Rituxan and infections

[Jaha]

I have had 20 Rtx infusions since 2012. It seems like after I have an infusion, I get some kind of an infection and have to be put on antibiotics. I am wondering if when this happens, does that cancel out the effects of Rtx? I have never asked my Doctor about this, but it seems to me that it would take some of the power away from the Rtx. I also noticed that my B cells never just bottom out, in which I unstood that they are supposed to.
I maybe way off track here, but I am wondering if there is something that I just don't get. Please let me know what you all think of this. Thanks!

[Alysia]

Hi jana. Sorry for your infection. Same case here. After each rtx IV I get some infections and or viruses. During the first years it was more UTI's and I was on maintenance of antibiotics for months. I also had lungs infection after the rtx before the last one. After the last one I only got throat infection. I dont think that antibiotics disturb the rtx from working. I can clearly tell when it works on me and calm down the WG, no matter how many antibiotics I take.
Sending you prayers for speedy recovery.

[Jaha]

Alysia,
Thank you for responding to my concerns. I know that I do get to feeling better eventually, but sometimes it is a long road. I also have usually had UTI's after infusions and have to take rounds of antibiotics. This is all a vicious cycle and gets so tiring. Thanks for your prayers. I hope you are doing well my friend.

[blu4runner]

I am fortunate I don't seem to get infections after my RTX infusions and my B cells actually go to 0

[John S]

I get a monthly inhalation treatment of pentamadine antibiotic (I'm allergic to sulfa). I thought that everyone on RTX had to be on some antibiotic since the Rituximab depletes immune system and makes you susceptible to infections.

[MikeG-2012]

I thought that everyone on RTX had to be on some antibiotic since the Rituximab depletes immune system and makes you susceptible to infections.

Not I, haven't had to have one constantly. So far, I have only been on antibiotics periodically for sinus related infections. Otherwise, all has been good for me!

[Pete]

If I can get off pred and stay off it, I’ll be looking to get off bactrim. I believe in only changing one variable at a time when things are going well. When things go badly, then I do whatever it takes to return to stability.

[Jaha]

The on going saga! I am know in the hospital and have gotten a large red, hot,swollen place on my inner thigh. The surgeon cut it open and packed it. They sent a culture to the lab. They said today that it did not show anything. They said that it could have been controlled by the Batruim I take three times a week. I now will have to have it packed everyday for about a month at a wound clinic. It is so deep that he was able to put his index finger down in it.
I think that I picked it up when I had my repeat colonoscopy and endoscopy for the cancer episode. Good news on the the report for that though. There were more polyps and they removed the ones in my colon, but they weren't of the neuroendocrine tumor type and were benign.The polyps in my stomach are fundic gland polyps and are benign. They took a few for testing, but there are still many in there. My body is producing way to much gastrin, like 10 times more than normal. This is produced by the stomach and pancreas for digestion, it is a hormone.
On the PET scan my pituitary is enlarged, so I have to have another MRI of that at the end of the month. I thought I would fill you all in while I am a wake!

[Pete]

Although the road ahead doesn’t look very smooth, it looks like all of your issues are moving in the right direction.

[marta]

I have had 20 Rtx infusions since 2012. It seems like after I have an infusion, I get some kind of an infection and have to be put on antibiotics. I am wondering if when this happens, does that cancel out the effects of Rtx? I have never asked my Doctor about this, but it seems to me that it would take some of the power away from the Rtx. I also noticed that my B cells never just bottom out, in which I unstood that they are supposed to.
I maybe way off track here, but I am wondering if there is something that I just don't get. Please let me know what you all think of this. Thanks!

Hey beautiful Jana,

Nope. The antibiotic doesn't cancel our the Rituxin.
The RTX is a biologic agent targeting only B-cells. Another name for it is B-cell ablation. It gets nearly all of them. They are the ones who initiate the attack based on the memory of having had the virus or bacteria before or from previous vaccines. That's where all the memory of our immune system lies. So after treatment, you're essentially a new born baby when it comes to your immune system. It takes your bone marrow about 6-8 months to regenerate new B-cells. There are some stuck in joints and other places they like to hide, so there's always a little leftover from the time before.

