[jmsmythParticipant]

Hi all

Frank has now developed shingles (not one thing it’s another). It is very bad. Right down the right hand side of his body. He is in a lot of pain. Doctor has prescribed paracodamal for the pain. This is having no affect at all. Has anyone got any ideas that can make him more comfortable

Thanks
Jean x

[BADGERParticipant]

HELLO JEAN
I had shingles a couple of years ago it was the most painful thing I have had it was right across my back the doctor should have given him some aciclover not sure how to spell it I was given that but the best relief I had was putting organic cider vinegar on it this really dulled the pain smelt like a chip shop but it worked how are you both doing apart from this not posted much lately as could not get on the site son-in-law solved it
Love Jo xx

[jane-wrenchParticipant]

Hi there – I also had bad attack of shingles a few years ago and was immediately given aciclovir 3times a day – an antiviral medication – and now I am on velcade, I have to take it again every day as velcade makes one susceptible to shingles.

jane x

[jmsmythParticipant]

Hi JoJo and Jane

Thanks for your replys. Frank was given acoclovir. The pain relief he was prescribed was not helping him. Our pharmacist advised him the take ibrofrem our son brought it to him tonight and it’s the first time he’s had some relief. Hr told me that this morning the pain was horrendous he thought his body was on fire. He seems to be a bit better tonight. Thanks JoJo for the tip on the vinegar. I passed it on.

His new cells are 1 year old on 3rd March. On 100 day his WBC, HG, NF etc were good.. No trace of PP and PET scan showed no cancer. I was over the moon but since then – although bloods good- his potassium, phosphates are low, he’s had a pain in his ribs, bloated tummy (looks 8 months pregnant)and also something wrong with his thyroid. 8 weeks ago consultant said would organise MRI, and would get appointment for him to see bio doctor – re,thyroid. He’s still waiting. I have had enough and we are seeing consultant on 5 March, so I’ll either
get something sorted or I will be thrown out of hospital

Sorry for rant amd thanks for reply
Love Jean x

Ps JoJo how are you doing. Hope things are good for you x

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

[bandityogaParticipant]

Hi Jean

Sorry to hear Frank has shingles and hope he gets relief soon.

As for MRI scan 8 weeks! I would be shouting from the rooftop. Ian had pain in his back and got an MRI scan within 2 weeks. He also had pain i would his hip when we saw consultant on Monday and he got an x ray within 30 mins. Go to your gp and they might be able to help you.

Maureen x

[jmsmythParticipant]

Hi Maureen

Last time we were at consultants she got an X-ray of his chest. No,point in going to our doctor he is dead slow and stop. We are seeing consultant today week so hope to get everything sorted. Thanks for your reply

Hope Ian is doing well

Jean x

[bandityogaParticipant]

Hi Jean

Ian’s FLC are rising and his BMB showed 20% plasma cells so he is going on velcade on 24 March. Consultant said he was borderline and normally they would wait and see as his FLC decreased a little this month but due to his past history they are not taking chances so he will be on velcade for 6 cycles . I hope he doesn’t have too many side effects as he is getting stronger and can now walk with 1 stick and sit in a normal chair.

Hope you get some answers.

Maureen x

[petesilverParticipant]

Hello Jean

He has all my sympathy, I had a severe attack of shingles on my thigh up to in a very delicate place 🙂 and was actually hospitalised for over a week and put into isolation and on  intravenous drip of  Acyclovir  nothing seem to help very much I was slapping on cream they gave me but to be honest it was not of much help really, someone did suggest Aloe Vera gel which I did use I think it helped a bit.

I do hope you can find something that might help relieve it, unfortunately the doctors do not seem to have any answers for is I found pain killers did not even help.

Sorry to send such a miserable message, I do feel sorry for Frank, shingles is horrible and for me it was almost as bad as my SCT.

[jmsmythParticipant]

Hi Pete

Yep! He has it there as well. How long does it last. Doctor told him that once the bolsters break he will no longer be contagious. He seems a little brighter today. The ibrofrem seems to help him. The pharmacist today told him not to put any cream or lotion on as the applying of it could aggrivate the rash. I do feel helpless as there is nothing I can do to help. Did shingles affect your appetite? He hasn’t eaten much since the rash appeared

Thanks all for replies
Jean x

[petesilverParticipant]

Hi Jean

Think when you feel like that eating seems secondary but I am sure it will pick up, sorry to say it again but it it so uncomfortable and you feel desperate because there is not much you can do. I still take aciclovir daily to stop it coming back even now which I have been told to carry on doing

I know when my son was pickled with chickenpox spots (shingles is caused by the same virus) all we could use was calamine lotion I’m not sure you can even buy it now.

I hope you soon get the MRI scan, should chase it up, with  my consultant I get it within a week and I have had many since diagnoses in 2004.

all the best

Peter x

 

[jmsmythParticipant]

Hi all

I contacted doctors and he checked for me re SCT and thyroid doctor app. The appointment for thyroid doctor was requested on 9 January. Doctor did tell me that doctor concerned had a long waiting list. I asked him to check the MRI request and was told there wasn’t one. He said he would phone hospital and find out

Thanks all
Jean x

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

[HelenParticipant]

Dear Jean
I’m sorry to hear that Frank has shingles, I’m still suffering with the pain though all spots have gone now. I’ve had codeine, paracetamol and Amitriptyline, all the time and at maximum doses for about 2 months. I’ve weaned myself off all the codeine and some of the paracetamol but it’s very slow. As I’m now back at work too it’s a bit confusing as to what causes what but I’m dreadfully tired a lot of the time.
Anyway I’m feeling better now than I did 6 weeks ago so while it may be slow, it is progress.
I do hope Frank feels better soon, don’t wear yourself out!
Love Helen

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

[jmsmythParticipant]

Hi Helen

Glad you are eventually getting over the pain. I asked our doctor and he said the pain can last months. Frank has just got up and he said he “thinks” the pain is a bit easier. He says he is now suffering from “sleepy sickness”. He’s gone from 5 hours sleep a night (always been his sleep pattern) to nodding off a at the drop of a hat

Any holidays planned. This damn weather is so depressing

Keep well
Love Jean x

[sanParticipant]

Hi Jean and Frank, sounds like a super pharmacist he knows his stuff, hope that Frank feels better soon, in the meantime sleep is good and easy to get down nourishing food, lets hope that Franks Consultant can throw some light on these other symptoms, is the rib pain to do with the shingles? i wonder, bananas are good for low potassium, take care San X

[janwParticipant]

Hi Jean,

I still remember the burning and sharp pain associated with shingles when I suffered an outbreak of the virus all down the right hand side of my body a couple of years ago. Most of my right arm was covered in a mess of large red blistering, itchy patches. I was lucky in that the pain only lasted for around 6 weeks, but I struggled with my appetite and fatigue, losing over a stone in weight. My light chains increased by over 400, but after recovering from shingles my light chains reduced by 200 over the following 2 to 3 months. I have to be careful using ibuprofen because it easily irritates the lining of my stomach causing severe abdominal pain. I was already prescribed tramadol and fentanyl patches for my myeloma which helped with the pain.

I hope Frank feels a lot better soon.

Jan x

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