Another New Rheumatoid Arthritis Drug for Me? | Rheumatoid Arthritis Warrior

Another New Rheumatoid Arthritis Drug for Me?

Warning: this post is about the author.

Decision about a new Rheumatoid Arthritis drug

The blog is going up a little late today. I couldn’t write last night no matter how hard I tried to stay awake. A long day on the road and a talk with my doctor about starting a new Rheumatoid Arthritis drug ended with me collapsing into a long deep sleep. What’s the saying? Like a horse, rode hard and put away wet.

I never want to write about my own Rheumatoid Arthritis. Personally, I only mention it around my kids – or other people with Rheumatoid Arthritis. I know some of you understand why I’m so private about RA since you tell me the same things sometimes.

The doctor and I decided that my next Orencia treatment will be my last. That will take me to the six month mark which will show that we gave the drug every opportunity to disrupt this four year old flare. The doctor also told me that the coughing she’s been monitoring during the last five and a half months is a rare side effect of Orencia. I had begun to consider that was the case.

I feel like I’ve been a good soldier about fighting RA. Whether it’s giving myself methotrexate shots and never complaining about side effects or taking cough suppressant every day for months or fighting insurance battles when necessary or trying whatever new Rheumatoid Arthritis drug that’s prescribed, I feel like I’ve done everything I’m supposed to do. I’m polite and quiet around those who don’t want to hear about RA (most everyone). In most areas of life, conducting oneself properly is worth something. Once again, Rheumatoid Arthritis breaks the rules.

The new Rheumatoid Arthritis drug will be…

My new Rheumatoid Arthritis drug will be Actemra. Too bad they don’t have to pay for this ad space. 😉  I’ve only done a little research on Actemra for a post when it was approved in January. So, the doctor gave me some homework.

Personal note: Believe it or not, the worst thing for me is that Actemra is administered intravenously. Last time I went to the cancer center where I have to get the IV, I promised myself I’d never go back there. The nurses have been physically rough with me every time. I never complained when they’ve carelessly spurted blood on my clothes and handbag or behaved rudely to me or my daughter. I almost complained the last time I was there, because the nurses were harsh and the IV hurt and my arm bled and created a four inch bruise that lasted a couple of weeks. I came home upset with no one to tell (since talking about RA is “unacceptable”) so I posted it on my personal Facebook page. Many of my FB friends have RA so I thought that was a safe environment. One of them was irritated that I sounded negative. I guess that’s true; this isn’t positive news, just honest.

My dilemma is that the doctor insists the new Rheumatoid Arthritis drug Actemra must be administered in that same center. No alternatives. It was a big relief to find this RA doctor last year. Now where did I put that eject button?

Recommended reading:

 

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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89 thoughts on “Another New Rheumatoid Arthritis Drug for Me?

  • April 30, 2010 at 12:19 pm
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    Bless your heart, Kelly. I am praying that this will be the one that works. But, please, do not let those folks at the IV clinic be rude to you. That is just unacceptable. And, please always know that you can complain, yell, cry, whine, have a hissy fit or anything to me anytime you want to! My email is listed above and I am on FB.

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  • April 30, 2010 at 12:35 pm
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    Kelly, you absolutely do not have to put up with rough treatment from the nurses!! If you don’t stand up for yourself (politely, of course) then do it for the all the patients that follow. I used to be so intimidated by nursing staff and would meekly allow them to be abusive because I felt that if I spoke up, it would be worse. Not anymore. I politely but firmly ask to speak to a supervisor and I am amazed at the response. Job security is not a given anymore and there are several people lined up to take their jobs if they can’t do them right.

    Good luck with this new treatment. We all want to know how it turns out.

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    • May 1, 2010 at 12:07 am
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      That is it exactly: I fear it will be worse. I had decided I’d just leave. Now I can’t. So, I’ll have to devise a plan.

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  • April 30, 2010 at 12:38 pm
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    I do hop0e that the Actemra works for you Kelly. When I was in having my Rituximab for the first time a lady there was trying it out. It was her second infusion and she thought it might be helping her, but it was a little early to say really, but she was very positive about it.
    There is no need for health professionals to treat you in such a manner, having said that the first Infusion I had back on the 29th March I still have some bruises from the IV! The second lot the Doctor had to put the catheter in as they nurse couldn’t find a vein! My hubby was appalled. I’m taking him in with me next time as asking if he can put it in for me. He’s much, much better at it then they are, either that our I’m going to ask for Doctor Courtney to do it as his IV didn’t bruise at all.
    Good luck at the clinic when you have to go in. At least it doesn’t take as long as the rituximab…
    All the best, Jakki. Xx

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    • May 1, 2010 at 12:10 am
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      Thanks, Jakki. All the best to you too! I never heard the catheter story before! 😯

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  • April 30, 2010 at 12:46 pm
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    Kelly, thanks for posting this. Yes, surprisingly, rudeness happens in hospitals for no good reason. Please don’t put up with it (but I know it’s just one more thing you have to cope with). I’m also interested to hear how the new drug works out. Thanks for all you do.

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  • April 30, 2010 at 1:08 pm
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    Kelly, I’m sorry the Orencia treatment didn’t work but so thankful there are other alternatives out there to try. I don’t quite understand why the Dr. is adament about where the IV is administered. I took my remicade infusions in the GI – Same Day Surgery section of the hospital. I did experience a rough nurse or two but I always let them know they were being rough and usually they apologized and were more careful. I hope your DR. will reconsider and let you take the treatment where you are more comfortable. After all, you will be spending many hours there and you deserve to be in a place that makes you feel better emotionally as well as physically. Love to you.