What the treatment does (the part that puts us at risk) is it essentially reboots the computer. Kills any B-cells that thought that your healthy blood vessels were dangerous agents, and it's starting the reprogramming from scratch. It also makes us super vulnerable to infections. Even a mild flu can cause problems where your body is so overtaxed fighting the virus that bacteria can get in and then it's trouble. So taking antibiotics after an RTX treatment is not only not a bad thing, it's actually kind of a good thing because you get a little extra protection from potentially opportunistic bacterial infections.

I use to think (based on discussions here) that taking preventative measures for colds and flus might be counterproductive to our treatment. I've since changed my opinion. I have what I call my 'magic bullet' and I'll take it a few times in a row if I feel the need, and I know it only helps temporarily and doesn't affect the overall treatment. (My magic bullet is 2 oregano oil pills, 2 1000mg Vitamin C, and two 1000IU Vitamin D - above the two I take daily.)

Frett not. The treatment is a big picture thing and is doing it's thing behind the stage. I think taking care of avoiding, and if not then dealing with infections as quick as possible is top priority because in the 'Risk Benefit' part of our treatment, infection is the most dangerous thing we have to worry about once on treatment.

I hope that explained it and didn't make it more convoluted. I'm not great at expressing my ideas clearly and concisely. I'm working on it though. ;)

[Jaha]

Thank you so much Marta, for explaining that to me in a way I can understand. I have never really asked my doctor about that issue.
I am now fighting an infection that has caused a 4cm hole in my thigh and has to be packed. The culture showed it was Heavy anaerobic peptostreptococcus growth species and negative gram bacilli. I am on a really strong antibiotic. I just hope this kills it. Thanks again Marta!

[marta]

Thank you so much Marta, for explaining that to me in a way I can understand. I have never really asked my doctor about that issue.
I am now fighting an infection that has caused a 4cm hole in my thigh and has to be packed. The culture showed it was Heavy anaerobic peptostreptococcus growth species and negative gram bacilli. I am on a really strong antibiotic. I just hope this kills it. Thanks again Marta!

Holy crap Jana,

That's insane. Did you pick it up from the hospital?

I just read up on it. Sounds like a ride, to say the least.
In my 'wanna help brain' I am instantly thinking of other things you could add to the treatment, old wives kinds of things... like colloidal silver, like propolis... but these are just old wive's tales. I know these are things I add to my open cuts to quicken healing, and add an extra level of protection, but that's me. I've also read of out of the box fixes for things like C-dif infection (the antibiotic resistant bacteria you pick up in hospitals and gotta treat with the big guns of antibiotics with a low cure rate) and the new methodology has a 96% cure rate on first treatment and 100% cure rate for second treatment (fecal transplant is the treatment - gross but with 100% success rate, who cares). There is stuff out there that is beyond anecdotal for alternative treatments, I just don't know if there is one for your particular bacterial infection. I'll look it up. I'm curious now.

Sounds like a hard one to wrap your head around, but I'm pretty sure I've seen you go through worse stuff and come out swinging on the other end. I'm sure this experience will be no different. You are a warrior my friend.

In the not too distant future, this'll be a vague memory of "remember that hole in my thigh period? That was wild."

I know this infection will be fixed, and we'll have more stories to share of this crazy ride called Wegener's.

Take care Jana, and if I find anything, I'll send it your way.

Peace.

Post Script: I'm looking around and hyperbolic chamber seems to keep popping up as an aid to healing. Do you have access to one where you live?

[bobjannj]

Sent from my iPhone using Tapatalk

[Jaha]

Thank you Marta, at the wound clinic they have a hyperbaric chamber, I hope I won't need it.
I think I might have picked it up, when I had my endoscopy and colonoscopy. I was in the operating room for about two hours. It is really hard to tell what else they did with me,haha! I'm on Clindamycin three times a day. I also have a home health nurse coming in twice a week. I got it packed and the bandage changed today. The nurse said it was looking good. This is just another gift from the old Wegs. We all have to be very careful of where we go and stay away from germs.

