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Adults With ITP
Treatment - General
Rituxan desensitization
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Rituxan desensitization 4 years 3 months ago #62782

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
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I have not posted for several years. I have both ITP and hemolytic anemia. Rituxan works very well for either disorder for me and I have had it in 2007, 2011, 2013, and 2016 with full remission lasting at least 2 years. Currently my platlets are low and being held in safe 30k range with 10 mg prednisone. My hematologist and I would like to repeat Rituxan but I have had reactions to the first infusion of each round- hives, itchy throat, flushing, lip swelling. In 2016 the first infusion took 10 hours. The next 3 go fine, no problems and done in 4 hours. I have always been pretreated with benedryl, pepcid, and streroids. My hematologist is sending me to allergy and immunology at Brigham and Womens in Boston. They are going to do an allergy skin test with Rituxan. Then they have a rapid desensitization protocol for giving me Rituxan.
I wondered if anyone else has tried this??

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Rituxan desensitization 4 years 3 months ago #62784

  • Hal9000
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... My hematologist is sending me to allergy and immunology at Brigham and Womens in Boston. They are going to do an allergy skin test with Rituxan. Then they have a rapid desensitization protocol for giving me Rituxan.

Sounds like you have a great doctor with lots of experience. Good luck.
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Rituxan desensitization 4 years 3 months ago #62786

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hey Dru! How are you?

I don't know anything about desensitization but having had bad reactions myself, that would scare me. Reactions tend to get worse as time goes on. I've never seen anyone here do that. Have you thought about low dose Rituxan? It might not help with the reactions but may reduce the toxicity of Rituxan since you've had it so many times.

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Rituxan desensitization 4 years 3 months ago #62787

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Thanks Sandi, you are absolutely amazing, still here and helping people all this time! Im having more trouble with the ITP this time, my husband passed away 3 months ago and not here to help. Plus wondering if the stress of his death contributed to this relapse.
I asked the doctor about low dose and he said No!! (I do really like this doctor who is new to me and he did explain his reasoning to me) He called the head of allergy and immunology at BW hospital and talked to her about me. She has developed this rapid desensitization protocol and it has been used around the world with excellent results in cancer patients. I will know more next Weds. when I go to have the skin test.

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Rituxan desensitization 4 years 3 months ago #62788

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm so sorry about your husband, Dru. Stress can contribute to relapses.
Well, it will be interesting to hear what happens. Please keep me updated.

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Rituxan desensitization 4 years 3 months ago #62789

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Thank-you Sandi. Yes I will definately keep you posted about this.

Dru

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Rituxan desensitization 4 years 3 months ago #62792

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Dru.
I am sorry to hear about your husband. I lost mine suddenly nearly 7 years ago. I was extremely stressed, diagnosed with PTSD and received 2 years of psychotherapy.
Shortly after finishing that I had horrendous sinusitis and developed ITP. My haemo said straight away stress would be a contributing factor.
I was also in a very stressful job. On the advice of my haemo I changed my role to a less demanding position 2 years ago.
My ITP is more stable than when in my previous role.

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Rituxan desensitization 4 years 3 months ago #62793

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Thank-you. Yes, I never really believed stress contributed to ITP, but now I do.

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Rituxan desensitization 4 years 3 months ago #62800

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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  • Thank you received: 2368
I believe that stress can cause trauma to the body which can definitely affect the immune system. If stress can cause heart attacks and strokes, it can also affect the immune system. It's well known that stress can cause Lupus flares, so why not ITP too?

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Rituxan desensitization 4 years 3 months ago #62896

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
On Wednesday I went to Brigham and Womens Hospital in Boston to be tested by the allergy/immunology team. They did a skin prick test with Rituxan on my arm, I waited 20 minutes and after there was no reaction they gave me a slightly higher ( but very small) dose under my skin. After repeating this 3 times I still had no reaction. The doctor met with me and took a very thorough history of my reactions to Rituxan over the past 10 years. These included hives, chest pain, itchy throat, swollen lips. She said that many people test negative with a skin test but still have bad reactions. So she said that I will need to go to Dana Farber Hospital in Boston to get my Rituxan using the desensitization protocol. There is a desensititation team and she said that they treat 4-5 people every day there who have had infusion reactions, serum sickness, or allergies. There is info on the protocol online. It is pretty interesting and gives me alot of hope as I respond very well to Rituxan but was fearful of taking it again. If I do ok with this then I can have my next 3 infusions at my regular hematologist.

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Rituxan desensitization 4 years 3 months ago #63024

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Going to Dana Farber May 3 to get Rituxan with the desensitization team.
Will try to keep my counts up with the lowest dose of prednisone possible, it makes me hyped up and cant sleep even on 10mg. Count last Friday was 19k.

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Rituxan desensitization 4 years 3 months ago #63026

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Good luck, Dru. You're very brave!
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Rituxan desensitization 4 years 2 months ago #63181

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
So Dana Farber called and said there was a cancellation last Thursday. I had to stay overnight in a hotel so I could be there at 6am as instructed. When I get there they said patients arent allowed in til 7 so I waited. At 7 they told me my appointment had been canceled because I dont have cancer and they only treat cancer patients!