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  • April 30, 2010 at 1:43 pm
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    Kelly,
    Thanks for your honest sharing. I do understand why you don’t want to talk about your own RA; I’m the same way with mine. But your honest (*not* negative, just real) sharing is helpful to me and to others. Though I tend to keep my RA sharings to myself, I appreciate reading about the experiences of others. It helps in many ways.

    I’m sorry about your experiences in the cancer clinic and hope that, somehow, that environment improves and becomes kinder to you.

    Prakasha

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    • May 1, 2010 at 12:14 am
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      Thank you, Prakasha. At least we can safely tell one another about RA – & hopefully we can build from there. The world does need to know the truth – that would help us all.

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  • April 30, 2010 at 2:16 pm
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    I hope and pray you find a better experience this time. I have found a voice to speak up about IVs and such. There is no reason for them not to be gentle.
    I do find RA is a conversation stopper. Either that or people say -oh yea, I have a touch of that too. Aaargh! Sometimes, you have to vent to stay sane!

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    • May 1, 2010 at 12:15 am
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      Ah yes, “a touch of that” – most I know have that. :chic:

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  • April 30, 2010 at 2:31 pm
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    Kelly, I love hearing about your RA journey, not because it is full of optimism and hope or because the treatment is going so well but because it is real, it is you and I can relate. I only hope that this new treatment brings you the much needed relief you and all of us are praying for. I am so sad to hear that the nurses are so rude and manhandle you. I would suggest calling and speaking to their boss. That sort of behavior is not ok for a hospital setting no matter what the diagnosis is.

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  • April 30, 2010 at 2:35 pm
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    A new drug, another ray of hope. You are in my prayers. Also for better treatment at the cancer center.

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  • April 30, 2010 at 3:35 pm
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    Kelly-

    I pray that this drug helps you and helps you quickly. Thank you for sharing your journey – the good and the bad.

    Now about those nurses… do you have an assertive friend that can go with you and help advocate for you? Sometimes it’s hard to speak up for our own needs. Also, it can be good to have a witness.

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  • April 30, 2010 at 5:29 pm
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    Kelly,

    Why not talk about YOUR RA? All I do is talk about MY RA, and I get great response.

    I too am about to try a new biologic. It will be my 6th, after previously failing 5. I’m saving Actmera for last b/c my doc is worried about the gastric tearing side effect. Read up on that before making your decision! In the end, I know you’ll use science and good judgement to make your decision, so good luck!

    – RA SB

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  • April 30, 2010 at 5:43 pm
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    Kelly, In so very sorry you were treated so mean by so called nurses. I was a Nurse for 38 years and there is no excuse to be nasty and rough with a patient. I wish there was another place you could go for your TX. It brings me to tears to think those nasty ones are out there.They have no idea what you have to live with 24 hrs a day. I believe what comes around goes around. My Reumatoid Dr. does his own infusions in his office, he has an infusion room staffed with the kindest nurse around. I was terrified with ny first infusion. I had no idea how a strange to me infusion meds. was going to effect me. The staff was great and in a few minutes I calmed down. That’s the way it should be and I never told them I was a reired nurse. I wanted to be treated like a patient. There was a room full of people being infused and they were kind and gentle to everyone.I have the world’s worse viens and they often have to stick me more than once. They are very considerate.No blood was spilled anywhere,just on the gauze. Is there a Supervisor there that you could talk too. I hope that you can go on with a new Tx. somewhere therebis a right medicine for you. I will keep you in my prayers. You are one special lady and a real warrior. Im so happy I found this place. God Bless:o) oh P.S. you know I think hateful people suck on lemons all day long, that’s what makes them so sour LOL.

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    • April 30, 2010 at 5:47 pm
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      Please excuse my typo’s My hands are numb and painful too today and wandering all over the board lol. Please E-mail anytime.:o)

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    • May 1, 2010 at 12:20 am
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      Maybe I should bring these women some lemons. Haha. :footmouth:
      Anyway, thank you Patricia. It means a lot. I have not spoken to the supervisor yet – one of my teens observed her one time being ugly to someone – so it made me gunshy. But I’ll be forced to do something now. Still not sure exactly what.

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  • April 30, 2010 at 6:53 pm
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    Treating you like that is inexcusable. Did you tell your Dr of their mis-behavior? I’d ask why I had to go to that particular facility Surely there must be some other place to go!

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    • May 1, 2010 at 12:22 am
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      Doc said it was the only place where I could remain under the direct care of the same doc. I asked if there had been other complaints to the doc & was told “no,” but like me they may have been too afraid to lose the good doc…

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  • April 30, 2010 at 8:13 pm
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    Kelly, I wish you all the best with your new drug. I am sorry the Orencia didn’t work. Hopefully this new one will. I know it is hard.

    I agree with everyone else that being treated like that by the nurses is inexcusable!! If anything a nurse working in a cancer treatment place should have more compassion. You have every right to complain. Would telling your doctor help? Maybe there is another place you can go. I am lucky, my infusions are done at my rheumy’s office, he has an infusion area and the nurses are the kindest, sweetest I have ever met. I wish you could have that too because getting these infusions is traumatic enough without the staff being rude. Let me know when you go.
    xoTaffy

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    • May 1, 2010 at 12:23 am
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      Well I guess I will, but you snuck one in on me. How did it go for you?