[drz]

Infections are a big worry when your immune system is weak to start (mine is from diabetes)and then further suppressed by maintenance drugs I take for Wegs. i had a cellulitis infection in my scalp this summer near my BAHA site so there was a big concern that it might get into my skull which might require a a lot of IV antibiotics. I started treatment with Clindamycin and then a couple weeks of Cefdinir. No local health care staff had any great ideas about how to treat me or ability to assess my treatment. I finally saw an infectious disease specialist who deals with people with suppressed immune systems and he confirmed i was OK and that the treatment had work and I didn't need any more treatment. I also chose to stop my maintenance meds while taking the antibiotics to help them work better and he seemed to agree this was right choice. I know they usually have me stop my Weg maintenance AZA meds a few days before and after surgery although this can increase risk of a flare but when you are dealing with a serious infection that could kill you before you flare it seems like the wise choice.

[Jaha]

My Wegs specialist just called me and told me she wants me to see a infectious disease doctor asap. She said they would assess me as to whether I need to be on more than one antibiotic. That this type of bacteria can turn on you and go to your bloodstream fast. So I guess I will be seeing another doctor soon.

[marta]

Infections are a big worry when your immune system is weak to start (mine is from diabetes)and then further suppressed by maintenance drugs I take for Wegs. i had a cellulitis infection in my scalp this summer near my BAHA site so there was a big concern that it might get into my skull which might require a a lot of IV antibiotics. I started treatment with Clindamycin and then a couple weeks of Cefdinir. No local health care staff had any great ideas about how to treat me or ability to assess my treatment. I finally saw an infectious disease specialist who deals with people with suppressed immune systems and he confirmed i was OK and that the treatment had work and I didn't need any more treatment. I also chose to stop my maintenance meds while taking the antibiotics to help them work better and he seemed to agree this was right choice. I know they usually have me stop my Weg maintenance AZA meds a few days before and after surgery although this can increase risk of a flare but when you are dealing with a serious infection that could kill you before you flare it seems like the wise choice.

We become so good at risk/benefit management and knowing which drugs to stop when and for how long, which drugs to increase and when and for how long. It's quite unreal actually how good we become at doing this with each passing year.

If anyone I know makes wise choices Drz, it's you. I've learned so much from your sagely advice.
Thank you.

[marta]

My Wegs specialist just called me and told me she wants me to see a infectious disease doctor asap. She said they would assess me as to whether I need to be on more than one antibiotic. That this type of bacteria can turn on you and go to your bloodstream fast. So I guess I will be seeing another doctor soon.

sounds to me like the sooner, the better.

I'm sending out a little prayer for your quick recovery in an upward direction... whichever deity picks it up kudos to them, the more the merrier.

Lots of strength, and power during this speed bump moment.

m

[drz]

I think one of the best things I did this year was see an infectious disease specialist even though my cellulitis appeared under control by the time I got the appointment for consultation. But I got good info from him about my past treatment and supportive encouragement. He also gave me his cell phone number and told me if I had any more infections to take a pix of the area and send it to him along with info about the infection and he would advise on how to treat it. I found his reassurance helped reduce my anxiety about how to best get help when I have an infection which often happens due to supprressed immune system.

This was important to me cause two of my bigger clinics that have expertise in treating Wegs have proven not to be very responsive for other issues like infections in my BAHA site which can get real serous quickly in the infection moes into the skull. Even though doctors at both clinics have reassured me they would get me help quickly when I needed it. The world famous one advised me to go to my local ER or theirs if I wanted to drive that far and take a chance about getting good care there. The other got me a referral to be seen by a specialist in a few weeks. I figured by then it would be too late as the problem would be resolved some how.

I know doctors often give verbal assurances that they will see you ASAP or help you when you have a new medical issue but then you later you find out this is not the case when you ask for help when you need it. Since this has already happened to me several times I found that my best resource in these situations is my local ER or Walk In clinic if they are open. Some times the on call doctor or Nurse Practioner has also been my best resource.

