Reaction to Rituximab

[Palmyra]

Hello to the group!

My daughter has been treated with Rituxan since her original diagnosis in 2006. Upon her last two infusions (she switched to the 2 infusion series last year,) she has been having post infusion reactions including nausea, chills, extreme fatigue...

I think she has been treated with RTX longer than anyone else on this site, and she was previously treated with biologics due to pre-existing Crohn's disease.

Has anyone else experienced unfavorable effects after infusing with RTX?

Many thanks,
Palmyra Jane

[Debbie C]

I was supposed to have 2 infusions 2 weeks apart from each other..but during the first infusion I was so cold they kept putting blankets on me (3)and towards the end--almost 6 hrs later it was time for the guy to go home so he pushed the iv faster. I was sick for almost a week. I would get very cold, shaky, tired all the time,so they refused to give me the other infusion. I really don't know if it was the medicine or the way it was given.But after about a week I was back to the way I was before ....I can't say normal that will never happen.

[Dryhill]

I had two infusions (two weeks apart) a month ago, and before starting the infusion the chemo nurses noticed that I had not signed a waiver form. Despite my saying "just give me a piece of paper and I will sign that I agree to go ahead" they had to get a consultant doctor to go through all the risks, this took over five minutes! The really nice bit was when the doctor said I could have a heart attack but not to worry as they had the crash cart standing by (pointing to it). At this point I began to wonder if I really did want to go ahead with treatment.

I was given two paracetamol tablets before the infusion to help stop any flu type symptoms and then an infusion of antihistamine to help combat allergic reaction. I was then monitored (blood preasure, temperature, oxygen saturation levels and verbally asked how I felt) every 30 minutes. While I had no problems at the time or since all these precautions does suggest that RTX is not safe for everyone.

Jim

[Palmyra]

Yes,

She is pre-treated w/ acetamenophen and diphenhydramine and receives solumedrol along with the infusion. Its just that she has been having these flu like symptoms several days after the past two infusions. I remember Sangye suggesting that she has a similar delayed difficulty w/ RTX infusions. Anyone else have similar delayed reactions?

I am concerned that she may be building antibodies to RTX, and it will no longer be effective for her.

Many thanks!

[Al]

....I am concerned that she may be building antibodies to RTX, and it will no longer be effective for her.
It is true, Jane, that rituxan can become less effective over time, but it is not because the body is building antibodies against it. (Rituxan is, in fact, synthetic antibodies.) Rather, the immune system is very Darwinian, and when a lot of B cells (the body's producers of all antibodies, including ANCA) die off because of binding with RTX, more B cells are "born" without the receptors for RTX, thereby limiting its effectiveness.

Al

[Palmyra]

Thanks so much Al, so my understanding of your statement would explain why she became symptomatic after only 4.5 months after her previous infusion. So, future B cells will not have receptors for RTX, and apoptosis will not occur. Are you aware of any new treatments coming down the drug pipeline? Is there any combination therapy that can mitigate this process? (She used to take methotrexate in combination w/ TNF alpha inhibitors, to improve efficacy)

And, are there possible reasons for why she has this immediate (within a few days of) post infusion reaction that causes flu like symptoms that you are aware of?

[Al]

Thanks so much Al, so my understanding of your statement would explain why she became symptomatic after only 4.5 months after her previous infusion. So, future B cells will not have receptors for RTX, and apoptosis will not occur. Are you aware of any new treatments coming down the drug pipeline? Is there any combination therapy that can mitigate this process? (She used to take methotrexate in combination w/ TNF alpha inhibitors, to improve efficacy)

And, are there possible reasons for why she has this immediate (within a few days of) post infusion reaction that causes flu like symptoms that you are aware of?Can't say for sure, Jane. Again, I have no personal experience with RTX. I can only note what I have heard from others, that these symptoms are somewhat rare, but certainly not unheard of. About other therapeutic regimens, I only know that a couple are being used experimentally in refractory cases, and that almost no one goes without prednisone. In theory, other treatments are possible. For instance, some biologics (or cobra venom!) might prevent NCGN (glomuleronephritis) that ravages kidney parts. Also, certain synthetic enzymes might bind with ANCA, preventing them from priming neutrophils. However, any treatment based on these ideas are years away at best. (I doubt that many doctors would have any idea how to prescribe cobra venom in any case!) TNF alpha inhibitors have been used with some success in treating RA, but have been disappointing with WG. This is an interesting topic to me, of course; I will post more if I learn more.

