Pred dose question (GCA)

[DogAgilityObsessed]

I was initially prescribed 60mg on 1 December but the Rheumatologist reduced this to 40mg four days later. The plan is for me to remain on 40mg until about the second week January.

I am still experiencing headaches (mainly) at the back of my head. A lot of the time it feels like I think of as a tension headache and I want to roll my head around stretching the back of my neck. Sometimes but not often my jaw aches when eating. Symptoms are worse late afternoon and in the evening.

I take the pred about 8:00 am

I am wondering if the 40mg dose is sufficient and/or if I should contact the rheumatologist - but wanted your advice first. I don't really want to increase the dose as I am feeling low enough as it is but I understand the need to get the inflammation under control.

TIA as always,

[DorsetLady PMRGCAuk volunteer]

To he honest, sometimes 40mg is pushing it a bit for GCA… for some it’s great… but it is the lowest starting dose…. and some do need more. .. and I’d say you are probably one of them.

As you are now coming up to 2 weeks at 40mg, and still getting a few niggles I’d say you need at bit more - and extra 5mg might do it… so please contact rheumatologist before we get into Christmas holidays,,,

[DogAgilityObsessed in reply to DorsetLady]

Message sent (via the hospital's App) so will see what they say. Thank you.

[SnazzyD]

I’d be wanting a medical opinion with those niggles. Sounds like the dose isn’t quite holding you.

[PMRpro Ambassador]

I agree with the others - hope the rheumy gets back to you.

[Bluey-1]

Flashback to June ‘22 and I was in the same position as you. After 5 days on 60mg all pain gone but I was literally shaking, couldn’t write properly, dreadful. After rheumatologist appointment, reduced to 40mg for a month. Some pains returned at the back of my neck as you described. They did eventually subside and all was fine at 40mg. It was frightening though. I rang the helpline and was reassured but if I were in your position knowing what I now know I would follow up and ask more questions. At that stage I didn’t even know what to ask and felt almost delirious on pred. I was initially told by my GP to contact hospital if feeling worse. The problem was I had no idea what was worse - the drugs, side effects or the illness. I think this confusion is quite normal. Good luck and keep us posted. So far I’ve had only one (described as) mini flair reducing, probably too quickly, from 20-17.5mg. I’m now eighteen months in and at 4mg daily. I feel I’ve done well so far. You learn to listen to your body, adapt activity while tapering and pacing, pacing, pacing. It’s the loss of stamina and intermittent fatigue that is upsetting when you’ve been a very active person. It does get better. When I look back to where I was a year ago….

[SnazzyD in reply to Bluey-1]

It can be a dreadful combo, the mind being discombobulated and the GCA that’s lurking there in the mist. Not ideal for rational appraisal of loads of information and it’s especially difficult if one suspects the doc’s insight might not be right for you as an individual.

[DogAgilityObsessed in reply to SnazzyD]

"Not ideal for rational appraisal of loads of information" and that is one of the things I am really struggling with! I used to be an indexer (amongst other things) so would need to read some quite complex books, retaining information and different concepts. So frustrating.

[SnazzyD in reply to DogAgilityObsessed]

Yep

[DogAgilityObsessed]

I’ve had a response from the rheumatologist nurse already who has spoken to the consultant. They say:

“He tells me that your jaw pain may take some time to resolve regardless of the dose of prednisolone you are on, and you may experience these symptoms for another few weeks. This does not indicate that the disease is active - rather that the artery to the jaw takes some time to recover. Your blood tests show that the inflammation has reduced. Dr Haigh has asked that you to remain on the 40mg of prednisolone as planned but that he would see you early in the new year if you continue to struggle. Please do continue to take simple analgesia to help you to manage the pain. We are due to speak to you regarding leflunomide and I will request that the appointment be brought forwards.“

So that’s what I will do. But I do have a supply of pred obviously so if things got bad over Christmas…

[Bluey-1 in reply to DogAgilityObsessed]

Sounds like you have a plan and you have a good pred supply. Very similar situation that I found myself in 18 months ago. Good luck and have a (hopefully) restful Christmas.

[Bluey-1 in reply to DogAgilityObsessed]

…just to say I’ve never had steroid sparing drugs. I was given a leaflet about Methotrexate but told my rheumatologist it scared the life out of me with more side effects so it wasn’t mentioned again! I do seem to react strongly to drugs. Took me a couple of days to recover from the second zoledronate infusion recently so I’m in no rush to add any more to the system. We are all so different though, something I’ve learnt from this forum. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Hmm.. the inflammation may well have reduced..and so it should.. but that doesn’t mean it’s completely gone…[ if that’s advice then go with it…within reason. But you’ll know if the painkillers help or not., and as you say you have a stash, so if required….you know what to do.

[SnazzyD in reply to DogAgilityObsessed]

Sounds rational. Do have a low threshold for seeking advice if it gets worse. I was on 40mg for 6 weeks after a week on 60mg and I needed every one of them. I did notice that the moment I over did it my temple became tender and tinnitus ratcheted up a notch or two. It’s definitely worth working with the Pred.