Email a copy of 'My First Actemra Treatment' to a friend
Loading ...
E-Mail 'My First Actemra Treatment' To A Friend
Loading ... Loading ...50 thoughts on “My First Actemra Treatment”
Comments are closed.
Loading ... Loading ...
Loading ...
Praying this works for you.
Thanks!!
Kelly,
I pray that this treatment will bring relief from the wall to wall pain of RA. You are so helpful and generous to all of us. I hope you have found a medication that will allow you to enjoy your wonderful family, especially as you prepare to send your daughter off to college. A big step!
Helen
thank you Helen. This is hard – one daughter staying far away & the other trying to work out college & still help momma manage. We’ll get thru this somehow.
I am joining with you in prayers that this biologic will work for you. I am glad you had a friend to come with you. My doctor has been suggesting biologics now, but I’m not sure I’ll be approved yet. I had a MRI done yesterday of my wrists. Man was that ever painful!!
God Bless,
Mer
yeah its amazing how they hurt if you have RA isn’t it, Mer? 🙁 What do they require there to be “approved” for Biologics?
I hope the 4th med is a winner. Good luck!!
Kelly you are in my thoughts and I am hoping this is the one that brings you some relief from this dreadful disease. Looking forward to that press release that you will one day be able to give!
I pray this will bring you some relief. You surely deserve it.
I certainly don’t have the “wall to wall” type, I have good days – but through every treatment, I have bad days, or should I say BAD days. Though your disease doesn’t sound the same as what I experience, your treatment experience sounds almost identical. I started off with Enbrel – then Humira. And when every other week of Humira didn’t work, the Rheumy said that I must just need to double up and do a dose once a week. This lasted a while – and I too was told it would “soon help”, and it didn’t. When this failed, she started me on Orencia, and I was told the infusions would definitely do the trick. 6 months later… I felt next to nothing. I basically demanded something else, b/c Dr wanted to keep trying with that! So I tried Rituxan….2 infusions totaling 10 hours of infusions 2 weeks apart. I thought well after all that poison in my blood, I have to feel better. I must admit, I had more “good” days… but the BAD days weren’t going anywhere. There may have been less of them, but they were still horrible, where my usual suspects (wrists elbows and ankles) hurt bad, and the rest of me hurt not as bad. So I have had 4 biologics now also, with little to no relief. What really gets me angry is the reassurance from the Dr’s I’ve had that “this will give you relief”. I hear the same thing every time. You will feel better…we are working toward remission etc etc etc. Well, over 3 years later, and I don’t know what remission is! Why can’t they just say that these meds might not work for me? That things “might NOT get better soon”…..
Best of luck, Kelly. Until we’ve tried them all, I guess we just keep trying!
I cannot begin to imagine what you must be going through each time you try a new bio. My husband and I will be hoping for that very special press release.
Thank you for the update Kelly. 4th time’s a charm, right? 4th year/4th biologic, hope this theory works. I am glad the doctor’s say “You’ll feel better” rather than “This probably won’t work” Maybe something in between would be best. You are in my prayers everyday.
I feel for you Kelly. I am now on my 3rd biologic. Did the Enbrel and Humira thing…nothing. And now waiting for the Rituxan to kick in. I am 4 weeks out from my second infusion and feel nothing different. It is soooo frustrating. I was pretty down this week. But my rheumy says it takes some people up to two months to feel better. I think that’s comical since you are supposed to get the infusion every 6 months. Ah well! I suppose I just have to hang in there. You do the same! Thank goodness for an understanding husband and my two little ones. They keep me going 🙂 Wishing you relief!
Wishing you relief too, Annette. I just want to live my life. Hard with this much pain & limitation.
~Hanging in with you 🙂
Kelly,
It sure has taken you quite a while to get started on Actemra hasn’t it?
From what I have read it takes an infusion or two to get thing running smoothly on Actemra. So yes, that would be about 2 months, and even during the month I would slowly notice improvements. For me, the improvement was gradual, and I knew when it slowly started to work. Actemra has got to be one of the most mellow biologics I have been on.
Compared to the enbrel and the other injectible(from a drug study, I only had a code #), were both -slam- it was working days later, and finally tapered off in their ability to have a impact on my RA symptoms. The Remicade, wasn’t as fast an impact, but fairly close, and faded gradually as well.
