2 vs. 4 RTX Infusions - Thoughts?

[aewaustin]

Well I finished my CTX last month and now am going to do RTX because I still have symptoms and we want to get it fully into remission. Right now the plan is to do 4 weekly infusions for 4 weeks, but due to work I would like to try the 2 bi-weekly infusions twice. Any thoughts on this?

Thanks!

Anna

[pberggren1]

I would personally go for the 4 infusions because I have found that people do better on 4 vs 2.

[Elena]

I'm doing the 2 infusions, it works great for me. Never tried 4 though, so might be that works as well.

[pberggren1]

How are you feeling today Elena?

[Elena]

I'm feeling good, still got that stupid rash though. Thanks for asking.
Going to see the doc tomorrow and probably take some blood tests then or on wednesday. Hopefully it's nothing to worry about..

[pberggren1]

Good to hear. Hopefully the doc will have an answer for you.

[pwc51]

In my case I had the 2 infusion treatment in the first instance - it worked a like a dream. I have been advised that should / if we need to repeat the treatment the 4 infusion method will be used. I am not sure why the change but I get the impression that over here the 4 infusion method is now the preferred treatment.

[Dryhill]

In my case I had the 2 infusion treatment in the first instance - it worked a like a dream. I have been advised that should / if we need to repeat the treatment the 4 infusion method will be used. I am not sure why the change but I get the impression that over here the 4 infusion method is now the preferred treatment.

Peter and I are treated by the same doctor at the same hospital and I know that is how our doctor wanted to treat me. Today I have learnt that the pen pushers/accountants have decided that my treaytment should be by the two infusion method.

Jim

[Sangye]

Anna, this is not something you should be deciding on your own (or with input from the group). Your doctor should be deciding this based on research and your unique case.

In general, the 2- infusion treatment has become the preferred protocol for people who aren't having severe disease activity. However, if you're quite overweight and have moderate to severe disease activity you may need to do the 4 infusion protocol because you will get more rtx.

[me2]

Sangye I may respectfully disagree with you on this. I think Anna is right to question , be involved and make the decision of how many infusions to treat her condition. There are several elements of philosophy that cause me to say this.

--Purely from personal experience I must say that when there has been any room for question as to the course of action for my treatment I have learned to always go with my own sense, my own idea of what would be best. Is this because I am always right? No. In these open situations am I more often right than the doc? Maybe - I think so.

Most importantly, in those cases where it later becomes apparent that we should have maybe tried something else I have always been more at peace with having made the decision myself than simply letting myself be passive and do whatever the doc wanted. Simply put, I prefer to suffer my own mistakes (and trust me, I've got some big ones) than to suffer the mistakes of others. NOTHING feels worse than to follow the doctors advice, have things get worse , and think " I KNEW we should have done B instead of A".

Let me be clear that I am talking about a specific scenario where more than one choice could be the best one. (Which unfortunatly covers a high percentage of WG treatment)
Also I am talking about gathering information and going with my own gut. There have been cases where I have no extra info, and no particular gut , in which case I go with what the doc wants to do - still this is my choice and I don't blame him/her if things go south.

-- Also, I myself am filled with questions about how to decide the frequency and dosage of Rituxan. As far as I know there is not a definative study or article that lays it all out. As near as I can determine the docs are still trying to figure this out, much like the early days of Cytoxan
I think they are trying to figure out how LITTLE is safe. I emboldonize (I like making up words) LITTLE because usually we think about drugs in terms of how MUCH is safe. In this case, as we know all too well, the disease is so darned dangerous that we go all out nuclear with treatment and try and figure out later if we could have done less and still gotten a good result.

I was treated with Cytoxan over thirty years ago and back then LOTS of Cytoxan was used. Today, it has been fine tuned to much less (perhaps to much less, but thats another topic)

When Rituxan was first used in this country 4 infusions was THE protocol. It was the protocol I began with.
When I next went for treatment my doc scheduled me for 2 infusions. I asked 'Whats up with the 2?" . I was told they were getting good results with using 2 instead of 4. He referred to the 4 as "British protocol" and 2 as "American protocol".