I think being able to get help in a timely manner when we have a new issue is one of our biggest sources of anxiety and frustration because new symptoms or concerns can develop very quickly. And unfortunately in some cases we have lost members who were not able to get the right help in a timely manner.

Also most doctors are generally more apt to see an established patient more quickly than a new patient so establishing a relationship with an infectious disease doctor is a wise move I think.

[marta]

drz, I love reading your posts.
Truly.
I always get inspired by your advice and wisdom.

Thank you sir. You're amazing.

m

[John S]

I prefer to avoid infections. I asked the Doctor that prescribes RTX about antibiotics.

[Jaha]

Drz,
Thank you for your wise words. It is one of our greatest frustrations to not get immediate answers for our unpredictable infections and medical issues that pop up out of no where. We have lost too many of our dear friends on this forum, because I opportunistic infections. It is so important to get the proper help asap. This forum has been a life saver for me at times and I don't know what I would have done at times without all of you here, so thank you all!
I finally have gotten an appointment setup with an Infectionous Disease doctor, but not until 12/12. I now have a wound vac on my leg and it is healing very slowly. I would have never dreamed that it would take so long to heal. They took me off of antibiotics, because of risk of getting C-diff. I guess it is a roll of the dice to as if I need more antibiotics.
Thanks to everyone for their feedback and concern!

[marta]

I'm so with you Jana on how this forum has saved our lives, and sadly our knowledge sometimes comes from witnessing the loss of a dear friend on here. I know I wouldn't be where I am today physically and mentally if it wasn't for this forum. I am and forever will be grateful to everyone on here for the support, wisdom, patience, peace, challenge (yes even though I hated it at the time, it pushed me to find my current doctor who not only saved my life but who I wouldn't trade for all the tea in China) and empowerment they have shared with me.

Now to just putting a couple of flies in your brain. I am just putting a couple of ideas forth for consideration.
I'm not telling you to do anything even though that is how it comes across in the wording.

1. Call his office and tell them that time is kind of crucial, so if they have any cancellations you can be there within x amount of time. Maybe you'll get in sooner and then 12/12 becomes worst case scenario instead of best case scenario (where it is now) ;)

2. C-diff. So I know they are scared to death of it because cure rate is low and the antibiotic used is one of those lock and key types... BUT, there is an alternative treatment, it's kind of gross, but it has 100% cure rate. I know. Totally crazy. It is based on a probiotic model of treatment and is called a, ready for this... 'fecal transplant' - it actually has a 97% cure rate on first treatment, and 100% on second (for those 3% that missed it on the first round.)

3. Too many antibiotics.... the problem with them is that they kill too much of our good gut micro biome. The solution is probiotics. Aside from maybe making you feel gross, the only significant negative side effect is that it kills the good bacteria too. Now we have a solution to that. I personally am addicted to Kefir. I love it. It tastes exactly like a drink I use to drink in Bulgaria when I was a kid. So I have at least a glass a day. But there are many other ways to pump up your gut biome, and if you don't like the foods, there are pills too. The gut is the birthplace of the immune system, so keeping that bad boy happy is integral to our journey to normality.

So if antibiotics are keeping the infection in your leg from moving in systemically, I'd probably go with the antibiotics. I think the risk/benefit ratio leans more towards antibiotics to prevent an untreatable infection. I mean we take them all the time. I'm on Dapsone, daily for life. That's a heavy antibiotic to treat Leprosy, so I think keeping yourself safe from the clear and present danger of a bacterial infection, outweighs the risk of the antibiotics. And if C-dif becomes an issue, then you have something to suggest for treatment.

So the question becomes risk of sepsis (very scary, potentially deadly for us) vs risk of C-dif (100% treatable with fecal transplant). And now you have some extra data to make that decision on. I hope I didn't complicate the situation.

Big hugs, and lots of love Jana.

