So I had my third shot of Actemra on Thursday. Luckily I was approved for funding. I want to mention the side effects which I found after the third shot which is more muscle fatigue than the steroid myopathy rather debilitating. Lots of muscle pain and headache. My stomach has been sensitive for many years and it is getting worse. I do worry about the stomach side effects because they can be very nasty. I am hoping that the side effects let up and I can continue the drug for a while. After my third relapse it was very difficult to get off 20 mg. of prednisone. My ESR and CRP he kept popping up and down. ( perhaps because of the torn meniscus ). But still to high to reduce. I stayed on the 20 for five weeks. After my second shot my ESR was 10 and my CRP 1.1. I just reduced to 17.5 mg of prednisone. I will stay on that for a week if that is good and stomach doesn't get any worse. I think the protocol is two weeks at each stop. The question I asked my new young and caring rheumatologist was what happens if I have to get off the drug and he seem to think I would need to go up on the steroids. I would like to be able to get as low as possible on the steroids and if I have to get off the drug perhaps I would not have to go up too high on steroids. I believe I am rambling but if anyone knows the answer to this or has been in this position I would appreciate a response. Would love to hear from my USA Buddies as well. Thank you.
Anyone outside the USA on actemra yet? Looking fo... - PMRGCAuk
Anyone outside the USA on actemra yet? Looking for reactions to the drug here in USA and abroad. Heard anything PMRGCApro?
There are some people in the UK who will have used it as a result of participating in the trial but to be honest I don't think I have come across any on the forums. I know one lady is under Prof Dasgupta and he got funding for her to have it for GCA, another lady is waiting. There is a lady in Australia who is on it for what is probably PMR but wouldn't respond to anything else but very high doses of pred. I think they are all on the patient.info forum though.
Most people are in the USA.
I am waiting to be put on Actemra in the next few weeks, once another medical issue has been cleared up. It will be to treat GCA though I also have RA.
Yes, it has been approved for use in RA for quite some time.
However, I do know people who took part in the trial.................but the criteria was tight:
Newly diagnosed was important. The one I do remember clearly is that one.
So no-one on those trials that took place in the UK had been on pred long. I cannot remember the other ones. Too long ago.
I cannot speak for the other countries where the trials took place, ie USA and some European. Also I do not know how many people took part in the trials either and it was, as far as I remember, conducted in about 14 -20 trial centres.
If you look at this actemra.com/ link and make sure you arrive at for Patients and Caregivers and read.
It is a fairly new drug for both RA and GCA, whereas pred is old and we know all side effects, well the 83 listed and the one not listed 'brain fog'.
I am not saying you should not take it, taking any drug is a COMPLETELY PERSONAL decision and I would never ever say 'yes' or 'no' to anyone. YOU DECIDE.
It has not yet been cleared for general use for GCA in the UK. I doubt it will be soon as the cost is significant.
As far as I am aware, the FDA only cleared it partially, but on that I could be entirely wrong. But you can find out the current situation by looking at the FDA website.
Hope this helps.
It was surprised when my husband thought the Actermra injections would have an immmediate relief to my symptoms. As I understood it from my doc it could take several weeks. Just yesterday I told my husband I was pretty much pain free for me. I had m injection 2 days ago. It was my ninth. It takes time I think depending on your disease. I had few side effects, rash, headache, sleeping etc. I am optimistic that I a heading toward remission. Don't give up hope.
I live in Scotland and have been accepted into the trial, I am starting tomorrow morning, Wednesday! Got to try anything. I have GCA only. Watch this space. 😷
The last time I saw my rheumi in June, he said when I see him again on Sept. 12, we would discuss Actmera. I have a feeling that the pharmaceutical company is encouraging Reumatoligists to try Actmera on their PMR patients, at least here in Spain.. If the side effect- benefit ratio is anything like mtx, I will probably refuse it. I felt great at 7.5 before I had a flare and had to go back up and at 7.5, I had hardly any side effects from the pred. The mtx left me useless for at least two, sometimes three days out of the week. It still baffles me how doctors works rather one take ANYTHING , no matter how agressive, just not Prednisone. I can understand with GCA, as it requires higher dosis, but PMR, though a huge pain in the ass ( sometimes literally😂), isn't really that big of a deal especially when at single digits dosis of pred.
