August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
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Rituxan & Pre-meds

Discussion in 'Rituximab: News and Research' started by Rebecca2z, Aug 10, 2016.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

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    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 sores stc...

    I get blood work every month to check the B-Cells & T-cells - which my doctor uses to determine when I need the RTX again, but I can tell right away when I need the RTX, (my severe burning joint pain tells me ) The first time I got the RTX I had it once every week for 4 weeks and it seemed to hold me for about 6-7 months. But now I get RTX every 5 months - one every week for 2 weeks and this only holds me for about 4 months, maybe 5 months.

    I have to say that I have been getting an even better response to the RTX with each round, in other words I feel better - stronger -less neuro pain, joint pain, fatigue, weakness, eating better, much less brain fog, can tolerate the sun and no lupus sores, etc... Not letting my body return to it's state of attacking me and keeping me at a certain level seems to be very beneficial. ( not informed enough to put it any other way )

    This all being said I am unhappy with the pre-meds that they insist on giving with the RTX - They are about killing me. They give a large dose of steroids and I am not having an easy time with those. I have major fungus issues and these steroids feed that.

    Also due to the steroids I get an infection that requires antibiotics and this also feeds the fungus. I have been dealing with record breaking fungus that has brought me to the ER several times and they suspect I am having fungus issues in my brain, but several spinal taps ( followed by spinal leaks ) later we still don't know for sure.....

    The severe headache, neck pain and nausea are very defined. and so I am guessing it is in my brain. I am taking massive doses of itraconazole which seems to tamp it down some, but when I cut back on those about 4-5 days later the brain pain, neck pain and nausea is back, not sure if this Itra crosses the BBB and feel I need capsofungin..

    I see Stanford soon and hope they help me with this issue.

    @Jonathan Edwards any insight or thoughts on premeds with RTX - in your experience are there other pre-meds that can be used besides steroids ?
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    Thanks so much for posting an update. We all love hearing how RTX is helping you. But, at the same time it is painful to know how the pre-meds are affecting you. I really hope you can find a way to work around these awful side-effects.

    Please keep us posted. We genuinely care about how you are doing!
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Hi @Rebecca2z :hug: I assume the pre-meds are to avoid an allergic or anaphylactic reaction to the RTX, or is it for another reason? Are you comfortable saying which pre-meds and which steroid? Am curious myself so I can compare with my IVIG pre-meds (and hopefully with future RTX pre-meds)! And I second @Sushi that we love hearing from you and knowing how you are doing. Hoping that you get the answers that you need soon.
     
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  4. Rebecca2z

    Rebecca2z Paradise, Ca

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    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, but I kept having a paradoxal reaction to that ( I also have that same reaction to most opiates) so they stopped that premed.

    Stanford contacted my local hospital who does the RTX and said don't use those premeds, use a syringe of hydrocortazone, but even a teeny tiny amount of steroid causes a severe fungal infection, I am never without a fungal infection, it is at times controlled but with steroids on board the fungus is very very bad.

    The hospital refuses to give RTX without steroids, so I am not sure I can continue with the RTX - thus I am looking for a way to continue with the RTX but without the premeds of steroids.

    Happy to hear Gingergrrl you are finally getting IVIG ! Hope you are having improvement in your breathing issues !!
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Of course and I was really worried about you when I hadn't heard from you in a while and am so glad that you are okay!

    Thanks and the info is really helpful. I've never had Solu-medrol (I believe it's like prednisone, which I've also never had) but I've now had IV Decadron at the ER last week for an unrelenting headache from IVIG. I tolerated it well and b/c the headache came back, I took a 2nd dose today (in pill form) b/c sometimes it can take two doses to get rid of IVIG headache. Am really hoping this does the trick.

    Can RTX cause headaches? Has this ever been an issue for you with RTX or with your years of IVIG? Am hoping not (and the unrelenting fungal infections are more than enough for you to deal with!!!)

    As far as Benadryl, I also do not do well with it (as you know) and take Atarax when needed instead. I was allowed to take Atarax as my pre-med for IVIG and am wondering if your doctors would allow you to use Atarax as a pre-med for RTX instead of Benadryl (assuming you tolerate it of course). I do well with opiates and have never had an issue with them in any form as long as they are dye-free.

