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EMEA has approved Actemra (Tocilizumab, here sold as RoActemra) already a year ago. We’re using it regularly, though not as often as other biologics. We have less adverse events than we had expected by the literature and the presentations at ACR and EULAR.
I think lots of research still lies ahead, especially collecting data in drug surveillance.
Lothar
Thanks very much for the info!
Anita
You are welcome. 😎
Thanks so much for this information Kelly! Being that my RA has so far been unresponsive to everything and is, in fact, worse now than when I was diagnosed over a year ago, I’m always trying to learn more about other treatment options. I have to say, though, that I just want to cry every time I read “it is used with methotrexate”. I was taken off of mtx in July because of mouth sores that wouldn’t respond to treatment and I keep being reminded that being unable to take it is severely limiting my treatment options and the potential of the biologics I can take. 😥
Aubrey,
Sometimes an alternative is used instead of the methotrexate to do the same job. It’s just that mtx works best & has less side effects than its alternatives. I don’t know about w/ Actemra yet… your Rheum. dr. could find out.
Also, I have read about trying again w/ methotrexate: starting slowly, using higher / stronger doses of folic acid, optimal supplements and nutrition… My GP frequently cks different blood levels to see if I need to take more of a vitamin, etc.
Don’t give up hope!
Aubrey,
Did you try the MTX injections? When I was on MTX in pill form I had terrible mouth sores. Once I started injections that went away. Best of luck!
I was just reading that IL-6 may be partially responsible for anemia of chronic disease (aka anemia of inflammation). If Actemra inhibits IL-6, perhaps we can get some relief from both RA and anemia. Wouldn’t that be nice!
Yes. And that certainly gives a clue as to how complicated this thing is… And that one day, there will be answers in black & white. And a cure… :rainbow:
I have a quick question, maybe you can guide me in the direction to find a answer, I know all of us have Rheumatoid Arthritis- but how do we get answers on exactly what form of Rheumatoid Arthritis we have? Is there a special test for that? All I am ever told is I have Rheumatoid Arthritis, to try this or that. Thanks Kelly if you answers I would appreicate it!
I have been in a clinical trial for Actemra for the last 8 months…….it has helped me where Enbrel did not. This is great news!
Hi,
I just started Actemra on Tuesday after 2 1/2 years of failed treatments–either not effective and/or meds not tolerated. I would love to hear from you-my RA has rapidly progressed from hands and wrists to shoulders, elbows, jaws, and now hips to where I can barely walk, not to mention the fevers and flu like sickness and secondary Sjogren’s syndrome that add to the pain and inflammation. I hope and pray Actemra will help and be a miracle drug for so many of us with refractory RA. Take care, valerie
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I am 35 yrs old and have Severe RA (JRA at age 5). I just started taking Actemra, had my first infusion 2 weeks ago. I had been on Remicade for years but then had to stop it for a surgery. When I went back on Remicade, I began having severe allergic reactions during the infusions- airways closed, heart rate increased, & hives all over my body- so I had to stop taking it. I had previously been on Humira injections while I was pregnant and hated it, so I was so excited to hear my Rheumatologist tell me there was a new option that wasn’t in the same class as my previous biologics. She said she had been part of the clinical studies and was very impressed with it, especially the low side effects. With Actemra, there is no loading dose like there is for Remicade- so you start out at 1x every 4 weeks- you don’t have to “work up to it”. According to my Rheumatologist, it takes approx 2 infusions before you feel a difference. I had no allergic reaction and the infusion only took 1 hr, instead of 4-5 hrs with Remicade. After my infusion, I did have a headache but I was also severely congested from a recovering sinus cold. I am not sure if the headache was from the infusion or my congestion, so will have to wait until the next infusion to find out. Has anyone else been on this new treatment? How is it working for you?
Good Luck Michelle. Thanks for posting.
Hi Kelly,
Today is the first time I have ever responded on a blog. I found your site by accident–reading what others with severe refractory RA experience and deal with spoke to me so personally. I’ve been on every drug and DMARD but Remicade and just started Actemra this week. I was so happy to finally find some people on Actemra with good results to boot. (responded to Jane) I always try to remain positive and optimistic-not to say there are times I really have to dig deep to raise myself up spiritually. Thank you for giving us this site for support and encouragement. I wish you and all others the best on this journey with RA. We need to remain strong and always count our blessings to keep us going –I have a wonderfully supportive husband, 3 grown children and 6 beautiful granddaughters to love, laugh and smile with-they are my best medicine as of yet. Here’s hoping the Actemra will be my ticket and others with IL 6 pathways to better days ahead. Thank you again.
Valerie
Valerie, thanks for your great comments. I hope Actemra is a great “pathway” for you. 😎
Hi Michelle,
I just received my first infusion of Actemra about 3 weeks ago. I also do mtx injections and manage the side effects with folic acid every morning and then 12 hours after my mtx injection I take Leucovorin to help with the mouth sores, headache a nausea.