This said, I am two weeks late getting my Actemra infusion. My team of doctors are trying to figure out what is causing the pitting edema, and heart problems. So, the Rheumatologist had be stop the NSAID, currently was Sulindac, and hold off on the Actemra. Yes, I can honestly say, my mellow Actemra was really working. My SED rate was — 4 –, I have never had a SED rate that low since I started having blood drawn for RA tests. I go in the Rheumy tomorrow, hopefully to have my infusion done. It will be interesting to see what the blood results are, and how long it will take to see an improvement from the Actemra again. I beleve my days of NSAIDs are over because of my currently developing heart problems.
As a side note: I have developed heart problems. According to my Cardiologist this is due to the Prednisone I have taken over the years. That is about all she will say about what is going on, we are still in the testing mode to determine what is going on. Tomorrow I am going in for a CT angiogram. She has more tests she wants to do, just doesn’t want to overwhelm me. Isn’t that nice?? Doesn’t want to overwhelm. Except that I spent most of my time at home alone, just overwhelmed with anxiety. lol agh! Have you ever does a page on the effects of Prednisone, RA, and your Heart? I don’t want to scare anyone, it’s most those of us with severe RA. Just one of those weird offshoots of RA.
Wishing you and your Actemra treatment well!!
Cynthia
Youre right Cynthia, I’ve talked about the heart some & there are several prednisone posts, but I don’t think many people realize how serious the risks are. I do need to write about that more.
I’m sorry to hear you are dealing w/ them. I hope the news from the cardiologist is not too bad. Anxiety doesn’t help either. Is there anything they can do to help with that?
I have RA and currently on Orencia and other pain and antiinflamority meds..I am hoping for Actemra but i have to get my Cholestral down first. RA SUX BIG TIME .
Yes, it does! Good luck Richi!
Hi Cynthia hope your doing better I too have rheumatoid arthritis and have recently found out my thyroid is off which can cause heart problems and I was reading that prednisone causes this now I’m going to have to take medication for it. Hope you’re doing better.
firstly thank you for the tremendous service your blog provides. i visit the site daily.
perseverance isn’t too tricky when the meds are working consistently well. gratitude is more like it.
i pray for perseverance and keep myself very informed and active in my medical treatment.
i have learned to really listen to my body and obey:) if i’m fatigued i lay down, take meds for pain and no longer kid myself that i’m ok when i’m not.
when i feel well, i play like there’s no tomorrow:)
oh good grief, this is a reply for the perseverance thread.
😉 that is ok.
Shaz, I agree – that is a hard lesson to learn about resting and admitting when we have reached our limit. I love the way you put that.
Just had my 2nd Actemra treatment, hard to tell from one day to the next. I have noticed my hair is thinning a great deal.
Keeping everything crossed for you.
THANK YOU :heart:
What about MRIs hurts. I’m curious what to expect if I get one. I’ve had xrays on my hands, feet, and hips. I’ve additionally had ultrasound on my hands/wrists during the diagnosis process, and upon my shoulder and hip when I was having pain. They used it to pinpoint the problem and to guide the needles for kenalog injections. My doc also did a bone density scan in prep for me starting Remicade.
I’ve been on Remicade since December. Was initially told that I could notice improvement as soon as the 3rd dose or so…then the 6th dose…then 6 months…and now they are saying it can take up to a year after starting before I notice measurable improvement.
I had my worst flare ever about a week after my 5th infusion. It responded well to vicodin and prednisone at the ER, followed by a weeklong prednisone taper, but the couple of days it was bad were horrifically painful and frightening. It was during that time I realized a need to keep a walker in my bedroom from now on, because I went from being sore but mostly mobile one day to waking up barely able to walk or crawl and screaming and shaking in pain the entire time. How does one even get dressed, use the restroom, or eat a meal when she wakes up alone and is immediately seized with the realization that every movement is an agony? For that matter, how does one use a walker when her hands and wrists feel like the bones are all crushed inside??
The doctor’s office theorized that I had been entering a flare when I had the infusion. My WBC count had been slightly elevated that day, even though I had no other symptoms of illness or infection. We discussed whether I should even take the Remicade that day, but after they checked me out, decided it was the RA that was elevating the WBC, and proceeded with the infusion, hoping it would help calm the flare.
My most recent infusion went fine, and I actually felt like it slightly helped my symptoms. After the first couple days, I had more energy and less pain. The doc has me taking Zantac, which has an antihistamine that somehow helps minimize the Remicade headaches.
Some of you veterans out there…what do you do when you wake up in a horrific flare like that? Do you just keep moving through the pain? I’m used to pain, but this was just…almost unbearable. It was like every joint was severely sprained or broken/crushed…and my muscles and tissue also seemed quite sore and achy. How do you cope with days like that? I want so badly not to take steroid shots and addictive painkillers, but I eagerly resorted to them to ease the agony I was in. Should I have just waited/hoped for it to subside in a couple days? Only move when absolutely necessary and sob and scream the entire time? Does it do any further damage to joints to put pressure on them–use them anyway, no matter how horribly it hurts to do so?
