Dose reduction, pred. Suggested by GP

[Malsy]

Hi all. Still new to all this, but trying to be very pro active with it. Diagnosed GCA. symptoms started 4 weeks go. Been on 60 ml pred. 2.5 weeks. Dr suggested to go down to 50ml today. I'm not sleeping, and few other side affects, so she thinks it may help to drop. Does anyone else think it could help by 10ml with side affects in any way.? I am terrified of the pain that grips every morning leading up to taking next dose. Worried it might go more out of control again with lower dose. So glad you are all here with your experience. I have gone ahead this morning with the lower dose. Any advice? Still awaiting rheumatologist appointment, just like lots of others unfortunately! Thank you all so much. X

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

I’m concerned that you are still getting a lot of pain in the morning - after 2 and a bit weeks that should be under control better. What pain exactly? And as you suspect it will only increase on a lower dose.

You need to ring GP, GCA should be treated as a medical emergency like a heart attack and fast tracked - not left waiting. Sorry if that shocks you, but you need impress upon your GP that your sight is at risk.

The side effects are par for the course unfortunately, but at the moment they are less important (a nuisance, but less important) than getting your symptoms under control.

Take the 10mg - and please ring the doctor, and if you happen to get any sight irregularities go to A&E at once.

And please keep us informed.

[Malsy in reply to DorsetLady]

She said it was an emergency when she diagnosed me 2.5 weeks ago. Straight on 60ml for GCA. Because of sight. Which is ok so far. She has ordered urgent rhuemy appointment, which should be soon, and said any major problems or sight to treat as emergency, eye hospital, or 999. So i didn't see i could do anymore at the moment. I feel like maybe I'm not on high enough dose. As it gets to right on 24hours due for next dose, the pain hits again, builds up about 4 in the morning, until i take next dose. It then subsides enough to get going for rest of day, after about 2 hours of taking it. . When I first started taking them they responded well. Fever dissapeared , and 24 hour all over flu like pains, went. Eyes a bit blurry too, and that went too. Then day 4, major flare all over pain. There on nearly every morning, build up of headache, temple, jaw, tender head, neck and shoulders. So yes it's better, different, but not when dose is due. I dropped the dose by 10ml on todays. Ok so far. The last thing i want is to end up in hospital, but didn't know this was unusual to still experience pain to some degree. She phones me every other day to check how i am. I suppose I've got used to this pattern now, and know it goes shortly after next dose, but yeah! It is scary! She did agree, any new problems just go back to 60ml. If I get any sight problems, I will definitely go straight to a&e. No choice. ! But I am on for emergency rhuemy, believe it or not. Oh, this is all so horrible. I agree with you though, side affects of pred, have to outweigh the condition under control. I will let you know how it is tomorrow morning, then straight back on 60ml at slightest problem until I see rhuemy. Thank you. Xx

[DorsetLady PMRGCAuk volunteer in reply to Malsy]

Hi again,

4am is the time when the substances (cytokines) that cause the inflammation are shed - so many get a problem between then and when their morning tablets kick in. But that’s usually a sign that their medication is not lasting 24hours - so I would agree with you that 60mg is maybe not enough...at the moment anyway.

The issue with not being on enough Pred is bad enough when it’s PMR, but with GCA it can be devastating.

The fact that for first 4 days it worked well, and has declined since then also indicates not enough. The initial dose began to mop up accumulated dose pre diagnosis, but it doesn’t seem enough to cope with the new shed of inflammation daily on top of that.

My personal opinion, and it is only that, but having had GCA, I think you need 65mg or even 70mg to sort things out.

Any way you can speak to GP this afternoon to get it agreed before the weekend.

[Malsy in reply to DorsetLady]

Totally agree with you. Will speak to Dr again on Monday. That's exactly what it feels like,,,, not enough!. Like you say, nobody wants to have to up the steroids, but if it has to be , then so be it for now. I had stabbing pain in my right side of temple last night, just catches you, just viscous! maybe due to dropping by that 10ml last dose that the Dr asked me to do. No harm done hopefully. Otherwise it was same as normal, 4am build up of pain. So put it back up now to 60ml, like you suggested, and it can stay there now until i get the rhuemy appointment. Very interesting about the 4am cytokines, that makes perfect sense then, as I usually take the prednisolone about 6am. I remember reading this in your write up a while after it started pain build up around 4am every morning. I sleep 2-4am so far, because of the insomnia. So ready for kick off at 4am.

I am on a Facebook page for GCA , PMR and it seems so many new people on it in the past few weeks. Some newly diagnosed, some battling for help, and some quite young! Also some on very low dose for GCA.. It seems Drs really don't seem to be recognising GCA especially. Seems they want you to fit into every single symptoms box before giving the steroids. Rather worrying!

Thanks for your help Dorset lady. 😊

[PMRpro Ambassador in reply to Malsy]

I wonder which word she used - urgent is only sooner than routine. If you need a patient to be seen NOW, the word is emergency,

[Malsy in reply to PMRpro]

I know what you mean. The emergency in her mind was getting the steroids in immediately. She then sent request for URGENT rhuemy appointment. I rang them , and the girl said due to all the Covid stuff, it is all a bit up in the air for any appointments for rheumatologist. I have to ring again next week. Oh sigh! Thanks for help PMRpro

[PMRpro Ambassador]

Like DL it concerns me you still have severe pain in the mornings - and if you have suspected GCA then your GP should be getting an EMERGENCY appointment with a rheumatologist. Would she wait for an appointment for a patient having a heart attack or stroke? Of course she wouldn't - and GCA is a medical emergency in exactly the same way. A phone call to the ED and a letter pressed in your sweaty palm is what is required. Even my optician in Scotland did it that way 15 years ago.

[Grammy80]

For some reason, I just saw your post, Malsy. Dorset Lady and PMRPro are the best and brightest. I have GCA and with the onset July 2019.

Please stay on a dose that quiets the pain and the symptoms....I was not given enough with a misdiagnosis. Don't jeopardize your sight...hopefully, you have been seen by now. The side effects are difficult...but as you said and the pros said...nothing compared to your sight. In the beginning for some time I took 100 mg a day....

Please let me know how you are doing. xo