News Flare! 1st Rituxan Infusion! WebMD Award! and More!
First Rituxan infusion
Monday, I spent 8 hours with an IV for my first Rituxan infusion. It took a longer time for various reasons, but it seems I did fine. So far my only noticeable side effect has been a fierce headache. Still.
It’s difficult to describe how grateful I am for those who sat with me or stood with me in prayer that day. It meant a lot. It was the first time I was truly afraid of a treatment, but I had made the decision and I went through with it.
Here’s hoping my RA is halted by the loss of B cells!
Winning the WebMD Health Heroes award
This was posted on my Facebook page late last night:
Dear fans of RAWarrior,
I’m so pleased to tell you that WebMD the Magazine has chosen your nominee, Kelly Young, as one of our 2011 Health Heroes. We are very excited to feature her — her story is incredibly inspiring.
Our Health Heroes feature will be running in the November-December issue of the magazine (available in doctors’ offices the first week of November), as well as on WebMD.com (also first week of November, at http://www.webmd.com/healthheroes/default.htm).
More info as it becomes available. My prize will be donated to the RPF. Thank you, WebMD!
ePatient Connections talk in Philadelphia
In addition to the headache, there’s another reason why there are so many blog posts that are trapped in my laptop and can’t seem to get onto the website. I’m “busy” trying to do all I can to go speak at this important ePatient conference during the week between the two Rituxan infusions. (Rituxan is always a two stage deal so that no B cells can sneak away.)
RPF’s Website Photos
Behind the scenes, the Rheumatoid Patient Foundation is progressing! The primary goal is to get the website functioning so we can make it possible for everyone to get involved and start accomplishing our goals. There are volunteers and a Board of Directors who are working hard to make this happen ASAP.
Right now, we are looking for great photos. Suggestions: Smiles. Hugs. People outdoors in the glory of nature. Un-cropped. High definition images.
If you have any great photos that you’d like to donate, you can email them to me kelly@www.rawarrior.com.
Recommended reading
- Who Are e-Patients? A Simple Explanation
- Rheumatoid Arthritis in the News: Rituxan Success
- A Patient Foundation for Rheumatoid Arthritis
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Kelly, I will always be there, holding your hand, through the tough times, as well as praying for you to have minimal discomfort. I’m sorry the headache is still bothering you. *hugs*
Congrats on the WebMD award. I know you are definitely my RA hero. <3 You deserve this.
Let me know if you need anything. <3
Congratulations on being chosen as a 2011 Health Hero! I’ll be visualizing you seeing great benefits from the Rituxan!
Kelly – I truly hope Rituxan proves to be the magic number for you. You deserve some relief!
Congratulations on the WebMD award!! I can’t wait to see the feature.
Congratulations on both the infusion and the WebMD Health Heroes award!
Kelly,
There is nobody in the world more deserving of the WebMD award than you. Few people understand how much you and your family has paid in blood, sweat and tears en route to receiving such recognition. I will next tweet this to at least make my Twitter followers aware.
Perfect timing to receive such recognition- just before Epatcon-2011! Gives you well-deserved Klout on that national stage. But more importantly, it draws necessary attention and support to your RPF, representing so many suffering peers of yours who’ve sought solace in your contributions toward significantly improving their lives.
Bob
Good luck with Rituxan! I’ve been on it about a year and have been able to decrease my methotrexate which in turn has made my rheumatoid nodules less severe. I also get headaches after treatment. But they become less intense as my treatment continues. And contests on your award! You deserve it!
Congrats is what I was trying to say…. You prolly figured that out. 🙂
Kelly,
I’m praying that the Rituxan will be a really effective medication for you. I sympathize with your needing to try a medication that is scary to use. I understand your frustrations about ineffective treatments, as I’ve so far also been unresponsive to everything we’ve tried.
I’m incredibly glad to hear about your receiving the WebMD award! You absolutely deserve it, and the increased publicity should go far towards helping you accomplish your goals.