Al

[Palmyra]

Thanks Al. From previous research I have come to believe that 4 years of treatment w/ TNF alpha inhibitors to address her refractory Crohn's disease was what pushed my daughter's immune system over the edge and into Wegener's.

She is less than one week out from a Rituxan infusion and has now added green sputum to the flu-like symptoms. It may be time for her to go back up to Mayo. More later....

[Sangye]

Jane, I don't have a delayed reaction to rtx. It starts about an hour into the infusion. I get extremely pale and extremely weak. I can barely walk or even lift my arms. It starts to ease up about 5 days later, just in time for the next infusion. (I do 4 infusions) Each infusion makes me weaker and I bounce back less each time, so that by the end of the month I am barely able to function at all. It lasts for another 2 weeks-- about 6 weeks total.

I also feel that each time the rtx is working less and less. In June I'll be getting my 5th round.

Debra, shuddering chills are a very common normal reaction to rtx--not a reason to stop giving it. You really ought to get a Wegs specialist's opinion before allowing them to take rtx off your list of usable meds.

[Palmyra]

"This is an interesting topic to me, of course; I will post more if I learn more." ~Al...

So get with it Al! We need a cure smart man!:thumbsup:

[Debbie C]

The one that told me I couldn't have it anymore is the head rheumy and vasculitsis dr. at Cleveland Clinic.I go back to see him on the 23rd of next month.He's gonna be a that seminar in Indiana so maybe he'll come back with something new for me to try. I know the rtx was working because on the scan of my lungs afterwards the nodules on my left lung were gone.Maybe he'll let me try again..I'd rather go to that doc in n.z. that just asks what problems have you had !!!

[Jaha]

Palmyra,

Just finished 2txs of rtx




Just a heads up to all. I had my 1st 1000mg rtx infusion on Mar 1 at CC. I did have a slight reaction during the infusion a burning sensation in the roof of my mouth and they had to stop it and give me addition benadryl and then restarted it. Then I had a bigger reaction to it about 12hrs after the infusion. I woke up and I started coughing, couldn't breath,was shaking and had a fever of 102.5. I was able to pull out of it by taking 40 more mgs of preds, using my pred inhaler and taking tylenol. It took me about 5 days to recoup from that 1st one. My dr when I called her about it the next morning, seem surprised that I had this happen to me 12hrs later instead of during the infusion. She wanted to know if I wanted to cancell the next infusion, I said no because I really want remission. I then had my 2nd 1000mg infusion on the 15th and this time they told me to take tylenol and benadryl for 24 hrs after the infusion. They also gave me a extra dose of preds 60mgs after it was completed. It is Monday now and I am not feeling as drained as the 1st one made me. I thought telling you all about the tylenol and benadryl might help somebody not have to go thru a delayed reaction to rtx.


Jana



Copied from a previous post

[Debbie C]

I think if I would of had that kind of reaction..I would have been heading to the E.R. Did the second infusion help put you into remission ? What Dr. do u see up there? I'm going up April 23rd to see Dr. Hoffman.What other kinds of meds do they have u one sinse the othly thing I am on is 10mg. of preds.?

[Palmyra]

Unfortunately, that is not an unusual primary infusion reaction. From what I have very slowly learned (since 2006,), the slower the infusion rate/speed the better. Techs love to leave the building as they are used to working with less sensitive materials on less sensitive patients....I have yet to read posts on infusion reactions related to infusion push times, but I feel certain there is a time/causal relationship.

I do believe that my daughter was one of the first to be treated with RTX as a principal therapy beyond a very brief trial of methotrexate and pred. She has never received CTX (Yea!)....that was in 2006 when the RAVE trials were just underway, and she had the happy accident of seeing one of the RAVE trial principals as her primary doc (Ulrich Specks, MD...he is special). She is currently not responding to RTX nearly as well as she was originally, and is fighting opportunistic infection. It may be time to go back to the Mayo Vasculitis center, no?

More as we learn from recent local sputum cultures. If they do not yield firm results, off we go to Mayo.

