Hi lovely people i am on asking for your advice yet again.My mum has GCA and on her 2nd week tapering down to 17.5mg pred.She had been doing well and feeling quite good up till last Monday where she had tingling feeling in her left cheek but otherwise okay. By Wednesday she had red rash and it was bit itchy and she had touch of diarrhoe a headache and felt bit seedy. My sister suspected it might be shingles and we took her to dr on Friday and although he wasnt 100% sure he started her on antviral meds acyclovir 1 5 times a day.
She started them but had constant diarrhoe from the first one which continued into Sat aft so my dad asked our local pharmacist who knows my mums medication for advice and she said to stop taking them right away and check with dr on Monday morn. Her professional opinion is she shldnt have been given them as they arent any good.
Mum stopped taking them and diarrhoe has stopped but she still has bit of headache feeling quite seedy and generally out of sorts. Her cheek is still red but the 1 spot she has on it hasnt gotten any worse and although she had tingling itchy sensation she said its not painful as such its more like neuralgia.
Having never had shingles before im not sure if this is normal or not.
My mum also panics at anything on her face/head esp opposite side from her GCA as she lost most of her sight in her right eye due to missed diagnosis. Im no expert on GCA but ive learned such a lot from this great site and the wonderful people on it esp DL (who has been a godsend) and PMRpro and i dont think its a flare of gca as none of symptoms seem to fit.
Apologies for longwinded post my main question is really has anyone else had to stop ant viral meds because of sideeffects and if it is shingles will it clear up on its own without them?
Its just such a shame as she has been feeling so good she even managed to get a beautiful dress for my nieces wedding in Sept which was worrying her because of pred weight gain and was so happy and now this.
Thankingbu in advance x
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Buchanan16
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"Her professional opinion is she shldnt have been given them as they arent any good."
And did she express an opinion of WHY acyclovir is no good? She is going against most of the rest of the world! The general consensus of studies on its use in shingles is that it shortens the illness and adverse effects when started within 48 to 72 hours of the rash appearing. Your mother is more at risk of problems because her immune system is messed up anyway with GCA and pred.
I'm not disputing that it is reasonable to stop the acyclovir because of the adverse effect but I'm not sure her reasoning is correct, It doesn't help a lot of viral conditions - it does help with herpes zoster.
Thanks for replying so quickly and for the link.I was quite surprised by her response to not that she should stop them because she had nonstop diarrhoe but more fact she shouldn't have been given them in first place. My mums not great with some tablets esp antibiotics etc and has had to change lot of tablets until she gets ones that suit tho fortunately she has been not to bad on the cocktail of drugs shes been put on since being diagnosed with GCA.
Do antivirals need to be given within first 72 hours of rash developing to have any effect ?
I will call our gp first thing and see what he says as last thing i want is her being unwell with shingles but i also don't want her feeling even worse taking antivirals. It can be hard sometimes to know best thing to do.
My brother, who also has neutropenia, struggles with bouts of shingles. He takes valcyclovir and even if two days after his rash starts, it still is very effective for him, typically going away in a few days of taking it. I take acyclovir for herpes simplex daily to prevent it and no side effects. I too would suggest checking with the doctor but there are ways to stop diarrhea anyway - imodium being what works for me.
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