Oops, Kelly…sorry to hijack the topic here. Your infusion post triggered my thought process. Wishing you blessings for a positive response to Actemra. Would love to hear your thoughts on Remicade and on coping with flares.
Hello actemra user, I have had RA for 11 yrs. & I would love to chat with you. But Iam not pc savy and I don’t know how to initiciate the chat.. Could you email me at jillcut@gmail.com Thank you.
Did the Actmemra work for you?
Hi Anne, I’ve heard from several people who did well with Actemra. However, none of the treatments I’ve tried have made a difference in my RA symptoms. Also, I did not get to continue with Actemra after 3 months since my doctor and my insurance company could not work out the payments – here’s where I wrote about it on the blog.
I know what ya mean! I have had RA & Lupus x 9 yrs and only 1 Time in that time did I have any remission (& it lasted only 4 mos!) I’ve honestly been sick – REALLY sick all these years & we have small children
My daughter is now 17, and has polyarticular juvenile rheumatoid arthritis. She was diagnosed in the 4th grade, and we have had lots of experience with trying natural things and doing the meds. She began treatment with methotrexate and prednisone. They would storm her with steroids to try and get it under control. She was getting worse, so I begged for Enbrel after a year or so.
With Enbrel there was NO improvement. She was still on the Methotrexate, and occasionally steroids. Finally, they injected her joints with cortisone, and wow, it was major help within a week or so. The injections lasted for over a year.
For years she stayed on Enbrel, but it wasn’t working for her, and seemed to make her worse. We travelled often and when we would miss shots her arthritis would improve. I asked the doctor, but he said to keep taking the Enbrel. We had some very busy times and travelled so much for a month or so, and Enbrel was skipped, but she was improving! When I gave her a shot of Enbrel she “locked” up again. I WAS CONVINCED ENBREL HAD A NEGATIVE EFFECT ON HER.
I started doing my own evaluation, and writing it all down. We were going to go off the Enbrel and see what would happen. Each time she would see her doctor he was impressed at her improvement. Every month without Enbrel or Methotrexate she was improving! After about 6 months of his positive exams, I told him the truth. It was not pretty to say the least. I was scared to death! He thought we were wrong in our thinking and it couldn’t be! We made a deal… no more secrets, but she could stay off the Enbrel until her basketball season was over. When it was over, she was doing so well, that he decided to leave her off all meds.
Then in the fall, she had a flare up and was getting bad. He decided to do his “test” for Enbrel. She started it and sure enough, her joints were “locking” up and very stiff. He apologized and said he now believed it. She was so bad by then, that he prescribed Orencia. After 4 infusions of it, with no improvement, and an allergic reaction each time she received it, he ordered her cortisone shots to save the day again. It was 10 joints this time, because she was the worst she had ever been.
That’s when he started ACTEMRA, and within a few months, I believe we have found the MIRACLE DRUG for her. The nurse that participated in a pediatric study of ACTEMRA told us that SHE HAD SEEN CHILDREN IN WHEELCHAIRS ABLE TO WALK. “WHEN IT WORKS, IT WORKS WELL!” she said. Well, I believe it, and am so thankful that it is working for my daughter. Her inflammation is almost completely gone after about 9 months. We couldn’t tell at first if the ACTEMRA was working, because the cortisone injections make her a new person, but now she is improving each month, and it is not the cortisone. She can even make a fist!!! Her rheumatologist is very happy and so are we! So thankful for ACTEMRA:)
Just had my last remicade infusion yesterday and then I too will be starting Actemra. I hope both of us have some sort of relief. Prayers and hope coming your way.
Joyce
Hi, Ive taken my first ACTEMRA infustion on April 8th and Im going for my second infusion on May 12, 2014. I am still waiting for it to work! My feet are getting worse. The pain, headache, and nausiousness is finally going away only to start up again with next infusion. I am also taking methotrexate weekly. I had such high hopes with this drug since the Enbrel I was on for 8 yrs just stopped working; my rheumy says my body built up a tolerance to it. I am no longer hopeful….