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      • May 1, 2010 at 7:40 pm
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        Yes I did. Didn’t want to be a bother and i was trying to be brave. LOL. I cried again when they hooked me up. Oh well. Won’t be sneaky again 😀

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  • April 30, 2010 at 10:28 pm
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    I wish I could move you to Tuscaloosa, AL or at least “beam” you here when it’s time for your treatment. My rheumatologist’s nurse does all our infusions and she is a terrific sticker as well as a person who adapts to each patient and makes them feel like they are the most important person around.
    I’m praying for you now that the CA center will have a new employee or two and some new attitudes about caring for their patients.

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    • May 1, 2010 at 12:24 am
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      I have friends near there & my aunt lives there. That would be great. I keep saying I need to get an airplane! :chic:

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  • April 30, 2010 at 10:47 pm
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    Kelly,

    I hope that the new med will be the one that helps turn around the course of your RA. You have had such a hard time of it.

    I am so saddened to read of your experiences at the IV infusion center. Like Patricia, I am an RN with many years experience, and whenever I hear of patients being treated poorly it troubles me greatly.

    I agree that it is unacceptable for a patient to be treated roughly or in a careless manner. Blood should always be contained. Yes, sometimes venipunctures or IV sites bleed unexpectly, but any spill should be immediately attended to and the spill cleaned up both as a matter of courtesy and for prevention of the spread of blood-borne pathogens to other patients.

    There are many wonderful nurses out there – hard working individuals who’ve spend years refining their skills and developing their knowledge base, and who work with great dedication to provide safe and excellent patient care. And yes, there are some burned-out nurses who have lost, or maybe never had to begin with, their caring touch and desire to provide the best care possible. I hope, and believe, that the latter are a minority, and if their supervisors are made aware of their poor performance, that changes will be made.

    I agree that if you can, its a good idea to take along an assertive friend with good people skills to support you and act as your advocate if need be. Its hard sometimes to be your own advocate when you are the patient. Its just too many hats to wear all at once.

    You are also well within your rights to tell your doctor that you had a bad experience at that particular infusion center. Any doctor worth his or her salt will care deeply about what kind of care their patients are receiving at the facilities they utilize. You may also wish to contact the unit supervisor or patient ombudsmen at the center with a report of your experience. Being a professional means being accountable, and they should respond appropriately.

    Best wishes to you Kelly. Its hard enough to live everyday with a chronic disease and to have to endure the discomfort of frequent blood draws and infusions without having to worry about how you will be treated at the lab or infusion center. I hope that your next experience will be better and that the Actemra will work well for you.

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    • May 1, 2010 at 12:27 am
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      Thanks JoAnn. So much wisdom. Too bad you are retired from nursing.

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      • May 1, 2010 at 11:00 am
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        Kelly – I appreciate it when you share your personal RA stories. They help me to think about/prepare for different scenarios.

        There is nothing I can add to what JoAnn wrote, so I will just say “what she said” and offer you best wishes for new drugs that stop that flare.

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  • April 30, 2010 at 10:57 pm
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    My dear friend, do not stand for another bad infusion time!!! Remind those so called “nurses” that their paycheck depends on patients like you. Let them know that as a patient you have rights and they are being violated. You have the right to compassionate care at all times. This should not reflect on you as a patient. Yes this advise is coming from a nurse! All nurses go through classes and continuing ed. every year on patients rights. Do not put up with those “nurse’s” AGAIN. I am hoping and praying that the new meds. will do the trick for you. I will be starting Orencia in the next 30 days.

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    • May 1, 2010 at 12:30 am
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      I will try. I wish you could come handle them for me. O:-)
      So that’s your news – big news. :clap:
      By the way, why do so many nurses have RA?

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  • May 1, 2010 at 1:20 am
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    Hi Kelly,

    It could be that, while your infusion nurses could be less than optimum, so are your veins……

    I can’t address their attitudes, but can offer some insight on why they may be having so much trouble accessing you.

    I used to be what they called an “easy stick”. I worked for many years for a company that made diagnostic test kits. We used to sponsor employee blood draws to get so-called “normal” blood samples to test the kits. Every six weeks, I’d get 8 tubes of blood drawn. It helped the company QC the product, and I got 20 bucks for it. Easy peasy, because none of the in-house phelbotomists EVER had a problem accessing my veins. In fact, they’d LOVE me, because I was so easy, they’d call over the noobs to practice on me. (Extra $$$$ for that…)

    Then I got RA. Between the infusions for the drugs, and the blood work, and the general crap from the disease itself, my veins gave out. They’re still plenty visible and enticing, but they’re so full of scar tissue from repeated insult that an IV needle, or a needle on a syringe, cannot advance. It hits scar tissue and rolls off, so the infusion goes into the surrounding tissue, or the nurse/phlebotomist has to push so hard, they blow the vein and go through the other side.

    My nurses at my infusion center are the BEST. THE BEST. It’s a regional cancer center, and these women start IVs 8 hours a day, 5 days (plus) a week. They access dialysis patients, who are known to have the absolute worst veins. They couldn’t access my veins. None of them could. NONE of them could.

    My Orencia infusion takes 30 minutes. It had gotten to the point it was taking longer to start the drip than the infusion took. They were almost crying every time they’d try to start my line. I looked like a caricature (sp??) of a bad junkie when I’d leave there.

