Has anyone tried actemra?

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Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 7/11/2016 9:15 AM (GMT -7)   
I joined this site today. I was diagnosed with RA 9 years ago. Back then it was aggressively treated with enbrel and methotrexate and for a long time I was fine - I was still me. Then enbrel stopped working. I have tried cimzia, simponi and rituxin but nothing helped. I went back on enbrel and it worked for a short time and then stopped.

When I had my bloodwork done last year, it came back that I was exposed to TB and had to take antibiotic for nine months. I was still taking methotrexate. My doctor also put me on plaquenil and celebrex. I liked the celebrex - it took all the pain out of my legs but I was not on it for long. Nothing was helping and my RA got worse. I did not leave my house last summer except to sit outside. Then at the end of the nine months, I was put on humira. First I took it every other week and then she switched me to every week. Nothing. My knees, ankles, fingers and wrists hurt. Now my doctor wants to try actemra. Has it helped anyone because I feel like I am done. I don't know who I am anymore. I am depressed all the time - so yes, my pill happy doctor put me on lexapro. I don't cry as much as I did, but I am still depressed.

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 7/11/2016 3:58 PM (GMT -7)   
I have to put my two cents in here.

LEXAPRO: Unless the doctor who prescribed Lexapro is a board certified psychiatrist, he really shouldn't be handing out scripts for this anti-anxiety med. It's like asking your house handyman to build the plumbing on the Space Station.

CELEBREX: If this NSAID helped before, why not take it again? I've been on the max dose for the last 15 years - or however long it's been out.

TB: I am also latent TB and because of my age they didn't want me to take the TB treatment. I'm one of those very, very rare cases where the patient was exposed to TB but who was cautiously started on Humira. I was made fully aware of all the TB side effects and promised to call the rheumatologist and pulmonologist at the first tiny symptom that might be TB. That was 5 years ago.

But back to your current situation. I've read many posts on other forums where people were helped on Actemra, so I would give it a shot.

Depression is all too common with any chronic disease. You really have to find a passion and immerse yourself in it. You need to be distracted.

Think positive.......force yourself to get up and walk, if only a little. Once you find the right drug for you, odds are you'll begin feeling better and the depression may dissolve.

Good luck!

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 7/13/2016 1:26 AM (GMT -7)   
Hello Tondeb:

It surely sounds like you were/are having some bad struggles. We can certainly see why you are depressed and do not feel like your young self anymore. We've all been there, some of us still are there. If the Lexapro isn't making you feel less depressed, then maybe your Dr. can suggest an anti-depressant that works better for you.

Unfortunately including myself, too many RA patients get little or 0 relief from these expensive Biologic drugs but that hasn't stopped most of us from trying them. We are desperate for pain free days or at least somewhere close!! The thought of the "maybe" side effects have turned others away however. Thankfully, many other RA patients have reported that the Biologics work well for them.

I have tried a good number of Biologics including Actemra. This is the only one that worked about
20 - 30% for me. The others gave me no pain relief at all. I have to say though that Enbrel did get rid of a nodule near my elbow and a wart on my hand. Darn expensive wart remover. :/

Since your insurance covers these Biologics, please try as many as you can. You may run across one (or 2) that you will be happy with. It can happen! You won't know if you don't try. You need to keep trying, so that your joints stay "pretty", can be pain free and in good working order.

I agree with CA-Lynn's thoughts on proactiveness and thinking positive when possible. I turn on my music and if it's a good day, I still dance to one of my many favourite songs. Puts me in a better mood and makes me smile. I also have a bunny who thumps her foot when she wants my attention. :D So ya, I'm her dog!

Welcome to Healingwell Tondeb and enjoy your day! :)



*The only medications that worked for my severe RA were: Indomethacin, Methotrexate, Myochrysine, Azathioprine and steroids, of course.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 7/13/2016 2:31:24 AM (GMT-6)


Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 7/16/2016 11:49 AM (GMT -7)   
Thank you both for responding. I think I am going to try actemra - my left knee, both wrists, knuckles and ankles are swollen every day. I was nervous about getting an infusion again. I had tried rituxin last year and it did not help.

