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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Rebecca2z

    My Rituximab experience for ME

    Oh @funkyqueen, I am saddened to hear about the RTX not being available to you anymore. I know when my B cells return I also return to my bedridden state. Yes I have recently been dx with APECED, but that dx is questionable. What is not questionable is the ME I have suffered from since my early...
  2. Rebecca2z

    Rituxan & Pre-meds

    Well I made it to the snow today, I was pretty tried after finding and putting on all my winter clothes but recovered quickly and got to enjoy the snow ! Here are a couple of photos.....
  3. Rebecca2z

    Rituxan & Pre-meds

    @Jonathan Edwards I want to Thank You for the information you shared on RTX and the use of steroids as a pre med. I printed out your published articles and your statement you wrote to me about the protocols and gave it to my Stanford doctor. The nurse took the info and gave it to my doctor...
  4. Rebecca2z

    Rituxan & Pre-meds

    Awww thanks Gin, way to far to come to your infusion center ! I can go Stanford every 5-6 months for RTX no problem, except it is a 10 hour round trip verses 5 min down the road, so I am going to work hard getting the steroids taken off the order and stay local. It will start with my Stanford...
  5. Rebecca2z

    Rituxan & Pre-meds

    @daisybell - lol .... (bigwig) I am working on just that ! It's worth a try !! Thanks for the support !
  6. Rebecca2z

    mestinon/growth hormone

    I take mestinon every day for last year, I tested positive for MG, but it is actually given to me for digestive and swallowing problems. works well for that. I take the liquid form - tastes yummy ! My muscle weakness is only some what improved, might need bigger dose for that. RTX has really...
  7. Rebecca2z

    Rituxan & Pre-meds

    @Gingergrrl I am so happy to hear you are doing ok and are in the final stretch ! Drink lots of water ok ! I do decline the steroids every time and then a big wig in the cancer center comes over and says if I decline I can't have the RTX or the IVIG. I am telling you I will get this fixed or...
  8. Rebecca2z

    Rituxan & Pre-meds

    @Gingergrrl ~ YAHOO 2nd IVIG for Gingergrrl !! Hey thank you so much for sharing that with me, I wish I was getting my treatments there ! They make me take these steroids with the IVIG too ! That is why I got in so much trouble with fungus, way to many steroids ! My hospital says it is to...
  9. Rebecca2z

    Rituxan & Pre-meds

    @rosie26 I am sorry you had to go through a respiratory fungal issue. Yes I agree it makes a person so ill and you really do feel you won't survive it. It is just awful sick this problem can make a person. I see my doctors at Stanford in a couple of weeks and believe me the whole appointment...
  10. Rebecca2z

    Rituxan & Pre-meds

    Thank You @Jonathan Edwards for your input on the use of steroids with RTX. I will show your comment to my doctor at Stanford. Of course the local hospital I get my RTX at ( not Standford) may not be willing to follow the order from my Stanford doctor of not using steroids. My Stanford doctors...
  11. Rebecca2z

    Rituxan & Pre-meds

    Thank You @Sushi & @Gingergrrl for your kind words. No of course I don't mind saying which pre-meds, always happy to give any info. The pre-meds are IV sol-u-medrol ( which makes my long bones and jaw very painful) so they switched to IV decadron. They also used to give me benadryl as a premed...
  12. Rebecca2z

    Rituxan & Pre-meds

    As many know here I have been getting RTX for a little over a year and I wanted to give an update. I have been getting RTX about every 5 mo, when ( for lack of a better way to put it ) the RTX wears off I am in severe pain in my hands & feet, can't tolerate the sun, have tons of discoid lupus...
  13. Rebecca2z

    Rituxan Update

    Hello @funkyqueen ! So great hear to from you. Thank you for all your encouragement and kind words. I have been wondering how you are doing. I understood your post and your English is great ! Sorry to hear you had bronchitis but yes I believe lung infections can be associated with RTX. That is...
  14. Rebecca2z

    Rituxan Update

    Hi again @CFS_for_19_years , I am on this forum as hotfeet2z : http://www.livingwitherythromelalgia.org/forum/topics/rituxan-solved-my-erythromelalgia That is interesting about quetiapine (Seroquel), I will google that, even though I am out of pain. I am sorry you have to take such strong pain...
  15. Rebecca2z