    I finally broke down 2 years ago January and had an infusion port implanted. Was I happy to get it? No!!! Absolutely not. Is it yet ANOTHER reminder I’m chronically ill, and not the person I used to be? Yeah. Does it freak me out to have a big chunk ‘o’ plastic planted in my right boob, with a hard plastic tube running up my chest and neck to my vena cava? BIG Freakin’ time !

    Does it take away all the tsuris and drama from my Orencia (and probably soon to be Actemra) infusions? You betcha. Am I ultimately happy I had it done? YOU BETCHA. Would I make the same choice again? Ab-so-FREAKIN’-lutley.

    Your veins are rebelling from the continuous abuse. They don’t like being stabbed repeatedly. It may just be an annoyance for infusion and blood work, but as my RD said when he was trying to convince me to get the port, “in a trauma situation, quick central venous access is a good thing”. Meaning, when you’re bleeding out after a car wreck, it’s probably not optimal to be poking around for a vein that isn’t full of scar tissue.

    Consider a port. Not only for the IV RA treatments you’re probably going to need for a long, long time, but for that pesky central venous access thing. SORRY, SORRY, SORRY this is so long, but this is SO important.

    E-mail me privately if you want to discuss it further.

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    • May 3, 2010 at 8:52 am
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      Hi Roberta, I appreciate how much I am learning from you. For my own arm though, I’ve only had the 6 infusions and 2 other IV’s in my whole life. I think it’s not my veins since my veins are so easy on blood draws & they are huge. But, I’ll look into it. At this center, it’s not how long it takes them, I feel like it is their attitude. They move the stick quite a bit after it is in & they pull hard or twist my shoulder or elbow and say things like “what, does that hurt like if you get a flare or something?” They have no idea that those joints are always in flare but if I wince, it seems they roll their eyes & do it worse.

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  • May 1, 2010 at 2:37 am
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    Dear Kelly,

    You are such a great advocate for all of us, I wish we could be there to advocate for you! All of us, walking/rolling into that clinic with you, insisting that you get the caring gentle treatment you deserve! The wrath of the RA Warriors! That would get their attention.

    When you go for your next treatment, picture all of us there with you, because we would be if we could, and we are with you in spirit.

    Know that you are in my prayers, along with so many others.

    (((Gentle hugs)))

    Caysea

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  • May 1, 2010 at 1:40 pm
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    Well, no one can work forever, LOL! But thanks 🙂 And I am still working, although I am no longer in a clinical setting. I’ve specialized in teaching movement and stress management to people with chronic pain and other health issues. And yes, its because of RA that I have found myself on this particular path. RA may have made it impossible for me to remain at the bedside or to continue to teach nursing students, which I did for many years, but I’m still doing what I can to make a difference!

    BTW, my colleagues and I at the school of nursing worked very hard to teach our students to have the head (the critical thinking skills and knowledge) the heart (compassion and always putting the patient first) and the hands (the clinical skills) to provide the kind of care that we believed all patients deserve. It always pains me to hear of poor patient care. It means that we, as nurses, have failed in a very fundamental way.

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  • May 1, 2010 at 1:50 pm
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    Hi sweet Kelly. Please don’t let those nurses treat you this way. You somehow MUST protect your veins! They will be absolutely needed for this treatment and need to be in top shape. When I was pregnant, in pre-term labor, my doctor told me that if I didn’t like the how the nurse was doing my IV, insist on someone else, even if I felt it was impolite. I needed my tender veins then to keep my baby inside and alive, just as you will need your precious veins to hopefully give you a life back. You have been through so much with your RA, I really pray that this treatment will work!
    Take care my friend, Karen.

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    • May 3, 2010 at 8:57 am
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      Hi Karen, I was so happy to hear from you. 😀
      That is a very good point. Doing that to me over & over could wear my veins down, couldn’t it? I will try to get them to listen – I have tried harder to be polite and not complain. That hasn’t helped.

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  • May 1, 2010 at 2:15 pm
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    Hi Kelly, sorry for what you had to go through with the nurses and the Orencia. There is no excuse for their behaviour, if it happens again (I hope it doesn’t) I’d report them, there are plenty of other good nurses who’d like their job:-)

    I’ve never heard of this new drug your starting (maybe not here in Canada yet) I wish you all the best and will keep you in my prayers. I’m giving the Humira a few more weeks then back to the drawing board. The joys of R/A Take care. Love Barb

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    • May 3, 2010 at 9:00 am
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      Barb, I was so thrilled to see you here, you could have just written “Lalalala” and I would have still smiled.
      Has it been 6 months for the Humira yet? That’s how long my doc says we have to give it for a minimum. I’m sorry it has not been helping enough.

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  • May 1, 2010 at 3:02 pm
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    If the Orencia is not working, why have one more treatment of it? Why not start the new med sooner? I did humira for almost a year between a long stint of Remicade and now Enbrel and I wanted to give it the full year, but was convinced it didn’t work for me, so I cut my losses, so to speak, and moved on. And haven’t looked back!!!

    I’ve never ever had the experience you’ve had with infusions as far as rudeness or bad bruising. Hard to believe it’s a professional medical facility. I would bring it up with the Doctor and let him know of your experiences there. Maybe there are other solutions.

    Good luck with the new medication. You have to be your own best advocate, read everything you can, take care of yourself and learn to read your body. It truly will get better. I do vitamins, exercise, massage, hot tubs, heating pads and rest. I watch my busy schedule because I tend to overdo and then I pay for it. And when I do, then I rest.