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Rituxan desensitization 4 years 2 months ago #63190

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Oh Dru! My mouth just dropped open! What a horrible thing! Why on earth did they make the appointment in the first place?

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Rituxan desensitization 4 years 2 months ago #63213

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
My doctor made the appointment with the allergy team at Dana Farber and Brigham and women’s. They gave me the appointment and my hematologist gave them my info. They canceled the appointment a few days later but didn’t tell me or my doctor. Dana Farber said it was the fault of Brigham and women’s. When my doctor found out he called Brigham and women’s and they called me Friday . They said it was Dana Farber fault! But anyway they got me on to their clinic for tomorrow. I talked to the allergy and immunology doctor and am feeling confident about tomorrow. But this has been a bad few days!

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Rituxan desensitization 4 years 2 months ago #63218

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2368
Good luck! Let me know how it goes.

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Rituxan desensitization 4 years 2 months ago #63225

  • momto3boys
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I'm glad you got it worked out. It must be so frustrating after all of that hotel planning and appointment mix up, ugh!
Fingers crossed that you avoid any reactions and can get another Rituxan remission going.

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Rituxan desensitization 4 years 2 months ago #63230

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Yesterday at Brigham and Womens went great. The allergist met with me first and showed me the array of about 30 meds available to deal with a reaction. They Gave me zrytec and pepcid before and then gave me extremely small dose of Rituxan changing the bag every 15 minutes with increasing dose for 3 hours. Then they started the full dose and I had the strong chest pain that I always get with Rituxan. This has been determined to be gastrointestinal and they gave me pepcid and stopped the infusion until it stopped, 20 minutes. Soon I got an itchy throat, ears, mouth, and they gave me more zrytec and benedryl. After that went away I did great and no problems for the next 3 hours- previously My reactions to rituxan were hives, flushing , swollen lips. Now the plan is for me to get my next 3 infusions at my regular hematologists office.

Today I feel crappy like i always do the day after rituxan small fever 99.6, achy and tired.

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Rituxan desensitization 4 years 2 months ago #63232

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Okay, good! One down, three to go!
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Rituxan desensitization 4 years 2 months ago #63282

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Through the first hour of Rituxan at my regular hematologist they are going real slow. I almost had an anxiety attack but some deep breathing helped.

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Rituxan desensitization 4 years 2 months ago #63289

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
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  • Thank you received: 2368
It doesn't seem like they desensitized you though, they just tried to prevent/stop reactions. I hope you do better with the next one. Let me know!

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Rituxan desensitization 4 years 2 months ago #63296

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
The desensitization was done last week at the hospital. For me, after the first infusion of each round I never have a problem. So the allergy doctor felt that once I got through the first infusion with them I could have it at my regular hematologist and I would not need the desensitization protocol. He recommended that they premed me with solumedrol and Zyrtec and have Benedryl available if I had a problem. I was just really anxious the first hour because there were several nurses who were all over me waiting for me to have a reaction. But they stopped after the first hour and I relaxed more.
And true to my history I got through it with no problem at all!

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Rituxan desensitization 4 years 2 months ago #63297

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
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The first infusion usually is the hardest. I hope you can relax at the next one.

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Rituxan desensitization 4 years 2 months ago #63305

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Thanks Sandi,
I know I will feel much more relaxed Monday and will get through it fine and less time.

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Rituxan desensitization 4 years 2 months ago #63308

  • momto3boys
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Glad you are doing well so far. Hopefully back into remission after your final infusions. Hang in there!
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Rituxan desensitization 4 years 2 months ago #63345

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Third Rituxan went great no problems at all and done in 3 hours.
Platelets up to 275 so great response from 19 k 3 weeks ago.

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Rituxan desensitization 4 years 2 months ago #63346

  • Hal9000
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Very nice to hear Dru. You react so quickly. It's almost like your immune system needs a tiny little push to get back into remission. Now if they could come up with a way to extend those two years out.

I was looking up the desensitization protocol so as to add it to my web page. Does this look like the one:
hemonc.org/wiki/Rituximab_(Rituxan)_desensitization_protocol

Did you notice if they followed it closely or skipped a few steps?
Note to self, she was taking 10mg Pred during Rituxan treatments.

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Rituxan desensitization 4 years 2 months ago #63348

  • momto3boys
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Awesome dru! That's a really great response!
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Rituxan desensitization 4 years 2 months ago #63351

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Hal,
I was lucky enough to have this at Brigham and women’s hospital in Boston. Dr Castells and Dr Sloan, listed under reference in that article were my doctors. The protocol was followed exactly as far as the Rituxan. The support meds are individual for each patient. They gave me only Zyrtec and Pepcid to start. About 4 hours in I had itching and they gave me Benadryl.

This past week I was tapering my prednisone and have been on 5mg.

I like your tables and research that you have done. Very interesting. I’m not sure if I fit in anywhere, I respond to everything I have been given, prednisone at 30mg makes me go from 0k to 400,000 in 5 days, IVIG, and Rituxan. But I also have hemolytic anemia so have never been on TPOs.

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Rituxan desensitization 4 years 2 months ago #63354

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Great news, Dru! I'm happy to hear it!
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Adults With ITP
Treatment - General
Rituxan desensitization

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