Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Started Rituximab at OMI/Center for Complex Diseases

Discussion in 'Rituximab: News and Research' started by bdonovan, Dec 19, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Wow, please keep me posted, I really want to follow your journey. I am assuming your insurance from Croatia is not covering this and you will do the Ritux here in CA privately?

    Do you have family here with you? Even though I was not allergic, I prepared for the worst and for the very first infusion, I had someone stay with me for 72 hours after Ritux (alternated three people) but I was never alone.

    I assume your first two infusions will be two weeks apart (Days zero and 14) but then the next one will be at the three month mark so would you fly home and then back to CA?
     
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  2. ivorin

    ivorin Senior Member

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    It's not, but the costs with Genentech's help program don't come out that crazy.

    I have my mother with me, I am unable to care for myself for now, so i will definitely have someone with me :)

    That's exactly the plan. Hopefully I can make it and nothing bad happens.

    I still haven't finalized my decision though, I am scared of using RTX after the trial went negative and what with the story of Olaf Bodden and what happened to him after taking RTX for CFS. I really wish there was more information on who benefits and when, even if Dr. K thinks I am a very good candidate.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    That is good news and I was not sure if you could apply to Genentech if not a US Citizen. If my insurance denies me before I am done, I will be going that route, too.

    I am so glad your mom is with you, that is a relief to hear.

    For me the trial being negative was irrelevant b/c I am doing the Ritux for B-cell driven autoimmune disease and not for CFS. I reached the point in 2015 (prior to starting IVIG in 2016 and Ritux in 2017) that I could not breathe, walk, or eat food. I was researching assisted suicide through doctors in my state b/c my life was basically over.

    When we discovered the paraneoplastic autoantibodies and that I had an illness similar to LEMS (but not LEMS on an EMG) plus Autoimmune POTS and that IVIG and Ritux could potentially improve my case, even my own mother and husband (at that time) felt the risk was worth dying for and in my case, it has paid off.

    My mom has stage 4 cancer now and I was able to walk around hospital today without wheelchair and stayed for seven hours without a single symptom or allergic reaction to anything. The only thing I could not do (because it would trigger a POTS reaction) was bend down to clean up some water that had spilled on the floor so my sister did this. But otherwise, I felt like a normal person all day. But my case may be 100% different than yours. Do you have muscle weakness, breathing weakness or get anaphylaxis? These three were the bane of my existence and they are gone now, even though I still have dysautonomia & POTS.
     
    Last edited: Dec 27, 2017
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  4. ivorin

    ivorin Senior Member

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    @Gingergrrl It's beautiful to hear that you made it out of the Hellhole that is existing with these illnesses to a point where you're on the right track to live an actual life, I am very happy for you :)

    I do not have those symptoms, but I do have neuropsychiatric issues that Dr. K thinks are autoimmune in nature, so his hope is those would be solved with the therapy. I wish I could have IVIG before, but I can't really afford it or get it out of my insurance so it is either RTX, or hoping for a miracle. I may just try the other therapy he has given me for a few months and try to get SCIG before I take the plunge, I really don't know. These are the types of decisions that you're not really equipped to handle :/
     
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  5. bdonovan

    bdonovan

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    Hey all,

    Regret the delay in updates. The main reason for no updates is I haven't noticed much change. I just had my 3rd infusion last week. My fatigue goes up and down (though overall fatigue is significant) just as it was before rituxan. I've been told that many don't feel much until 6 months (although some earlier at 3 months and even earlier)- it all depends. Dr. Chheda mentioned mo 3-6, body is recovering even though immune cells normalized so hoping for the best. One positive note is at times I seem to have more energy in my arms. For 4 years never wanted to lift a dumbbell. And there have been 3 days by body was asking for it- only after the Rituxan. A small indication but I'm hoping it means some more recovery to come.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    That is interesting re: your arms and my arm strength has dramatically increased from IVIG and Rituximab (although I have never had the urge to lift a dumbbell LOL).

    Were your arm muscles severely weak (nearly dead and non-functional) like mine prior to treatment?
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Also @ivorin, I just saw your post above (from Dec) and missed your tag at the time b/c it was only a few days after my mom went into hospital.
    Are you still in No. CA and are you still posting? How is your treatment going?
     