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    • May 3, 2010 at 9:10 am
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      Leigh, that is a good question. My doctor indicated to me that 6 months is considered the standard so that either insurance or other authorities would accept that the drug does not work. Otherwise, our decision to give up could be doubted in the future. I have read of folks going through as many as 3 different Biologics in 4 – 6 months time. In my opinion, that is wrong. How can they be certain that it would not have worked? They are likely causing immunity to those medicines to be built up so that they are also limiting future options. One more infusion will take me past the six months, but I did miss one at one point, so this is actually the “fair” call. To be honest, the doc gave me that info & let me decide.

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  • May 1, 2010 at 4:16 pm
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    Hi Kelly,

    About your experiences with Facebook: Please don’t ever stop being honest and please don’t ever start sugar-coating your comments. Your approach, just as it is, warts and all, helps me find my way through the quagmire of coping with RA. I need that approach!

    Best wishes on your next med. Don’t ever tolerate abuse at the hands of a caregiver. At the first sign of inappropriate treatment, get up and request rescheduling with another nurse. This can be done very politely; the staff supervisor will take note and you should not have to face that particular nurse again. There must be at least one compassionate nurse there: Ask to be scheduled with him/her only. Yes perhaps the company of an assertive friend would make the discomfort of taking a stand about this easier. Or perhaps the assertive friend could back you up as you explain these circumstances to your doctor when you request a transfer of care to another facility.

    I work in a hospital and find that unkind nurses are the exception not the rule. Keep your eyes open for the gems of nursing, they exist.

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  • May 1, 2010 at 4:41 pm
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    You might want to remind your doctor that a small room in his practice could be used for infusions. Plus sides for him are he can keep track of his patients during the infusions, he will know what quality of care they are getting, and he is missing out on the money. Their are two RA doctors that practice together at my Rheumy’s office. One is in charge of the infusions, Dr Lee even does the pokes for starting the IV’s and he is good at it. At their new office, we have a room with three recliners, and a HDTV with a selection of DVDs. Now it may help that their practice is in the building across from the hospital, so if anything were to go wrong, we are close to immediate care.

    Now about those “nurses.” We assume that if someone is giving us a shot or working in a medical situation they are nurses. I would check their name badges. RN, LVN, or some other job title. I would ask next time you are in, what their job experience and training is. I even make sure they like their job, as it makes a diffence. And when you go through a bad experience Complain. This is for everyone reading this. Management can not fix what they do not know about. 20 years in Social Services, 15 in supervising / management, always the last to know of a problem. I fixed problems as I knew about them, but you would be surprised at the number of times bad employees when for years without a complaint. Tell Someone Please!

    Actemra. I am starting on it next week. I too have failed my share of anti-TNFs. I have had pain in my hips for years, x-rays did not show much beyond a bit of narrowing. Recent MRI’s show the gamunt of RA damage. Since January, the hip joints have went down hill fast, and I am now looking at hip replacement surgery. I am hopeful that the actemra will at least get the swelling down. My SED rate and CRP which were good, at least for me, are going back up. So it looks like their are several of us trying the new stuff. lol

    Let ’em know when you have a problem at the infusion center!

    Cynthia

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    • May 3, 2010 at 9:16 am
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      Thanks Cynthia, I’ll try to find someone who will listen there. Maybe I’ll write a letter. Well, let’s keep in touch on Actemra.

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  • May 1, 2010 at 5:42 pm
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    I am somewhat new to your blog, however, I feel a strong connection to you, Kelly. Automatically we have the whole RA thing in common and I strongly believe no matter how well intentioned friends, family even doctors are it really takes one to know one! So often you have written about me by sharing things about yourself. That for sure makes a person feel not so alone. I just really appreciate the news and studies you report as well as some of your own struggles and victories. Thank you for giving a strong voice to RA.

    I have been on Actemra since it came out in January. I have had really good luck with it and have even been able to reduce my methotrexate and prednisone doses! I’m not saying I am pain free and don’t have little bumps in my day but it has given me the ability to do a bit more than I could before and to me, for now, I’ll take that! As for the IV issue, has anyone talked to you about getting a port? When I started on Remicaid back in 2003 it would take (no joke) an hour for them to get an IV started. I now have a port which is right under my skin and the nurse it able to just “plug” me in. She can even do blood draws and it can be used for IVs during surgery. It is wonderful! It is a very simple surgery to implant it, really no pain after and it has been a life saver or should I say vein saver 🙂

    Good luck! I will be anxious to hear how Actemra works for you, if you feel like sharing…

    Reply
  • May 3, 2010 at 9:52 am
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    Hmmm–having a “touch” of RA. Is that like being “a little bit” pregnant?!

    Reply
  • May 4, 2010 at 11:23 am
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    I think it’s okay to be negative sometimes. I think it’s healthy to be negative sometimes, it’s venting, that’s all it is and we need it as long as we don’t dwell on it!! Esspecially if medical professionals are ever being rude, mean, or uncompassionate. To me when they behave that way it only illustrates that they are ignorant and don’t understand the diseases that affect their patients, and that is shameful for them. Thank goodness there are some really great doctors and nurses out there because they restore my faith in the whole bedside manners thing:)

    Reply
  • May 11, 2010 at 6:15 am
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    Kelly,
    I had my first infusion of Actemra last Thursday. Less than an hour, and I fell asleep during it. Okay, I used my Remicade time as naptime as well. You have to take ‘me’ time where you find it. No side effects that I noticed. I’ll have to wait and see if my SED rate and CRP go down, they were both going back up. Now if I could just do something about the damage to my spine from the RA I may start to feel better again. Note: I have had two spinal surgeries in the past 18 months, and the surgeon and I were hoping that the other levels would stay okay for a while longer. Well, hope spring eternal, right?
    Cynthia

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    • May 11, 2010 at 9:37 pm
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      Cynthia, I hope the Actemra works wonders for you. I hope I can sleep through an infusion someday – so far they have been too painful because of needle position.

