hi @Fullofbeans. It seems to be a postcode lottery whether or not we are offered Shingrix. I rang my surgery today, as I needed an emergency appointment, and I spoke to the admin girl about the vaccine, and she made my appointment for the first dose of Shingrix for next week. That is on the proviso that I am allowed to have it so soon after getting shingles, as a result of the hydroxycarbamide. If I don’t hear from her, it will go ahead.
Ooh everything crossed you’re given it, @Chris1. Sorry to hear you’ve had shingles recently - that’s rotten luck. Hope you’re over it now.
Hi @Fullofbeans. Yes I am over it now, thanks. I am still struggling with eye and skin infections though, so got some antibiotics that will hopefully work. I am keeping my fingers crossed for getting the Shingrix next week.
Oh @Fullofbeans, I’m sorry to hear that! How disappointing about the Shingrix vaccine.
Hope the infections clear up quickly, @Chris1. Having had a few infections myself, I know how annoying these things are in top of everything else. And yes, fingers crossed for Shingrix.
Well, I was hoping to get rid of one more pill, but it was not to be. Ah well. In the grand scheme of things, it wasn’t so important. Hope you’re ok, @Coastgirl?
Oh - saw your other post and replied to that. X
Hi, when I was on immunotherapy treatment I kept on getting shingles, three times in one month! I was put back on Acyclovir. I asked my consultant about Shingrix and how protective it would be and he reckoned fifty percent. My understanding is that when you have a weakened immune system vaccines give you some protection but not as much as, say, a normal healthy person. Or maybe he was just “hedging his bets”. I agree you need to speak to your clinical team, but to be honest mine didn’t seem to know much about it, but that was some time ago. I am going to raise the matter again at my next review, but personally I would rather take Acyclovir than have shingles again. All the best.
Hi @Fullofbeans. Well I went to my appointment at the surgery at 08.30am this morning. Saw the nurse expecting to get my first dose of Shingrix vaccine. As I hadn’t been contacted I assumed it would go ahead. She had spoken to two of the GP’s about me having shingles last October to find out if it was ok for me to have the vaccine. She got two different answers so was reluctant to give me the vaccine until I have spoken to my haematologist next week. More delay. She has made me another appointment to see her in two weeks time with a view to hopefully giving me the vaccine then. I now feel totally let down by all of them. Why did they send me a letter to have the vaccine without checking their facts first. Even the drs don’t seem to know much with their conflicting views on the subject. Why is nothing ever straightforward. They are supposed to be the professionals. From a really ticked off Chris.
Oh @Chris, I’m sorry - and I know how you feel. As you know, they rang me the day of my appt to say they didnt think it would be of much use to me. You would indeed think all the consultants, GPs and nurses would be clear on who the vaccine is suitable for. It’s really frustrating, isn’t it? And people like us invest quite a lot of time, energy and emotional expenditure into getting the meds that will protect us - so to be told at the last minute that we’re not going to be getting the protection we thought we would, is upsetting. And our days can at times revolve around all these arduous medical appts - so last minute cancellations feel thoughtless. I’m really sorry. Let’s hope your haematologist can shed some light on it, and that you get the vaccine in two week’s’ time.
Talking of vaccines, I’m off work today - I tested positive for my first bout of covid last night. Was feeling extremely achey all over, and then my throat became sore, so I did a test, and bingo. But I’m actually not feeling too bad today after a feverish night - just cold symptoms really. So at least all those covid vaccines we’ve had seem to be doing the trick!
Hope you stay virus free.
Take care. X