I have psoriatic arthritis, and not rheumatoid, but I’ve found your website to be a wonderful resource for me. I want to personally thank you so much for all of the time and effort you put into this site. It means so much to many, many people! Best wishes!
Congrats Kelly for making it through the Rituxin and getting the WebMD award!! You have earned every bit of that award! More good things will be coming your way, you reap what you sow, and you have sowed much!
Congratulations Kelly on the nomination! You REALLY deserve it! Thank you for all that you do for Rheumatoid Disease! I am praying that the Rituxan infusions work for you! BIG HUGS!
Congrats Kelly! You’ve helped so many! And have brought so many together! I wish you the best and hope you find some relief!
Thank you Kelly, your story has inspired me to take charge of my care, as your video of your bad experience with a Rheum doc is so what I am dealing with right now. I am glad your treatment went well and you are so deserving of this award.
Hi Kelly,
I hope you experience the positive results that I’ve had the good fortune to experience since beginning treatment with Rituxan last fall. I look forward to hearing how it works for you!
gina
Congratulations, Kelly, on your award! Also, I am so happy to hear that your 1st treatment went well and will pray that your Rituxan infusions work well for you! I was diagnosed with RA two years ago, but suffered in silence for two years prior to that. It was only after my mom passed away that the RA kicked into high gear and left me bedridden for six months before graduating to a wheelchair.
Although this is the first time I’m writing, I have been following your site for a little while now. I am so thankful for all the time, energy and info you and your family have put into RAWarrior. Since I started visiting your site, I don’t feel so uninformed and alone. So, I guess I just want to say “THANK YOU” for giving me and others like me the courage to fight our RA conditions. You not only are an RA Warrior, but my RA Hero!
CONGRATULATIONS! You are well deserved to be recognized for all you do for not only yourself but the many warriors who come to rely on your steadfast information. THANK YOU! Tammy
Oh.. pardon… With God’s bleesing may your new treatment help aid you in combat against the disease. I will include you and the masses in my prayers. Tammy
Thank you Tammy. What a beautiful blog you have.
I am so happy that I could make your day 🙂 I’m glad that your infusion went mostly well. Did they remember to pre-medicate? Emily always gets Tylenol, Benadryl & Solu-Medrol before Rituxan and Remicade both. She’s never had the headache before because of the premeds. The drip may also be too high. It may be helpful if they slow it down? Of course, that could mean a ten hour infusion… I truly hope that it can help you the way that it has helped my girl. She could not handle stairs before, and her endurance was horrible. We used her wheelchair all summer. Her school’s PT’s had set up a goal for her to walk 5 steps. Imagine how surprised they were to see her come back to school and only need to use the elevator occasionally! I have heard that when it doesn’t work, it’s still not a bad experience, but when it works… WOW! I pray that it works as well for you. And if your immune system does get suppressed a bit low, they can give you an IViG boost. I am very impressed with IViG.
Again, congratulations 🙂 You truly do deserve it. You have had the chance to touch so many lives, to help so many people. I know that you don’t have to work as hard as you do- gathering facts, pouring through articles and research updates, working on the foundation, etc. The fact that you do is what makes everyone appreciate you so much. In so many ways, you are invaluable. I wish that you didn’t have to have RA, but obviously this must have been a huge part of God’s plan for you. <3
Well deserved, Kel! Carry on soldier (I mean warrior)!
Congrats! Kelly on your award. Best of luck with your new treatment. I hope you find the relief that you deserve.
God Bless.
Tammy
Kelly, congrats on the Health Hero award, you are so deserving of it. Good luck with the Rituxan.
Thanks, Terry!
