[avantrompParticipant]

Hello Jean
I thought I would just give my bit.I caught shingles 2 years ago and still have nagging pain on my back. I have been taking Revlimid for 4 years with no neuropathy but have recently been getting cramp in my toes.I decided to be proactive and (with the permission of my consultant) started taking B12. All my shingles symptoms came back more severely than originally. Within a week of stopping the B12 they had mostly gone. I intend to steer clear of vitamins etc. in future unless prescribed for me.
I found that a hot shower on my back helped a lot. I have read that a cream based on hot peppers also helps but I couldn’t find any at the time. All the best to Frank and I hope it is soon over. It seldom lasts as long as with me.
Annette

[jmsmythParticipant]

Hi San thanks these shingles certainly get around. Frank has had the rib pain for some months. Long before shingles. I asked our doctor if consultant had ordered MRI scan as she said she would but she hasn’t. Seeing her Wednesday so will investigate.

Jan do light chains alway increase with an attack of shingles? Franks consultant does not like ibuprofen – if she had her way it would be banned. But as it’s the only thing that gives Frank relief – he tries not to take too many in a day. Doesn’t like taking any pain killers

Annette it’s interesting what you said about band pain. For years Frank has suffered back pain. Consultant said something wrong with a lower vertebrae but not myeloma related – an old injury. It disappeared about 4 months ago and it’s back today with a vengeance. Frank thinks it’s coming from the shingles. Something else to ask consultant

All of your advice and comments are very much appreciated

Keep week
Jean x

[janwParticipant]

Hi Jean,
I’m not sure whether a light chains increase with myeloma patients when they have an outbreak of shingles. A couple of years, I asked this question at a myeloma information day to one of the consultants and the answer was possibly, mainly because the immune system will be fighting the shingles virus which leaves the immune system more vulnerable for the myeloma to have the opportunity to increase a little.

Over the last four years, I’ve been lucky to only experience two colds and shingles. On all three occasions, my light chains showed a sharp increase by 200 for each cold and 400 for shingles. However, once I had recovered from the colds/shingles the light chain numbers would reduce over the following couple of months, but not to their original numbers because there appeared to be a slight increase after each illness. This is one of the reasons why I try to steer clear of catching a cold, not only because it takes me a good six weeks to shift the cold, but because of the overall increase in light chains.

If Frank is experiencing back pain, I would certainly ask about further investigations and ask whether all of his blood results are OK. I’m still taking daily tramadol and fentanyl patches for the back and rib pain associated with the collapsed vertebrae some 4 years ago and myeloma bone pain. The zometa has helped reduce the bone pain. However, the pain usually increases if I have been too active, or have sat for too long on a hard chair, or sat with a poor posture or have lifted some items over more than a couple of pounds in weight, such as a full kettle or bag of shopping. I have to listen to my body and take time to rest, otherwise my pain increases.

Regards
Jan x

[jmsmythParticipant]

Hi Jan

Thanks for getting back. Frank has been lucky as far as infections go. He’s had the odd cole, which like you takes him about 6 weeks to get over. But no infections, thank God. Shingles has been the worse. I record his bloods in the Myeloma diary and they are all within range. He I’d have low potassium and phosphates but they are now rising. Vitamin D a bit low. With franks back pain he can’t sit too long prefers to stand. He has had MRI on hopis back on a right few occasions and she keeps saying nothing to do with Myeloma injury is years old. Frank says he remember when he did it. He did have pain in lower ribs 2 years ago and MRI showed small lesion. Radiotherapy consultant said she wouldn’t do radio therapy and hoped she wouldn’t see him again. I will definitely loom out for light chain results and Ppreciate info

Take care

Jean x
Ps forgot !!! Something wrong with para thyroid !’m

• This reply was modified 10 years, 9 months ago by  jmsmyth.

[VickiParticipant]

Hi jean and frank,

So sorry to hear that frank has been going through the mill. The shingles sounds awful. That is one thing that Colin dreads. I have been told the pain is really horrible. Sometimes it does feel like its one thing after another doesn’t it. What about putting calamine lotion on it? Would that help?

Hope frank is on the mend a bit now. Hope you are ok too x

Vicki and colin

[jmsmythParticipant]

Hi Vikki

Great to hear from you hope all is well with Colin. I read Ali’s post that you have booked a holiday. When and where? You might have mentioned it before but I have a head like a sieve. Wherever it is I hope you have a great time

Shingles have been awful but today’s he’s been on good form. He took a shower and it didn’t hurt and he says the itch has gone. So just hope that every day he improves a little.

My best wishes to Colin and hope all is good with him

Jean x

[june57Participant]

Hi I was diagnosed with myeloma in 2006 and had a SCT in November of that year.  In 2008  I developed shingles on my neck and scalp and across my chest however  but this was misdiagnosed by my doctor  for 4weeks.  I eventually ended up in hospital for a week .    I have been experiencing severe pain ever since  and have been subscribed pregabalin  (2 x 300 mg)  which helps a lot with the pain .  I have also been prescribed the use of a “pain patch” Transtec  52.5  transdermal patch  which is used for cancer pain  and this has also helped .  My problem was that it was some weeks before  I was treated correctly but I understand that if you receive treatment as early as possible then hopefully the pain will not last for too long.

 

June

 

 

[jmsmythParticipant]

June it must have been terrible to get a late diagnoses. When the rash appeared Frank phoned our hospital day unit and described the symptoms. Registrar rang him back and said it sounded like shingles but to see his dr who said right away that it was shingles. He has been lucky in a way as the spots have all scabbed over. He has awful back pain which he says is from the shingles. We have an appointment to see consultant tomorrow but he has to phone to tell them how he is so they cab tell him whether to come up.

Thanks for the post
Jean

[VickiParticipant]

Hi jean and frank,

Hope the consultant visit went ok today and franks continuing to improve with the shingles. Colin told me it was very painful when he had it! Calomine lotion is meant to be good for it too.

We are going to mauritius next week for two weeks. Weird considering we haven’t been anywhere and now we are going long haul. Lord knows what it will do for Colin sitting around all that time…..we are hoping for an upgrade at the airport. air mauritius only do economy or business class. There no in between and if we had upgraded when we booked it would have put an extra £4000 on the holiday! Keep your fingers crossed for us. Mine crossed as well

Best of health to you both

Vicki and colin x

[jmsmythParticipant]

Hi Vicki and Colin

Bloods where good except for phosphates and vitamin D. Said shingles were drying up nicely and that he was lucky. Said he needed natural vitamin D so we left hospital and booked 11 days in Lanzorato. Never been so looking forward to it. Going 16 March. Mauritius how fantastic. We lived in South Africa for 10 years (much younger then) and it was quite close and one of my biggest regrets is that we never went. Friends have been, and all said it was fantastic and very romantic

We also take first defence with us and we use Synergy on a hanky on the plane to stop any airborne nastys and sniff during flight

Have a fantastic time, relax and enjoy
Love Jean x

Think this post may repeat itself x

• This reply was modified 10 years, 8 months ago by  jmsmyth.
• This reply was modified 10 years, 8 months ago by  jmsmyth.

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