      Reply
  • May 14, 2010 at 11:07 am
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    Kelly, I wanted to ask you about how biologics have or have not worked for you. How long have you been trying biologics? The reason for my question is my rheumy has decided to take my off of all biologics and methotrexate because I am not responding well. So he is discontinuing all treatment and sending me to the Mayo Clinic. So now until I can get into Mayo I am suffering big time. I have the positive RF test, but do not show many signs of swelling, just lots of pain and stiffness. Sorry if I you have posted this somewhere on your page. I really appreciate what you do. On a separate note how is the weather looking for this afternoons launch. Can’t wait to watch on NASA TV. David

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    • May 14, 2010 at 8:56 pm
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      David, the launch was beautiful. I posted some photos on Facebook. What is the reason for discontinuing all medicine? Did they tell you that they want to see a baseline of your symptoms / blood tests? (I have heard of that – I think it may be flawed; but there is hopefully another reason that I do not know about!) This is very interesting. I hope you will update us about how this works for you. I’m sorry about how painful & difficult it must be – I hear you.
      Question about me? I have had to discontinue certain medicines for a period & that definitely gives one a way to see how much they actually did to help. There is a post that tells which medicines I had used up to that point in time since people kept asking. Click here. It has been 4 yrs and 3 Biologics so far. Next month, I start Actemra; click here to see where I discussed that recently.

      Reply
  • June 7, 2010 at 8:30 pm
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    I was interested if anyone has anymore experience with the
    ACTEMRA IV. Though I have over 10 years of unsuccessful RA treatments my first ACTEMRA IV will be the 22, so I would like to know how people are weathering the storm.
    Thanks Virginia

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      • June 7, 2010 at 10:16 pm
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        Thanks Kelley its so new I’m finding the norm.. drug web pages “new wonder drug do da” and so on I would really like to talk to a few users.

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        • June 7, 2010 at 10:25 pm
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          Your welcome, Virginia. Check back here and on the Actemra post. I meet more Actemra folks all the time.

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    • June 7, 2010 at 10:15 pm
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      I did Actemra (TCZ-Tocilizumab) in a clinical study and it worked for me. I was not as fatigued, I could do a very low impact workout a couple days a week, and my weather flares were not as intense. I have not been back on Actemra since it became patient available due to surgery.

      Actemra is a one of a kind medication as it suppresses the IL-6 cells. There is very promising research in the IL-6 area.

      I am not going back on it. I am choosing to do Simponi with mtx first. If that does not work then I will move on to infusions. I just don’t want to burn that infusion bridge right off the bat. Plus I have this awesome RD but his office staff is blah and can be rude so I want to try at home medication first before I have to sit there and get an infusion. If I had my way I would have a different rheumy. But my PCP won’t refer me to anyone else because I do have a top notch rheumy. He was on the team that developed Humira. So, I’m stuck!!! Bleargh.

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      • June 7, 2010 at 10:24 pm
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        Good points, Liz. Thanks for sharing your story. I hope the Simponi works.

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    • June 8, 2010 at 10:09 am
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      My doc is getting ready to start me on Actemra. I will let you knpw how things work out. Nothing else has really seemed to make much of an improvment.

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  • June 7, 2010 at 9:45 pm
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    I took Actemra for 7 months in research and its a life saving drug to me. I’ve been on Humira, Arava, MTX, and Orencia and except for the Humira that didn’t touch my RA, they all gave me awful side affects. The Arava and Orencia worked great but gave me skin rashes and mouth sores. The Orencia gave me Lichen Planus which was a very dibilitating skin disease but as soon as I stopped the Orencia, it started going away. Back to Actema. When I was on it,after about 3 infusions, I was doing Zumba. Not sure if you know what that is.. it’s dance exercise to latin music. Thats how much Actemra helped me. I had to get off for 3 months due to it being approved by the FDA, and I had to get it approved by my insurance. I should have been back on it within a month but the nurse that was suppose to be pre-certing it dropped the ball so I went without it for 3 months. I was in so much pain and both knees swelled up so bad, I was having to use a cane to walk. AFter one infusion, I am almost able to start back to Zumba. Yesterday I was almost pain free and of course overdid working in my garden so I am paying for it today, but to be almost pain free and not walking with a limp was all worth it!!!! Everybody who has had RA for a while and nothing else has worked needs to insist your doc put you on Actemra. My quality of life has gone from almost nothing except working and coming home and going to bed to being able to go places again,exercising, working in the garden and working 8 hours a day without being totally exhausted. Thats my story and I am sticking with it! Get Actemra if at all possible!!!

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    • June 7, 2010 at 9:51 pm
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      Thanks for sharing, Ellen. It helps people to hear from others that it helped them. Keep dancing! :rotfl:

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    • June 7, 2010 at 10:28 pm
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      Ellen, Thank you for your input I will be on it as long as everything goes as predicted. I understand your struggles just like you I have had plenty of RA Modifiers that just don’t touch my RA and am getting fed up with “pains & Cains.”