  8. bdonovan

    bdonovan

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    I have exertion intolerance; my body would react negatively when I would do anything with my arms, legs, any physical exertion. People would say "well thats normal after you exert yourself or lift". But I've been weight lifting for over 10 years before I got chronic fatigue. I know the difference between after-workout fatigue and what you feel like after exertion with chronic fatigue. They are very different. With the latter, I knew it was a negative thing that would last sometimes days - which was not normal - especially for light lifting. It would give me a pit in my stomach/stomach discomfort, overall body fatigue, and just a feeling like toxins throughout my body.

    I guess my muscles just "talked to one day" and said I they needed to be used. I lifted a bit and felt fine afterwards. But it's only happened twice over the 4 months of taxing Rituxan - they were pretty isolated incidents. I'm curious how your improvement took place- was it gradual? Did you have some earlier moments where you had progress but then it receded?

    (random question: but did you ever get massages? I often find these help and then other times I find they worsen my symptoms- especially the chronic soreness in my limbs and overall energy).
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    It sounds like (and please correct me if I am wrong) you were able to do certain activities involving muscle exertion but knew you would pay a HUGE price in the upcoming days which was totally abnormal compared to your past history of working out and lifting weights?

    My case was different in that I had constant muscle weakness, especially in my upper body (arms, neck, lungs) which affected my breathing and my ability to do just about anything with my arms like open a water bottle, turn on faucets in shower, even open my front door or patio door. I just completely lacked muscle strength although it was NEVER as bad in my legs as in my upper body and I do not know why. It was getting so bad that my thyroid doctor said (in 2015) that he was afraid I could end up on a ventilator if it did not plateau which scared the hell out of me.

    The muscle weakness has now gone away and I can walk without wheelchair and actually drove my car for the first time today (for about an hour) for the first time since 2014! I can use my arms for all normal activities again (I can open packages, cut vegetables, use a hairdryer again, etc), and I can inhale a full breath down to my diaphragm which I had lost the ability to do. It's like the IVIG & Rituximab have given me back the ability to have normal muscle function (although I do not believe that I will ever be as strong as I was pre-illness when I could carry groceries up three flights of stairs- and I have no expectation of ever reaching that kind of level).

    That is so interesting and I have not experienced that. Even though it has only happened twice so far, do you think it is related to the Ritux?

    That's a great question and I am really thinking how to explain my answer. My illness had several triggers and the final one was 3 yrs exposure to toxic black mold in prior rental. If we had not moved and gotten rid of all our belongings, I am not sure if I would still be alive today b/c I was having constant anaphylaxis in 2015. So finding the right MCAS meds was the very first step to stop the allergic reactions and then eat (limited) food again.

    But I was still extremely ill and could only stand for about 30 seconds without wheelchair. I had no arm strength and required assistance for just about all tasks of daily living. I could not walk, could not open my apt door, could not breath, had severe POTS, etc. I tried many treatments that either did not help or made me worse. It was not until I started high dose IVIG that I noticed things changing.

    My MCAS (allergic reactions) went into remission and have not returned in almost two yrs. My overall stamina improved and I was able to do more w/my arms. I had an insane startle reflex that also disappeared. Then my progress seemed to plateau until I began Rituximab (after already doing a full year of IVIG). I noticed after Ritux that things started moving forward again. I had even more arm muscle strength & stamina, and my breathing improved.

    And finally more recently, my POTS improved so I can walk without wheelchair (short distances and no stairs) but enough to go out on short errands without the wheelchair which is life-changing. And now today, I drove my car and was able to move the gear shift and parking break with complete ease (and I had lost the ability to do that pre-treatment). I still have POTS and certain motions can trigger an episode but I try to be careful.

    These treatments also allowed me to be at hospital every day for almost three months while my mom was dying of cancer (and if she had gotten sick in 2015, I would have had to stay home, and not only could not have helped her, but someone would have had to stay home and help me).

    I do not get massages (only b/c of lack of time and so much else that I need to do) but when I did get them many years ago, I always enjoyed them and found them helpful. I am not sure how they would be now.
     
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