Shingles

Please post here your experiences of MDS as a patient, carer, family or friend

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chris
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Shingles

Post by chris » 20 Jun 2014 08:02

Hi to all

I have just got over shingles. Spent a very, very itchy and painful 2 weeks. Was prescribed antiviral medication but advised by haematology prof not to take it as it was already over 72 hours after symptoms started so would not be very effective. Thankfully, the healing process of blistering and scabbing seemed to follow normal pattern and I don't seem to have residual pain over the affected area. I felt a little surprised when diagnosed as I thought shingles affected much older people ( I am 63, well 64 next week!).

I wondered if my low white cells made shingles more likely as it is said that shingles occurs when people's immune systems decline? I haven't had a blood count done for a while and was due an appointment while I had shingles so was sent away from clinic in case I infected anybody else so am not sure if my white cells have taken a dive. Have any of you experienced shingles?

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
davidmiller

Re: Shingles

Post by davidmiller » 20 Jun 2014 12:38

I am surprised that your doctor told you not to use antiviral medication after the 72 hours as my company used to produce an antiviral medicine which was certainly still effective in preventing post-herpetic neuralgia. I am being treated with Vidaza and I have been taking Aciclovir daily since Sept 2011 to prevent mouth ulcers and shingles. However it has been established that this product has no prophylactic effect and I have therefore been told to stop taking it unless I do suffer from either of these conditions. Pleased to hear that you have not had any subsequent problems.
David Miller
davidmiller

Re: Shingles

Post by davidmiller » 20 Jun 2014 13:30

Dear Chris. One further thought, you can't pass on shingles to anyone else by contact.so there was no need to stop you attending the clinic. If you Google shingles there are numerous sites which cover this topic iincluding Wikipedia and NHS.
Regards David
chris
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Joined: 01 Dec 2009 21:52
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Re: Shingles

Post by chris » 20 Jun 2014 18:22

Hi David

Thanks for all your comments. I know shingles itself cannot be "caught" but people who have never had chickenpox or who have a compromised immune system e.g. on chemotherapy or steroids can get chickenpox from somebody with shingles IF they touch the blisters i.e. it is a contagious disease. This was very unlikely given where my singles were but the hospital decided that to take blood from me would mean that they would have to deep clean the room afterwards so I was only able to have a quick chat with the Prof. I actually welcomed his advice because I did not fancy any of the potential side effects of the antiviral meds while possibly not gaining benefits. He qualified it by saying to take it if the shingles seemed to be worsening.

Likewise, I was surprised that you were being prescribed an antiviral medication re prevention of mouth ulcers as I thought that was a bacterial problem? I know some practitioners prescribe prophylactic antibiotics and a chlorhexidine mouthwash for ulcer prevention as I was when I was first diagnosed and it didn't seem to work and I got badly brown stained teeth which even a dental hygienist has not been able to remove! I decided I would put up with the ulcers rather than look like an old hag!!! Still, you seem to be off them now so I hope you don't start to suffer from ulcers as they are ghastly. I find salt water rinses help.

Anyway, take care.

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
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Re: Shingles

Post by MollyP » 21 Jun 2014 16:37

Hi Chris
Glad to hear you are over the worst! Xxxxx
Hopefully you will have tomatoes to keep you smiling, mine are our the front of the house in the sunniest spot growing nicely.
Love
Molly
Xxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
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Re: Shingles

Post by punda milia » 28 Jun 2014 11:47

Hi Chris

I am so very sorry to hear that you have had shingles. You are such an inspiration to me in that you cope so well with life despite being quite unwell. I was only saying to my husband last evening how amazing you are in that you have only been on anti biotics once in many years. Enjoy the produce of your allotment and TRY not to overdo things.

Diana
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Shingles

Post by chris » 01 Jul 2014 22:40

Dear Diana and Molly

Thanks both for your kind replies. Over the worst now and fortunately no sign of any post herpetic neuralgia (nerve pain). Definitely not recommended and I sincerely hope I don't get it again!! Actually, Diana, I don't really think of myself as unwell - just potentially unwell!! I think I am very, very lucky in as much as most of the time I really do feel quite well and my MDS currently does not affect my red cells too much so I do have a decent amount of energy. I do try to avoid infections by making sure I keep away from people with obvious and recent infections, avoid social kissing and hand-shaking, use lots of hand gel, wear gloves when travelling on public transport and generally try to eat a healthy diet (the allotment really helps!). The upper respiratory infection I got in January followed my daughter's wedding where I know there were some guests who were still poorly and I got it 48 hours later!! Interestingly, my white cells did improve when fighting the infection but clearly not enough!! Hence the antibiotics - they really worked but the side effects were horrid- which is why I try to avoid them if at all possible.

Just had my son's wedding this weekend so I can now relax a bit more. 2 down, 1 to go - in September. It's enough to give anybody shingles!!!

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
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Re: Shingles

Post by punda milia » 11 Jul 2014 10:43

Hi Chris

How amazing that all your children are being married in one year. I found my daughter's wedding exhausting and it was before I got the NHL etc.

Best wishes and look after yourself

Diana
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
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