    My pre-meds for IVIG (just in case this can be of any help to you) were: Tylenol, Atarax, Pepcid, and Solu-Cortef. The first three were pills but the Solu-Cortef was in the IV about 30 min prior to the IVIG. Solu-Cortef is the most benign in the steroid hierarchy (unless you are allergic or some other issue?) I've taken daily Cortef for one year so it seemed like the safest choice for me.

    I have no idea if Solu-Cortef in the IV would make any difference vs. hydrocortisone in a syringe but it might be worth asking your doctor? Is your hospital refusing to administer RTX without a steroid b/c of the risk of allergic/anaphylactic reaction or some other reason? If it's to avoid ANA, I cannot see any way around it but if it's for another reason, maybe they could make an exception?

    @Jonathan Edwards would know the answer re: RTX and steroids better than anyone on earth re: if this is a mandatory part of the protocol.

    For IVIG it is absolutely NOT mandatory but I am doing it b/c of my MCAS to reduce the ANA risk and I was also told it can reduce the risk of aseptic meningitis (with IVIG) which may not pertain to RTX?

    Hoping Dr. Edwards can give you good feedback on this question and hoping you can continue with the RTX.

    Yes, thank you for asking! I had one IVIG followed by some improvements and then the worst headache I've ever experienced in my lifetime which still continues (hence the 2nd Decadron dose today). My 2nd IVIG was postponed b/c of headache. Will update you privately the next time we talk and not take this thread off topic!

    Hoping you can continue RTX, you so deserve it, and hearing from you brightened my day! :angel::star::hug:
     
    Last edited: Aug 10, 2016
  6. Daffodil

    Daffodil Senior Member

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    I Hope this regimen gives you some lasting relief because this medicine sounds awful!
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Rebecca. Premeds are not essential with rituximab. Steroids do not have to be given. I would be happy for you to take a copy of this to your hospital. I designed this treatment protocol and on many occasions we gave rituximab without steroids. We never had any evidence that they were needed and as far as I know they are not. They may increase the effectiveness of the B cell depletion but I rather doubt it. The habit of giving them is simply convention as far as I know. The second patient we ever treated had repeated facial yeast infection after steroids so we stopped giving them for her.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that is very helpful to learn and am tagging @Rebecca2z just in case she missed it. If I do RTX next year, I would do the steroids b/c of my MCAS/anaphylaxis risk but it is very helpful to learn that it is not mandatory for someone who does not need it. Thank you so much for the info.
     
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  9. Rebecca2z

    Rebecca2z Paradise, Ca

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    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 will totally get it, the problem is the local hospital who gives me the RTX. I believe this use of steroids with RTX is for their safety not mine !

    Kindest Regards
    Rebecca
     
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  10. rosie26

    rosie26 Senior Member

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    Hoping you can get away without the steroids next infusion @Rebecca2z I bet I wasn't the only one who sighed a huge sigh of relief that you didn't really need to have the steroids with the RTX infusion.

    I experienced for the first time in my life some kind of fungal thing respiratory wise last year and I honestly didn't think I was going to survive it. I felt absolutely weak and awful with it. All the very best and hope all goes well for you next time.
     
    Last edited: Aug 14, 2016
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  11. Rebecca2z

    Rebecca2z Paradise, Ca

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    @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 will center on my issues with fungus and steroids.

    I hope you never have to go through it again !
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Rebecca2z I am at the infusion center doing my 2nd IVIG and just had long conversation with the nurse re: RTX and she said that they absolutely do not give a steroid as a pre-med and only give Tylenol and Benadryl even to their cancer patients.

    She said for me as a mast cell patient I could have a steroid (if I did RTX in future) but it would never be done otherwise. So I just wanted to let you know.
     
  13. Rebecca2z

    Rebecca2z Paradise, Ca

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    @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 dangerous for me or anyone to NOT have steroids. They are killing me with the steroids, I am not sure how they think in my case it is therapeutic !!

    Seeing Stanford on the 30th and hope to have this problem solved... I will keep you posted. Good luck with your treatment and fingers & toes crossed you don't get a nasty headache !

