Tapering Pred from 2mg....to 1.5 or 1mg~?

[Grammy80]

To complete the picture, I do take an injection of Actemra weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my Actemra. Since September 2023, I've gone down from 60mg per day with no issue.

I've been on 2 for a month and feel good, given that I am not 30! I see my rheumy on the 22nd of March, but I wanted your input. Would it be wiser to go to 1.5 for a while instead of jumping to one mg? I'd love your thoughts. My doctor has a lot of respect for this forum~~!

Oh, by the way, when my vision was compromised in 2019, I gave up driving. BUT... I'm on the road again!! 🚗🚗🚗 Took a few driving lessons to get confident, passed the driving and written exams, and am a documented driver. Some of you may be thankful you don't live close by. Now, Grammy is off to the Senior Center for Art lessons and a crochet group. Living la vida loca!! Just another wild senior citizen.💞

[VeeWat]

so happy for you Grammy! Have fun.

[montebello]

Always good to hear from you and so glad you're down to 2 mg! I'm interested in hearing other folks advice on this, but if it were me I'd go down to 1.5 next. That's what I did on my PMR journey about a decade ago.

[HeronNS]

It will help to get advice from people who've successfully used Actemra to get to the low pred doses, but I think you should err on the side of caution. Don't forget, Actemra isn't replacing the cortisol which pred suppressed, so a slow taper here at what looks like the end would probably be wise. So glad things have been going well for you!

[123-go]

I’m not on Actemra, Grammy but will advise 1.5mg. It’s such a low dose but as we know 0.5mg can make a big difference.

Members of your Senior Centre are in for a treat with your presence. Enjoy your newfound liberty that a return to driving will provide (you will need the trunk to bring home all your wonderful efforts 🥰).

[Grammy80 in reply to 123-go]

You are always so encouraging and give me goals beyond my dreams💞"Fill 'er Up" takes on a whole new meaning~!

[123-go in reply to Grammy80]

😍

[SnazzyD]

Good for you!

I’d go for 0.5mg all the way. The reason being that although your adrenal glands are doing well by the sounds of it they can be caught off guard. You can find that 1mg less Pred can catch them by surprise and they are a bit slow to ramp up their own production of cortisol to make up for it. It would be a shame to damp down your spark with some unwanted fatigue. Actemra doesn’t help this aspect in any way.

[DorsetLady PMRGCAuk volunteer]

Well done.. and yes 0.5mg reductions of Pred even whilst still on Actemra… really no need for any rush at such low doses. Good luck 🌸

[Bcol]

All sounds good Grammy and yes, agree with the others 0.5mg. Just about to the same myself.

[Bluey-1]

Thar’s great news Grammy. So pleased you’re doing well and back in action.

[PMRpro Ambassador]

At least the car will be a bit more stable than a mobility scooter. Just saying ...

[Grammy80 in reply to PMRpro]

🤣😂😅....true enough!! If I mess up, it will be more than my arm in jeopardy !!!

[Pixix]

Great news…happy travelling! I’ve been on 2mg for six months (trialling new drugs for other health issues, Dr wanted to keep it the same. I tried going down to 1mg for 3 days to see if anything happened & it wasn’t pretty! When I do try & taper it will be 1.5mg…it may even be 1.75!!

[LucilleG in reply to Pixix]

That’s what I’ve been doing since getting below 5 mg...going down in 0.25 mg increments. I’m trying to get down to 4 mg right now, but may have to return to 4.25 mg as getting some niggles.

[herdysheep]

Getting your life and some freedom back - brill. Don't be tempted to take chances - still go slow with reduction. Nobody tells us if there is a curve ball around 😅

[Sharitone]

Congratulations on the driving!

I am on Actemra, but I still reduce by 0.25mg per month. Partly out of caution and past failure, but also then if the symptoms return, it is easier to pinpoint at which dose exactly the problem started.