I told him I was very glad to hear that now please schedule me for 4. He respected my wish and signed me up for 4.
My condition did not improve signficantly but at least I knew it was not from experimenting with half dosages.
In terms of 'medical time' they have very little experience with any Rituxan dosage protocol. This leaves the question much more open to guess work- at least as far as I can tell.

To throw another wrench into this question let me add that treatment has now evolved into giving 6 month 'booster' shots of Rituxan because of the high rate of relapse beyond that time frame. The last 'booster' I had my doc only gave me ONE infusion.
I ask "Whats up with that?" My doc tells me he knows a guy in England who has been treating his patients this way and getting good results. "Great. Whats his name?"

Doc says he can't remember his name. Great, that means I can't look for information using his name. I looked for information anyway - in vain.
My next visit I trying and pin him down even more. He assures me a significant number of patients have been treated for a number of years this way with good results- but still won't tell me who is using this protocol.

In this case I know I can insist upon 2 treatments if I want. I'll switch docs if I have to , I will not do treatment I don't believe in. What I also know is the reason why they would be trying to scale back treatments. NEW drugs like Rituxan are more dangerous than old drugs. Caution of over treatment should be beyond the norm. The drug has very little track record yet.

WG is dangerous too, so its the good ole rock and a hard place where we WG people spend our summer vacations.
I decide in this case to go with what the doc wants to do. I have some track record with him and I think he has good instincts.
I know he cannot explain every decision to my satisfaction because some of this is based on instinct. Docs are loath to use the word or even allude to it and I understand that.

So , I have been long winded on this. One reason is that this is an evolving subject in my mind and I would love to hear what others have been able to learn. As far as I know there is not much , or anything , written about this cutting edge of refining Rituxan treatment.
Our questions and input as patients are part of how these questions will get answered. Our silence makes us into little more than lab rats. (rats generally don't have insurance so that is why I hedged the statement a bit)

As a foot note- you can tell I am feeling a bit frisky this morning. This - five months after my single booster shot of Rituxan. I am scheduled for another next month. It has been very slow going , very slow to call it improvement and yet I must say I am improved. I had no dramatic improvement when I got my 4 infusions so what am I to think?

I wish I was privy to the discussions doctors are having on this subject.

[aewaustin]

Thanks everyone and especially like your post Me2, thanks for taking the time to write it :) Totally agree with your perspective, due to the lack of research we really do have to go with what our gut tells us, we know our body the best. When I started CTX last August they (my doc and dr. langford) wanted to do 50mg and I knew that my disease was more active than that so I asked to start at the full dose of 125mg, which was the right choice. I think my doc was surprised at how much CTX was needed to get me more under control, my doctor now really does let me go with my gut because the tests just do not accurately show my disease (I have never been positive for ANCA or had an abnormal sed).

For what it is worth, part of my decision to go with 2 vs 4 is based on the fact that with one dose last time I had a huge change for the better after just a few days, and after the second I was almost normal. I just don't think that I saw much improvement from 2 to 3... BUT I would do it the same way again for that first round to help get the Wegs under control, the only reason I personally am thinking about 2 instead of 4 is that I have just finished 5 1/2 months of CTX and am on Imuran...

And still curious to hear more thoughts on this! Thanks to everyone for their perspective, really appreciate it!

[pberggren1]

Tough choices for sure. One just has to make the best decision they can with their doc and others involved. I've heard of doing the one infusion every six months as well. My doc said he would be more comfortable with doing the 4 infusions. He has only ever done the 4 infusions.

[Chris G]

Hi Anne!

I had 2 rtx infusions last May, and 2 rtx infusions in December. I felt weggie-great from Mid-June to late November, and was able to taper pred from 25mg to 10mg. But late November, the wheels fell off.........the 1st round of rtx "ran out", for lack of a better term, before the scheduled December infusions. I had a multitude of mild/moderate symptoms creap back in, and bad fatigue, which pretty much had me wiped out for the whole month of Dec, and into Jan.

Today I saw my docs, and they said, that perhaps if we had done the 4 infusion protocol, I'd have made it the full 6 months or longer. So, we are now considering whether to do 2 or 4, the next time around.......yes, a 3rd round is coming for me.

