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.💞
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Grammy80
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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.
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!
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 🥰).
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.
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!!
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.
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 😅
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.
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💞
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!!
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.
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.🫠🫠💞
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.🤞🏼🤞🏼🤞🏼💞
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.
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would probably be wise. So glad things have been going well for you! 
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