Prednisone or GCA flare update

[Mstiles]

Hello everyone,

Hope everyone had a Valentine’s Day that included something good! I bought a fabulous new pink handbag which cheered me up immensely. 💕

I posted about 3 days ago with concerns about whether I was having a flare of the GCA or whether it was prednisone as a result of trying to lower the dose from 40mg, and also so upset about not hearing back from the rheumy.

2 days ago I did get a call from him. (First check in with him in 6 weeks). He ordered blood tests as soon as possible, sed and CPR. And put them on monthly test schedule. I told him I had taken an additional 5 mg of prednisone and he said that was Ok. I also told him I was seeing the opthomologist the next day, (yesterday). He said he would call me with blood test results and see what the opthomologist said, and then mentioned possibly adding another medication to get me off prednisone sooner if the tests were Ok. Just to make me MORE confused and worried, he said “but opthomologists can’t always tell GCA from exams”...thanks!

Adding another medication at this point with the goal of getting me off prednisone soon worries me because of information I’ve read on this great site about tapering slowly, other med side effects, etc. I do have an appointment to see the rheumy a week from today.

The good news is the opthomologist could see no damage at this point or signs of GCA to the optical nerve, etc. she reassured me about text moving about when tired, that that was not the classic double vision but probably from my bad nearsightedness and wearing both contact lenses and (very old) glasses.

I did not take the extra 5 mg on top of the 40 last night, ....did I mess myself up again by changing the dose? I only took the extra 5 for two days because of fear that this was a flare. Last nite was I was so tired from trip to the doctor and lots of socializing that I had a bad night of waking up cold, loud head noises, and rib, back pain, tight chest, (this was worse),when I did the 2am wake up routine. Also a little irregular heartbeat that settled after awhile.

Today I’m knackered, as you Brits say....perfect word for that feeling. I Don’t have head pain, just pressure and some soreness, on the back of the head where all this started, and near the ears. There is also a spot on my face next to my nostril at the very top of my gum that has been bothering me since I had a crown put on the tooth last fall, the dentist hasn’t seen anything there. But it is still sore.

Lots of complaints! A long list! I’m glad i can share with you all, my sister thinks it’s all muscular-skeletal problems, (she’s an occupational therapist and knows a lot and is my main support, but not sure she understands all this and how debilitating it can be).

I’ll see what the bloods say what the rheumy says. I hope I can stay at 40 and not have to go back up and that I didn’t start a yo-yo routine by messing with my dose.

I’m going to print out some of the slow taper info to bring with me to the rheumy appointment. I will have been on 40 with a few ups and downs for 7 weeks when I see him.

Any thoughts on dosage, tapering, etc, would be very appreciated.

Thank you so much.

[DorsetLady PMRGCAuk volunteer]

Hi Mstiles,

I may have answered this before to one of your other posts, so apologies if I’m repeating myself. As you’ve been on 40mg all along, with ups and downs, it doesn't sound as if that dose properly got to grips with your accumulated inflammation. I know you have other issues as well, but if you you felt better at 45mg then why not stick to that for a couple more days, and then try reducing to 42.5mg. Stay there for a couple of weeks, and then if you feel able and happy to drop back 40mg.

As for adding in another drug, well that your choice of course, but personally I think you need to give the Pred a chance to do its work. That means high enough dose and long enough - some Rheumies don’t seem prepared to do that!

As for longer term, I would say you could probably reduce monthly (if no symptoms and bloods okay) along the lines of 35-30-25-22.5-20mg for starters!

Good luck.

P.s. agree with the pink handbag, treated myself recently to same......probably totally impractical but who cares!

A girl’s gotta do, what a girl’s gotta do 👛

[Mstiles in reply to DorsetLady]

Thanks DorsetLady. I think I will try that schedule. 👛💕

[Mstiles in reply to Mstiles]

Last night I again took the extra 5 mg, but I didn’t take it until 9 pm and that really helped to take it later. Last night was much better! Not so much loud noises and pain. Thank you!

[SheffieldJane]

As DorsetLady has addressed your main concerns, I will just mention that I had the same painful lump above a front tooth crown. My dentist gave me an x- ray and called it a sinus. Much to both of our trepidation, he decided to clean it out and fill the tooth at the base of the crown. The crown survived and the painful lump has gone.

I really agree with DL about giving the Pred a chance to work before adding another drug to the mix.

I love the thought of your pink handbag - this kind of self love is a very good sign!

[Mstiles in reply to SheffieldJane]

Thank you Sheffield Jane

[Hidden]

're eyes. You may already do this ...but....I have been having blurry vision and text that moves which wasn't unexpected at higher dose (only 15mg) especially having diabetes for years. I had gritty eyes too and decided to a test run of eye drops as others have on the forum. I actually stumped up for expensive drops in individual vials. (About £10 for 30vials). It's preservative free which all drops that can be used with contacts are. I have noticed a significant difference. My eyes feel better and vision clearer. Pharmacist was helpful as she said if they worked I should ask for them on prescription..

[Mstiles in reply to Hidden]

Oh thank you! Yes I am Magoo, the cartoon character, all right. Can you share the name of the drops? My insurance may cover them.

[Hidden]

The name is Hydromoor. There are 30 single unit doses. I know you can buy bottle droppers for 3£ or so but I like the fact that each dose is sterile.

[Mstiles in reply to Hidden]

Thank you.

I’ll see if we have it over here in the colonies.