Side Affects : Morning I was diagnosed with GCA in... - PMRGCAuk

PMRGCAuk

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Side Affects

Vide profile image
Vide
10 Replies

Morning

I was diagnosed with GCA in May 2022 Got to say has been a very rocky road so far .(as I'm sure it has been for a lot of people ) Stared off not to bad until September 22 Since then had 4 cracked Vertabraes been diagnosed with osteoporosis Then in February Gastroesophageol candididias (awaiting results of biopsy) But recently started getting numbness and tingling in face and pain all down one side of head and face and head and tongue MRI SCAN of my head done last week awaiting results to see neaurloigist on Thursday for results he has already said its definitely not neauralgia I successfully managed to get down to 10mg from 60mg in July last year but steriods were upped to 15mg as the Rheumatology thought I was having a flare but bloods were done on 9th

Feb and got a letter to say start reducing again as they were okay My question is does anybody on here get different side affects from different brands of steriods I feel everytime I get a different brand my side affects change Spoke to GP months ago and he basically poo pood it !!! Thank you for listening Just would be interesting to hear if anyone has the same problem x

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Vide
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10 Replies
PMRpro profile image
PMRproAmbassador

Depends what sort of side effects you mean really. There are some that are due to the corticosteroid itself and they shouldn't change - but others may be due to the fillers in the tablets and they do vary from one to another. Your GP is wrong there - it is well known that some patients with lupus react badly to certain manufacturers' versions of hydroxychloroquine for example. There CAN be a difference between brand and generic drugs but sometimes the generic is tolerated better than the more expensive brand. I am always offered the choice here in Italy. One of the cardiologists insists one form of one drug I take is better than what he perceives as the generic - trouble is, according to the pharmacist they are all generics!

What problems have you had?

Vide profile image
Vide in reply toPMRpro

Hi PMRpro The tingling in my face and pain starting from my neck up to my head including my tongue and lips going numb Some brands of prednisolone seem OK but others just really make me feel awful I have tried taking it at different times and even splitting the dose but just seems some brands make me feel awful I will need to ask for a different brand Maybe best to speak to the pharmacy Thank you for your quick reply x

PMRpro profile image
PMRproAmbassador in reply toVide

That sounds horribly allergic in nature. Tell your GP and the pharmacy which brands are fine. The pharmacist may be able to identify the differences in ingredients for you. The GP can scoff if he likes!

Vide profile image
Vide in reply toPMRpro

Thank you !!! Unfortunately I have a GP that doesn't seem to understand GCA In actual fact he keep saying my bloods have been okay since I was diagnosed and his take on it is that I don't have GCA as it was only diagnosed with bloods and ultrasound scan I have tried on numerous occasions to explain Spoke to Rheumatologist she laughed and said really !!! X

PMRpro profile image
PMRproAmbassador in reply toVide

Oh gawd ... "Only diagnosed with bloods and u/s" - what did he want - you lose your sight? And on GCA doses of pred I'd hope your bloods were fine ,,,

Does make you worry though - Covid stopped the GP education project. High time it was back on track,

Vide profile image
Vide in reply toPMRpro

Couldn't agree more !!! Still like an operation to get a face to face appointment here x

SheffieldJane profile image
SheffieldJane in reply toVide

In these circumstances, my Rheumatologist would provide a prescription even though she practices from a different town.

Vide profile image
Vide in reply toSheffieldJane

Thank you I will try and contact Rheumatology x

Zappata profile image
Zappata

I had a problem tolerating some brands and had a horrible time with my stomach until I found a pharmacy that could prescribe the ones that were ok. Have you still got a box or leaflet for the ones that were ok? That's what you need (or the name) - I found the different additives made a huge difference to what I could tolerate

Vide profile image
Vide in reply toZappata

I changed to the ec prednisolone in December First lot were okay but 2nd lot have been awful I was the same on the ordinary ones as well But unfortunately my GP has dismissed this So probably best speaking to the pharmacy x

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