Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Most notable change since Rituxan

Discussion in 'Rituximab: News and Research' started by Rebecca2z, Oct 26, 2015.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

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    Its been 7 months since my Rituxan treatments and I just wanted to post on my current state.

    While I have seen improvements in my energy and fatigue I have to say that what has surprised me and has been the most prominent change in me is the brain fog, this was so debilitating for me and now that I don't have that I can see this is what was sucking the life out of me.

    When I wake up in the morning I am awake now, I can think. I can tolerate sights, (light) sounds and activity around me where before I couldn't. I can think so clearly now. This brain fog was what was so fatiguing and I didn't realize it. So I have to say this is my biggest improvement.

    Equal to the changes in my ability to think clearly would be the changes in my autonomic issues, I have had major improvements in these problems, I can even sweat a tiny bit. The neuropathy in my feet has improved dramatically. My low blood pressure is better. I am off all drugs except a small dose of Northera ( for low BP)

    Another notable change is in my fatigue, it is much less, not entirely gone but much better. I now can recover much quicker after activities.

    All in all for me the risks of doing Rituxan were worth it. I have my B-cells checked every 3 months, I am due to have them checked in Nov. So I maybe getting one treatment of RTX in Dec. I am not feeling the effects of the RTX 'wearing off' at this point.

    As far as my dx of discoid lupus and Ehlers Danlos the RTX has made no changes, which I didn't expect that it would.

    Hope this helps !
    Rebecca
     
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  2. msf

    msf Senior Member

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    I´m glad it´s still working for you.

    I think the autonomic stuff is likely to make up part of the autoimmune component of ME. I am eally curious to know whether Ritux has an effect on gut issues or on the lactic acid feeling that a lot of us have. Did you have either of these issues, and if so has Ritux had any effect on them?
     
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  3. Rebecca2z

    Rebecca2z Paradise, Ca

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    @msf, hello. I do have a lot of gut issues, I am on a feeding tube and have been on it for over a year. When I was put on it I could eat nothing and I had no, absolutely no appetite at all. Now after the Rituxan I actually do have an appetite. So it has made a big change in the ability to feel hunger. That being said I still can only eat small amounts and I am not able to take in enough calories.

    But there has been a very definite improvement/change in my guts ability to digest and feel hunger.

    My feeling is the Rituxan improved my autonomic issues of the gut but that the Ehlers Danlos has made my stomach tissue stretchy and not able to move food as it should, so this is part of the connective tissue problems of Ehlers Danlos. But believe me when I tell you my gut problems improved 100% since the Rituxan. My stomach was like dead before the RTX.
     
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  4. msf

    msf Senior Member

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    Wow, that´s great!

    Yes, I can see how it might improve the autonomic side of it. The part I think Ritux is less likely to help is the process by which eating certain foods makes me feel worse, but having listened to your story I think I should be glad that I can eat anything! I knew some ME patients were fed by tube, but i didn´t realise that some of these patients were responders to Ritux.
     
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  5. BurnA

    BurnA Senior Member

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    So happy for you ! It's great to hear how successful this was for you - it gives us all hope!
    Can I ask if your autonomic symptoms included POTS and if so has there been any effect on this ?
     
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  6. L'engle

    L'engle moogle

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    Thanks for the update! So glad to hear about the brain fog. I hope good things continue!
     
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  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Amazing Rebecca!:)))
     
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  8. Rebecca2z

    Rebecca2z Paradise, Ca

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    @BurnA , I don't really know the term 'POTS', in my case I went through 2 hours of tests in the neurology lab at Stanford. These tests were tilt table, sweat and heart tests. I didn't pass any of the tests, they were all abnormal. Doctor was surprised I could even stand up. He didn't call what I have POTS he used the term dysautonomia and autonomic dysfunction.
    Is that the same thing as POTS ? LOL sorry I should know this but I don't.
     
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  9. BurnA

    BurnA Senior Member

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    Thanks - yes it sounds like POTS, they use tilt table to test for it and yes autonomic dysfunction is also another name.
    Did you experience dizziness or lightheadedness especially when standing up ? Have you noticed any improvement in this ?
    Thanks again. !
     
  10. Rebecca2z

    Rebecca2z Paradise, Ca

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    @BurnA - oh yes I was very dizzy standing, then I became dizzy sitting. I could only lay down to feel normal. I had no idea what this was and it was getting worse. My blood pressure standing was 58/42 and sometimes, many times I couldn't even get my BP on the cuff. Sometimes I couldn't stand long enough to take my BP.

    This has all gone away now. I still run low BP but not nearly as bad. I have cut my meds in half. I do wonder will all those problems return when RTX wears off. Be interesting to see how I am in 3 months.
     
    Last edited: Oct 26, 2015
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  11. BurnA

    BurnA Senior Member

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    Thanks for keeping us informed - please continue to let us know how you get on. Hopefully the effects won't wear off for a long time but a maintenance dose of rtx should sort you out ! The main thing is you are a responder !!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Rebecca2z, I apologize if you already posted this in one of your prior threads but did you see Dr. Jaradeh at Stanford in the neurology/autonomic lab? I am trying to arrange this (nothing to do with Rituxan in my case, but to get the tests and be assessed by him) and am being told that I must stop all meds including anti-histamines in order to have the tests. I spoke with Stanford twice and explained if I stop the anti-histamines which I take for MCAS, I would go into anaphylaxis if I eat food which could even be fatal but they said unless I stop, I cannot have any of the tests.

    I know this is different than your situation and my long-winded question :D is... did you have to stop all your meds in order to have the autonomic tests at Stanford (i.e. Northera in your case) or did they let you do the testing anyway? Am just curious if maybe they changed their protocol and no rush to answer.