I play a full role in deciding what to do next. If they suggest something I don't like, we discuss it. Now that I've tried the 2 infusion protocol, I would be willing to try 4 next time, knowing what I know. Meanwhile, we are adding cellcept to my daily regimen. I'm not thrilled to add another drug, but I agreed to it. I think it's the right thing to do, because the wg is not under control - each time I decrease pred, I get some sort of protest from the wg dog. Most recently, time it was ear symptoms, headaches, knee pain, and more fatigue. We also hope it will put the dog to sleep, so that I can get to my next scheduled rtx without another hiccup.

ANYHOW, what I understand from my visit with the docs today, is that they try the 2 round protocol when they feel that the disease is mild to moderate, and they use the 4 round protocol when the disease is more severe, or in cases like mine, when the wg is just plain STUBBORN. If I recall correctly, yours is pretty subborn too.

[aewaustin]

Chris,

Thanks for the info. It really is interesting to hear how others have done RTX. Very curious to see what comes of the chat with my doc. Mine, I am hoping, is not so much stubborn as it is really hard to tame initially. From 1994 to Dec 2010 I did not have to take any meds for it, but then it blew up. Am hoping that after doing the same thing I did last time, plus RTX, that it will go back into remission for a good long while :)

Just as an fyi, my doctor is planning on doing RTX every six months for years to come, so not surprised that you have a 3rd round coming.

Anna

[freakyschizogirl]

When Rituxan was first used in this country 4 infusions was THE protocol. It was the protocol I began with.
When I next went for treatment my doc scheduled me for 2 infusions. I asked 'Whats up with the 2?" . I was told they were getting good results with using 2 instead of 4. He referred to the 4 as "British protocol" and 2 as "American protocol".




Glad to know i am a Brit getting the American Protocol!
I am hoping that 2 is enough for me though i did research before my infusions were given and found people who where weightier got 4 doses instead of 2. I'll know next week if 2 was enough.

I am another medical rebel and constantly question my docs. I stayed silent for too long before diganosis and deeply regret doing so. We gotta keep these doctors on their feet. No one cares more about your health than you do. So my advice is do your research and fight your corner.

[me2]

"Glad to know i am a Brit getting the American Protocol!"

Lets hope it works no matter what you 'col it! ! I like your fighting spirit Freaky. It seems to be something we get along with the WG . That statement was made to me at least a couple of years ago - and by one doctor. I don't know what others would say today.
I'm learning a lot in this thread , thanks to everyone contributing. Some of you have world class WG doctors working on your case and I think you tend to hear more directly what the current thinking is. I think my WG doc is very well informed but is somewhat hesitant to talk to me like a colleague. My primary guy knows me from thirty some years ago when I first saw him with WG and has learned to trust me. He talks to me like a colleague, unfortunatly he does not keep in the loop on the latest WG stuff. He has moved on to other interests. He worked with Anthony Fauci way back when so he is no slouch as doctors go. He has told me he is not 'up' on WG treatment. Effectively telling me to rely on other doctors for up to date info and also to rely on myself to keep up to date. He has always supported me in being self informed.

Phil- Do you have any more info you could share on what you heard about the single dose protocol like I am recieving. It appears to be a relatively new idea as not many here are doing it.

Another question I would like to pose to any willing to dive into it is IF dosage (1 or 2 or 4) of Rituxan is matched to disease severity (a fairly new concept to me) then for those of us with very serious illness (like on my cerebellum etc) and few to no markers (I am 'ANCA useless') our personal assessment and input becomes VERY important. Our understanding of the dosages and how they match up to the severity of our situation becomes VERY important. Achieving dialogue with our doctor becomes very important. And if our doctor does not come up to speed to stand up for ourselves and what we believe our situation to be.

I want to learn a lot more about this subject. I hope there is more input , I know we have some fine minds and people with experience , like Sangye, who could shed some more light on this subject.

I am still unsure about the specifics of Rituxan treatment. In other threads I have read that a single treatment takes out only a small percentage of circulating B cells. I think it is important that I understand this. Can anyone suggest somewhere that I could read up on the specifics of Rituxan effects?
I do know I was told at some point, by someone, that the scientific community was surprised that Rituxan treatment and the subsequent depletion of B cells did not make people more susceptable to infection than it does.