Unfortunately, I have had a horrible case of mouth sores for about 2 weeks now and not sure if it is from the Actemra or mtx or both. I have stopped the mtx for now to let my mouth heal.
My RA dr also put me on sulfasalazine to help minimize the intestinal distress from Actemra. I did get really bad diarrhea after the infusion.
Anyone else have more info on this new med? I love this site and everyone’s input!
Thanks, Linda! I hope it works. I love finding out more by reading all your posts, too! 😎
Linda,
I have been on Actemra for the last 4 years now, and I have nothing bad to say about it. Before I was able to get into the study, my condition was pretty severe, and needed constant help for almost everything. I had read when diagnosed that most become disabled within 10 years, and I must say, I was at that point within 2 years.
Beginning with my first dose, I felt relief, and for the last 2 years, the only medication I take for my RA is Actemra. I feel as well as I did prior to my diagnosis. I keep my calendar updated for my next treatment as I do not “feel” when I need to go. Even after 4 years and with all the stresses life sends my way, Actemra has never let me down.
I am a wife, mother, work full time, and attend classes working towards a degree. Last month I took a 7 mile hike with my family. Before Actemra, these were just dreams, now they are reality.
Many will have questions regarding the treatment itself. It is an infusion that takes about 1-2 hours depending on how busy the center is. Typical day is I go to work at 6:00am, leave for my treatment at 7:30am, return to work around 10:30am, and work until 5:00pm. I tell you this because I have no ill effects from the treatment. I do not need to go home and recover. I just go about my day like any other.
If anyone has any questions, please post them here and I will try to answer them if I can.
Sue, your example is stunning. I am so happy for you & I hope this works for many others! Thanks for being willing to share!
Ive, been diagnoised with reactive arthritis,what is the treatment for it.
Hi Kathy. Click < a href="http://www.rawarrior.com/christopher-columbus-part-3-how-does-reactive-arthritis-compare-to-rheumatoid-arthritis/">here on the link to take you to a post on Reactive Arthritis. It is actually part 3 of a 3-part series on Columbus & his reactive arthritis.
From what I’ve read, it is often treated with some of the same medicines as RA. I’ve also read that it can go away or be cured. I sure hope that’s true for you!
I’m going to ask my rheumatoloist about this one! Hopefully, the URI’s will not prove to be a huge problem to me (I have bad asthma that gets serious when I have an infection). I hope that it proves to be a lifeline for the many who suffer constantly with this disease.
Good luck to all of us! :clover:
Kelly I have been waitng for 20+ years for somekind of treatment to help reverse RA ,but guess i’ll b waiting another 20+ because so far my insurance (medicare) just refuses to approve anything that will help ME..so frustrating,i’m waiting on Cimzia injections.the steroid shot i got last week is wearing off & I’m feeling crappy again.seems like that’s all we RA patients do is wait.!! :struggle:
Roxie, I’m still upset they took away the Orencia when it was working for you. What is the delay? Maybe you need to ask them if another dr. could get one of these meds for you sooner. How many months has it been?? :-/
I just had my 6th Actemra infusion today. Finally, I am on a drug that is helping me. I feel hope again. I have been on so many other drugs with no or minimal help. I have been totally disabled for 2+ years. Having a reason to hope again is good.
I do have some intestinal side effects (nausea, diarrhea, cramping) the day of the infusion and a headache the day after. A small price to pay for some relief. I have also noticed an increase in the number and severity of oral and nasal ulcerations.(I am on mtx injections.)
Because of kidney stones and an occluded kidney,
I had to delay my latest Actemra infusion by 3 weeks. Interestingly, all of the ulcers healed during that time. Some of these ulcers had been present for 3 months. Makes me pretty sure there is a connection between the two.
I am curious if any other Actemra patients have noticed an increase in ulcerations or slowed healing of them? Also, according to my rheumatologist, GI side effects are not common. Are any others having this and if so, what are you doing to treat it?
Thanks for any insight. This blog is so very helpful. It keeps me from feeling alone in my struggle.
Joy, I’m so glad it’s working for you!
I have not heard that connection, but maybe you will get a reply later. You should use your email address to subscribe to the comments of this post & if someone else answers, it will be emailed automatically to you.
As for me, I had a lot of small infections on Humira that were attributed to mtx. Increasing the folic acid helped some, but I never had them on the other Biologics. What I’m hinting at is that maybe somehow it is the combination. ??
I have had the oral ulcers with the Actemra. I’m susceptible to them anyway but they are really bad. Glad to hear I’m not the only one. I’m getting ready for my 5th infusion. Already have the doubled dose. Finding it to wear off during week 2 or 4. Anyone else with this reaction. Fell great the first 2 weeks.
Thanks for your input.
