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Shingles vaccine - Shingrix
As my husband has just turned 70 his GP offered the shingles vaccine. I see that there is a non live vaccine, Shingrix, available since September 1st in the UK. He is just 4 years post transplant on all the meds he left hospital with including Aciclovar 3 times a day. He is immunosuppressed with chronic GVHD, gathering one condition after another, managing to tick off many of the medical specialities. Some issues may be a result of steroids.
I was just wondering if there is much experience or feedback from having this vaccine regarding any side effects or issues of any sort?
He has had no problems with any of his other vaccinations and deferred the MMR as it is live.
Many thanks
Gail
Answers
Hi Gail,
I don't recall having a vaccine for shingles but I guess that may be because up until now there has only been a live vaccine. I guess it may be worth a call to his medical team to get their view and agreement. I know that the norm is for us transplant patients only to have inactive vaccines so I guess it should hopefully be ok, but probably best to check with his transplant team to be sure.
I'm sorry to hear that he is still struggling with GvHD. To be still on immunosuppressants and lots more medication four years post transplant must be really hard, particularly in the current situation with Covid. I think I saw from another post that he's been on ECP. Is that still going and has it had any noticeable effects?
I hope someone can share some insight regarding the shingles vaccine.
All the best,
Steve
Hi
That is really tough situation to be in sorry to hear this. I would also be interested to know if it was available.
I may have this wrong my understanding was you could receive a live vaccine after 2 years from transplant but not sure if being on immune suppressants affects this.
I know I have to wait up to 2 years post transplant to have my MMR live vaccine.
Although 'm in my late 30s I'm going to see if I can have shingles vaccine as I had shingles when I was 32 a year after my first chemo good to know there's inactive version.
Laulau
Hi many thanks for replies. Yes it has been a long haul with one condition developing after another. As soon as one issue abates another rapidly rears its head !!
Firstly re shingles:
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1014037/Shingles_HCP_guidance.pdf
I have found the above document which is very useful. Long but interesting for anyone advised or wants to have a shingles vaccine. It discusses all of the guidance on who is eligible for the inactivated version Shingrix as it is limited in supply.
One item to note is that Aciclovar administration needs to be adjusted before having either vax.
ECP: Yes he has been on fortnightly ECP since August 2018 when he developed grade IV (very severe) oral GVHD. At the first lockdown this was reduced to monthly. Whether it was due to this we are not sure but his upper body scleroderma worsened significantly. Currently this is static. We feel that ECP is only just holding back the GvHD. It went back to fortnightly in the late Autumn 2018.(if I remember correctly!)
We are soon to have a discussion with the team whether he should be taken off steroids, ciclosporin and ECP and switched to Ruxolitinib. That is another post I need to make re anyones experience of this and other drugs stopped or retained!! I am researching this now. All very time consuming especially as he has been unable to drive or read much with severe cataracts.
Hope the above document is helpful to everyone.
Gail
Hi Gail, thanks for the update, and the link to the document which will hopefully be useful for anyone considering the shingles vaccine.
Regarding the ECP, my own experience was that when the frequency of the ECP was reduced (probably too early) my GvHD flared up and the frequency was increased again to cover it. I guess due to lockdown things have been set back which won't have helped your husbands situation.
I hope they fiind a solution to his GvHD, whether that is the ECP finally taking an effect or the Ruxolitinib or another alternative. Having gone through so much already with his treatment and transplant, to have to continue treatment so long afterwards for GvHD must be really hard work, for you both.
Best wishes,
Steve
Thanks Steve
Yes beginning to feel a bit weary!! But on we go trying to be positive!
All the best
Gail
Hi Gail,
Claire here from the Patient Services team. I'm so glad that you are finding the forum helpful - and thank you for sharing.
I just wanted to also let you know that you are very welcome to call us here in the Patient Services team on 0303 303 0303 (Mon-Fri, 9-5) if you would like to talk or have any questions - we could arrange for you to speak to our Lead Nurse, Rachel.
Take care,
Claire
Gail
I'm afraid I have nothing to add on the vaccine, but I would mention that I got shingles about 3 or 4 weeks after I stopped taking aciclovir (15 months post transplant). So if he has any plans to stop aciclovir I'd recommend it!
Tony
Thanks so much everyone. Just had a face to face consult with the team. He has so much going on at the present so not to have shingles vax now and he is on Aciclovir anyway. Not sure what the Aciclovir reduction protocols are when the time comes!
Ruxolitinib is on hold now.
Thank you Claire I will ring as he has a couple of issues that are very unusual and so far undiagnosed! Maybe someone has come across them. He is very complex!!! Too much attention seeking I say!
Many thanks
Gail
Hi Gail, it is complex, mine too. If it wasn't we wouldn't need this blog.
Thanks so much for sharing, you give me strength without realising.
Best wishes to all,
Helen
Hi everyone
I thought I would update on the shingrix vaccine and other issues.
He has had his second dose of Shingrix today. No after effects from the first. It is in very limited expensive supply and the GP practice have to order it specially. You have to make sure they understand!
He has now managed to stop steroids and reduce Ciclosporin to stop soon. Started Ruxolitinib in April. The plan is that if all is static ECP will reduce from fortnightly to monthly.
Sadly he has developed idiopathic head drop syndrome. ie muscle degeneration of the upper back so he is unable to hold his head up when walking. I am sure that this is due to all of the drugs he has been on for so long. There is no cure and we are experimenting with various body braces and neck collars. I have to walk in front to warn of issues such as hanging branches, prancing dogs, electric bikes - you name it!
Ruxolitinib has not been without problems! At 20mgs he developed anaemia with a reduced red blood cell count and haemaglobin so had to have a blood transfusion (irradiated) in order to have his ECP.
The dose has been halved to 10 mgs and his Hb and HCt has increased very well. I suspect this is also due to reducing ciclosprin.
Everything has a repercussion one way or another.
It is such a complex juggle. Just hoping that nothing else deteriorates such as the scleroderma as he can still walk but it is boring for him just looking at the ground. On the positive side he can warn of all the dog poo!!
We still laugh!!!
Best wishes to all
Gail