    You are having IVIG on a Sat ? Cool !
    Thank You !
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Yes this infusion center is open on Sat and I am in the final stretch of 6-8 hour IVIG infusion. Have had zero side effects thus far but did have Solu Cortef (by choice) as one of my pre-meds b/c of my MCAS and will have 2 mg Decadron at the end as a headache preventative.

    But your case is totally different with history of fungal infections and it seems that you should be able to decline the steroid. I did 80 mg Solu Cortef (instead of 100 mg at first infusion) to see what I tolerate and next time will do 60 mg. So far all good.

    Are you still doing IVIG and RTX at the same time?
     
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  15. Rebecca2z

    Rebecca2z Paradise, Ca

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    @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 find a new place to infuse !

    Yes I do RTX and IVIG within the same week on one treatment, usually 4 days apart. I do IVIG every two weeks so no way to avoid the RTX and IVIG on one of the weeks.

    Oh did I remind you to pound down the water... Tee-hee ! Bottoms up girl ! :heart:
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Rebecca2z and am drinking water now!

    Am so sorry about the steroid issue and it sounds like it is worth switching infusion centers if you can. I can PM you my infusion center but it's so far from you, it's probably not realistic.
     
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  17. daisybell

    daisybell Senior Member

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    @Rebecca2z maybe your bigwig would be willing to liaise with Prof Edwards - given that he is so experienced in giving rituximab...?
     
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  18. Rebecca2z

    Rebecca2z Paradise, Ca

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

    Rebecca2z Paradise, Ca

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    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 doctor writing that order of no steroids and passing it on the my local doctor who will sign off on it for the local hospital.


    I remain hopeful that I will get this new order on Aug 30th !! Update soon and a positive one I hope ! The more fungus I clear up the better I am feeling, it is so awesome to feel this great !! Less fungus in my gut and I notice I am eating better and probably getting some very needed nutrition and wow this = energy !!!

    Life is good right at this moment ! It's been 3-4 weeks since any steroids or antibiotics. I just hope my liver & kidneys can hold out on the 6 Itraconazole I am on daily...

    Glad your are pounding down that water Ginger ! Keep it up
     
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  20. Rebecca2z

    Rebecca2z Paradise, Ca

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    @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 before he came into the room to see me, when he came thumping into my room he states " I agree with this, (slapping your articles on the table) and loudly proclaiming I don't want you having steroids as your primary condition is APECED ! " He further said it was the local hospital that gives me the RTX that was refusing to infuse me without steroids.

    SO my Stanford doctor wrote an even stronger letter to my local hospital who gives me the RTX, stating I must not be given steroids. IT WORKED ! I had my RTX last Thursday with no steroids. I received only tylonol and benadryl IV as premeds only.

    It has been about 5-6 months since I have had these mega rounds of steroids ( I was getting steroids with RTX and with my every other week IVIG) I had so many issues with fungus, worse than I have ever had in my life. I can tell you I am just now starting to feel more energy, I suspect my adrenals weren't working at all, (I am no doctor and don't know this for sure.) But what I do know is I am starting to feel like my old self. Each day I wake up I feel a little more energy.

    I have had for last 5 months the most amazing craving for salt, I have never eaten or craved salt, and I have been actually licking sea salt from the palm of my hand several times a day. I have been craving carbs and sugar, which doesn't help the fungus at all. These things are finally getting better but it has taken months. Now with last Thursday's RTX and no steroids I can honestly tell you I feel just amazing. I woke up this morning and said to my husband I feel so much better, I want to go have some fun. WOW what a change ! We are going to drive up to a higher elevation and play in the snow.

    I have such a love hate for steroids, they give you energy while on them but when taken away I am half dead and it takes me months to feel better. The crash off the steroids is so severe I was unable to enjoy the benefits of the RTX. But that is all in the past, I am rising up once again !

    I share all this in hopes that others don't ever give up and be your own advocate. You know when something is not right and you know when something is. Trust in yourself and realize doctors try to do the best they can- it takes a team, no one doctor can manage a complicated case. Get your help with a University School of Medicine and pick your doctors carefully.

    Hope to post my snow pictures later !!

    Thank you again @Jonathan Edwards - You rock !!
     
    Last edited: Dec 11, 2016
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