I saw my Rheumy today as my symptoms have begun to get worse over the past month after great benefit from Enbrel.. He wants to start me on Actemra and I am looking for as much info that I can find… All comments welcome..!! Laurie
I would like to know if any one is on Actemra ? If so how is it working for you ? I just started it 3_ 17- 2011 I was on Remicade for 11 years, but had to quite taking it . It wasnt working & also caused to many kidney & bladder infections.
I have been on just about every kind of RA medicine in the last 22 years.
Hi Butterfly – I am on Actemra (in UK), started on a trial in September 2009. It worked within a couple of days of the first infusion. Occasionally, when my neutrophils get too low, they halve the dose. Then I can feel the difference, but still nowhere near the pain from before. I don’t take any other meds (can’t take methotrexate as it upsets my liver). I have had one nasty upper respiratory tract infection since I started, which responded quickly to antibiotics. I have no other side effects, like someone else posted above, I have an infusion and go straight back to work. But others may have some effects. This drug has literally given me my life back.
Hi Fiona, Hope you are doing all right. I cant take methotrexate either. It caused me to have RA lung. Still not feeling no zip , no zap yet, Hopefully when I get my next one in April I will feel better
I know this is an older discussion, but wanted to add my experience. I am also doing an Actemra trial testing the infusion vs. an injection. I just had my 2nd infusion and want to weep with joy. I feel the best I have in years. I’ve been getting weekly injections and believe that it’s a placebo, but either way I’m getting the drug in one form or the other and it’s fantastic. I am taking 20 mg of MTX weekly, which wasn’t doing nearly enough on it’s own.
I was originally diagnosed w/ psoriatic arthritis, then later RA with psoriasis. It’s taken me well over a decade to get the right diagnosis and to begin treatments (other than Celebrex or OTC pain relievers).
Anyway, I’m quite happy with the results. I can stand up from a chair with little effort. The pain in my fingers and wrists has gotten 90% better. As for side effects, I’ve spent some quality time in the restroom. Otherwise, just a little anxiety, which is irrational (I keep worrying that the results won’t last).
The trial has been very time consuming the past 2 months with nonstop testing, screening, blood draws, etc. But, it’s so worthwhile. I really hope others find that Actemra is as effective as I have.
I watched my father deal(horribly)with RA. Methotrexate, predisone, gold shots, etc.may have given some relief in the short term but in the long run it brought on deterioration and heart disease. When I received confirmation at 50 of RA I determined I would not use traditional treatment methods. I’m now 58 and have been able to resume an almost totally normal life. I can now make my bed, garden,clean, vacuum,iron,walk, and generally keep up with the demands of a large, active family all without any medication. In the first 3 yrs a special form of Chinese acupressure, frequent use of a far-infrared sauna, and a juicing, vegetable and fruit diet all worked together to bring my RA from 199 to 81. I have continued with variations of these regimens and have been taking ayurvedic supplements for the past 2 yrs that are healing my joints. If I stop taking them, things flare up. I still have some joint stiffness but no pain. I haven’t seen a medical doctor for the past 5 yrs since we could no longer afford insurance but I only found them to be very discouraging for the few visits I had. This is my story and I’m grateful to God for the improvement I’ve experienced. You can read more about my story on my blog, gaylesarthritis.com.
ive had my 16th actemra treatment and it has helped more than the remicade/humara/orencia.
Hi, I have been taking Actemra for six months, and I loved it until my May infusion. I reacted to it really badly, and my rheumatologist took me off of Actemra. I think we’re going to try Xeljanz next, but Actemra was the only drug I’ve tried in the seventeen months since I first began experiencing symptoms. It’s been really stressful…But I’m so grateful to have found this blog, so far I haven’t had anyone who truly knows what it’s like to have to deal with RA.
I meant to say that Actemra is the only drug I’ve tried so far that hasn’t sent me to the ER due to a negative reaction. I’ve tried a bunch of different biologics, and methotrexate.
Welcome Grace.
it works for me…I have tried everything…lost hope…and now I am month 4 and wow..it works I cant believe it..I do get headaches during infusion that last for 2 days…..but its worth it..I have never had any relief for my RA , (which is every joint pretty much )till now.. I take antihistamines before and during and Advil too. I am off MTX injections too..hurrah..I feel lucky…I pray others will get relief too..but heres hopin for remission..in the future.
I was diagnosed a couple of years ago but quickly declined after major surgery a year ago. It seems all major joints are affected along with the usual smaller ones, my eyes and some skin involvement- not sure of internal organs. We have tried MTX, Plaquenil and Cimzia with little or no results. Over the past 9 months I have also had two bouts of fever >101 and a strange rash on my chest lasting ~48 hours. As the fever subsides so does the rash. I am also prone to low-grade fevers. My rheumy likens this to the symptoms Still’s Disease, which he says involves interleukins and wants to try Actemra (self-injected) to see if we can get results. Seeing the positive results in the preceding posts gives me hope!
I had horrible reactions to Actemra. Literally, it nearly killed me. Now taking Xeljanz – so far so good!