Its not until I take 2 tramadol and 2 prednisone and use the heating pad that I feel a little better. I dont take lexapro every day. I am going to my dr. monday so I will talk to her about that. I am going to talk to her about celebrex. And I did go out - I went to shop rite the other day and it was exhausting. Food shopping - unbelievable and I did not get alot - My 80 year old neighbor has more energy than me.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 7/17/2016 5:56 AM (GMT -7)   
Oh, I'm so glad to hear that Tondeb!! Good for you! I'll be hoping and praying that Actemra works for you. If it doesn't put you into total remission, then at least hopefully less pain, inflammation, fatigue, joint damage AND Prednisone, as these biologics do for many.

A good chat with your Rheumy and a possible change of anti-depressant(ask if you need to take it everyday, IDK) plus CBT(http://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/home/ovc-20186868) perhaps(?) could be helpful for you. Some patients do well on this therapy. Yes, I know you have to leave your home to do this or maybe not too much. You could ask your Rheumy about that also or check the net for a program near you. Please do tell us what is going on with you whenever you want to or if you have questions or just want to talk.

Well, at least you got away from your home for a while when you went shopping(okay grocery shopping is not my idea of a good time either). I know it can bring more fatigue but hopefully something made you smile or something new that you saw was interesting enough for you to think about in a good way to take your mind off the depressing stuff for a while.

I know what you mean. Some of those older folks are annoying. Sky diving, scuba diving, running longer marathons than some young people, jogging down the street every morning at 5 a.m., etc.
Who do they think they are anyways? :) I remember my Mom when she was at the age I am now. She could do 10 things at once, successfully look after a huge garden along with all her other work, walked faster than a speeding bullet and so on, while I dragged painfully behind her ready to collapse. I'm 30 years younger than her for heavens sakes. I was happy for her back then but it wasn't fair for me.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 7/17/2016 7:06:03 AM (GMT-6)


Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 7/19/2016 1:59 PM (GMT -7)   
Hi, I am sorry to hear about your suffering. I can totally relate to your frustration as I have felt the same way for about 2 years now.

I was on Enbrel for about 12 years and it worked great. It stopped working and then I was put on a slew of other meds. Prednizone being the one that helped and hurt the worst with side effects. I am now on Actemra and have been taking it for about 2 months maybe. It has helped some, maybe about 20% or so but the side effects with it have been really hard to bare as well and I am not sure how much longer they will have me on it.

The only medication have left at this point is Remicade and I am really hesitant to take it because my immune system is so shot at this point with the decades of suppressants but I will more than likely try it because otherwise I literally have no life. As it is I am not able to work anymore and rarely do I leave my house. I try to make it to church and some days I feel good enough to go shopping with my wife but that is it.

It is certainly not easy with RA. I hope that whatever you decide that you are able to get some relief and feel like yourself again. Glad you found this site, it's one of the best in my opinion.

-Don

Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 7/20/2016 4:23 PM (GMT -7)   
I went to my doctor Monday and have to wait 2 weeks to start actemra because I took humira shot last week. I got a cortisone shot in my knee and that has helped me walk better. My fingers and wrists are a mess.

msOuchie - I used to be able to do everything and everyone would depend on me. I miss those days. What side effects did you have from actemra?

Don D - what are your side effects from actemra? I will try anything at this point but honestly I am nervous about it.

And right now I have a large copay every month - $240 - because all I have is medicare - no supplemental insurance. But if this works, I will go on a payment plan.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 7/21/2016 8:07 AM (GMT -7)   
Hi. well for me stomach problems are the big one. I take a shot and my stomach feels swollen and painfull for the next few days. I am trying to get an upper GI scope done due to it and also the problems I have with ibuprofen and other NSAID's.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 7/22/2016 10:26 PM (GMT -7)   
Hello Tondeb:

Wonderful! Now that was a successful appt. :) I hadn't even thought of a Cortisone shot for you.
I've had one of those in each knee. They worked a long time for me. I hope the same for you. Actually, 2009 was the last time(left knee) and my left knee just started hurting again and clicking this time, about 2 months ago. The pain stopped though. Could be the Xeljanz helping.

I was going to wait until my RA appt late Aug. but I may have to sneak in for a sooner appt. I'd
like both knees x-rayed, to see if I now have Osteoarthritis in my knees along with RA or a torn
Meniscus or total cartilage kaputness. I've had OA for about 12 yrs. It started in my lower back.
My Mom has never had RA(my Dad did) but has had severe OA for some time. Never used steroids.