      Reply
  • June 11, 2010 at 4:16 pm
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    Why can’t you have it administerd at a local hospital?

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    • June 11, 2010 at 6:11 pm
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      Sheila, if you mean my IV, I thought I could. But the doc said I must stay w/ this particular cancer center because there is some affiliation & Doc can “oversee” my case better “just in case.” In the last couple of weeks, I’ve spoken with the head nurse & she was very responsive. I’m so glad for all of the encouragement here that really did give me courage to do that. I think it will be much better; Head Nurse will do my IV from now on personally. I had one since then (the last Orencia) & it was AMAZING how fast and pain free the whole thing was. So THAT’s how it’s supposed to go!! 😀

      Reply
  • June 12, 2010 at 10:31 pm
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    HI Kelly, before anything, thank you this wonderful site! I’ve been on it more regularly recently since I have to start making serious decisions about which medication to take. I feel I have no one to turn to, that’s why I’m posting my comments here. Thanks for the info. I feel frustrated that I need to make the decision to start on one of the biologicals and due to personal fears that include giving myself shots, or going through what you went through with the IV, I’ve been putting it off. I’ve been on steroids for 9 months, which I feel is a lot but I do realize many people have been on it for a lot longer. My frustration also comes from the fact that no one understands what I’m facing, other than those that are fighting RA (although this is my frist time really being vocal and open about my feelings). I have been vocal about it to my husband, who has been very supportive, but there is only so much he can try to understand. Everyone still have their own worries in life. Other than him, his parents know I have RA, they don’t live in the same town we live in so they don’t know my day to day struggles and neither does my husband because he is in the airline business and has to be gone a lot. Because I had back surgery 9 months ago, which was crippling me before, now when I say something about the pain I’m in I just hear, “well, but your back is doing well though – Thank G–!” I feel like they are minimizing the reality and seriusness of all that I’m having to face. Or even the reality of this disease. My family, on the other hand, who lives in Paraguay, does not have a clue about what I have. I don’t even bother trying to tell them the complicated diagnosis I have so I have to pretend everything is fine just so I avoid getting frustrated over the fact that they, just like people here, don’t comprehend or don’t even try to comprehend what RA is all about. So, thanks for all the good articles and for putting a perspective on all the issues we face as RA warriors, and more than anything, thanks for listening.

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    • June 12, 2010 at 10:59 pm
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      Thanks for writing, Lizzie. I’ll be glad to listen any time. All of the things that you mention are things that many of us deal w/ too. Family who doesn’t know about RA, people minimizing RA out of ignorance, pain that is greater than those w/out RA can imagine. Maybe once in a while, you can email them a post from here & they will gradually be educated. There is a button for that under each post.
      Treatment decisions are tough stuff.. Did you see Friday’s blog (top on front page right now) about treatment decisions? I wish they weren’t this hard. The shots & the IV are not as bad as they seem. You can do it. Are you already taking methotrexate? It’s usually begun before the Biologics because it makes them work better & helps prevent an immune reaction to the Biologic. Are you from Paraguay?

      Reply
      • June 18, 2010 at 1:26 am
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        Kelly, I really appreciate your encouragement. To answer your question – I am from Paraguay (been here 20 years though). I also did read the treatment decisions, that’s one of the reasons I was compelled to write to you (and I apologize for the length of my previous comment – I just rambled on).I have been on MTX since November but my RA seems to still be pretty active. I wonder what is the percentage of people that have to start on biologicals after being on MTX – or does MTX work for most people? As I’m writing this, I still haven’t given my ok to the dr to get the approval. Did you start with the self shots drugs or did you go directly to the IV drug?

        Reply
  • July 15, 2010 at 5:37 pm
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    I just started with gold… they say it doesnt do much but my insurance is piggy and is making me…

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    • July 15, 2010 at 5:49 pm
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      you’re kidding, Shannon? your insurance is making you try gold? surprised.

      Reply
  • July 15, 2010 at 7:04 pm
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    OH my goodness Kelly! You would think the folks at the cancer center would be a step above anyone in the medical service. They deal with folks who need to be handled a little easier because of what they are going through. I’m sorry you will be put through abuse and pain. What happened to helping with the pain and suffering and NOT being the ones who cause it. I hope the new med works and hope the uncaring/unfeeling people of the world, who can’t seem to understand what RA is-or don’t want to understand, will have a bird poop on their head!!! 🙂

    Reply
    • July 15, 2010 at 7:24 pm
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      Haha. That would be a suitable thing!! :-O
      I did finally follow the advice from readers & speak with the supervisor. She’ll be the only one to handle my IV from now on. :doctor:

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      • July 15, 2010 at 8:09 pm
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        I feed a lots of birds in my backyard and thought why can all that poop be put to good use! 😛 Good to hear you now have the supervisor’s help in a less painful time! 🙂

        Reply
  • July 16, 2010 at 7:41 am
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    When I have had the occasional problem at home, my Hubby really is the best when it comes to sicking the needle/ cannular into my veins. About 5 yrs ago after I was diagnosed with RA I had an hysterectomy done. The anaesthetist was *ra* he blew just about all the veins on my hands and after I was on IV for a few days they have no where to go to stick me at all. I was covered in bruises and my hands and arms were so painful.
    The first Rituximab IV wasn’t too bad, it took 2 goes at finding a suitable vein, but she did find one. The 2nd one was hopeless, she was rough and she ended up asking the consultant to put one in. He was good and I didn’t bruise as much.
    Since then each time I’ve had blood drawn I’ve had bruising that lasts 2 weeks +.
    In August my Hubby is coming with me and if there is a problem I’m going to ask if he can do it for them! Might cause a bit of fuss, but I’m not going to go through that again if I can help it!
    I sometimes wonder what they would be like if they were on the receiving end??
    I do hope that this is the Treatment to work for you Kelly, every Warrior needs something to work once in a while! Xx

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    • July 16, 2010 at 9:26 am
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      Jakki, I sure do. I feel like I’m 5 yrs behind on my life & have no chance. I can’t wait to see if they let your dh do your needle for you!