Jane, mom to Alison... (Crohn's'99, Weg-06)

[Sangye]

The one that told me I couldn't have it anymore is the head rheumy and vasculitsis dr. at Cleveland Clinic.I go back to see him on the 23rd of next month.He's gonna be a that seminar in Indiana so maybe he'll come back with something new for me to try. I know the rtx was working because on the scan of my lungs afterwards the nodules on my left lung were gone.Maybe he'll let me try again..I'd rather go to that doc in n.z. that just asks what problems have you had !!!
I would definitely trust the CC doctor. There is probably more info that he based the decision on.

[Sangye]

Unfortunately, that is not an unusual primary infusion reaction. From what I have very slowly learned (since 2006,), the slower the infusion rate/speed the better. Techs love to leave the building as they are used to working with less sensitive materials on less sensitive patients....I have yet to read posts on infusion reactions related to infusion push times, but I feel certain there is a time/causal relationship.


Yikes, that's not a good infusion clinic! At the JHU clinic, there are always at least 2 nurses in the tiny room with all the patients. They are right in front of us, watching everything we do. If anyone has a reaction they know right away.

[pberggren1]

Yikes, that's not a good infusion clinic! At the JHU clinic, there are always at least 2 nurses in the tiny room with all the patients. They are right in front of us, watching everything we do. If anyone has a reaction they know right away.

That's the way it is here too. I was the first one in Saskatchewan to get rtx for Wegs. Now 2 other Rheumies are writing a paper on me as well.

[Jaha]

DebraC,

It was very stupid of me to not go to the ER and I was told that at my next infusion. They asked me how I knew what to do and I just used what I knew from going to the ER numerous times before for not being able to breath and high temps. They did monitor me very closely both times and did have to stop the 1st time because of burning in the roof of my mouth. I have both lungs,ears,sinse,joint pain and some nerve involvement, but the biggest in the lungs. I see Dr.Villa-Forte at CC since Sept 2010. I have been on mtx,immuran,ctx,cellcept and now these 2 txs of rxt. My current meds are 30mg preds,2000mg cellcept, bactrim mwf,symbicort,spiriva,actonel,omeprazole,vicodin,h ydrochlorothiazide,potassium, and calucium and multi-vitamins. Enough to chock a horse. I see my dr in 2months to do a Ct scan and see where we are, hopefully remission.
Jana

[Debbie C]

My gosh..you would think with all the meds that would be enough to kill anything that ails you !! Godd luck on yr next scan..I go Mondayfor my lungs and kidneys..soon I'll be glowing in the dark

[Sangye]

Jana, are you on rtx and Cellcept at the same time?

[Dryhill]

Yikes, that's not a good infusion clinic! At the JHU clinic, there are always at least 2 nurses in the tiny room with all the patients. They are right in front of us, watching everything we do. If anyone has a reaction they know right away.

There were four senior nurses present all day in the chemo unit and one was dedicated to monitoring me. Also so she dd not forget she had a kitchen timer which she set for fifteen minutes so I could never be overlooked for too long.

Jim

[Jaha]

Sangye,
Yes I was, I asked the dr if I should stop cellcept and she said no still take it along with the tx.
Jana

[Sangye]

Oh that's interesting, Jana. I'm going to ask Dr Seo about it at my next appt.

[me2]

I am on methotrexate and Rituxan at the same time. I am left in the room alone but I have a call button that gets me a nurse in less than five seconds. I actually like the quiet.

[Sangye]

Being on rtx and mtx at the same time isn't that unusual. Dr Seo told me it was an outdated practice as drs thought it was necessary to maintain remission. He said it's harmless, though.

I hadn't heard of someone on rtx and cellcept until Jana. They both target B cells.

[Al]

Being on rtx and mtx at the same time isn't that unusual. Dr Seo told me it was an outdated practice as drs thought it was necessary to maintain remission. He said it's harmless, though.

I hadn't heard of someone on rtx and cellcept until Jana. They both target B cells.

RTX and MMF (CellCept) work differently, so they may, in some circumstances, work together. MMF inhibits the enzyme IMP dehydrogenase, needed for both B and T cell proliferation. Rituxan is aimed solely at B Cells (actually, on the CD20 antigen on the surface of most B Cells). Inhibiting B cells does knock down ANCA production, though the entire process also requires certain T cells (CD117, significantly). Perhaps the two drugs can thus both be part of the solution. So far as I can tell, the combo is used pretty much exclusively with C-ANCA patients, which includes most with classic WG.