Wow, I stumbled upon your site while researching how other folks are making out on this Actemra. I am amazed to be coming across so many similar stories as my own. I just started Actemra this past week. I had somewhat of a successful 8+ year run with Enbrel, (with plenty of pain and flare ups that whole time. BUT way better than I had been a doing previously. Near the end of My experience with Enbrel, I went through about a 6 month period where I was better than I’d ever been, even to the point of thinking that my RA had just vanished as quickly and mysteriously as it had appeared in the first place. Then the Enbrel stopped working entirely. Since then I have been on Cimzia then Orencia staying on each for about a year, they worked for me somewhat, but not to the extent that they should.. So here I am on my 4th biologic, my fingers are crossed and I am forever hopeful. My heart goes out to you all, RA SUCKS
Your story is my story as well.The Humira worked good for me for some years when I was first diagnose.Within the last few years been trying different treatments just as you My Doc has informed me along with the RA I have fibromyalgia been trying to found a treatment that will work earlier this year did a 2 phase infusion treatment Rituximab only experience relief for 24 hrs. Now since time has passed and that med should be out my system I’m scheduled to start Actemra the same treatment next month and God knows I pray that it works for some comfort. I pray that you get some relief and it works for u.
Please save my email I would love to know the out come.if you like please send me your email I would be happy to let you know how I make out.
Feel your pain.
Prayers for you Kelly. It gets a bit scary when you make your way through the biologics and you reach the point that you can’t revisit them and what direction do you take from that point. I see this one working for you and so it is! ♥
ACTEMRA infusions and Sick in stomach!
Hi everyone….i have bn thru all the arthritis meds with either no relief or some relief for a limited period of time! I am now on Actemra infusions as the Orencia injections …altho helped bring down my inflammatory markers…did nothing much to help the physical pain and symptoms associated with RA. I also have had Guillian Barre virus and Ross River Virus so hard to tell which is virus and which is arthritis as they present the same symptoms…this is my dilemna!! I just had my first Actemra infusion abt 3wks ago…no reactions then but te nurse did warn me of nausea! That’s putting it mildly!! Tk about 1 week then my tummy started grummbling badly all the time which made me eat all the time to stop the ‘sick’ gnawing feeling in my stomach. It affects me worse during the night. Wondering if anyone can tell me does this go away cos i can’t live like this with constant gut aching and having to eat 24/7 so i don’t feel it cos as soon as i don’t eat…my tummy hurts and it makes the most awful grummbling and loud noises…its embarassing!
Also…is there any more biologics above this one cos i think the nurse said there isn’t…great! Like the rest of you…this is my last hope…what to do if i have to come off cos its making me really sick in the tummy. Afraid to tell my rheumy in case he takes me off and says …that’s it…can’t have it…can’t do anything more to help you!!!:(
Sheree,
I’m not sure what the nurse meant, but the biologics are not above one another – they work a bit differently than one another and they work better in different people. For now it is trial and error to see if one works for you.
I am starting Actemera next week and as usual hoping for the best after being on remicade,humira and enbrel. Good luck and God bless to us all.
I am going for my firs Actemra soon and am reading everything I can find on it. I have gone through 2 biologicals that helped alot in the beginning but wore out quickly.
Here’s to my success story soon!
Hi Kelly,
First of all, thank you so much for creating this wealth of information, its a much needed resource.
I wanted to check on your experience with ACTEMRA, did it work for you?
If you have written a detailed post about your experience, please pass on the link. It would be a great help.
Thanks
Darpan
Dear Darpan
I just stumbled across this website myself. Looks like a while since anyone has been here. It really did help though to see that there are other people going through the same thing that I’m going through. Some of the times you feel like you’re the only one that is having something invade your body that you have no control over. If there is anybody on this site that is still contact theme would love to come here occasionally and share experiences. Even if that’s just you and me Darpan.
Good luck in the process keep in touch if you need a friend or just an ear to listen.
God bless, Thelma Bell
hi Thelma, this site started in 2009 & most of the posts over the years are still relevant. There are about 28,000 comments w/lots of helpful information. Also on FB & twitter, a large community has grown around the site. You can use the links in the sidebar to connect with us there. Or comment here – all comments are read & many are replied to by me or other readers.
@ Thelma,Thanks for the support.
@ Kelly, Could you please share your experience about ACTEMRA please.
Thanks.
i do not have RA. i have had polymyalgia rheumatica for 9 years and have been on prednisone for those 9 years and added methotrexate (7.5 mgs weekly) about 3 years ago. i do fine for a while and then have a flare, which causes my rheumy to increase my prednisone for anywhere from 15 mgs to 40 mgs for a couple of weeks and then a slow taper down to maybe 3 or 4 or 5 mgs daily. my doc now feels that this combo of drugs is not working as i continue to have flares and she wants me to try actemra. i would rather stay with the drugs i have been using, despite occasional flares. at least i know they have not so far caused serious side effects. has anyone tried actemra for PMR?? sounds like a risky drug for PMR. thanks.