[Dryhill]

To throw another wrench into this question let me add that treatment has now evolved into giving 6 month 'booster' shots of Rituxan because of the high rate of relapse beyond that time frame. The last 'booster' I had my doc only gave me ONE infusion.
I ask "Whats up with that?" My doc tells me he knows a guy in England who has been treating his patients this way and getting good results. "Great. Whats his name?"

Doc says he can't remember his name. Great, that means I can't look for information using his name. I looked for information anyway - in vain. My next visit I trying and pin him down even more. He assures me a significant number of patients have been treated for a number of years this way with good results- but still won't tell me who is using this protocol.

I know that Addenbrooks Hospital in Cambridge, England uses the 6 month method. Perhaps now you might be able to find the information you want.

Jim

[Dryhill]

[QUOTE=freakyschizogirl;54609] ........ found people who where weightier got 4 doses instead of 2. I'll know next week if 2 was enough. /QUOTE]


That may be why my doctor wanted to give me four doses, but the powers that be decided two will be enough. Or perhaps they do not think twenty stone (280 pounds or 38 kilos) to be overweight!

Jim

[Chris G]

That may be why my doctor wanted to give me four doses, but the powers that be decided two will be enough. Or perhaps they do not think twenty stone (280 pounds or 38 kilos) to be overweight!

I think 280 pounds is a good argument in favor of the 4 dose protocol. Have your docs argued that yet?

[aewaustin]

I talked to my doc this afternoon to propose the 2 over 4 and she is going to email Dr. Langford about it, so very curious to hear what they come back with. Will let ya'll know :)

[me2]

Thanks aewaustin. If it were me I would insist on an explanation along with the decision.

[aewaustin]

me2 I will, but I totally trust whatever Dr. Langford says, she is one of the top Wegs docs so even if this is her personal preference I would go with that decision. I overrode them on the CTX because I knew it was the right thing, and it was. With RTX I think that the 2 would be ok for me for where I am now, but I don't have enough of a feel for it to dispute what she says and I think that 4 is probably playing things safer IMHO. I think what they are going to come back with is that X is better because that is what she believes in. There just are not enough studies out to point to one over another I think... But either way I will post what I hear and the explanation I get :)

[Sangye]

From your initial post it sounded like your doctor was not explaining anything or guiding a decision, just sort of leaving it all up to you. That's the reason for my answer. It sounds crazy, but we have had that happen to many members whose doctors lack expertise, and they put the decision completely on the patient.

It is absolutely necessary for you to be involved in the decision making. I have always stressed that in my posts. I don't know how people misinterpreted what I said as going belly up and letting the doctor make every decision.

[Jaha]

My doctor at CC works with Dr Langsford. She is having me do the 2 RTX instead of 4 RTX, she stated that they are having great results from the 2 infusions. I'm in the middle of a flare and have new growth of WG in the lungs. I have been on MTX,Imuran,CTX and now Cellcept since Sept 2010,there has been inprovement in some of the sites in my lungs,but not enough. I have had to up my preds from 10mg to 30mg in the last month, because of a great increase in inflammation and all over joint pain. I waiting to be scheduled because of insurance issues. I've been trying to study about side effects and wondering how long it will take to feel maybe normal. Does anybody have any comments on how it has made you feel right after the infusions? Just kind of worrisome about how long I might be down. Thanks for any info.
Jana

[freakyschizogirl]

Jaha - after the first infusion i felt tired and warn out on the day but other than that no adverse reactions.

After the second i felt really very tired and took a week off work to rest. Glad i did.

My involvement is sinuses and i havent seen much improvement to my symptoms and dont feel much different in myself apart from i bruise more easily these days.

[aewaustin]

Sangye - Well my doctor wanted me to do the 4 because that has been standard, but I thought about the 2 and wanted to research some before I brought that up to her.

Jaha - Good info! I really want the 2 to be my protocol, if it works, just makes life easier with work if I am doing it every six months. And after the first one I was really tired, but after the other three I went walking three miles after (they were nice sunny days and was so excited to be feeling better). Not sure if I am normal, probably not, but I had amazing results just within 24 hours and within a week it was life changing. I could barely function and had no appetite before, and had only driven about 1/4 mile from home for the two weeks before the RTX. The day after I wanted pizza and two days after I went to three stores shopping. A week after I went from only showering every few days because it was too much effort to running the majority of 3 miles, I was a runner/triathlete before getting sick. So I love RTX, but I just don't think that my results were normal so don't get too excited.