I works try it if they told me that I could get off the pred completely and that Actmera actually cures PMR, but I haven't heard of anyone stopping the pred while on Actmera. Maybe I'm wrong , and I know that if no one with PMR wants to try Actmera, we will never know for sure, but still, it's a big risk for only PMR, IMO. I would be willing to try it if they told me I could go off the pred altogether..but then I'd probably get adrenal insufficiency..I guess that's why they want people recently diagnosed for the trial?
Follow this link - it was posted on another thread and read it. You will be surprised and
practicalpainmanagement.com...
perhaps re-assured.
Most of the additions you are offered are steroid sparing agents and they all come with - yes you guessed - their own side effects. Me, being me, did the math and asked the question.
Does it cure? Answer. No there is currently no known cause or cure. Me, No thanks, I will stick with the old one. Five years down the line, GCA into remission, was the journey difficult, no auto-immune illness is easy. So I had my ups and downs, tears, laughter and learned to walk to a different drummer. But that was my experience and it cannot and will not be yours. We are all different.
Now this next bit is important.
ALL DECISIONS MADE ARE PERSONAL ONES AND YOU MAKE UP YOUR OWN MIND. You gather hard information and then you decide for you. It is your body and your medics.
Hi. jinasc. At the moment that is exactly how I feel about other treatments of GCA.
Thanks for the boost. Great information & experience on this site from people like yourself. Only 3 months diagnosed GCA for me & some crazy mental side effects but... hopefully as the dose comes down...I will almost be back to my old self.
Ah but there are 83 side-effects listed, well 84 if you count 'steroid brain fog' which is not listed.
The good thing is we know about them as pred as according to Wikipedia 'The first known use of corticosteroids was in 1944'. According to my medics, 1959. Whichever date is right, it is old and powerful.
Without it some people would not be alive. Some youngsters are on it for life. Me, I would be blind.
I, personally, have not met anyone in the past ten years with all 83 or even more than 5 or 6.
Moon- face goes away pretty quick, and I was sad as that meant my wrinkles came back.
Peach Fuzz disappeared quite quickly as well.
Weight gain - lets not go there.
Did I get an uncommon one - One and it was dealt with successfully.
Did I get rare or extremely rare..............no.
So pred is for me is a goodie , warts and all.
Hi Nap 1,
I am from the U.S. And am on actemra infusions once a month for 15 months . I am feeling better than I have since being diagnosed with GCA. I still have fatigue and must sit down and rest between every thing I do. I could not shop at a mall without a wheel chair or sitting down multiple times and walk very slowly. But I have had no side effects from the infusion. The one other person I know who has GCA is on actemra also and he has symptoms the week before his next shot is due. I cannot feel a difference before or after I get the shot. So I asked dr. Why have the shot? He said you would have ALOT more symptoms if you are not on shot. Oh and when diagnosed I was put on 60 mg pred and weaned down every two weeks til I was off. Don't know if this helps but as was said before we are all so different and react so different to meds.
I'm in ireland and have been offered actemra. I think it has another name here but I believe it's the same drug. I'm on 17.5 pred and 15 MTX. I felt the MTX was making me very tired and my hair is thinning. I have arterial inflammation but other than occasional tenderness in temples, I have no symptoms. I do have PMR. The offer of actemra was because I wasn't very happy with the MTX . Having read about it though, I don't think I'll be taking it.
Its substance name is tocilizumab - which is why the medics like a nice easy to remember and catchy brand name!
However, if it is in Dublin, they are doing a clinical trial with another biologic drug, ustekinumab.
Thank you. But the MTX has never been proven to help GCA yet doctors continue to prescribe it. I will take the Actemra until something happens and I have to stop. Meanwhile ithas brought my CRP and ESR down and enabled me to reduce the prednisone.
I just had my 7 th injection of Actemra and it will be my last. I have had stomach problems , gastritis, I think and just do not fell well. It is hard to explain but I am exhausted more than normal ...and just do not like the added side effects . Also the stress of not being sure of what it is doing to my insides is more than I want to deal with. Experiment over !!
Facebook has a closed group with the name of Actemra Support. (My rheumy asked that I do some research on the drug. It was approved on the same day I was diagnosed with GCA.) I joined the group to read about the experiences others were having with the drug. As of today, I'm inclined to stick with just the Prednisone. The thought of starting with another drug with so many side effects, and it being a new drug, has me worried. But there's doubt that I'm making the right decision as some really getting wonderful results.
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