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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Questions for anyone who has tried Rituximab/Mabthera

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl — I just read this. Been working, which takes 101% of my energy (meaning more than I have), so no reading the forum ... I do hope you got your "expedited" decision, and hope even harder that it was in your favor! The insurance companies try their hardest to kill us with stress! Rooting for you.

That is great news that you are able to work more and hoping you are feeling better! The "expedited" decision never happened (as I suspected) and my doctor and I have still not heard anything yet. Usually once they tell you they are going to expedite, it takes three business days (not one) so it is possible we could hear something tomorrow but am still not counting on it. But at least I finally have confirmation that my insurance has received the Auth and everything is on the correct form and they are deliberating. I don't think there is anything more that I can do until we receive the first denial (which is what I am expecting) and then we can appeal.
 

Gingergrrl

Senior Member
Messages
16,171
I wanted to post an update that my insurance has officially denied me the Ritux :mad::cry::bang-head: and now we start the first appeal. I can't say I am actually surprised and it is a relief to finally know something vs. be in limbo. I think we have a decent shot at the appeal level (vs. the initial level where I was also denied IVIG but then we got it approved in the appeal process and I did it for ten months). If it takes too long, we will ask for additional IVIG in the interim b/c am very afraid of losing all of the progress that I have gained. But if I know I can continue with IVIG while we wait, it is not as big of a deal. Am still hopeful (not sure why) and will update this thread if I learn anything new.
 

Gingergrrl

Senior Member
Messages
16,171
I'm so sorry @Gingergrrl I've been following your progress and really hoped you'd get approved for rituxan swiftly. I have my fingers crossed you'll prevail in your appeal.

Thanks, Kristen, and I had wished it would be quick, too, but knew in my heart that it would not be. My insurance actually mailed the denial letter to my doc (vs. fax it) so he will not even receive it until next week and I only know b/c I called them. They refused to tell me why it was denied (said it's in the letter) and refused to give me the ph# that my doctor would call to start the appeal. Now it is a holiday weekend so nothing will happen until next week. Am a little less hopeful about the whole thing today but am not giving up the fight.

I just got word last week that my insurance approved IVIG, and I've been so encouraged by your progress with it. Here's hoping you can continue that as well.

That is great news that your insurance approved the IVIG! We didn't ask for additional IVIG yet b/c we were hoping the Ritux would get approved. But if it looks like it is really going to take a while, we are going to request additional IVIG. Even though I am still very ill, I have made a lot of progress, and do not want to start going backwards.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
My insurance actually mailed the denial letter to my doc (vs. fax it) so he will not even receive it until next week and I only know b/c I called them. They refused to tell me why it was denied (said it's in the letter) and refused to give me the ph# that my doctor would call to start the appeal

Oh, aargh! I hate insurance companies! They are so slimy. A few of their denial letters that I got this year while awaiting approval (and appealing) for my IVIG (that I'd received the entire previous year—through a different insurance co) said something like, "the reason for denial is in a letter to your doctor written so he can understand it..." Unbelievably condescending and arrogant! I'm still amazed that they approved it at all!

Wishing you all the luck and strength you need to get what you need to get better.
 

Gingergrrl

Senior Member
Messages
16,171
I'm still amazed that they approved it at all!

I am a bit amazed that they covered ten months of IVIG for me as well. Right now am in complete limbo with this Ritux appeal, but am trying to have faith that I will get more IVIG in the interim, so I do not go backwards and lose the progress that I have made. The ideal plan was to reduce the IVIG interval from 3 wks to 4 wks to 6 wks vs. just to abruptly stop it (but this is in an ideal world LOL).

Wishing you all the luck and strength you need to get what you need to get better.

Thank you so much VL, and I really appreciate it. I will update this thread if anything changes.
 

Gingergrrl

Senior Member
Messages
16,171
This treatment for what I hear can cause the worsening, I do not know if it is like this or not

It definitely can but I am at the point that I feel the benefits outweigh the risks and I want the opportunity to try it. I was told by multiple doctors and others that IVIG was too risky for me yet I found a way to do it and it has given me a good portion of my life back. I am hoping that Ritux can give me back the remaining portion.
 