The side effects that I had from Actemra was a bit of weight gain(less than 10 lbs) and I think some dizziness when getting up fast. Neither serious.

Ya, I'm sure that you have a lot of good memories from back then. I bet that you were a great cook and organizer also. If lucky, my cooking was good; if unlucky, there was a lineup at the bathroom door. :D Well, they all lived through it. I was a much better organizer, artist, child care provider, furniture lifter/mover(when in remission) and laundress.

Sorry, that I was late answering your post. I had my Carpal Tunnel surgery July 20, so I couldn't do much of anything. I was on here Thursday or Friday and tried typing but gave up. It was still sore.
I'm definitely not a south paw!
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 7/28/2016 10:19 AM (GMT -7)   
I was on Actemra for 8 months in 2013. It worked about 10%. But it also made me 10X more tired. I was sleeping 14-15 hours a day. I could barely lift my head off the pillow. And when I was up I was exhausted, and not just from the pain and flares that were not under control. I was put on Nucynta for the pain, and ended up on prednisone just to get me moving.

I finally decided it was not working, and went onto Simponi which was excellent but only last 6 months. The last 18 months I have been looking for a good combo. I am now on Arava/Orencia. I don't have any side effects, but my hands are still a mess. I've been given permission by the liver specialist to go back to mthx, which dramatically affected my liver when I was on it from 2000-2009 (gradually getting worse). My hope is that my liver will be stable, and I am sure the mthx will control the hand and wrist flares.

But getting back to Actemra, just because it didn't work for me, doesn't mean it won't work for you. When I was getting my infusions, there was a young, bubbly woman also getting an Actemra infusion. She was agile, and flare free. She told me she "got her life back" with Actemra. So I would encourage you to try it.

Sadly, science and medicine still do not understand totally the mechanisms behind these drugs, and why they work well for one person and not at all for another. Actemra attacks the Interleukin 6 cells in the body. I was on Kineret with mthx for 4 years, which attacked the Interleukin 1 cells, and I had high hopes for Actemra. But, as in math, 1 does not equal 6. LOL!

Let us know what happens with the Actemra.
"More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character and character produces hope. And hope does not disappoint, because God's love has been poured out through the Holy Spirit who has been given to us." Romans 5:3-5

Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 7/29/2016 11:42 AM (GMT -7)   
Hi everyone - I have not been here in awhile - my daughter just got engaged! So now I have to get this ra in remission.

I go August 9th for my first infusion but today I am a mess. I dont know if its because of the rain but the top of my hands and feet are swollen. I hate being on prednizone and methotrexate. I have an hemangioma on my liver and a cateract in my right eye from these medications. I hope I dont feel worse until August 9th. I am not on a biologic right now. But good news - my copay is $60 instead of 240.

In the past 9 years I have been on enbrel (which was great for a long time till it stopped working), cimzia and simponi (for a short time and they did nothing), rituxin (very expensive and did not help) xelijanz (which helped my legs but I was on it only for a month and stopped because of the stories about it causing tears in your stomach) and humira (which seems to help the day I give myself the shot but then thats it)

msOuchie i hope you are feeling better. And thanks to everyone who responded.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/1/2016 5:20 PM (GMT -7)   
Congratulations to your Daughter and her fiance!! :) Wishing them a happy future.

I'm sorry that you are not feeling well due to the pain and swelling. I looked up
hemangioma since I'd not heard of that one. Whew! Thankfully, it is benign.

Ya, I had cataracts from long term use pf Prednisone also. I was amazed how clean
my walls actually were and it was great to see bright colours again. All this will pass.

Good luck to you on your first infusion. I didn't start noticing a difference until after
my second infusion but maybe yours will be sooner. Let us know if and when you feel
better. It's always interesting to hear. I've never had a medication work for me, as
long as Enbrel did for you. Good to hear.

That's a heck of a difference in co-payments. Fantastic!

Thank you! Getting up is still painful but after about 1/2, I start feeling somewhat better
than I was before Xeljanz. I won't go into remission by the looks of it though. Oh well....
I get the stitches out of my hand on Wednesday. It is still a bit numb but not like it was.

