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mab thera

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15 years 3 months ago #6331 by emilygreensmith
mab thera was created by emilygreensmith
Hiya, sorry if this is a dumb question, but is Rituximab the same thing as Mab Thera? My haemo suggested it to me the other day, or rather said that I should choose between that or spleen-ectomy as my next course of treatment.

So far I have been leaning towards the mab thera, but he kind of billed it as a quick fix drug - one four week course of infusions and my problems would be over. Having read more of the posts here it seems that some people have to keep taking it indefinitely? Is this right?

Also I was just wondering what the side side effects are? Haemo said that there were little to no side effects, but to be honest it all seems a little too good to be true, except for the $16K price tag that is. :)

One more question, just wondering how many of you had to have bone marrow tests and if they are as bad as they are in my mind? Have to get one in a couple of weeks, and am a bit freaked at the thought of all of it, you know?

Anyway any answers appreciated :cheer:
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15 years 3 months ago #6334 by CindyL
Replied by CindyL on topic Re:mab thera
Hi Emily.

Can't help with the Rituxan questions as I'm still waiting to see if I will be approved to get it. But the two are one and the same. Yes, some people do have it more than once. Maybe some of them will chime in. On the other hand, I have had a splenectomy. There is no guarantee that will work. What else have you tried?

I've never had a bone marrow test; my hema didn't feel I needed one. One thing to remember is that everyone is different, so your reaction might not be the same as someone else's.

Good luck and keep us posted. What is your count?
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15 years 3 months ago #6335 by emilygreensmith
Replied by emilygreensmith on topic Re:mab thera
Hiya, I think last week's count was about 32k. I'll be getting another test tomorrow. Fingers crossed it will have some magic result that means I don't need the bone marrow biopsy. I think he wanted it to make sure that Imuran (or azathioprine or whatever the proper name for it is) hasn't stuffed my marrow too badly. He thinks it got in to my marrow when I was taking it and actually started causing low platelets rather than fixing them.

Other than that it's been different levels of pred, as well as mmmm.... something globulin.... an infusion of antibodies anyway. That was great, but just a quick boost when I was first diagnosed to get me out of danger.

I have been given the option of a spleenectomy or mab thera or steroids for ever. Woot! Spoiled for choice! But it's actually kind of nice to be given options tat may actually fix stuff rather than "here try some more of this drug, it may hold stuff for a little while".

Hmmm... must be some way around this bone marrow dealy. or, you know, to stop being such a chicken ;) gave birth without drugs, surely I can handle this?!
  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 3 months ago #6337 by Angel85
Replied by Angel85 on topic Re:mab thera
I had what was calld a twilight drug during my bone marrow biopsy as i just felt too nervous too have a local.

I thought even with a local and i couldn't feel pain, i'd still find it hard to keep still, so i was asleep for it and didn't feel a thing while it was being done.

It did hurt for a few days afterwards though and i couldn't sleep on the side it was done on for about a week after.

I don't think there is a way of getting out of having it done. If your Doctor feels you should have it done, then i think you should take his advise, otherwise whats the point of having a doctor to look after you.

I don't at all regret being alseep for it and i don't feel chicken at all for doing it that way, so don't feel bad if you feel you need to go that way.
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15 years 3 months ago #6341 by menicki
Replied by menicki on topic Re:mab thera
A bone marrow biopsy is NOT that bad!! I've had two done in the last couple of months. Basically you lie on your side, they numb up your leg with a local, and then they put in a needle that you don't even feel. They then drill into your bone, which you also don't really feel. All it really feels like is someone poking you with thier finger. For the split second that they pull out the marrow, there's a second of stinging that goes down your leg, but that's all it is, a split second. After that, you're all done.

I went through childbirth with no pain killers too. Trust me, if you can handle that, you can definitely handle this!! It sounds way scarier than it is! I was so terrified the first time I had myself completely worked up. Then the doctor said it was over, and I thought he'd barely begun! A trip to the dentist is worse to me than this! (My gums bleed like CRAZY at the dentist!)

I have the same options for treatment right now. We're waiting to see if insurance will approve the Rituxan. If not, it looks like I'll be getting a spleenectomy. THAT's what has me scared! Steroids were not good for me. They made my counts go up temporarily, but I'm one of those lucky ones where they turn me into a monster! I was so angry all the time, I just couldn't stay on them.

Hope you respond well to whatever treatment you get! And don't be scared about the biopsy! Its really nothing to it!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 3 months ago #6348 by Sandi
Replied by Sandi on topic Re:mab thera
Yes, Rituxan and Mabthera are the same thing. It is not a quick fix of any kind. First of all, it can take 4 to 12 weeks to work if a person responds. Of those that do respond, the average remission is a year. Some people get longer, some get less. Rituxan isn't a drug to use indefinitely; two or three rounds tops is average. The long term side effects are not known, so it's not good to over-use it.

Rituxan side effects are minimal for most, but there are some serious, rare side effects that can occur. Serum sickness, PML and reactivation of Hepatitis B (if one has had it before) are a few.

As for the bone marrow biopsy, I didn't think it was too bad. It was as Menicki described...20 minute procedure and I was out of there. I didn't have any meds other than the numbing shots.
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15 years 3 months ago #6360 by server
Replied by server on topic Re:mab thera
Hi Emily :)
Yea, like Sandi said, there is no permanent "fix" for ITP, only if your body changes it mind and starts to act "normal"! I've had Rituxan. Once a week for 4 weeks. I finished almost 5 weeks ago and I'm just in the past 2 weeks seeing a steady rise in my numbers. As for the bone marrow, as with ITP everyone is different. It was really no big deal for me. It was just like menicki and Sandi said. My husband had a harder time watching it being done then I had!

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen