[roncantrillParticipant]

I haven’t visited for a long time because Pauline, my wife, has been in full remission for 5 years and we have been distracted with other problems. However, she is now displaying almost certain symptoms of Shingles which have developed over the weekend and based on past experience this seemed the best place for good advice. It is possible that there is another topic devoted to this subject but I haven’t been able to find it so here we go.
Simply, we are pretty certain that She has early symptoms, pain followed by blotchy red patches spreading and then blistering. The annoying bit is that our local surgery started a campaign of Shingles vaccine about 6 months ago but refused to give it to Pauline because of the Myeloma.
On my earlier search I found one post which mentioned that most post SCT patients will develop Shingles within 5 years, the majority within the first 18 months.
There are probably good reasons for the refusal of the vaccine as there are for other restrictions like avoiding aspirin and ibuprofen but given the above statistics this particular one seems questionable.
Any comments would be very welcome.
Ron.

[avantrompParticipant]

Hallo Ron
Get your wife to the GP as soon as possible to get anti-viral treatment. This can help to reduce the effects of shingles if taken soon enough. I got shingles 2 years ago and still feel the nerve damage on my back. My consultant has given me an undated prescription for anti-viral pills so that I can react straight away if I suspect it. Having it once does not prevent you getting it again. Shingles vaccin is based on a weakened live virus so cannot be given to anyone with reduced resistance.
I was probably unlucky that the effects lasted so long. I hope it is over more quickly for your wife if she does have it.
Annette

[roncantrillParticipant]

Thanks Annette,
We have some experience with shingles from relatives etc. and self diagnosed this a few hours ago. Unfortunately, she has calcification in he shoulder joints and we assumed that the pain was from that but when the rash started to spread up her neck and the violent headache started we worked it out. The problem is to decide between the wait and risks of A & E or getting to the GP at 8:00 tomorrow. Why do these things always happen at weekends? 🙂
Fortunately we have a good supply of 30 mg Co-codamols because of 2 crushed vertebrae.
Thanks again,
Ron.

[stanley-1960Participant]

Hi Ron,

I currently have shingles 6 months post SCT.I just brought the subject up a couple of days ago on my journey for comment. I echo Annette’s comments. Get Pauline to the doctors asap. I came down with it last weekend friday night and waited till monday morning to go to the hospital (bone infusion due). Given antiviral Valaciclovir and Gabapentin for the pain. The NHS will only give the vaccine to people aged 70 or 78 and 79. If not you can pay privately. As Annette has already said if your immune system is weakened it will not be given. I think Pauline has lasted a long time before contracting it as most will get it much earlier post SCT.Best of luck to Pauline hoping for a speedy recovery.

Stanley.

[roncantrillParticipant]

Thanks Stanley,
It does seem that Shingles is one of the free extras that come with Myeloma. It would be nice to pick and choose or maybe negotiate a discount as an alternative but for the moment we are more than happy with the 5 years post SCT remission. Pauline is approaching 71 now and her GP is brilliant so I think we should wait the few hours until morning rather than face the uncertainties of A & E.
Ron.

[jmsmythParticipant]

Hi Ron

My husband had shingles last year (1 year after SCT) it was bery painful and he still gets some pain. Consultant prescribes aciclivoir anti virol and pregabalin for pain. He has been on them for over 1 year and consultant in No hurry to take him off them. Frank is 72 and he got a letter from GP to get the shingles. He checked with consultant and she nearly had a fir and said under no circumstance was he to get the vacation and she said that she was writing to GP as myeloma patients should not get vacation

Hope Pauline gets sorted soon

Best wishes Jean

[roncantrillParticipant]

Hi Jean,
Thanks for the reply and good wishes. I can understand why there is a reluctance to give the vaccine but when there is an almost certainty that it will develop anyway I should have thought that there was some room for a reasoned response. I suppose that with the present pressure to run away from making risky decisions there is a reluctance to use ones initiative. The problem with this sort of thing is that with Myeloma and all of the associated problems we have had several close calls and when something happens which causes rapid deterioration I think a bit of panic is no a bad thing. A few minutes ago she was folded up with a resurgence of pain and Pauline does not easily react like that so I reluctantly called 111 as opposed to just waiting for the surgery to open really to ask advice so we are now waiting for a call back. In the meantime we’ve resorted to ice packs and that seems to help.
Thanks again,
Ron.

[jmsmythParticipant]

Ps Ron – Ellen and or Maggie are brilliant (on the helpline). Helped me on many occasions.
Best wishes
Jean

[roncantrillParticipant]

Thanks Jean,
We’ve never had occasion to call the helpline and, until today we’ve been very fortunate to have nearly 5 years of relative normality as all of our major problems occurred in the first 12 months. In that time the response and support from all of the N.H.S. personnel at the old Q.E in Birmingham and those at Worcester were brilliant. Thankfully, the cold compresses we’ve been using seem to have dulled the pain somewhat so that’s yet another bit of learning. I just hope that they continue to be effective.
Ron.

[andygParticipant]

Hi Ron.

If I have ANY problems I go straight to the haematology day unit or ring them for advice. I wouldn’t go to my GP or A&E. I’ve done this for over three years now and it’s what I was told to do by my consultant. We can’t afford to hang around waiting for treatment it can be fatal.

Every day is a gift.

Andy.

[HelenParticipant]

Hi Ron
I too would get the antivirals as soon as possible, the earlier they start the less side effects and long term pain from post herpetic neuralgia the better. I had shingles last year, it was extremely painful and I was very unwell for a few weeks. She has my sympathy.
we are not supposed to have the vaccine, it is too dangerous.
I understand that shingles often breaks out when the immune system is low as the infective cells of chicken pox have been lying dormant often for years in the spinal nerves, we don’t need to come in contact with anyone contagious to go down with it.
Good luck with 111! I’m with Andy …phone the haematology ward and ask them what to do.
Love helen

[roncantrillParticipant]

Thanks Andy and Helen,
We’re on day 3 of medication and the pain has subsided considerably and Pauline just complains of feeling “Rubbish” and loss of appetite/nausea. The rash has now all joined up and beginning to weep, covering most of he left chest, shoulder, upper arm and neck but causing no discomfort.
The 111 call was handled efficiently apart from the fact that the Doctor somehow got the wrong number which seems to happen a lot with our particular combination of digits so he had trouble getting through. He finally arrived at 1:30 am Monday, 6 hours after the call bringing the antiviral with him and pretty well accepted our own diagnosis. He had been well briefed and was adamant that the call was absolutely necessary. I checked with the surgery the next day to query the prescription etc. and a GP called back and was very helpful and reassuring. All in all most of the delay was down to our confusing the early symptoms with an existing probable cause of the pain. She is on 800 mg Aciclovir @ 4 hours and 10mg Amitriptyline 1 or 2 at night. The GP said that they usually start at 25mg but given the reduction of pain and the Nausea I might just try one tonight.
Thanks again for the helpful comments and reassurance,

Ron.

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