      Reply
  • July 17, 2010 at 10:25 am
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    Has anyone thought of getting a port? That’s a direct line – one end of the tube snaked to your heart, and one end has some sort of ending that is used for IV’s and for blood draws. After this last week I am seriousily thinking of one.

    Also, I have had my third infusion of Actemra. Everything RA wise is GREAT! Except I have gained 30 pounds, and have swelling everywhere. Okay I have started and stopped Lyrica during this time, and am back on Gabapentin for nerve pain. Any thoughts out there if this is Actemra related or something else?

    Cynthia

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    • July 18, 2010 at 10:10 pm
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      I know some people with RA who have ports. Ports could have problems too, so ask your doc to talk with you about advantages and risks so you can decide what is best in your situation.
      I have not read that Actemra can cause weight gain and it is doubtful. Lyrica, on the other hand is well-known to cause weight gain. I’m sorry you are going through that. Did your doctor have suggestions?

      Reply
  • July 27, 2010 at 5:58 am
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    Thursday will be my fourth infusion of Actemra!!!! Yes, four of those “!” things. I am not sure if I have a remission of RA or not. It is hard to tell with everything else going on. I do know that I feel better joint-wise, swelling/pain in joints.

    I am going to look into having a port for all the other things going on. Too many to think about, some RA related and some not.

    Cynthia

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    • July 27, 2010 at 9:36 am
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      Hi Cynthia, I’m having my first one today. Hopefully, it will help us both, right? 🙂

      Reply
  • August 14, 2010 at 7:18 pm
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    Thank you for sharing your personal RA stories. I appreciate your willingness to do that. I just wanted to say that I experienced coughing with Orencia. The coughing started right after the first infusion. I was on Orencia for 8 months before my rheum doc decided it wasn’t working. After I stopped taking Orencia, the coughing stopped. I am positive they were connected. I did not find much on my search Orencia+Cough online. Now I see I am not alone with that side effect. I hope you are feeling better.

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    • August 14, 2010 at 8:09 pm
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      My cough was very obviously connected to the Orencia. It started withing a day of the infusion and I skipped my second infusion because I thought I must be sick. It was a very tough cough so I went through a lot of children’s Robitussin. I would cough for a long time every morning especially or any time I lay down. When I stopped Orencia, the cough stopped – just like you said. I don’t know why this side effect is not reported, but this is likely connected to what is described here on this post. Let me know what you think.

      Reply
  • July 13, 2011 at 4:45 pm
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    Enbrel worked for me for several years, but now, after flaring this spring from stopping meds for surgery, it seems it’s not as effective and I am coming to terms with the fact that I may have to seriously consider switching biologics…I have been resisting my doc’s recommendation…ANYWAY, who out there has had success switching from Enbrel to another biologic? Has anyone tried Cimzia, and what was your experience? Thanks!

    Reply
  • November 25, 2011 at 4:29 pm
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    To everyone with RA. Have all of the medications you’ve been on been worth it to you? Methotrexate pushed my lungs to pulmonary fibrosis even though I didn’t have any other side effect with it. Can’t take it now. Can’t work any more either. Doctor wants to put me on Enbrel. He is a good rheumy, takes his time with me and seems to think Enbrel is a miracle drug. I’m not so sure. What kind of results or side effects have you all experienced?

    I learned in the hospital how to say “NO” to treatments and tests. I’ve already told my doctor that I don’t want to take anything right now. With my lung problem, I don’t know what to take. Thanks,

    Reply
  • November 25, 2011 at 6:02 pm
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    Actemra has been great for me. Worked better than all of the TNFs put together. One thing about Actemra is there is a side effect of high cholesterol. I have never had high cholesterol, but now its high. It didn’t get high till approx a year after trying it. I tried my best to get it down on my own, but to no avail. I did get my triglycerides down and elevate my HDL, but I can not get my LDLs down. So I have an appt with primary care on Dec. 1st to probably get on a statin. I wanted to try to lower it on my own, but LDLs arent budging. So I will now try a statin. My nurse from my health insurance says due to family heart problems they want my LDLs below 100. They fluctuate between 135-165.

    Reply
  • November 25, 2011 at 6:07 pm
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    @ Cynthia its not the Actemra causing the weight gain. I have actually lost weight on Actemra. Lyrica on the other hand will cause weight gain. I was on it. Switched to Savella. Between Savella and Actemra I am doing better. Not saying 100% but I have lost weight too!!

    Reply
  • October 19, 2016 at 1:59 am
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    This is very true..I am also taking actemra.and am experience same ..nurses were roughly inject during infusion. They dont care about our pains, bruises, and about bleeding.i agree with you completely but after my 5th infusion I found mix results.but these days am facing lumbar lordosis…am not able to sit or walk…it feels continously paining in my left lower back to lower thigh….and my soulder and hands also freeze some time…..I dont understand about infusion or its results…….
    Thanx

    Reply
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