[Kami]

Hello! I had 4 every Wednesday in the Month of May 2011. My doc wants me to do another round sometime not sure if it will be 2 or 4. I felt run down the day of the infusion and the day after but other than that I was fine. I am also on 20 mg MXT weekly, off of Pred just recently.

My doctor always tells me what my options are and then asks how I feel about them. He lets me be part of my treatment. I trust him and feel that he is genuinely looking out for my best interest and safety. He coordinates with many different departments and he also asks questions which I find quite refreshing, he doesn't pretend to know everything. When I tell him something is bothering me he investigates and doesn't just ignore it or tell me that I am wrong.

I feel the best part of my treatment is having the great people working to not only save my life but to give me the best quality of life while living with WG. I think I went for over 10 years without being diagnosed so this is very important to me to have people that listen. The best advice I can give anyone is that if you don't feel your "team" is working for you find a new one! :)

I read somewhere, and I am trying to find where, that 2 infusions were Mayo's preference and 4 was either Clevelands or Chapel Hill but I can't remember which. I will try to find that article and pass along it was interesting. I do not think that they really know what is best and on top of that everyone is different in how they respond.

As for the safety of the Rituxan my Hemotologist told me he has been using Rituxan for many many years for blood diseases and has never seen any bad long term side effects from it, he feels that it is a good thing for me and that I shouldn't worry about the future, not like Cytoxan.

Hope everyone is having a great day today!! :) Take care...........

[Sangye]

And after the first one I was really tired, but after the other three I went walking three miles after (they were nice sunny days and was so excited to be feeling better). Not sure if I am normal, probably not, but I had amazing results just within 24 hours and within a week it was life changing. I could barely function and had no appetite before, and had only driven about 1/4 mile from home for the two weeks before the RTX. The day after I wanted pizza and two days after I went to three stores shopping. A week after I went from only showering every few days because it was too much effort to running the majority of 3 miles,
I cannot even fathom being like this after rtx! I tell you, I totally got the short straw when it comes to handling the meds. Ctx made me weaker by the day (because it was destroying my bone marrow) and rtx is like a reverse blood transfusion.

[KathyB]

I've just been thru one regiment -- 4x4. Next month (6 months after dx), I'll be taking Rtx treatments 2x2 based on current trends and usage. (This matches with I've read online and heard from many of you). I was very tired the day of infusion and probably the day after as well. But after the 4 weeks, I felt good except for the crazy side effects of the high dose of prednisone. However, all the docs were not very surprised that I'd contracted pneumonia just a couple of weeks after my last treatment. Seems as though I was most susceptible at that time. Not sure I totally understood, but filed it away for "beware" next time. We will see in a few weeks.

[aewaustin]

Well I had my first iv today, of four... Dr. Langford said that the 4 is preferred over 2 because there is just not enough research to show that 2 is as effective. Also insurance companies cover 4 and my doc said they did not want to risk being turned down. This is all my impression of what the doc said, but she said it more eloquently with a few more facts. So I am doing four. I got home and am finishing my work day, don't feel any better/worse than other days so that is good, but hoping in a week or so I will start feeling better than I have in awhile. Thanks everyone for sharing! So appreciate it :)

[aewaustin]

Oh and the only real side effect I had from RTX was crazy bad night sweats, so getting an extra pair of pj's on my bed just in case they come this round as well. Just info for those that are starting RTX.

[Sangye]

I get bad sweats the evening of each rtx treatment. I've found if I go straight to bed for a couple of hours when I get home, the sweats don't hit as bad. If I stay up and tough out the weakness, the sweats, chills and shuddering are awful.

[me2]

Wow, finally able to get back on the site. I don't see others complaining so it must be just me and my computer with issues.

I'm so glad to see lots of discussion going on on this subject.

But I think I need to to back up to Sangyes question about her being misunderstood. I think I may be the leader of the misunderstanding.
Hi Sangye,
Why aren't there emoticons on this site you could use to club me over the head? Oh well, its not a perfect world.
I'm sorry I read your meaning wrong. Let me show you my thought process - flawed though it may be.

aewaustin asked for ideas about different Rituxan protocols and you replied "Anna, this is not something you should be deciding on your own (or with input from the group). Your doctor should be deciding this based on research and your unique case. "

This sounded to me like you were saying she should not decided this on her own or seek advice from the group but that her doctor should be deciding. The phrase “your doctor should be deciding this” is what lead me in that direction.