HI KELLY…COGRATS ON THE AWARD..MOST DEFINITELY DESERVED…DEPSITE ALL THAT YOU GO THRU YOU ALWAYS MANAGE TOO TRUDGE THRU TO FIGHT THE INJUSTICE, RALLY FOR SUPPORT, CHECK OUT ALL THE ANGLES, SEPARATE FACT FROM MYTH FROM MISPERCEPTION. YOU LEAVE NO STONE UNTURNED TO FIND OUT ANSWERS TO THE QUESTIONS WE ALL HAVE. YOU LET US KNOW WE ARE NOT ALONE, THAT WE ARE NOT CRAZY…YOU HELP US TO KNOW THAT JUST BECAUSE DR’S SAY IT DOES OT HAPPEN THAT WAY….THAT SOMETIMES IT DOES. YOU GIVE US A PLACE OF COMFORT BECAUSE WE KNOW SOMEONE ELSE UNDERSTANDS AND WILL LISTEN TO WHAT WE CANNOT DISCUSS WITH OTHERS.. FOR OTHERS OFTEN DO NOT UNDERSTAND TOTALLY EVEN IF THEY TRY. THIS IS IN PART BECAUSE WE DON’T OFTEN LOOK SICK, SO THERE IS THIS MISCONCEPTION THAT WE ARE FINE. RA, I FIND, IS A HOLISTIC DISEASE..MIND, BODY AND SOUL. IT EFFECTS EVERYTHING WE ARE AND ALL THAT WE DO. BECAUSE OF YOU AND WHAT YOU HAVE STARTED WITH THIS WEBSITE ALL OF US CAN HAVE A TINY CORNOR OF PEACE IN OUR LIVES. BECAUSE YOU GIVE US AFFIRMATIONS ABOUT WHAT WE FEEL IS REAL NOT IMAGINED, YOU GIVE US TOOLS THAT WE CAN USE TO MAKE SURE WE GET THE TREATMENT WE NEED. AND STAND UP FOR OUR RIGHTS IN THE DR’S OFFICE. YOU GIVE US HOPE THAT TOGETHER WE CAN NOT ONLY EDUCATE EACH OTHER BUT OUR FAMILIES AND COMMUNITIES AS WELL. YES KELLY…THIS AWARD IS DEFINITELY DESERVED…YOU HAVE EARNED THIS MANY TIMES OVER….
AS FOR THE RITUXAN…..I HOPE IT WORKS FOR YOU KELLY. IT DID NOT FOR ME. I TOO HAD TROUBLE WITH THE INFUSION…TOOK ALL DAY THE FIRST TIME..LOST MY GAG REFLEX AND HAD BAD HEADACHE…BUT AS SOMEONE ELSE MENTIONED ABOVE GIVEN WITH PREMEDS OF BENADRYL AND SOLU-MEDROL ETC….IT WAS OK…BUT IT DID NOT WORK FOR ME OVERALL …NEXT WAS ORENCIA INFUSIONS WHICH GAVE ME SUCH HORRIBLE SIDE EFFECTS IT TOOK THREE MONTHS FOR THEM TO GO AWAY. NOW I AM BACK ON HUMIRA WHICH DOES NOT LOOK QUITE SO BAD ANYMORE…WHAT AMAZED ME THOUGH WAS WHAT YOU SAID ABOUT BEING SCARED OF THIS DRUG…I WAS TERRIFIED WHEN I DID IT…BUT RA IS WHAT WE KNOW IT IS AND WE ARE WILLING TO TRY JUST ABOUT ANYTHING IN HOPES THAT IT WILL WORK AND GIVE US MORE GOOD DAYS. NOT EVERY DRUG WORKS THE SAME ON EA PERSON..EVEN IF YOUR SYMPTOMS ARE THE SAME. YES WE WILL TRY ANOTHER ONE AGAIN ONLY BECAUSE WE WANT ONE TO BE OUT THERE FOR US TOO. I SAY A PRAYER TODAY KELLY THAT THIS ONE IS YOURS…I THINK IT’S YOUR TURN TOO…AND YOU DESERVE THIS TOO. THANK YOU FOR BENG THERE FOR ALL OF US ALL THE TIME.
Thank you for the very kind words. I’ll come back to read them on harder days.