Feeling better vibes sent your way, Tondeb.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 8/14/2016 7:47 AM (GMT -7)   
I went for my first actemra infusion last week and I feel no difference. My finger still locks up, I have a difficult time walking, my knee is swollen again, my ankles are swollen. I told my dr. all this and she said to stay on prednisone and methotrexate and give actemra a chance. What do you do in the meantime? Those pills help a little but I have been on them for awhile and honestly dont want to take them anymore. This is what happens. I go to a rheumatologist and get encouraged that I will get some relief. But after 9 months or so and no relief I try to find another dr. I seem to bounce from one dr to another. I live in NJ - has anyone found a dr that actually helped them?

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 8/15/2016 11:02 AM (GMT -7)   
I hope that your meds start helping soon. We all know what its like waiting trust me. You are not alone in this. -Don

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/15/2016 10:54 PM (GMT -7)   
Hi Tondeb:

No, you shouldn't expect a difference yet; from the Actemra that is. It took me 2-3 infusions before I did feel 20-30% better than I was before. I stopped taking it because I expected too much, which I regretted later. Then I was left with nothing but Tramadol(didn't work much), Indo(somewhat) and higher Pred dose(but not high enough to relieve the pain), for years. I did try Actemra again later but it didn't work at all the second time around.

Gee, I'm surprised that your knee is sore and swollen already, it's only been a month since the injection. I'm disappointed! The first time, I had a painless shot in my knee, it was swollen and it was good for about 5 mths. The last time I had the painful shot in my knee(2009), it was not swollen and it hurt like Heck. The knee pain just arrived back about a month ago. Incredible! I'm pretty sure the cartilage is gone or torn in one spot in my knee.

You didn't say how much Tramadol or Pred you were taking. More Pred would be helpful except for the cataracts. Did you ask your Dr. about going back on Celebrex and/or taking more Tramadol?
No, I am not a pill pusher but I, like so many others, know how disfiguring and how unbearable this pain can get throughout the body, if we are not on the correct doseage and the right "chemical cocktail." That's why we will try almost anything, to get away from that possible future. I'm feeling better now RA wise but I'm not sure if it is the Morphine or the Xeljanz working the best or both together. My hand has healed well. The torn do-dad in my shoulder feels better(probably the Morphine). As long as I don't extend it. My knee is a bugger now too. Patience Girl!! :) Sorry, I know it's painful.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 8/16/2016 6:59 AM (GMT -7)   
Hi Don and msOuchie:

I just called my dr to see what I can do between now and my next infusion. So I take (7) 2.5 mg of methotrexate one time a week, (1) tramadol hcl 50 mg daily, (1) folic acid tablet daily and (2) 5 mgs of prednisone daily. But I am worried about that cateract in my eye - I go back to eye dr next month. Ive been taking restasis for while because of dry eyes. Then possibly cateract surgery next month. woo hoo! this just sucks. I stopped the lexapro because I read online its dangerous to take lexapro and tramadol together. I didnt want to take it anyway. When I first met my dr last november i was depressed during our consultation. She asked if I wanted to try lexapro so I said ok. But I am depressed because of my health. Get me in remission and I wont be depressed anymore. The celebrex I dont remember how much I took - it was prescribed by another dr. and he only prescribed it for a short time. I was on xeljanz with a different dr and my legs felt great. It was me who went off of it - I was nervous about the side effects but you know what, right now I could care less. My hands are a mess. So thats what I will talk to my dr. about today. I was diagnosed with ra 9 years ago and have been to 3 drs during that time.

I was surprised too about my knee being swollen again after getting that shot. My dr said I could get another shot next time I go which is next month - I have to wait 3 months for the next one? I thought it was longer than that.

When I go with my daughter to look at wedding venues, I walk behind everyone. I make jokes about the way I walk but it bothers me. So once again, I am not leaving the house. But Don and msOuchie, tks for your input. I look forward to your responses.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/17/2016 10:34 PM (GMT -7)   
First important question: When is your Daughter getting married? How exciting! I love weddings. :)

I read somewhere that you could have the Cortisone shots every 2 months but my Rheumy said he would not give them sooner than every 3 months. Thankfully, they work for me. I have only had 2 in my left knee so far and about 3 in my hip through the years. None since 2009. I suppose circumstances could change how often a patient is given a shot. I just read that a risk factor of cortisone shots can be a flare up and swelling in the joint. Wonderful! That is what we are trying to get away from.
I have to walk funny too sometimes, as you mentioned.