My point was that research is inconclusive and ongoing at this point and that decisions should ULTIMATELY be made by the patient. And for me ‘input from the group’ helps me to decide. (Like finding out from aewaustin what Dr Langford thinks about 2 vs 4. She has a different opinion from my doc. Now it is up to ME to decide what to push for)
I responded to what I thought you were saying in this specific place and not to what I've seen to be your approach in the past. I appologize. I could have done better in my response, but don't always have the time.
I hope you will give me further opportunities to flounder around on this subject and others and correct me when I misrepresent what you meant. I'm just a carpenter. I'm not a doctor. I'm not a writer. I'm not a professional of any kind. I'm just a guy.
I want to be part of the dialogue that can help myself and others to a better understanding of treatment and living with this disease.
Also I responded to this question because it seems to me it is a subject (number of Rituxan infusions) that is still being decided in the medical community and in individual case – all the more reason for the patient to be heavily involved. Not just for our own good treatment but to further the knowledge of how the different treatment levels are actually working out.

I have not seen anyone left to decide for themselves as you pointed out , but you have a LOT more experience with this and that possibility slipped by me. Especially since in my own case I have to fight to have input with my current doc. My advice to myself is DON"T let your doctor decide.

Another factor is that I know many here have world class doctors on the cutting edge of WG treatment and it is relatively safe to just 'let them decide' . Others of us in the hinterlands are behooved to try and be more informed than our doctor (not too hard in some cases) and make sure we are getting appropriate treatment - or at least the treatment we would want if fully informed.

Thanks aewastin for your information. I'm going to request that my doc talk to Dr Langford. I saw Dr Langford about a year ago because I didn't trust the decisions of my docs and I wanted the best doc I could find. I wish I had Dr Langford as my regular doc so I wouldn't have to be so involved in my medical decisions. Its been a terrible battle for over ten years now and I'm tired. Maybe its starting to show.

[Al]

Good post, Kirk. You raise several important issues. Especially, it is truly hard to know the best way to proceed, particularly if the medical community has nothing better to say.

Al

[pberggren1]

I couldn't log on this morning for a bit.

[me2]

Ah, I'm in good company then Phil. I'll quit complaining for at least a week then.

[Kami]

I still have problems logging on, took me several tries tonight.
I am not a very eloquent speaker either and I have to read and then read again and then once again to make sure my brain knows what I am reading. Sometimes I think reading is different than just talking to each other, things are interperted differently. Its good we can talk it out!! Have a good weekend everyone!!

[drz]

Sometimes doctor do leave it completely up to the patients to decide when there is no consensus in the medical community or research to suggest which option might be better. My wife was taking RTX maintenance every six months for a couple years after her initial four dosages to treat her lympoma which Mayo recommended. She did not like the side effects she experienced although they were no way as severe as what Sangye reports. In discussing her treatment with the doctor he pointed out there was no research suggesting the six month maintenance protocol did any better than waiting till evaluation suggested an increase in cancer activity and then providing more treatment.

He said it was up to her to decide which option she wanted. She went to the wait and see and now after 2 and half years of waiting is resuming the RTX treatment. It will be two sessions with the addition of radioactive isotopes to help RTX deplete the bad cells. This procedure was used for years in Europe long before it was allowed in the USA by the FDA. She wishes she could have had this initially since it has created remissions for some patients of 10-15 years in Europe while other treatments used in USA only offered remissions of a few years at best.

[Meredith]

I had 4 infusions end of April 2011 - still doing good. I have had some aches and pains recently but not enougyh to stop me. I am only on vitamins, nexium and bactrium. Have started walking 1 mile a day on the treadmill. Can't complain. Only thing I have noticed was that my face looks swollen -

[Meredith]

Also meant to say that the doctor told me it would be 4 treatments next time if I have to have it again.

[pberggren1]

Just wondering why you are on Nexium and Bactrim Meredith.

[Palmyra]

Good Morning and best wishes to all....

