How about Actemra for GCA if you have no negative side effects from Prednisone?
Posted , 8 users are following.
I was diagnosed with GCA in Sep2016. Got 60mg Pred, reduced to 25mg in Dec2017. First flare-up. Back to 60mg, using DSNS method down to 17,5/15mg. Second flare up. Back up to 20mg, not enough, 30mg, still stiff in morning and paniful hands and feet. Tomorrow I will start going back to 40mg. Hopefully that is enough to suppress symptoms and then start going down again. I have had no significant side effects even when I was on 60mg. I sleep well, have gained almost no weight. A little rounder cheeks, but I don't think that anyone else actually notices. I believe that I should be able to get back down to the 20mg relatively quickly and then back to patiently using DSNS to get down lower.
My Rheum wants to try Actemra. Who has experience with this and who would you recommend it for me?
0 likes, 33 replies
kathy67492 koen1
Posted
I have had 5 infusions of Actemra and it has worked remarkably in helping me to taper the,prednisone...down from 8 in June to 4 now, going to 3 in a week. The main objective is to get me off the prednisone, even though I did not have any "obvious" side-effects from it. However, I have been on prednisone for over 3-1/2 years and could not get below 8m...7-1/2m for a short while...always flaring. The trials of Actemra were with patients with GCA. I would strongly recommend that you try it...but read about it, there are no guarantees. Also, my rheumy and medical team told me not to read all the stuff on google! Guess all meds have a lot of toxic warnings...pick your poison so to speak😊 Each one of us is different and may or may not have serious side effects from any medication. Wish you the best.
lodgerUK_NE kathy67492
Posted
Ask the BIG questions, how many.................patients, there were only 14 participating hospitals (as far as I am aware) and my local one in the course of the trial, managed 4 patients in two years.
You can put Tocilzumab+Clinical Trial GCA in your search engine and read up on it.
You won't find it under Actemra, well not the last time I looked.............
EileenH koen1
Posted
Anhaga koen1
Posted
Actemra is a biologic, which as I understand it, correct me if I'm wrong. should work to actually deal with the cause of the inflammation, unlike pred which merely keeps a lid on it, and we have to wait for the disease to burn itself out. That being said, it has some concerning possible side effects of its own, so I'd say in your position it's a bit of a tossup - provided cost is not an issue.
lodgerUK_NE koen1
Posted
Snap, twice in the first year.
Second time when on 40mg, No more than 10% at a time (do the math). Wait two weeks, 1 to give steroid withdrawal symptoms time to susbide and also clear 5 days of anything unessential, like housework, shopping, bedmaking, gardening, in fact like a Precious Princess. The 5 days normal (whatever is normal for you) the another 10%. See how it goes. Then when down to 20 mg and after a couple of months, try 10% at a time, but this time, follow either of the two plans, DSNS of T&H, one takes slighter more days than t'other. The if safely down to 10mg and it took me nearly two years to get there. Then follow down from 10mgs. If you want two free copies, pmrgcafightersne@g.mail is the email address. .
Iff and I mean if, at anytime, ie after 5 days, the aches etc come back or you don't feel 'normal' it is too soon. Go back to where you were comfortable, wait a couple of weeks and then start all over again. Always remember your sight is at stake and the aim is to keep the inflammation under control at the time.
You cannot ;win, hurry-it-up' both of them have minds of their work, they come when they want and go into remission when ready..................
I would find the post from PMRpro on here relating to a 'class action' currently being undertaken in the USA.
I have mislaid the thread..........so use the search box top of the page..........type in Class action USA as a first go.
I would want to be really sure on making that decision.............are you in the USA or UK. If latter it is not cleared yet for GCA. For RA yes, GCA No.
Bethune koen1
Posted
It was not effective enough and seemed to have bad side effects for me. But it was worth the try. The search to manage both illnesses simultaneously continues.
Good Luck to you!
lodgerUK_NE Bethune
Posted
The trials were only conducted on people with GCA.
I am amazed that people who have PMR are being offered it. I can understand that those with RA are as it is licensed for use for RA.
One thing, Methotextrate, as I was told by a Rheumatologist Nurse who came as a speaker initially on RA and subsequently gained much more knowledge about both PMR and GCA, that Lady told us the Methotextrate was gold standard treatment for RA and also for LORA. Methotextrate is also used sometimes as a steroid sparing agent and it has helped those with PMR who have then developed LORA alongside it.
I am not a medic at all, but just noticed that you made no mention of Methotextrate and was curious. It comes, as they all do with side effects of course.
Bethune lodgerUK_NE
Posted
Hi Lodger, initially I was started on Methotrexate, but the rheumy did not want me to stay on it longer than necessary. I got off all Medicine and was symptom free for 6+ mos. Then I had a flare and this time Methotrexate did not work. We've tried 3 other medicines to help me get off my prednisone but so far none are working.
I've been as low as 5 for several months but recently had to go up and seem to be stuck at 15mg prednisone... not good.
Now we are trying Cimzia, but that is more for RA than PMR I believe.
lodgerUK_NE Bethune
Posted
I am not a medically trained person at all.
I had GCA and did not have PMR, or at the time any other medical problems.
So I really cannot help you, except to ask, what is your problem and your medics problem with Pred?
Have you been yo-yoing up and down?
Send me a PM and I will send you a couple of links and reduction plans.
Bethune lodgerUK_NE
Posted
There is no unreasonable problem with pred., but I'm developing osteoporosis, and Diabetes 2, so I'm eager to reduce the pred. If I can. I think the combo of RA/OA/ PMR is tricky to treat, but I remain fully functional, and very physically active, so so far I've been pretty lucky.
Bethune lodgerUK_NE
Posted
lodgerUK_NE Bethune
Posted
There is an 'envelope' beside everyone names, you just click on it.
EileenH Bethune
Posted
You can cut the risk of Type 2 diabetes by cutting carbs drastically - and that also helps pred-associated weight gain.
You have presumably had a dexascan - what were your t-scores? Anhaga is the guru for improving bone density naturally - but if it is bad enough then there is medication which increases bone density. Not that high bone density is necessarily a way of preventing fractures - people with normal bone density break bones, many people with low bone density don't. There are a lot of better ways to reduce the risk of fractures.
Bethune EileenH
Posted
Thanks Eileen. I did cut carbs and it made no difference. I never gained weight on prednisone, actually lost weight, and am thin. I do not want to take any Fosomax type medicine for osteoporosis because it increases bone fractures. As a "small, white woman" osteoporosis was probably in my future anyway. I do wtight bearing exercise at least 5x a week . What is Anhaga?
Bethune
Posted
Hi Eileen, thanks fir the referral to Anhaga. I also take Vit D,-prescription level, fish oil, and Calcium. I'll try adding the other vitamins she recommends.
EileenH Bethune
Posted
Anhaga is not a "What" - she's a "Who"! A member of the forum who has done a lot of research into increasing bone density naturally and brought her own up from -2.1 (requiring treatment) to -1.6 (no treatment required).
Anhaga EileenH
Posted
Although the original reading was -2, not -2.1. Btw, dentist noted that I don't complain of sensitive teeth nearly as much as I used to. Vitamin K2 doing its work? I'd taken calcium and D for years, decades before PMR.
EileenH Anhaga
Posted
I had sensitive teeth with PMR - took a few months of pred to improve. Sensitive teeth is a common complaint amongst PMR-ers.
Anhaga EileenH
Posted
My sensitive teeth must have predated PMR/pred, actually. I don't really remember, but I feel like it was a long time ago I found I couldn't rinse my mouth with cold water from the tap.
EileenH Anhaga
Posted