I have ra and humira did not work, I am currently in a flare with an ra factor of 217..I am now on actemr for two weeks now and my ra even seems worse, I wonder how long does it take to take effect. I can barely move anything
Hi All,
Severe seropositive RA, all joints, 38, feel like 85, hoping to dodge having to approach Drs about disability? Is that really where I am at? Very terrified, at this point?! Life has officially unraveled! Lol! Just did first Actemra injection 2/19/17 and this HAS to work, because, my bank account, bill collectors, landlords, etc have all been SO patient, somethings besides my body has to give!!
Kelly THANK YOU for this site, TRULY! I was diagnosed 2014, have been on and off your site many times for guidance reassurance and finally got brave enough to put something out here, maybe my story will help someone else is my goal?! ? My RA is 24/7, I feel like I live in a flare…it doesn’t ever let up, have swelling and pain in ALL my joints, including the one behind your ear. I didn’t even know existed before RA?! Or those ones in your chest? Really who knew?! I have constant fever in hands and feet, and was only recently able to start “treatment”
Failed: mtx, sulfasalazine, Enbrel, and Humira. Humira actually made things worse for me, brought on terrible neuropathy in hands and feet, and large RA nodules in the arches of both feet! And although I got a little energy and a small amount of joint relief from the Humira, it also dropped my immune system so low my allergies were so bad, I started reacting to my fish oil supplements, and had to discontinue it! BUT after doing some major diet changes (due to mouth sores) and still have to do phenergan occasionally with it, I have been ABLE to keep the Plaquenil on board ? AND just did my first Actemra (home injection) this last Sunday, and I have been very nauseous, have had a terrible, headache, and I’ve felt like I had knives in ALL my joints on days 2-3, however today is day 4 and my ankles are feeling lil bit better? for the first time in years?? I don’t remember what it was like for them NOT to hurt SO bad??? And did NOT expect a “result” this quick? BUT just to be experiencing a “change” at all is SO incredibly hopeful for me!? Will update in a week or so or maybe after next home injection. Dr says to do them every 2wks. Will have to do my next one on Friday, so I can be sick over the weekend cuz I’m hanging onto the job by a thread. But I WANT that! Can’t lose it, or I don’t have the health insurance I so desperately need for the RA! Lol! I don’t know how we ALL do this!! It’s taken me 2 LONG years to learn how to tolerate the incompetent pharmacies, and/or Dr’s, and NOT let those things ruin my day, or make my stress level worse, in turn making me more sick! Lol! Wow! How refreshing to have a WHOLE RA community out here, who “GETS IT”! ?? Wishing everyone strength to persevere!! ?
Like many of you, I too have had Remicaid (allergic), Humira, Orencia, Simponi, Simponi Aria and now Rheumatologist thinks Actemra. I am allergic to mice, so, the Simponi was giving me Upper Respiratory problems, and Adenoids inflamed.
I had 9 stitches, a molar pulled and haven’t had a biologic since end of October. I had to get Cortisone injections for relief. I am waiting for insurance approval for Actemra. I’m scared of side effects after reading about it. Wondering if it’s better to deal with the upper respiratory problems
And stay on the Simponi Aria infusions.
ANY suggestions? Much appreciated
Bonnie
I’m on week 4 of Actemra subcutaneous refilled syringes that I asminister myself and after 24/7 agonizing pain and immobility since I was diagnosed 18 months ago with a rheumatoid factor of 267 I had either failed to respond or had adverse reactions with prednisone, methotrexate, sulfasalazine, plaquenil, Arava, Cyclosporine and Humira. When I was able to walk down stairs normally I knew I was finally on to a winner. Last week I had my monthly blood tests and my rheumatoid factor, ESR & CRP were all NORMAL! Best day of my life! I am back in the gym and although I have some permanent fusion of the joints in my left elbow and ankle and some pain on walking or standing for too long that I assume is from a build up of scar tissue in those joints I feel GREAT! The difference in my psyche and energy and optimism are the most noticeable difference. It’s been so hard to feel hopeful having endured such excruciating pain every day. I got so sick of doctors saying every drug would have me “back to your old self in no time”. Do they teach them all to say that in rheumatologists school? I felt lied to, betrayed and went through the grief of denied optimism over and over again until I was bitter, angry, bed ridden, crippled, in awful pain every minute of every day and night and suicidally depressed.
Now for the first time I am smiling and hopeful again. Praying this is THE ONE and that it continues to work for me and that I will be able to continue receiving it in this uncertain times as far as healthcare goes because so far this drug really has given me my life back and I love Actemra!