This is a relatively old topic, but one that is of current interest to me. My daughter is currently experiencing a moderate flair after only 5 months post a 2 treatment infusion of RTX. She's been popped back on some solumedrol, and is awaiting scheduling for another infusion. This has not happened in the previous 6 years of treatment with rituxan. My observation is that she had a more sustained, longer lasting remission with 4 infusions.

I also worry a bit about developing autoantibody resistance to the drug...which would be very bad if there is no new drug coming down the pharma pipeline.

Any collective thoughts? The more the better!

[me2]

Good morning also. I feel pretty good this morning for some reason - been a looooong time. Don't ask me why I feel good this morning, I just had a week of having to boost my pred. I seem stable back on 15mg where I have been for a few months now. I am three weeks from my 6 month Rituxan 'booster' shot.
I think about this question a lot Palmyra. I have flared at 5 months twice now and I have wondered if the 6 month standard might get adjusted - at least for me.
I don't know the experience of others in this regard so it is very interesting to me to hear your daughters experience is simular to mine. I know this is only a study of two but still, it is interesting - plus it now doubles my study sample. ha I'm sorry your daughter is slipping up right now.
I have only had Rituxan treatment three times. First time 4 infusions - and I seemingly had no benifit. I did not get better and went on to Cytoxan treatment.
My next experience was with the 2 infusion protocol and I then seemed to realize some benifit.
And NOW my last treatment was a 1 infusion 'booster' shot. I was skeptical it would work but trusted my doc on this one. He seems to have been right, I got 5 good months same as the two infusions.

I read up a little the idea of resistance and can't say I really understand it. Perhaps it is one reason my doc is trying to limit my exposure by giving me only one infusion at 6 months.
I wish there were a book on this topic I am having trouble trying to piece together a clear picture.

I did read that in using Rituxan for lymphoma and dealing with resistance they were able to increase the effectiveness of the Rituxan by combining it with other treatments, one of which was prednisone. I don't know how this applies to us but prednisone always seems to come up when we start to run into problems doesn't it? ha
I have not heard of combining Riuxan with other treatments to increase its effectiveness for WG. I wonder what one of the
'big giant head' doctors would say. As time goes on, presumably they will have to deal with resistance more and more.
I couldn't find anything relating frequency of use to resistance. It seems obvious they would be related by I didn't actually see that. I need to look into this some more. I hope your daughter bounces back quickly like I have.

[Palmyra]

Thanks me2,
We know from previous experience with other biologics (remicade, humira) that resistance can and does occur. I actually related humira use to her development of Weg and have found evidence of that in published studies/analysis.

Go Marta! We need a cure to all AI diseases!

[Sangye]

The first 2 times I had rtx I did 4 infusions. The 3rd time I did only 2 infusions because we were gonna do them every six months. Unfortunately the 2 infusions didn't work and I had to do a set of 4 within a couple months. It seems if you're more overweight, the difference in rtx received in the two protocols is large. That's what I think happened to me.

Though Dr Seo and I disagree (he's only going by labs), I feel like the rtx is not doing as good a job at controlling the Wegs as time goes by. I feel like I have smoldering Wegs but he says that's not possible. Makes no sense to me. Rtx only destroys the B cells in circulation (10% of the total), so who's to say the other 90% aren't causing problems?

[pberggren1]

Strange that Dr. Seo thinks that way Sangye. My doc says he has had many cases of Wegs that have smouldered over the years.

[drz]

Though Dr Seo and I disagree (he's only going by labs), I feel like the rtx is not doing as good a job at controlling the Wegs as time goes by.

My doctors would agree with you as do my wife's oncologists. They tell me they do not want to use RTX for me unless it is life threatening flare because they think it becomes less effective each time you use it. I guess it is like antibiotics that your body or bugs build up a tolerance to it when it gets used a lot. But sometimes it seems there is no choice but to try use it as a maintenance drug since you don't seem able to get by without it. Another reason doctors like to avoid heavy drug treatment when possible is to reduce and avoid side effects since we often don't know what the ramifications of long term use of some of these drugs either.

Sorry to hear it feels like the Wegs is smoldering again. Generally our feelings tend to be more reliable indicators unfortunately and sometimes the labs lag behind.