Al

[Al]

Maybe this is an okay thread (since I can't remember which thread is the main one on therapies of the future) to mention that there are several monoclonal antibodies now undergoing trials that, like RTX, target B cells CD 20 receptor. They don't do anything that RTX doesn't do, and are likely to be hideously expensive at first. But they may have different side effects, so can potentially be used where RTX is ineffective or dangerous. Does this qualify as news? Probably not, but there it is....

[Palmyra]

Anxiety today, as the daughter receives her second infusion of rtx in series. Her recovery from the previous infusion is not complete and was complicated by a bronchial infection. Pumping chemicals into an already fried immune system is a bit frightening.

So Al, as a nervous diversion, does your research show other target specific studies that involve genetic modification as opposed to biologic therapy? I know of previous clinical trials involving Etanercept (trade name Enbrel) that were terminated due to participant mortality. (Not a good subject for me to be diving into today, I guess) but it was a previously hopeful TNF alpha inhibitor.

[Sangye]

I hope things go well with Allison today. The hardest part for me when getting rtx infusions is going back each week. I'm in progressively worse shape each week.

[Palmyra]

Yes Sangye,

I read your recent description of how it knocks you out of order for about 6 weeks. Very sorry to hear it takes that much quality time out of your days.

How long do your series of four infusions usually last? More than six months of med induced remission I hope?

And to update, Alison has reported they are infusing more slowly today than previously, in hopes of minimizing post infusion discomforts.

[Sangye]

A set of 4 infusions lasts about 7 months for me but I have to tough it out to make it to a year. My B cells don't show a return but I become more symptomatic at around 7 months. Last year I couldn't make it to 12 months. I waved the white flag at 10 or 11 months.

Glad to hear they're trying something different with Allison's rtx today. I hope it works!

[Palmyra]

I think all they did was slow down the rate of infusion a bit. She reported feeling yucky on the way home. I will keep the group posted, as I feel that her initial favorable results to RTX are about to max out after a six+ year run :sad:
Alternate therapies are welcome!

[Debbie C]

Sangye
Instead of getting a infusion every week,why don'y they give them to you every 2 weeks? And I was wondering is rtx only given by infusion or can you get in pill form ?? I would that would be easier on the body then one big blast.

[Al]

Sangye
Instead of getting a infusion every week,why don'y they give them to you every 2 weeks? And I was wondering is rtx only given by infusion or can you get in pill form ?? I would that would be easier on the body then one big blast.Debra--RTX cannot be taken orally, for the simple reason that it is a large-molecule drug, and would get broken down into individual amino acids by the digestive system. Sorry!

Al

[Debbie C]

Of course not..that may make things to easy if you could just pop a pill

[Sangye]

We tried the 2 infusion protocol last year, hoping it would work as well and not knock me down as much. It was definitely easier (but by no means easy!), but it didn't work as well. I had to do a round of 4 within a few weeks.

[Palmyra]

Yep,

As all individuals react so differently to different treatments, it appears that will be the same story for this go round.

Six years of RTX therapy (and pred) only to address refractory disease, and after trial number four, for infusion two in series, the result is 'still feeling yucky'.

More later gang!

Jane, mom to Al, Crohn's '99, Weg'06

[Jaha]

I had 2 infusions of rtx,and it will be 3wks tomorrow from the last one. I'm not up to par yet and am wondering when I will feel the effects of tx. I feel better this last week. This week I am starting to taper off preds, going from 30mg to 25mg for 2wks,and so on until I get to 15mgs, then I have a CT of the lungs and see the doc. They never mentioned to me about maybe having to do it again in a few months. I hope that is not the case. I have been on everyother tx since Sept 2010 and am now on Cellcept. To all who have just completed there txs, I'm wishing the very best results possible.
Jana

[Sangye]

Jana, there aren't any hard and fast rules about repeating rtx. Some people need to repeat it regularly/on schedule and some can wait and see if the Wegs wakes up. It's trial and error. When I had my first round of rtx, we didn't know if I'd have to repeat it at all. Then we saw that the Wegs dog woke up at predictable times following rtx. For me, this means lung hemorrhage-- the worst and most difficult complication apart from Wegs affecting the central nervous system. Lung hemorrhage is not something that you can play around with.

I hope it works longer for you and gets you into a solid remission!

[Debbie C]

Sangye.. did your lungs start to hemorrhage after your first infusion ? I'm surprised you had so many more after that.

[Palmyra]

Just so I can share and get 'group think' feedback if anyone has a clue...

