I have GCA (diagnosed Feb 2017) I am currently on 7mg, (supposed to be reducing 1mg a month and should by now be on 6mg, but couldn't cope so went back to 7mg). However my problems started end of Nov. 2017 when I was on 8mg. and tried going down to 7mg.
Problems started with diarrhoea (diagnosed as food poisoning). A few days later I had sharp, stabbing pains in the left side of my chest, under my breast. I was checked out at the hospital for either a possible blood clot or heart problems. Given the all clear on them.
Stabbing pains continued (very severe), but a few days later I also developed soreness in that area (so much so I couldn't bear anything on my skin in that area), burning feeling on the skin, itchiness, but too sore to scratch, and numbness. These were all over my breast and round my left side.
In Dec. went to the doctor. She diagnosed a trapped nerve and gave me Amitriptyline. No use at all and nasty side effects. I went back to her yesterday (23rd Jan) because the pain is awful and I couldn't stand it any longer, She has given me Codeine Phosphate 15mg and Gabapentin 300 mg 3 x a day, but so far they haven't relieved the sharp stabbing pains at all.
I am wondering could I have reduced to soon? Has anyone else experienced these symptoms while reducing?
Thanks for any help/advice you can give me.
Written by
mrstrestle
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That is a very fast reduction for someone with GCA - but if it worked this far that is great. Until this is sorted out though I don't think I would reduce any further - or even try to do so. Pred is sometimes used to reduce the symptoms. But I doubt this is due to reducing.
By the way - do resist the shingles vaccination. It can cause PMR! And doesn't do a lot in people with lowered immune systems as you have due to pred.
Thanks for this PROpro. I do value your contributions on here.
Yes I have had chickenpox and I thought it was shingles, but the GP says not, that "shingles without a rash is rarer than hens' teeth"! She says it's a trapped nerve in my back.
Don't want to become addicted to painkillers, but I have to take them for a week before I'll see any benefit re: the pain. I'm desperate after almost two months of this unrelenting pain so I shall take them.
I shall follow your advice re: not reducing at the moment in fact I think I may go back to 8mg a day.
Rarer than hen's teeth doesn't mean it doesn't happen. Just because SHE hasn't seen it doesn't mean it doesn't happen. Doctors who can't see the zebras have been known to kill people. Not likely with shingles without a rash but you know what I mean. A colleague was sent home from A&E as "too young for a DVT" - he died a few days later. He'd had a kick on his shin playing football and the symptoms were typical.
Try a different doctor. It can be proved. Thought it is a bit unpleasant
What do you mean by it can be proved? Do you mean there is a test for shingles? If so, I'll ask for it. I agree with you, but you know what doctors are like - they think they're gods yet they seem to know very little about GCA.
I've already changed doctors once, within the practice, and I don't see any point in changing again because none of them are particularly knowledgeable about this disease.
"Your doctor may test your blood, cerebrospinal fluid, or saliva to identify the presence of VZV antibodies. This will allow them to confirm a diagnosis of shingles without a rash. However, these tests are often inconclusive."
But after this time - I suspect you are into the post-herpetic neuralgia stage.
Are you sure you didn't have a very mild rash you didn't notice?
No, there was definitely no noticeable rash, my husband also looked closely, with a magnifying glass would you believe, and he couldn't see anything either.
I still think though that it is/was shingles.
Anything that I can get through the Pred, apart from diabetes, I have had, including hallucinations, ruptured Achilles tendon, crumbling teeth to name but three.
I had achilles problems - after being given a quinolone antibiotic while on Medrol. But I realised what was happening very quickly, got crutches and a boot and nothing worse happened than 9 months on crutches.
I'm sure it was shingles - all fits. Sorry you have eejit GPs.
Oh I do really wonder at doctors giving prescriptions for things that you shouldn't have while on steroids. It has happened to me also but not knowing til its too late. Why don't they know these things!!
It wouldn't have been so bad, but when I felt it I looked online immediately and went up to the doctor. Who said "Oh, I've heard of that but never seen it before!". You have now lady!!!
I was furious - and so angry with myself for not checking sooner. The pharmacist hadn't said anything either - and it is always the same one in the village. Totally unnecessary!
My mom was recently diagnosed with shingles on her scalp by her dermatologist. She never had a rash. He immediately put her on meds and by the time she finished them she was way better. She had a shingles vaccine back in 2009 and thinks she had some protection from that....we will never know for sure....but she is 92 and I’m thankful that she was quickly diagnosed and her recovery has gone well.
I'm a newbie/lurker, was diagnosed in Sept 2017, now down to 10mg from 15mg pred, and waiting patiently(!) for a rheumie appointment. Just to say that in around 2002 when I was in my late 40s, I had sudden muscle spasms and extremely sharp pains (mostly) around the left side of my waist, it got so bad I went within a few days to my GP (older, v experienced) who, after listening to my symptoms, immediately diagnosed shingles, even though there was no sign of a rash and it wasn't the conventional 'girdle' pattern of pain. He prescribed high level analgesia, which gave relief and within a couple of weeks I was mostly pain-free (don't know if quick intervention avoided the post-herpetic neuralgia PMRpro mentions). Such a shame some GPs go by the book and won't entertain the possibility of non-standard symptoms for a specific condition (as with PMR/GCA!). Hope you feel better soon.
Sorry I haven't replied sooner, but have had a few bad days both from the "shingles" pain and the GCA so I've been in bed.
Thank you all so much for replying to me. It's been most helpful.
The tabs the GP gave me has eased the sharp stabbing pains in the last day or two. They are not as fierce or as frequent. I was told it would be a week before I felt the benefit of them. However, if it's shingles (and I think it is) this would be the time when I would expect to start recovering, so who knows? Certainly not the docs. All they do is throw tablets at everything. No wonder so many people are addicted to prescription drugs!
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