GCA False alarm! How quickly can I reduce pred?

[Omanain]

Diagnosed PMR April 2018.

Two weeks ago I had a GCA scare – bad headaches, jaw pain and visual disturbance.

I went to the eye clinic at the hospital and was given 60mg Pred immediately and two days later had a TA biopsy.

The headache resolved, the jaw pain didn’t (still have it so probably a weal muscle) and the visual problem was not typical of GCA – more like a migraine type problem. The biopsy was negative.

The doctor at the eye clinic is fairly certain it is not GCA but will see me as an emergency if I have any troubling symptoms. I am confident he is right.

I took 60mg Pred for 9 days and was told to reduce by 10 a week until I got to 30mg by which time I would have an appointment with a medical eye doctor.

Do you think I could safely decrease faster than this? I was down to 6.5 for my PMR when this happened.

Would dropping 10mg every 5 days be OK do you think? I am not doing too well on such high doses, my whole system is over acidic, I am very agitated and can’t sleep more than a couple of hours a night.

Would really appreciate any advice. Thanks.

[SheffieldJane]

I just wouldn’t risk deviating from my doctor’s instructions. You may be helped by over the counter anti-acids like Rennies. Your doctors can’t tell you that you definitely don’t have GCA. Perhaps the doctor could give you something for the horrible agitation that you are experiencing. According to other posters it does settle. Sorry you are in this predicament but it is better to be safe than sorry.

[Omanain in reply to SheffieldJane]

Thanks Sheffieldjane. The symptoms I had did not really fit once it was all properly investigated, and the high dose of pred made no difference to the pain I am still getting in my jaw! Once I sort this out I will go to the dentist and see if he can work it out! It was probably some kind of migraine attack. The brain scan I had after a TIA 3 years ago showed some white spots which the doctor said "He didn't know if it was anything to worry about or not"!!! But seeming women who start migraine for the first time late in life usually have some sort of abnormality in the brain!

[Lee1945 in reply to Omanain]

White matter hyperintensities are lesions in the brain that show up as areas of increased brightness on an MRI scan.

The prevailing view is that these are markers of small-vessel vascular disease.

You can try to Google psych scene hub and check it out.

I refuse to let it worry me and just accept it as another problem with ageing.

[PMRpro Ambassador in reply to Lee1945]

On the other hand there are very few people of our age who don't have small areas of white matter in the brain, it is pretty much a normal part of aging, and the whole point of the imaging is to see abnormal patterns,

[Soraya_PMR]

I think that 10mg per week is quite a hefty drop and in your position I’d be inclined to stick with the doc’s advise. A negative biopsy is not necessarily negative IYSWIM.

Ranitidine for acidity?

Amitryptylline to aid sleep? D/w your doc.

[Omanain in reply to Soraya_PMR]

Thanks Soraya. I am taking Ranitidine but it is not really effective at this dose of pred. I am very prone to stomach acid at the best of times but at the moment my whole system is acidic!! Hopefully the sleep thing will resolve itself once I get the pred dose down.

[Lee1945 in reply to Omanain]

Drink lemon juice in hot water to help reduce acid

[DorsetLady PMRGCAuk volunteer]

In this instance definitely follow doctor advice.

Plus, as others have said a negative biopsy does not mean you don’t have GCA, it just means the sample of artery tested didn’t have any GCA in it - not the same thing at all!

My temporal arteries were never affected, but I most certainly had GCA.

[Omanain in reply to DorsetLady]

Thanks DorsetLady. I know you can get a false negative but my other symptoms didn't really fit once it was investigated. I am hoping to get at least back to 10mg and wondered how quickly I could safely do that without some kind of adrenal crises!

[DorsetLady PMRGCAuk volunteer in reply to Omanain]

You won’t get an Adrenal crisis above 10mg of Pred - because that’s higher than your body would naturally produce in cortisol.

As we always say everyone is different - and the natural cortisol level produced is roughly equivalent to between 5-10mg Pred- so we go for 7.5mg as an average.

[Omanain in reply to DorsetLady]

Thanks. That is very reassuring.