I was taking 12 mg Pred and 100 mg Tramadol, 4 times a day. I confess, I was taking more than that. The pain was excruciating. Plus other drugs. We were having my Mom and other family members over to our place for Christmas, so my Rheumy raised my Pred to 30 mg which helped me get through the holidays. I'm down to 11 Pred now, I am off the Tramadol(no withdrawal) since it did not work for me and on Morphine indeed. Plus I have been on Xeljanz since April. I do not like taking drugs either but I hate the pain and inflammation worse, so I may as well take what I need.

My CRP was 68.2. Last one was down to 52.6. I expect to see it in the 30,s when I test this month since I have been feeling better. What was your last CRP Tondeb?

RA causes inflammation and pain. Inflammation is bad for every part of the body.
Pain is bad for the soul. Pred gets rid of inflammation and pain at the right dose and usually the doseage is lowered after the inflammation and pain is much less or gone. Short term at higher dose.

Cataracts normally develop after a higher dose and prolonged use of Pred. I had my cataracts out years ago. They put nice new lens in, so I can see better.

I do not get depressed either. When I am in so much pain that I can not move, I cry a bit. Then I get MAD at the pain. I get up slowwwwwwly and push my way through the pain, to my meds and walk around until they start working. That was before the Morphine and Xeljanz.

I hope that you are having a better day Tondeb.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 8/17/2016 11:48:26 PM (GMT-6)


Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 8/18/2016 12:28 PM (GMT -7)   
I hope that you are feeling better. It can be really hard building a lasting relationship with a Doctor but I hope you find or have one who you trust. I know that some Doctors do not have good communication skills as well and this can be a challenge with the clinical nature of physicians at times but given our situation; that RA is a lifelong chronic illness it really is in our best interests to develop a trusting open (hopefully long term) relationship with our Doctors.

We all want to be in remission that is for sure. I hate to say it but I am pretty sure that those days are far behind me personally unless some new miracle break through appears and I'm not holding my breath. I have almost exhausted the RX road with my disease and my Doctor told me last week that I need to file for permanent disability with SSD. :( I just try to make the best of each day today. Easier said than done some days.

It was a real bummer to hear her say that but on the other hand it was a relief. I trust my Doctor and I know that if she could she would definitely get me into remission (and back to work!) but she doesn't have that power unfortunately. She has done all the right things to try to help me and I am grateful to have her even though she can be a bit of an authoritarian at times she does explain her reasoning to me. She is a good Doctor.

Again, I hope you feel better. I have had steroid injections in the past but they never lasted longer than a week for me so i don't even bother anymore but it is great that they help you.

Take care! -Don

Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 8/19/2016 10:23 AM (GMT -7)   
I forgot to mention that I am on fosamax too - 1 tablet weekly. I need to find out my CRP. I honestly dont know.

My daughter is getting married in 2018. I always wondered why people waited so long to get married. Now I know - MONEY!

I am on permanent disability, and I would rather be back at work. At first I did not mind being home but I hate it.

I feel better today - we will see about tomorrow. My next infusion is Sept. 6th. along with the cortisone shot in my knee. Hope both of you have more good days than not so good.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/31/2016 12:48 AM (GMT -7)   
2018? Awwww! I was hoping that we'd hear some exciting play by play within a year. Oh well, saving up money is certainly an understandable and Smart reason to delay it. Do you know what colour of dress you will be wearing? :D At least you'll have time for the medications to take effect full force. Or perhaps get on another one for some time before the wedding, if the Actemra isn't what you want. How are you feeling these days, Tondeb?? I do hope better than you were. There may be some bad days but as long as there are more good days, that's a plus. Yay, Sept. 6th is so close. Athough, I'd prefer it to be June right now. The year is flying too fast.

I was at my Rheumy appointment yesterday. Most of my tests are good so far. I was shocked to see that my CRP was 17.4. I was hoping for the 30's, so this is great. 10 or less is the normal. I have been feeling better for sure. I still have some pain and fatigue but as I said, I am not expecting remission which is okay, as long as I can move without severe pain and extreme fatigue, like the last 11 years(except for the high dose Pred vacations). I think my Rheumy is happier than me now since he promised when I was young that he wouldn't let me get disfigured. Well, it's not his fault that my body has been resistant to most drugs.

