GCA diagnosed 3 weeks ago

[allykat]

This is all so new to me. Had a headache for 18 days, sore scalp, night sweats and sore jaw although thought this was because of a careless tooth extraction in July 2014. After seeing two different doctors, I was sent to A&E and was immediately diagnosed with GCA. No biopsy was done. Hospital put me on 40 mg prednisolone but when I saw a third local doctor who has treated three other cases in the past 3 years, he upped it to 50 mg prenisolone. I have sinced dropped to 40 mg and am fine. My question is.....if he drops it to say 30 mg after next bloods check, how quickly would I notice a relapse or is there no hard and fast rule?

[bposiv]

hi allicat my story same as yours newly diagnosed mid feb straight on 60mg then 40mg per day march dropped 5mg to35 april down 5mg to30mg each drop has been over 4 weeks provided bloodtests ok hope this helps as aguide everybody is different don't panic let your doctor do his job best of luck with it

[allykat in reply to bposiv]

Thanks bposiv, I have another blood check on Friday and am hoping for another reduction. I have complete confidence in my "3rd" doctor and wish I had seen him in the first place as he would have recognised the symptoms right away. The first doctor simply told me to take stronger pain killers and that he was sorry that he didn't have any answers for me. Shocking!

[SusanneM in reply to allykat]

I was diagnosed with GCA end of 2014. Started out on 40mg Pred. Dropping 10mg in one go is usually too fast. At the higher end, you may be ok to drop 5mg, but I find that 2.5mg is the most I can manage weekly at the moment. I managed to taper down to 25, but then had a flare due to getting a severe chest infection. Had to go back up to 40.

I find that when I have tapered too soon/quickly, my GCA symptoms return by day 3 of the taper.

Good luck. I'm glad you have a doctor you trust. I've had really bad problems with my practice and am about to change to another surgery.

[PMRpro Ambassador in reply to allykat]

Yes - I saw my "usual" GP for over 5 years before getting a PMR diagnosis, mainly in fairness because i was fairly young and had normal bloods. It didn't alter the fact I did have symptoms of some form of arthritis - though one rheumy snarkily told me it was OA and implied that was beneath her. When it went mad another rheumy was convinced it was anything but PMR (beneath him too?) but a different GP happily accepted the diagnosis of PMR on the symptoms plus response to pred in 6 hours! She'd not been there half the time because of 2 or 3 lots of maternity leave.

In fairness to your first doctor though - GCA is a rare disease, rare enough to have orphan status, and the vast majority of doctors have never seen a case, to have seen 3 is unusual. What concerns me as much as anything is their determination to ignore night sweats - which can be a sign of cancer so you would think they might look a bit harder for a cause. But of course we are predominantly ladies of a certain age!

However - to return to your first question: any reappearance of any of the symptoms should send you back to the GP you are under, and I would insist on seeing the experienced one. Unless you had visual symptoms, 40mg is generally felt to be enough to manage GCA that hasn't started to affect the blood supply to the optic nerve, going to 50mg for a short time was making sure. You may be lucky and find the blood tests mirror how it is going but they do sometimes lag behind the return of the inflammation.

I'd also ask the GP to consider letting you reduce in 5mg steps as that does pose less of a shock to the body once it is used to the pred. Long standing recommendations are that a reduction, even at the higher doses, should be not more than 10% of the current dose.

I do hope you will at some point revisit that first doctor to point out to him the diagnosis he missed. It is a good education process - my daughter has been messed about all winter with tonsillitis and chest infections that simply wouldn't go away, being dismissed with "it's the time of year". No, they and the breathlessness that was getting worse were signs of uncontrolled asthma and ended up having her blue-lighted to hospital with a really severe asthma attack. She had had it in the GP practice and they hadn't had a clue what to do. They do now and they also treat her complaints far more sympathetically when she returns with symptoms.

Here's wishing you all the best for an uncomplicated recovery - they do happen when the doctor isn't desperate to get you off pred too quickly. It is a long haul flight - but 2 years can and is achieved with a slow reduction.

[allykat in reply to PMRpro]

Thanks for your support. I am coming to terms with this and realise there isn't going to be a quick fix. Prior to GCA, I was drug free, ideal weight, reasonably fit and at age 62, I am hoping all these will aid in the healing process. Optimistic? Yup!

[PMRpro Ambassador in reply to allykat]

Loads of us could tell a similar story - I can't say I was ideal weight but I was at the gym most days and took maybe one dose of ibuprofen a year for a headache. Then PMR turned up - actually with some GCA symptoms but none of them were recognised, the thigh claudication was awful and messed up going to the gym! I had scalp pain for a few weeks and also had jaw pain when chewing hard things but didn't think anything of it. So I almost certainly have GCA but it didn't affect my sight and all has settled on well under 15mg of pred. Some things took a very long time to go but now I'm fine on 4mg - but atrial fibrillation means a load of other medications. However - better it is known about and treated than left alone.

[bposiv in reply to allykat]

having confidence in your doc is great my new doctor was on to my syptoms straight away I had gone blind in my left eye twice the previous day and he said take the tablets before I leave the surgery my other doctor was treating me for arthritis but I hadn't lost vision before I saw him so unless they come across this you don't get the GCA diagnosis early enough apparently severe headaches temporal or loss of sight in one eye are the two best clues to the doctor I am under orders any visual problem or temporal headache straight to A'E if icant get to docter good luck

[cassey1879]

When they dropped me from 40 and only 3 weeks on 30 to 20 I noticed it in a couple days My raised arteries came back on my forehead, plus the head aches, some eye pain and a little jaw pain. When bumped back to the 40 took about a week and they seemed to go away, except still have edema in my ankles this time. Hope this helps. Hang in there.

[Telian]

Hi allykat

Thank goodness for the 'third doctor'. There are no hard and fast rules as such, you will see as you read everyone's experience that each reduction plan is individual to that person. If you reduce to 30mg and suffer what appears to be a relapse that may not be the case. I and many more find that is too big a reduction in one go and the returning symptoms usually mean you're body is not ready for it. Rule of thumb is to get your bloods done, go back to the previous dose you were symptom free on and speak to your doctor. It can take anything from two to three weeks until things have settled. Once that happens a smaller reduction plan needs to be agreed with your Rheumy, you don't mention it but do you have one? Then there is the other side effect called steroid withdrawal, these produce the same symptoms as the illness and usually go within a week or so, if that is the case, you then know it's that as opposed to inflammation levels still too high. I'm afraid it takes time to get to know your body with this illness but understanding it is key.

Best wishes

[allykat in reply to Telian]

This is a post from three years ago but thanks for your message.

[Telian]

OMG - I must have been browsing - still got fog head - how are you now then any of it ring true?

[allykat in reply to Telian]

Coped fine with GCA and got to Club Zero in October 2017. Then got PMR (was likely there all the time) so am now reducing again. Always with a fantastic GP (has successfully treated GCA 3 times before. Not practical to see a Rheumatologist as it would mean a 6 hour train journey each time.

Cheers

K

[Telian]

Wow, am jealous have never reached CZ since 2014 and too have both - still yo-yoing a bit. See what you mean about the train journey.. but It's good to have a fantastic GP.