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Treatment

Enbrel

  • By Maryjane

    I was diagnosed with RA in 1991. When Enbrel received its’ FDA approval I was one of the first patients in CA to receive the medication. Not only did it change my life, it saved my life. ALL other treatments had failed me- some with serious consequences. Then, in 2008 I was diagnosed with MS. I was advised to discontinue the Enbrel, but I elected not to for 2 reasons. There were no other drug choices for me at that time and I wasn’t having MS symptoms. Then in 2012 I had a significant MS relapse and had to discontinue the Enbrel (it is contraindicated for patients with MS).Does ANYONE know of someone who has BOTH RA and MS? I have searched to no avail. Maryjane- party of one is a very lonely place. 🙁

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  • By Maryjane

    Dr. Lumpe-

    I am having trouble connecting with Lisa. I clicked on the “contact me” section of her blog and nothing happens. The link above doesn’t show a way to reach out to her. Any other options? I am very anxious to talk to her. Thanks. Maryjane

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  • By Lisa Emrich

    Hi Maryjane,

    I’m sorry to learn that you are dealing with both MS and RA. Surprisingly, there are many of us. Although it seems that more people in the MS community talk about having RA, than folks in the RA community talk about MS.

    It’s true that people with MS cannot/should not use one of the anti-TNF drugs. But we do have other treatment options.

    Have you been using anything for MS?

    There are many of us with MS and RA who use Rituxan (rituximab), an infusion drug. I switched to Rituxan in 2009 and both diseases have responded rather well to it. Results from earlier trials of Rituxan in MS were very positive for relapsing MS patients, but the drug company Genentech shifted their research efforts into a closely related drug called ocrelizumab, which also acts upon the same type of b-cells in the immune system that Rituxan does. In the meantime, rituximab is used off-label for MS patients.

    Quite awhile ago, my rheumatologist told me that if rituximab didn’t work, we could try Orencia (abatacept) which is currently in Phase 2 trials for MS.

    One of the newer oral MS drugs, Aubagio (teriflunomide), has the same active ingredient as Arava (leflunomide), a drug for RA. I haven’t received a satisfactory answer yet from medical professionals as to how taking one or the other would affect the opposite disease. You definitely can’t take both, and the effects of the dosing may be very different for each drug, but it is something worth discussing with your neurologist and rheumatologist.

    Methotrexate can help both diseases. If you’ve been on methotrexate, or other immunosuppressant, then Tysabri (natalizumab) would not be a good option to treat the MS. The risk for a serious brain infection is increased in patients who have been exposed to the John Cunningham virus (which normally stays dormant and doesn’t cause any problems).

    I have to say that, personally, Rituxan (combined with methotrexate) has been a wonder drug. My diseases initially improved after I switched to it, and have stayed stable for years. Of course, that’s just my experience, but it is encouraging.

    I will try to send you a private message in which I’ll give you other ways to contact me.

    I hope you are doing well. I’m here anytime you’d like to talk more about living with both MS and RA.

    Best,
    Lisa

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  • By Maryjane

    Thanks Lisa-

    I am on Orencia (IV). It doesn’t work quite as well as the Enbrel, but much better than anything else I’ve tried. There is also question to what is causing the pain I have…RA? MS? I am fairly stable right now. I am also on low dose prednisone (5mg/day). My NR is part of the clinical trials for Orencia’s effectiveness with MS so he is going to let me know when the trials finish up. Do you know of any forums for folks like us who have both MS and RA?

    As far as the other RA drugs. I’ve been on them all. I’m allergic to Voltaren. That was a very scary 10 day hospital stay. Went into anyphalatic shock from Azulfidine. Methotrexate they had to keep increasing my dose every month, each time I would get very ill, lose a lot a weight…it was taking more out of me than helping.

    I’m hoping in our lifetime stem cell technology will advance to halt the progress of both 🙂 Thank you!

    Maryjane

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  • By Mariah Z. Leach Moderator

    Hi Maryjane~

    I’m glad you finally got in touch with Lisa – it’s so nice to connect to someone who understands! I hope that the Orencia starts working better for you soon!

    ~Mariah~ (Site Moderator)

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  • By Tanya

    My elderly Mother is 70 and had to be taken off Embrel because no longer can get financial help. She is failing fast and I am desperate. Embrel has changed her life for 20 years. This seems like a crime to have happen. Anyone please help.

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  • By Kacey

    Hello,

    I was diagnosed with RA almost two years ago and have been on triple therapy (methotrexate, plaquenil and sulfasalazine) but now the doctor wants to start me on Enbrel as well. I don’t have any issues with doing the injections but I’m just wondering what others who’ve been on Enbrel think of it. Do they experience a lot of side effects? I’ve been lucky that I haven’t had many issues so far with the meds I’m on. I’m just not sure what to expect. Going to injections feels like a big step. Any advice that could be given would be greatly appreciated. Thanks!

    Kacey

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  • By Mariah Z. Leach Moderator

    Hi Kacey ~

    One of the more frustrating things about RA is that it is a truly unique experience for each of us – which means that a medication that works wonders for one person may not work at all for another. So the only way to find out if a medication will work for you is to try it. Whenever your doctor recommends a new medication, there are two things that are important to keep in mind. First, just because there are possible risks and side effects does not mean that those things will necessarily happen to you. Plenty of people are able to take medications without side effects – as you mention has been the case for you so far. Secondly, it’s important to keep in mind that your doctor wouldn’t recommend the medication unless he/she thinks that the potential benefits outweigh the potential risks. If you and your doctor can find a biologic medication that works for you, it can make a huge difference in your quality of life!

    I do actually have personal experience with Enbrel and for me it was a life-saver for many years! It got me through the end of law school, my own wedding, and the first few years of motherhood. Unfortunately, after the birth of my second son, it stopped being as effective and I’ve since switched to something else – but for a long time my experience was very good! So I wish you the best of luck!

    ~Mariah~ (Site Moderator)

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  • By MeTass

    I was diagnosed February 2. Started with Plaquenil only 200 mg twice daily. After 1 month with no results and a lot worse symptoms, my Doctor added Methotrexate 7.5mg once a week and recommended I try Enbrel. I started Enbrel March 16. After the 7th injection I had redness and swelling 2 days later. Swelling went away after 5th day. So the next week my Dr. said to go ahead with the next shot. So I did it. One day afterwards I got red and swollen. On day 3 I got itchy. Took Benadryl and it stopped. Saw my Dr. May 11 – he thought we should stop Enbrel and try Humira after 3 more weeks so the Enbrel would be out of my system. The sad part is that ENBREL was really giving me relief. WHY did I react??? Now I have to wait 10 days before starting HUMIRA and hope and pray that my body doesn’t decide to reject it too. ANYONE have a similar issue? I am so frustrated.

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