[Grammy80]

Thank you all for taking the time to reply and I agree.....caution. I believe I mentioned previously that I had a friend (long before I really knew what GCA was) who remained on 1mg throughout her life. I will tell the rheumatologist Friday that is what I would prefer and he may suggest that anyway. But, .05mg it is my friends. xo thanks so much💞

[LemonZest11]

Hi Grammy, I take Actemra and have been off pred for just over a year now. I did the final stages in .25mg increments so I would agree with the others, nothing more than .5mgs from here. No rush, you're nearly there and my experience has taught me that the tiniest amounts of pred can make a difference. Go girl, looks like you're living the life!!

[PMRpro Ambassador in reply to LemonZest11]

How often are to doing the jab now?

[LemonZest11 in reply to PMRpro]

Still 4 weekly. My Rheumatologist retires in June and so I thought I'd keep going until then, when I meet her replacement. She's much younger and while I really like my doc, it might be interesting to hear another opinion. But we all know that the only opinion that matters is yours!! I'm now 55 weeks off pred.

[PMRpro Ambassador in reply to LemonZest11]

Pfft!!!!! I only report gathered experiences!!!

Have you noticed any (lower) belly fat developing with the Actemra? It is a documented effect it seems. And it is supposed to be the worse fat ...

[LemonZest11 in reply to PMRpro]

Not really. I'm not that big anyway, 55kgs, so I would notice I think. But I will keep an eye on it. What do you mean by the worst fat?

[PMRpro Ambassador in reply to LemonZest11]

Belly fat is the fat around organs and most associated with cardiovascular disease, Pred fat is the subcutaneous sort that isn't ...

[LemonZest11 in reply to PMRpro]

Ah jeez, something else to worry about 😱

[PMRpro Ambassador in reply to LemonZest11]

Well, so they say! I'll not worry about it. Just like I don't worry about my daily very small glass of wine ...

[LemonZest11 in reply to PMRpro]

I have two of those! Even more likely to cause belly fat 🍷 🥂 🍷

[PMRpro Ambassador in reply to LemonZest11]

True!

[Grammy80 in reply to PMRpro]

You want to talk belly fat? I can't blame mine on Actemra at all, I don't believe. In 2019 I was about 11 stone (I'll do the conversion) and went up to over 21 stone about two years ago. I definitely blame the pred since I was on 80mg per day for so long. I became the 3X queen. Even though the scales say 14 stone (I've a fair amount of metal in my body), I'm in a size 16 pant, so I'm happy. I'm sure my bone structure appreciates the lighter load. However, I believe my 'belly' is a permanent characteristic.🫠🫠💞

[PMRpro Ambassador in reply to Grammy80]

Mine is. post 2x c-sections. But I think it is bigger since Actemra!

[LemonZest11 in reply to PMRpro]

What pred dose have you reduced to?

[Grammy80 in reply to LemonZest11]

Right now, I am on 2mg plus Actemra weekly; on Saturday, I will reduce to 1.5 for at least a month. The journey started in August 2019. Right now, I'm happy and have my fingers crossed. I've never been in a rush to zero and won't care if I can't do that successfully. At 83, I'm more interested in the quality of my daily life. But once again, time will tell. I know even when and if I get to zero, my rheumatologist intends to keep me on the Actemra.🤞🏼🤞🏼🤞🏼💞

[PMRpro Ambassador in reply to LemonZest11]

Trying 6mg again at present - previous times I have developed sore upper arms and shoulders after a couple of weeks. But struggling a bit with adrenal-type symptoms.

[Grammy80 in reply to PMRpro]

🫢🫢 Sorry ladies.....

[LemonZest11 in reply to PMRpro]

You'll get there, but you know that. You've come a long way, I really hope symptoms begin to settle this time Pro.

[Grammy80 in reply to LemonZest11]

Thanks, Zest (sounds better than Lemon). Good advice and good for you, so happy for you.💞

[SheffieldJane]

Sounding good! 👏👏👏👏