Have I had GCA for the last 5yrs.

[Gatorchief]

After reading many posts from people on this site, I come to the realization that I may have been experiencing GCA symptoms for the last 4 or 5 yrs. At one time the jaw/tooth pain was bad enough to make me go to an oral dental surgeon that found no dental issues but suggested that I most likely had Trigeminal Nerve issues. While I was searching for another doctor to address it, the pain in the jaw and tooth went away and I haven’t had those symptoms for 4-5 yrs now. I do still get some temporal headaches, soreness on my head , and neck /shoulder pains. But I attributed those pains to arthritis from two cervical fusions in my neck.

My PMR diagnosis in September might be a reversal in PMR to CGA ? I’ve recently had a flare while trying to taper down from 15mg to 121/2 mg two weeks ago. The pain was not as severe as when the PMR came to a head and hurt so bad I could barley get out bed in the morning , but the symptoms now seem to be mostly in my head neck and shoulders. Occasionally my eye focus , and in my butt. Im thinking that I probably need to up to 20mg for a week to alleviate most of the pain. I went to 20mg for 3 days and back to 15mg until now. The pain isn’t bad but if it’s not enough prednisone to stop another accumulation of cortisol to bring back serious pain I’d rather take the 20mg. The reason I’m in this mess is that my GP has game at 15mg for 13 weeks and my appointment with her for the first evaluation is still 4weeks from now. What I have learned from here and other websites is that the usual taper from 15mg starts at 6 to 8 weeks and getting to 10mg by 10-12 weeks. I’m comfortable with prednisone at 10mg or less but my heart condition and possibility of type II diabetes increases with prolonged use of prednisone above 10mg. I’m not sure why she is waiting so long to test and start tapering , or she doesn’t know the typical treatment regimen? I called the office with my concerns and she hasn’t replied. Now with the possibility of GCA does it require more direct approach with her office?

[PMRpro Ambassador]

"it’s not enough prednisone to stop another accumulation of cortisol to bring back serious pain"

It has nothing to do with an accumulation of cortisol. Cortisol is just a natural corticosteroid - adding pred just increases the total corticosteroid level in the blood.

The pain is due to inflammation created by a deranged immune system and pred relieves that inflammation. What you are saying suggests to me that you have misunderstood a lot of what you have read - and a lot of it may not have been here!

You start on a dose of pred that is enough to manage the inflammation and, as a result. the symptoms. If 15mg isn't enough then inflammation will build up again - you may not need 20mg but if you have flared and symptoms return then you are likely to need more than 3 days at 20mg to sort it out. Reducing in 5mg steps is too much for most, 1mg at a time is far better and more likley to identify the dose you really need.

If you have a raised Hba1c level - cut your carbs drastically. Pred causes random spikes of BS and when they are superimposed on a BS level due to dietary carbs it can lead to steroid induced diabetes - not the same as Type 2. The greatest effect of pred on BS seems to be in a window about 3-7 hours after taking your prednisone, a bit earlier with prednisolone. If you avoid eating/eating carbs in that window it can help even more.

What is your heart condition? My cardiologists never complained about me being on pred - I have/had paroxysmal atrial fibrillation. It was associated with increased inflammation and the pred actually helped manage it.

[Gatorchief in reply to PMRpro]

I’ve had my aortic valve replaced ( mechanical valve) , radio ablation for a-fib and SVT, and CAD (50% blockage) of the right coronary, and sinus bradycardia. That for some strange reason has gone from 41bpm to a consistent 57-58 bpm for the last year. With all these heart issues it is a concern for me. I see my cardiologist every 6 months and have not got his input on the prednisone yet. My next appoint is in 3 weeks. As far as the tapering schedule. I was referring to a 2012 Symposium by V Quick and JR Kirwan Royal College of Physicians of Edinburgh. Looking at these schedules gave me pause about how long I have already been at 15 mg. You are right about the mix up with cortisol levels. It’s much like my INR for the mechanical heart valve. Too high is just as dangerous as too low. Luckily I’ve been able to manage it without any issues for 14yrs now. Hopefully I will be successful with the prednisone with help from this forum. Thank you.

Suggested prednisone tapering schedules for PMR and GCA

[PMRpro Ambassador in reply to Gatorchief]

Yes - very familiar with the Quick paper. I did comment originally that leaving you at 15mg for 6 months as she proposed was a relatively long time. However - had you started at 20mg which is also common, you could well have been at 15mg or above for 4 months even with a fairly normal taper so the other 2 months isn't that dramatic. And some need 25mg - so even longer at above 15mg. The Quick paper is not written in stone - it is a typical approach and they say clearly it may need adjustment for the individual patient.

I imagine the resolution of the bradycardia is due to the effect pred often has in increasing heart rate. Or that the bradycardia was being triggered by some inflammation affecting the sinus node.

[SPEH]

just taper really slowly, half a milligram at no less than two months intervals…follow your body, and don’t change your dose at stressful times eg Christmas!

[Gatorchief in reply to SPEH]

Thank you for the reply. I know the road from here is going to be difficult for me as a retired Military man I’m use to taking things head on and operating on the “ how do you fix this” premiss. It’s comforting knowing that others feel the same pain and sensations you are feeling so you know you’re not crazy. So many times I felt that the doctors were not listening or weren’t very sympathetic to what you are going through. This PMR malady has been the greatest challenge I faced in my life so far. My heart issues were pretty straight forward. Replace the valve, rehab the heart, and go on with your life. I’ve been reasonably successful in that challenge after 14 yrs. This calls for constant monitoring of many symptoms, medication adjustments, and life style adjustments possibly for years. With the help from fellow sufferers of this disease I will get through this too. Have a safe and uneventful new year.

[Angelsmummy in reply to Gatorchief]

Hi G,I found that accepting my GCA/PMR was the hardest part,especially the sight loss.Things were out of my control,everything in my life had to have a box and be under my control.But then it all went belly up and I was at the mercy of this damn disease and the wrong doings of Drs etc in early days.I got angry,despondent,full of pity for myself and changed beyond recognition.That was until I found this forum and received SO much help and realised that are so very ,very many people like me,and I wasn’t alone anymore.My mindset changed,I started the recovery to acceptance and healing.I am not there yet,2 years after diagnosis,but am getting there with all the support and love that I feel and get from this new family on this forum.This disease takes what it wants from us and then ,hopefully leaves us and then maybe we can move forward albeit at a slower place but with a better understanding and life lessons learnt.I wish you luck for 2025 and may we all have a better yesr eh?x🍾😜

[Gatorchief in reply to Angelsmummy]

Thank you. I’ve upped the prednisone to 20 mg yesterday and still have some sporadic temporal soreness and that top of my head numbness for lack of a better description. I think I’ll take PMR PRO’s advice and up it to 25mg for a week and see if the symptoms subside. I had cataract surgery almost two yrs ago and everything was fine with my vision except the need for reading glasses. Lately I’m having trouble focusing on the print in these posts . I’m not sure if it the strength of the reading glasses or maybe some to do with the GCA . Luckily I have an appointment with the eye surgeon in 2 weeks and he can hopefully sort this out.

[Angelsmummy in reply to Gatorchief]

Good luck to you G,take it as it comes .You will get all the help you need on this site,stick with it eh?xx😜

[PMRpro Ambassador in reply to Gatorchief]

Pred can also cause focussing problems - I used to move my specs up and down my nose to compensate!!! Cheaper than new specs ...

[Angelsmummy in reply to PMRpro]

Good point,my optician said eye hasn’t changed but you tell my glasses that!