Alison had RTX infusion #2 in this series yesterday (she has been treated with RTX for nearly 6 years). She says the infusions now make her feel sick as she is heading home from the procedure, and reported chills, moderate to severe joint pain that came in waves coupled with a restless leg type symptom over night.

Odd, odd as she has not had problems like this in the past. :confused1:

As to any serious potential side effects, I don't really know what to advise her to look for. On to google?

[Dryhill]

Just so I can share and get 'group think' feedback if anyone has a clue...

Alison had RTX infusion #2 in this series yesterday (she has been treated with RTX for nearly 6 years). She says the infusions now make her feel sick as she is heading home from the procedure, and reported chills, moderate to severe joint pain that came in waves coupled with a restless leg type symptom over night.

Odd, odd as she has not had problems like this in the past. :confused1:

As to any serious potential side effects, I don't really know what to advise her to look for. On to google?

The chills is not very surprising as RTX can give flu like symptoms, which is one of the reasons my hopsital automatically issues RTX patrients with paracetamol.

Jim

[Palmyra]

Yes, on official inspection of the RTX website, the "common side effects of RTX" are:

Common side effects during Rituxan infusions include fever, headache, chills and shakes, nausea, itching, hives, cough, sneezing, throat irritation or tightness.

Other side effects with Rituxan include aching joints, upper respiratory tract infection, decreased blood cell counts, lung problems.

These are not all of the possible side effects with Rituxan. Tell your doctor about any side effect that bothers you or that does not go away.

I think that pretty much covers all w/ exception of PML

[Al]

Yes, on official inspection of the RTX website, the "common side effects of RTX" are....
I think that pretty much covers all w/ exception of PML

Uhm Jane, Please tell me that you are just noting PML as a boilerplate side effect of RTX--not that Alison has it. Yes...?

Al

[Palmyra]

Correct. Alison does not have it, God forbid! I think PML has been a very rare side effect. We heard from her specialist previously that virtually all of the reported cases of RTX/PML have occurred in those with more profound immunosuppression, and using multiple drugs ie., potent drug cocktails used to treat leukemia. That was from a conversation that took place nearly 3 years ago, so things may have changed in the interim.

[Al]

Correct. Alison does not have it, God forbid! I think PML has been a very rare side effect. We heard from her specialist previously that virtually all of the reported cases of RTX/PML have occurred in those with more profound immunosuppression, and using multiple drugs ie., potent drug cocktails used to treat leukemia. That was from a conversation that took place nearly 3 years ago, so things may have changed in the interim.For those who don't know: PML (Progressive multifocal leukoencephalopathy) is a blessedly rare side effect of hard-core immunosuppression. It comes about because of the JC (John Cunningham) virus--another of those microbes that inhabit most people (the book on it says 70-90 percent of adults worldwide). Like some of the others, it remains latent while the immune system is fully active. But when the cops are away, the bad guys come out to play. As I say, this is a rare thing which is fortunate: Once the virus is active, the prognosis is atrocious. Rituximab (rituxan) and several other -mabs list PML as a rare but life threatening side effect. Some medical authorities have suggested pre-screening for JCV before beginning rituximab, et al. (In this sense, I was "lucky" to "only" get shingles, since Varicella zoster is a leading viral cause of meningitis.) All this is by way of saying repeating that, in my view, immunosuppression is utterly barbaric. Would that we knew how to do better.

Al

[Palmyra]

Oh my...and all that Al said.

It is totally true for all that are being treated w/ general immunosuppression and the parallels that these treatments (now that we understand a bit more of their mechanics) are truly utterly barbaric, to use his words. :-) I have no idea if my daughter is JCV positive or not, and she has been treated at one of the best vasculitis centers in the USA, with many years on RTX. (It will be a question poised on the next visit).

More power to the DNA sequencing web misters out there that are happily mapping gene codes for those of us that look so anxiously to bigger answers and the power to deliver trigger point cures for these diseases.

She has endured a relatively good week, certainly when compared to the last, and is hoping for good results following this current infusion series.

All the best,
Jane

[Sangye]

The post-rtx chills are a classic side effect. Nurses who treat patients on rtx in the hospital know it well. One of our nuns is an RN and she said it can be horrible.

How much pred (solumedrol) are they giving her during the infusions, Jane?