Gingergrrl

Senior Member
Messages
16,171
I wanted to post an update that my doctor just e-mailed me that I was approved for additional IVIG and he feels hopeful that I will be approved for Rituximab (but this part has not happened yet). I am so thrilled that I can do additional IVIG and will not lose the progress I have made. My next IVIG cycle would have been today but if it is delayed by one week, it is not a big deal. Am so happy/relieved to get this news!

Am tagging a few people to update them but no need for anyone to reply @Revel @zzz @Sancar @Misfit Toy @Jesse2233 @PatJ @valentinelynx @justy @antherder @Evangeline @debc (and everyone else who was so supportive with PM's, information, and prayers for me).
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl -such great news Ginger!!! So glad. You deserve continued improvement.

Thanks, MT, and going in circles w/my insurance who confirmed that more IVIG has been approved but they can't fax the Auth to me or to Infusion Center, only to my doc and I cannot schedule the appts without this :bang-head:.

They said they faxed it yesterday to my doc but he never got it so I asked them to please fax again and also to my MCAS doc (who is prescribing/connected to infusion center). They would not tell me the # of grams approved nor the frequency so it's possible I've only been approved for one more cycle. But if I can get the IVIG sorted out/scheduled next week, and then actually get Ritux approved, (now for July vs. June) then this is still okay. They really do not make it easy for the patient!

Edit: After 3-4 more calls, it looks like I have been approved for six more months of IVIG (but I have not seen it in writing yet). I was able to get the Auth sent to Infusion Center so hoping to reach them Mon and still schedule for next week. I literally spent the entire day on this but it was worth it.
 
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Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Gingergrrl -as it turns out, Anne Maitland is not seeing new patients. ;-(.

Do you have recommendations on diets or a diet to proceed by for low histamine? There are so many.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl -as it turns out, Anne Maitland is not seeing new patients. ;-(. Do you have recommendations on diets or a diet to proceed by for low histamine? There are so many.

MT, Am so sorry to hear that Dr. Maitland is not taking new patients and my MCAS doctor is not either. There are so few of them in the entire country, it is really tragic IMO. The diet that I followed was called the "SIGHI" diet from Switzerland and you should be able to find their main website if you Google it and it has info/links in English to the diet. Back in 2015 it was all available for free but I believe now you have to pay a fee to join for a year. Let me know if you cannot find it.

Also, I'm not sure if you saw my other thread but I was approved for Rituximab and for six more months of IVIG! If you did see it, apologies for repeating it here!
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Also, I'm not sure if you saw my other thread but I was approved for Rituximab and for six more months of IVIG! If you did see it, apologies for repeating it here!

I did and I am so happy. I think I responded!

There is someone in Chicago who is claiming to be a mast cell specialist but interestingly, she is an endocrinologist and specializes in thyroid. How weird is that? But I don't think I can travel all the way to Chicago and it's all out of pocket. IS your doc out of pocket? This disease to me seems to be the most expensive. Between the meds, etc.

I had garlic on scallops tonight and have had a massive reaction. I have a horrible migraine. So sometimes I can eat things and other times I can't.

I will look up this diet and thank you, GG. I am so happy you were approved for both. Miracles!!!!!
 

Gingergrrl

Senior Member
Messages
16,171
There is someone in Chicago who is claiming to be a mast cell specialist but interestingly, she is an endocrinologist and specializes in thyroid. How weird is that? But I don't think I can travel all the way to Chicago and it's all out of pocket. IS your doc out of pocket? This disease to me seems to be the most expensive. Between the meds, etc.

Do you know the name of the doc in Chicago? Is she on the list of docs from TMS (Masto Society)? You could ask about her on the Masto boards on FB to see what people know. If she really was an MCAS doc AND specialized in thyroid, she would be perfect for you!

My MCAS doc actually takes my insurance which is amazing so my office visits are only my $40 co-pay. He is actually by far the cheapest of all the docs I have seen since my illness began. I started with a naturopath who was purely out of pocket and my main doc, Endo, etc, are all private pay. Yet my MCAS doc takes my insurance... go figure!
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Gingergrrl -She is on the mast cell list. It's hard to explain, but I can't go to her. She has been on the boards on FB posting as a patient and a doctor. She has MCAS. So, she posts as someone with the disease and then posts as "Oh, I can help you, give my office a call." It's a major red flag. She is too expensive and I don't want the travel.
 

Gingergrrl

Senior Member
Messages
16,171
Just replied to your PM and forget this doctor after all those red flags and you will find another way. Don't lose hope.