[me2]

My experience is a lot like yours Sangye, both with the disease and the response of my doctors. I know we have talked about this before. I haven't had a direct conversation about smoldering disease with my doc but he treats me like I'm doing fine as long as I'm not physically sitting in his room.
I have had smoldering , and more than smoldering, disease for over 12 years now.
I will say that I am doing better than five years ago, or two years ago, but I'm a fair piece from healthy. I'm encouraged and for the length of time that I have been sick and the many serious events and hospitalizations I have had it is surprising that today my message is hope.
If I can go through all that, for that long, and be feeling like I'm gaining ground... well, its amazing. And I hope my good friends here can find recovery faster and more robustly- I've had that happen too.
Your Dr Seo sounds like a wonderful Dr and a good person. I have a favorite Dr who treated me initially over thirty years ago, but he is not perfect and has made mistakes and has his blind spots too. He might say the same about me.
I am optimistic that treatment and treatment options will continue to evolve for us especially as we stay involved and help the good Drs to ask good questions.
I get Rituxan a week from tomorrow and tracheal dilation shortly after that. For me class is still in session.
Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.

[Al]

....Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.
I'd bed interested in what you find, Kirk. There is a genetic component to WG--meaning that certain gene regulation is involved. though how the genes get involved may be complicated (there is the possibility of a retrovirus, for instance; also, many bacteria and viruses mess around with the DNA structure). Keep us informed, please!

Al

[drz]

Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.

I think this is the one where they just take a blood sample and send it to the place analyzing the data. Sort of like the longitudinal one on treatment too but they are being done at different places. I have had blood samples sent to both places and will be in the longitudinal study on treatment for a while as long as I can tolerate the drive to Mayo where they collect the samples.

[Sangye]

Strange that Dr. Seo thinks that way Sangye. My doc says he has had many cases of Wegs that have smouldered over the years.
He agrees that Wegs can smolder (and agrees that I had smoldering Wegs for 2.5 yrs, even though some of that was under his care). He just doesn't think that I currently have smoldering Wegs.

[Sangye]

My doctors would agree with you as do my wife's oncologists. They tell me they do not want to use RTX for me unless it is life threatening flare because they think it becomes less effective each time you use it. I guess it is like antibiotics that your body or bugs build up a tolerance to it when it gets used a lot. But sometimes it seems there is no choice but to try use it as a maintenance drug since you don't seem able to get by without it. Another reason doctors like to avoid heavy drug treatment when possible is to reduce and avoid side effects since we often don't know what the ramifications of long term use of some of these drugs either.

Sorry to hear it feels like the Wegs is smoldering again. Generally our feelings tend to be more reliable indicators unfortunately and sometimes the labs lag behind.
Dr Seo said that rtx seems to work better/ longer the more times you get it, but he also has said that it may stop working if you get too much. Somewhere in the middle of that is me.

Rtx is my only option, so we use it as infrequently as possible.

[Sangye]

My experience is a lot like yours Sangye, both with the disease and the response of my doctors. I know we have talked about this before. I haven't had a direct conversation about smoldering disease with my doc but he treats me like I'm doing fine as long as I'm not physically sitting in his room.
I have had smoldering , and more than smoldering, disease for over 12 years now.
I will say that I am doing better than five years ago, or two years ago, but I'm a fair piece from healthy. I'm encouraged and for the length of time that I have been sick and the many serious events and hospitalizations I have had it is surprising that today my message is hope.
If I can go through all that, for that long, and be feeling like I'm gaining ground... well, its amazing. And I hope my good friends here can find recovery faster and more robustly- I've had that happen too.
Your Dr Seo sounds like a wonderful Dr and a good person. I have a favorite Dr who treated me initially over thirty years ago, but he is not perfect and has made mistakes and has his blind spots too. He might say the same about me.
I am optimistic that treatment and treatment options will continue to evolve for us especially as we stay involved and help the good Drs to ask good questions.
I get Rituxan a week from tomorrow and tracheal dilation shortly after that. For me class is still in session.
Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.
I'm really happy to see you in a good frame of mind. It's been rough for you. Nice that the sun came out. :smile1:

Dr Seo is a great doctor. He works harder than any doctor I've ever seen and is sharp as a tack. Really the only place he and I tangle is over how accurate symptoms and intuition are.