[Palmyra]

Ah, Sangye,

We are suffering from the transitional prolonged adolecesent to chronic adult disease situation here (late!), and we are obviously not so evolved:mad1: I have been hovering in my helicopter Mom status for many years, and the good news is for the first time I can not answer a med dose question!! I do know that she receives the classic aceptomenophen/ solumedrol drip along w/ oral dyphenhydramine. Two days out from her most recent secondary infusion of RTX of two/series she is doing very well. We'll see what good effects that has on suppressing the WG beast over the next couple of months.

I made ready note that less than four infusions had not been of enough for you. She has only had the Weg beast roar once she reduced the RTX to two infusions rather than four.

[Al]

....More power to the DNA sequencing web misters out there that are happily mapping gene codes for those of us that look so anxiously to bigger answers and the power to deliver trigger point cures for these diseases.

She has endured a relatively good week, certainly when compared to the last, and is hoping for good results following this current infusion series.
May your daughter continue to "endure" good weeks and months and decades, Jane!

I am not so sure that DNA sequencing will, per se, be enough. In the case of WG, it is not the template part of DNA activity that is important, but the transcriptional part--those genes that are turned on or off at any given time. This is, by far, a tougher nut to crack. But "trigger point cures", as you put it, are decidedly better than the global whack-a-mole game that we have now.

(Now, Jane, I figure it to be a typo, rather than a Freudian slip, recording "web misters". But, er, hey, in this day and age...?)

Al

[Palmyra]

"The post-rtx chills are a classic side effect. Nurses who treat patients on rtx in the hospital know it well. One of our nuns is an RN and she said it can be horrible.

How much pred (solumedrol) are they giving her during the infusions, Jane?
~Sangye "

Good question Sangye. Have they boosted your IV solumedrol due to your own problems before RTX infusions? And if so, at what dose?

And to Al, haaa!:rolleyes1: yes it very well may have been Freudian, but "meister/mister"...I am a notoriously horrible speller! Alison has been on whack-a-mole drugs for a very long time...at least the moles are getting smaller and the hammer is more target specific!

[Sangye]

They give me 100 mg solumedrol. (That's the highest dose given unless one is in critical care and needs pulse steroids.) Dr Seo said he'd be willing to drop it down to 80 mg but wouldn't go lower. Given that it's my only option, I don't want to mess with it and risk a reaction.

High dose pred greatly weakens me. If I were only weak for a day or two after rtx infusions I'd chalk it up to the pred. But it persists, so we know it's the rtx dogging me.

[pberggren1]

I got 500mg of solumedrol at each rtx infusion.

[delorisdoe]

that is because you are a freak.
:flapper:

[pberggren1]

that is because you are a freak.
:flapper:

and don't forget hot mess........lol.

[delorisdoe]

Ya that too.

[pberggren1]

You never fail to crack me up Leigh. :lol:

[drz]

I got 500mg of solumedrol at each rtx infusion.

And probably a great high at those dosages too????:flapper::flapper::flapper:

[Sangye]

I can't imagine your doctor giving you 500mg solumedrol with rtx, Phil. Are you sure about that?

[me2]

I too get 100 mg solumedrol with rtx - I want what Phil is having. It certainly sounds like a lot but I have received as much as 1000 mg . Yes that is not a typo. Twice in my life I have received 1000 mg three days in a row. Needless to say I was extremely ill and it was desperate measures. . Measures that worked I might add. I vividly remember being pulled from deaths door. I had CNS involvement- and lived to tell the tale

Now in Phils case they might be doing it just to mess with him, I know I would if I was his nurse.
Phil if you are indeed recieving that much how does it make you feel? The large doses I took were done at a time where I was so sick I can't tell what was what.

[pberggren1]

I can't imagine your doctor giving you 500mg solumedrol with rtx, Phil. Are you sure about that?

100% sure. He said he wanted to go by the study.

[pberggren1]

I just feel tired during the infusion but after it is done I feel fine.

[Sangye]

I had 1,000 mg solumedrol for 3 days in a row when I was first dx'ed, due to massive lung hemorrhage.

I asked Dr Seo once why they used such a high dose in the RAVE trial. He said it was because they had no idea how people would do with rtx, so they went with the highest dose to be on the safe side. He said they've learned that extreme dose wasn't necessary. I trust your doc to know what's best for you, Phil. I just don't want others to think that they should be getting such a high dose, since it's very damaging.

[pberggren1]

I totally understand. I even tried to negotiate with my doc about getting a lower dose. He said next time he would be willing to go lower.