I know how you feel about not working. I had planned to be back at work after my youngest was in Grade 2 but my Rheumy said he was putting me on disability, since I had more than my hands full raising my family and attending to my diseases. I thought he was kidding and refused disability until my pain and fatigue were so unbearable, that I didn't have a choice. I needed help!! So goes the same for you and anyone else who needs it. It's not a gift. We all deserve the help for what we worked for. So do not deny yourself or feel bad about it. You'd give it up in a heartbeat, if you were healthy again.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 8/31/2016 2:04:23 AM (GMT-6)


Tondeb59
New Member


Date Joined Jul 2016
Total Posts : 10
   Posted 9/11/2016 8:01 AM (GMT -7)   
hi everyone - i had my second actemra infusion last week and i still feel the same except i am getting nosebleeds. anyone get nosebleeds while on actemra? in the past month since i started taking it ive had 4 nosebleeds. i told my dr about it and she is checking my platelet count. with all the drugs ive taken over the years, never once did my nose bleed. i dont know. and i had another cortisone shot in my knee which helped more than the actemra. so i go again next month for another infusion. right now, my fingers lock and my knuckles and ankles are swollen. yipppppee! i hate ra.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 9/14/2016 9:54 AM (GMT -7)   
Hello Tondeb:

No, I have never had a nose bleed with any meds that I've been on(touch wood).
Sorry, that this has happened to you and that you don't feel that the Actemra is helping
you yet. Fingers crossed that you will feel pain relief from your next Actemra infusion.
Hopefully your Rheumy will figure out why you are having the nosebleeds or nicer yet,
that they stop.

Ugh! I don't blame you Tondeb. I thought Type 1 Diabetes was bad enough. But now
I just find it a pain the the butt and scary sometimes. I hate RA!! Oh and Osteoarthritis
isn't any fun either. If it isn't one arthritis, then it's the other paining or both.
Good wishes to you!
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 9/14/2016 11:01:12 AM (GMT-6)


Emmarah
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/2/2017 9:29 AM (GMT -7)   
HI.

I don't know if you continued with the actemra, but My eight year old daughter got the flu and adenovirus from her friend in December 2016, and it triggered systemic onset idiopathic juvenile rheumatoid arthritis. Took her rheumy seven months to get the right diagnosis.. Long story.
Anyway, my baby girl started actemra in August, infusions once every two weeks. Ten days after her first infusion, she woke with a shocked look on her face. I thought she was going to collapse again. But no, she woke with no pain for the first time in eight months!
Long story short, she's getting pain again because her steroid dose is being lowered. She's now on 9mg a day, instead of 50. So, she's getting pain from what the steroid isn't covering. Takes around three weeks at a time for her to feel different and be able to handle it. But she has some really good days.
I'm thankful she's on actemra. Her crp was over 200 (should be 8 or less) and her other inflammatory marker was over 2000. yep, 2000. Her bloods are normal levels now, except for her white cells. But then, as stated, her steroids are being reduced (slower than her rheumy wants me to but i won't see her suffer more).
I do hope you have found your right medications. My daughters rheumy won't even give her pain relief, and the nurses described my daughter to her as 'a woman in active labour'.. she couldn't keep still on the bed, she couldn't even pee. so the difference is amazing, but her pain is there due to the roids. lol. roids.

KaHa
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/12/2017 5:52 PM (GMT -7)   
Hi Emmarah I'm glad your daughter is better. She sounds very brave. I've just started Actemra subcut injections (had a month), and I've had so many "cold" and "sinus" infections that I'm wondering if I need to give it up. I was on Humira, also on methotrexate and prednisone. I'm 47 and have a seronegative arthritis. I'd love to hear of anyone else's experience of Actemra and respiratory problems and whether they had to give it up.

Emmarah
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/13/2017 1:20 AM (GMT -7)   
I'm sorry you're having problems on actemra. One of the side effects is cold like symptoms. My daughter often wakes with a sore throat. I don't know if it's part of her sojira or the actemra.
But I will cross everything that you can keep it up, it changed my daughters bloods withing ten days smile
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