Widespread Shingles AGAIN! What treatments have other people been given?

[KatieA]

Hello, I'm just returning to "life" after a month of Shingles, this time on my face, scalp, inside mouth, on stomach (and if the pain was anything to go by, it was in tummy also!!.) I had an endoscopy in Nov. whilst having a Shingles attack on my face, and I believe it was this that drew the virus inside my body!!

I have had Shingles for 14 months, and apart from countless courses of Aciclovir, which only seems to make me feel sicker, I have been given no other support, and the attacks are worsening in pain and coverage.

Not suprisingly, I became very depressed over Christmas and New Year, and having already dropped much of my medicine due to constant vomiting, I decided to carry on the detox and have ceased taking Hydroxycloroquine, in the hope that it is this, which is causing the intractable Shingles attacks. NB. My GP calls Hydroxy' an Immune-Suppressant, wereas my Lupus consultant calls it an Immune Regulator .......... it's the only thing I can think of to try and HELP MYSELF.

Does anyone else have experience of intractable shingles, and actions taken to tackle it?

[poodlegal]

hiya,yes i had 3 bouts of shingles when i first went on all my meds including immunesurpressants,i had them on my neck,after the third bout they put me on long term aciclovir for 8 mths and your right they do make you feel sick but stopped my shingles,then last month after coming off meds for 2mths due to low white blood count as soon as i went back on them within a week i got shingles again,had a 7 day course of aciclovir 10 tablets a day!! and they cleared for how long i dnt know,they are awful i feel for you,you seem to have a bad strain of them,they also make me feel soooo tired(more than usual) i know its tempting as i do it myself but dnt stop your important meds without your doctors advice,u may need them to change the dose or try different meds?u need to go back to your doctor and tell them you want to know of other treatments for shingles, baking powder mixed into a paste and spread over the blisters really drys them up and soothes itching,sorry i havnt got any brilliant answers for you,i hope you get it sorted soon xx

p.s i love the little dog on your profile,i have a little black and white poodle,very unique

[KatieA in reply to poodlegal]

thanks for yr reply Poodlegal. I don't have a good relationship with any of my doctors, GP or specialist - no-one wants to take "control"..... hence I just have to make my own decisions, so its good to hear advice from other sufferers - I will give the baking powder a go. I have doubled up on painkillers (cleared it with the "out of hours" doc at 2am last Tues.) and am at least able to eat & sleep to some degree. I have a GP appt. scheduled for this Thursday so will discuss then, but I can't imagine taking 10 aciclovir tablets a day, the very thought makes me want to throw up .......

P.S. my dog is a poodle cross, Cavapoo, a poodle crossed with a King Charles Cavalier. She's a beauty and is currently having lots of fun in the snow. She's a lot of hard work, but provides much love, as I'm sure does yours. Rgds, K.

[poodlegal]

shes gorgeous!! yes mine does he is called harley,hes getting old though 13 this year and this is the first winter he hasnt enjoyed,took him for a walk and he was that miserable and cold i ended up carrying him round the lake!! he is my little pal i understand about the not so good doctors,i tell my gp what to give me as they dnt have a bloody clue!! really hope you get it sorted soon,take care,keep us posted xx