I was scared because this is the only one that has had deaths from the infusion itself and not some later complication. I’d choose a scary treatment over living like I do w/so much pain & disability. But I’d *not* choose death – I’d rather be here to watch my kids be grown even if I have to take pain drugs or sit in a wheelchair someday – I just love life & I was afraid. It was a harder choice than any treatment I’ve done before, especially because of the clinical trial. The timing of adminstration will be different; they don’t know yet how safe it is until we do it.
Kelly – congrats on everything! The Rituxan and the WebMD Award. Nobody deserves anything more for all you do. Us members of the RA community appreciate that although in pain, you get up every morning and continue fighting for awareness of RA. Keep up the good work and THANKS!!!
Leigh
Kelly, congratulations on the award, it is very much deserved. I do hope you realize how much you help us. Like others have said above, just the validation alone is worth more than I can say. So I am very happy you are being recognized for that. The word is getting out, it will pay off some day.
I’m glad your first treatment of Rituxan is over and the side effects were bearable.Hopefully with the pre-meds next time, you won’t even have the nasty headache. I pray that this is the one that will work for you. Wow, if people would just read this blog to see what we have to go through to try to save our mobility and lower pain. I am in the beginning stage, still trying to make MTX work but the base line nausea is back. Considering Enbrel, but would rather stick with the least toxic. What choices !! Not saying others don’t have issues, but the majority are just trying to decide what headache relief to take. I know, I used to be one of THEM. I wouldn’t wish this disease on anyone, not even the last person to tell me that I just need to go all natural.
LOL, Becky a friend of mine the other day said I should be on Alkaline water that would cure me…. I just stared back at her and said nothing. I just spent the weekend unable to walk due to my right foot hurts so bad. I don’t think any Alkaline water is going to cure that.
Congratulations Kelly for your well deserved Web MD award. You represent all of us and you are our champion! Good Luck on Rituxan…I had my first loading dose of Remicade yesterday…I also have a headache..hope yours is relieved by now…Thanks for all you do…
Kelly, congratulations (a little late) on the WebMD award, so well-deserved!
I would love to know how you are doing on Rituxan. It scares me more than all the other meds, because of the potential for transfusion reactions and the other rare but serious adverse effects. I haven’t decided if the trade-offs are worth it, including my anxiety and worry about these possible effects. Would appreciate any comments/feedback.
Thank you – I’ll write more about both things soon – I’ve been preparing for ACR for weeks and here all week – 1/2 day of sightseeing now & then packing. Then a day of travel & hopefully then I can write while I rest. No apparent effect from Rituxan yet, but there is still time. I had the same fears – they do need to be diligent about the pre-meds and my nurses were, especially since my infusion was faster for the clinical trial.
so proud of you!
i hope the rituxan helped. i know your last post was the 11th and you said no effect yet, but i still hope that it helps.
spoke with a friend today, a breast cancer survivor, and she summed it up nicely . . . something about feeling like lab mices (her word, not mine!), with all the drugs they give us, experimenting because they don’t know what to do . . .
I wrote regarding the :final door” and I;m ready but it vanished …. time to try and go that way again
I WANT TO SUBSCRIBE TO RA WARRIOR AND YOU SENT ME AN EMAIL TO SUBSCRIBE BUT I AM NOT COMPUTER SAVEY I HAVE NO IDEA HOW TO CUT AND PASTE AND THE E-MAIL LINK TO YOUR SITE DOES NOT GET ME TO YOUR SITE. PLEAE HELP I WANT TO JOIN RA WARRIOR PLEASE HELP PLEASE HELP
THANK YOU
SHERRY
I was suggested this blog via my cousin. I’m not certain whether this post is written through him as nobody else know such specific approximately my difficulty. You are wonderful! Thanks!
Rituxin did nothing for me. The price was $28,000! Thankfully my insurance paid for it.
However, a combination of Rituxin & that terrible methotrexate gave me COPD. I can’t take any other of the new biologics because of the cancer possibility.
Be careful of these drugs!