    Rituxan Update

    Hi @CFS_for_19_years , thank you for all your great info ! Info like that could help others who suffer from erythromelalgia and without the risks of RTX. Yes I am very surprised about my erythromelalgia responding to the RTX, but I can't contribute it to anything else. When the RTX wore off...
  16. Rebecca2z

    Rituxan Update

    @Gingergrrl, yes I am sorry we missed each other at Stanford but maybe the next time we can meet up. You send a PM when you have recovered from your trip, I know how taxing those trips are. My hope is you can get some help from your new Stanford team ! XXOO
  17. Rebecca2z

    Rituxan Update

    @perrier that makes me feel so good to know you have a little more hope from reading my posts. I feel just awful your daughter struggles with ME, the horror of what you must feel from watching her go through this breaks my heart. I feel positive she will benefit from some of the research that...
  18. Rebecca2z

    Rituxan Update

    So excited for you @Marky90 and can't wait to hear how it goes for you. The hardest part is the wait, for me it took 2 months to kick in, starts out subtle and then each day gets better and better. Below are some my personal notes I took while having the RTX and the day after. These might help...
  19. Rebecca2z

    Rituxan Update

    Aww thanks @bertiedog for your thoughtful post ! Yes I was on Fludrocortisone and I had terrible side effects so the doctor put me on something called Northera for low BP and it works awesome with no side effects. Very expensive drug, 200 hundred bucks a pill and I had to take 6 pills a day ...
  20. Rebecca2z

    Rituxan Update

    @kangaSue, So sorry to read about your issues which are very similar to mine. The GI problems are life changing. I didn't expect to see all the positive changes in my autonomic system that I have seen from the Rituxan. I still struggle with eating, but I am off that feeding tube and hope to...
  21. Rebecca2z

    Rituxan Update

    Hello @Sallyagerharris - My hope for you and others is to not have any bed bound days- I know how hard it is to live like that. Thank you for your kind post. Yes my parents are thrilled that I am going to come see them, they are in their middle 80's, I wanted to see them 5 years ago but that...
  22. Rebecca2z

    Rituxan Update

    Aren't you getting RTX sometime in the near future? Or am I thinking of someone else .. I need to spend time in catching up with what you all are doing!!
  23. Rebecca2z

    Rituxan Update

    @daisybell thank you for your kind post. I am very pleased that I will have monthly checks so I don't bottom out again.
  24. Rebecca2z

    Rituxan Update

    @Ecoclimber thank you for your kind post! I appreciate the support you all give. I am so bad about not over doing it- it is so hard to rein myself in after being bedridden for so many years.. I appreciate the reminder! :rolleyes:
  25. Rebecca2z

    Rituxan Update

    Awe- thank you @geraldt52 !!! :thumbsup:
  26. Rebecca2z

    Rituxan Update

    I for sure @Sushi should have been chatting with you when I got all cry baby about 'why not me" your head is on straight for sure... I like it "Me Next". Lol
  27. Rebecca2z

    Rituxan Update

    @EtherSpin, thank you for your comments about my post about "raving about my new found health" I guess I was thinking back when I was crawling around on the floor because I had no BP , and I was unable to hold myself up when it so hot out and i was on a feeding tube going down hill fast and I...
  28. Rebecca2z

    Rituxan Update

    @dannybex , my stomach issues is slow motility, it takes a long time for food to move through my stomach . But I think I read that Rituxan can help people with autoimmune stomach issues. My motility issues are being blamed on my Ehlers Danlos and auto immune . Here is info for those asking how...
  29. Rebecca2z

    Rituxan Update

    Hi @dannybex - on top of my Cfs/me dx, I was dx 5 years ago with APECED, and discoid lupus. I was born with Ehlers Danlos. The life long struggles have been the CFS and EDS. The APECED I am not sure I even have because I don't have the DNA of it from both parents, so I believe that dx is not...
  30. Rebecca2z

    Rituxan Update

    Hello @Sushi , always great to hear from you !! I agree my trip truly does indicate how much better I am doing. I am at Stanfird right now - going to see my Rituxan Doctor !! I think he will be pleased with my progress !! I am anxious to tell him about my changes..