[PMRpro Ambassador]

The reductions down to 10mg can be quicker if all you are doing is reducing to stop rather than to find a correct dose. You probably COULD reduce by 20mg immediately since 40mg is the normal starting dose for GCA without visual symptoms but you will find such changes quite disturbing too. It is common to use doses IRO 40-50mg/day for up to 2 weeks for a few things, sudden hearing loss, Bells palsy and so on. And then they usually just stop the entire dose. That must be quite a shock to the system,

Like the others I would listen to a doctor - ask your GP maybe since they will have used high dose pred for such patients which then are reduced very quickly.

[Omanain]

Thanks PMRpro. I am unable to get hold of my own GP who I know would listen to me and consider what I was saying even if he said no! I am as certain as possible that I do not have GCA so yes, I just want to get off the high dose of pred as quickly as I can without causing some kind of adrenal crises. I went from 60 to 50 last Thursday and tomorrow will go to 40. I am having disturbing symptoms anyway so would like to get it over as soon as possible. Couldn't be helped, I obviously wasn't going to risk my sight!

[PMRpro Ambassador in reply to Omanain]

Oh absolutely - no contest!

[Hollyseden]

I have to agree with other advice that you should listen to your doctor but my doctor gave me very different advice. Similar to you, I wakened one day with horrendous headache. Doc phoned rheumy who upped dose to 60. Had biopsy next week and told to stay on 60 till results came in. (meanwhile headache had disappeared) Results took weeks, while I climbed walls on 60 and had other problems with that dose. 🙄 Anyway, negative result and my doctor told me to go back to 15. People have been surprised at this but worked out ok for me. Good luck with your reduction.

[Omanain in reply to Hollyseden]

Thanks Hollyseden. That is very interesting. I have a feeling that if I could have seen my own doctor he may have considered something similar!

Are you OK now?

[Hollyseden]

When I was first diagnosed, my young doctor had to look up treatment on her computer. Luckily for me, most of her advice is in line with stuff I've read on here. Apart from me refusing alendronic acid and omeprazole 😄 we get on quite well. She now says "you seem quite well informed (thanks to this forum) so just continue with your taper at your own speed" I've been lucky and only had one slight blip when I went back up to 6.5 from 4.5 Now back down to 4.5 again so all's well 🤞 for now.

[Telian]

It’s not advisable to create your own taper without doctor’s advice. I had much the same symptoms you describe and now have GCA and PMR.

A typical taper for those with GCA can be from 60mg to 40 then by 10s to 20, then by 5s to 15 and 2.5s to 10, then 1s and .5s.....but as we’re all different it can deviate along the way. Doctors want us off the high doses as quickly as possible too - discuss your thoughts with yours.

You could be prescribed Amitriptyline for the sleep problem - it will help you calm down and you can safely just stop it as you get lower on pred. I did when I got to 4mg.

‘The visual problem was not typical of GCA’.....

What is typical?

I was treated for migraines initially, but I knew they weren’t - until I lost the sight in one eye and my GP fast tracked me to rheumie - I was diagnosed with GCA via Ultra Sound - had a negative TAB three days later as they didn’t get enough of the ‘bad bit’ - plus being on pred is already reducing the inflammation.

You’ve a lot going on that needs close monitoring.

Let us know how you get on.

[Carver63 in reply to Telian]

same as me. thought it was a migraine that did not quit for 10 days. diagnosed as TA (temporal Artiritis) finally went to doc went on 60 mg pred week later they did the biopsy (negative) - headache slowed but has always presented itself even today 13 months later. had 2 major relapses and Actimra was added in Nov . this has eased the Prednisone reduction effects and kept my head pain in check. Still a mess wrt side affects but generally feeling better.

[Carver63]

similar event 13 months ago for me. discuss with your doc about slowing the reduction rate. i am on my 3rd drop program. the first two were too fast and i had reoccurring problems. now down to 6 mg reducing dosage at 1 mg / month. i am also on Actimra too help but Prednisone is tricky to the body and rushing out seems to cause more problems, There are many stories on this web about reducing prednisone and it seems like we all have a slightly different path. Good luck and stay safe.