    I really appreciate your updates and that you are doing so well. Hoping you will be off the feeding tube one day soon!
     
  13. jimells

    jimells Senior Member

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    @Rebecca2z as I understand it, POTS (Postural Orthostatic Tachycardia) patients can generally maintain blood pressure while standing due to the increase in heart rate, although patients still feel awful. Some patients actually experience hypertension during a bad POTS attack - this is what happens to me.

    Low blood volume is frequently a part of POTS, and patients find that IV saline can improve symptoms somewhat.

    I'm so glad to hear you are improving. We are all cheering you on! :thumbsup:
     
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  14. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Gingergrrl - oh my you are in a predicament in regards to stopping those meds you are on . I did see Dr. Jaradeh and Dr. Miglis ( works with Jaradeh) Miglis is who did my actual autonomic tests at Stanford. I am so grateful to Dr. Miglis, he really turned things around for me- but all this was done before I was on any meds for BP and of course before RTX.

    I lived life laying down not knowing why I couldn't stand, I couldn't tolerate any heat and he found I don't sweat. I couldn't breathe and my heart was all funky.

    Dr. Miglis found the problems with my BP and started me on medications, the first two meds he tried had horrid side effects so he put me on the Northera which has no side effects that I notice. (This is a very pricey drug, 200 dollars a pill, but it works great)

    But unlike you I wasn't on any meds that I had to stop before the tests other than prednisone. For sure you wouldn't want to be on on drugs like anti-histamines as this would not give a true picture of your problems. I believe even coffee and sugars would alter the test results.

    I used to take anti-histamines for my interstitial cystitis but I had stopped those many months before the neurology tests. I crawled into that neurology lab, I couldn't even sit in the waiting room, I was laying down half on the floor and half on the chair. I was truly at the bottom and I suspect that is where you will be off your meds.

    I am sorry you have to go through being off these important meds, but I don't see anyway around it. Can you go on a liquid diet, like Boost or other liquid protein drinks for a few weeks or are there a few foods that are 'safe foods' that you can eat?
     
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  15. Rebecca2z

    Rebecca2z Paradise, Ca

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    @jimells thank you for explaining POTS. So my BP drops when standing and sitting and keeps dropping till I pass out, (unless I lay down) this is not POTS ? I need to google this POTS, wonder why my doctor didn't call it this ?

    I am on a feeding tube ( via picc line in my arm) in this TPN (Total parenteral nutrition ) they have added extra fluids to help - but it is not quite enough so I take the Northera to give me a higher BP.

    I am able to sit and stand now , this alone has taken a lot of my suffering away.
    Thanks for cheering me on !
     
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  16. Hip

    Hip Senior Member

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    There are three different types of orthostatic intolerance (meaning symptoms that appear on standing) that you can get in ME/CFS:

    Postural orthostatic tachycardia syndrome (POTS)
    Neurally mediated hypotension (NMH)
    Orthostatic hypotension (OH)


    POTS is a condition where your heart rate goes up by 30 or more on standing from a lying down position.

    OH and NMH are conditions in which your blood pressure drops upon standing. In OH the pressure drop is usually immediate; in NMH the drop occurs after a long period of time standing, or also sometimes after having an unpleasant or upsetting experience.

    Orthostatic hypotension (OH) is diagnosed when, on standing from a sitting or lying position, there is a fall in systolic blood pressure of 20 mm Hg or more, and/or a fall in diastolic blood pressure of 10 mm Hg or more within 5 minutes from standing. In some people with OH, the drop in blood pressure can take up to 10 minutes to appear (this is called delayed orthostatic hypotension).

    These blood pressure measurements can be made with an ordinary home blood pressure meter. Note that a blood pressure reading is expressed as systolic / diastolic, for example: 120 / 80.

    The above copied from my ME/CFS roadmap document.
     
    Last edited: Oct 26, 2015
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Rebecca2z
    Did you have any before and after nk function testing?
    Interested to see if this potential biomarker for cfsme has changed or not.

    Cheers
     
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  18. sillysocks84

    sillysocks84 Senior Member

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    That gives us all hope! I am so happy you continue to share your experiences! I hope things continue to improve for you even more.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Thanks Rebecca, but it's literally physically impossible for me to be off of the anti-histamines right now and survive. I could choose to stop the Atenolol and Midodrine (which is also required for the testing) and while it would be horrible, I could do it. However, due to the level of my MCAS, I have to take the anti-histamines (at minimum Zyrtec & Ketotefin) 30-60 minutes before ingesting any food and in emergency Atarax or Benadryl, next level is nebulized rescue meds and final level is EpiPen.

    I tested it out today with one safe food and coconut water (not b/c of Stanford but just to assess where I was at) and it was disastrous. I will spare you the details to not derail your thread but it was the worst reaction I have had since April & May when I got hospitalized. Right now, the MCAS is the absolute worst part of my illness (which was not always the case.) To get to Stanford would either be a seven hour car ride or a one hour flight, neither of which I could safely attempt without the anti-histamines. It's a bummer :aghhh:.
     
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  20. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Gingergrrl - oh god I would absolutely say you can't go off the anti-histamines, way too dangerous. I am surprised Stanford doesn't have any suggestions for people in your situation.
    I am sorry you are going through all this. It is just awful and not much you can do at least right now. Maybe another medical institute.

    I will tell you after doing some checking on doctors in neurology I have found that Stanford is 35 or 36 on the list of best neurology clinics. UCSF ( also in San Fran) is # 5. I didn't know this when I was referred to Stanford's neurology clinic, I didn't even know I had these types of issues - otherwise I would have gone to UCSF. We don't have time to mess with second best.

    Contact the UCSF team and see what they say. Contact one of the doctors using their private e-mail, which can be had if you dig. I can get you a contact if you need it.
     
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