This too shall pass ;)

[drz]

Drz,
Thank you for your wise words. It is one of our greatest frustrations to not get immediate answers for our unpredictable infections and medical issues that pop up out of no where. We have lost too many of our dear friends on this forum, because I opportunistic infections. It is so important to get the proper help asap. This forum has been a life saver for me at times and I don't know what I would have done at times without all of you here, so thank you all!
I finally have gotten an appointment setup with an Infectionous Disease doctor, but not until 12/12. I now have a wound vac on my leg and it is healing very slowly. I would have never dreamed that it would take so long to heal. They took me off of antibiotics, because of risk of getting C-diff. I guess it is a roll of the dice to as if I need more antibiotics.
Thanks to everyone for their feedback and concern!

Some times I have had a local doc who seems concerned about my situation call such a specialist and get a consult over the phone on what to do in the mean time and this has often been a great help and relief for both of us. I have also had some luck in getting ER doctors makes referrals to a specialist which seemed to speed up the process too. (More so than my regular outpatient doctors). Not sure if that would help you or not in your situation but I have empathy for your anxiety and concern about your situation. I hope you get some good help soon and that things improve soon for you.

I think learning how to cope with and manage effectively the health care system to get the help we need for our various symptoms and issues is the greatest challenge we face. Our survival and health and happiness largely depend upon our skill and success in doing so.

[little jerry]

My first RTX in 2011 I developed a gaping hole on my low spine that they had to pack, clean,try this, and that and I had a nurse that came for about two weeks, and antibiotics and it went away, Kind of like a "parting gift". The ten times I have had the RTX and no problem. I just got home now from the latest infusion at the cancer center in Carson City.

[Jaha]

Thank you once again, Marta. Your suggestions are well taken and very spot on. I would not be a live without the help from dear friends like you on this forum. I will call and try to get in asap.
Hugs and love back at you, Marta

[Jaha]

Drz,
Thank you for your suggestions, I am going to try to get in sooner. I know that the management of our unpredictable disease is very challenging. We have lost to many of our friends from this ugly disease. I am so grateful to be able to come here and get good advice to help me manage health issues. I think it is getting harder to get cooperation from the healthcare professionals. I agree knowing how to effectively navigate through this optical course is very important.

[Jaha]

Little Jerry,
I am glad that you are doing well now with your infusions. Having a hole packed is not to fun. I have a RN coming to the house twice a week and also have to go to the wound clinic, once a week. It is healing, but slowly. I have had 21 RTX infusions and end up with so kind of infection everytime afterwards, usually it is a UTI. This time I got a big one.
Please take care of yourself!

[marta]

Back at ya Jana.

I was thinking about you all week because I had the c-diff thing on my brain, and was at the doctor's for my daughter (who they think might have gotten PANDAS from a strep infection, I insisted they check her for antibodies and a step swab, and I saw the doctor at the ski hill this Saturday and sure as heck, she's got asymptomatic strep, so we're going in tomorrow to get antibiotics, and a swab for me, and maybe even a round of antibiotics for me.... as usual, I digress)
We started talking with this doc about probiotics (his wife is a nutritionist) and we got onto using probiotics to treat infections, and the c-diff thing came up. We were talking, and I brought it up and we both lit up when that topic popped up (or is it pooped up, ha ha ha). So apparently this is now a known element in the actual medical world. This is super cool. Then I was telling Brian about our conversation, and he said he had heard on CBC about a new Fecal Transplant pill. Yup a pill. There is research out of the University of Alberta using them. They're not approved by Health Canada yet, but the doctors can apply to treat a patient with them (thereby avoiding some complications of the other methods like sedation complications, colonoscopy complications like tears, and if done with a feeding tube, there is always the possibility of tears and aspiration.) Here are some links:

https://www.theverge.com/2017/11/28/16709318/fecal-microbiota-transplant-colonoscopy-capsule-clostridium-difficile-infection
https://www.openbiome.org/press-releases/2015/10/28/fecal-transplant-pills-large-scale-production-begins-following-successful-dosing-study
http://www.cbc.ca/news/canada/edmonton/capsule-for-fecal-transplant-as-good-as-colonoscopy-to-treat-c-difficile-1.4424444

In one of the articles it notes that even with all the bacteria in the fecal transplant are killed, it still does better than the antibiotics used, so they're not sure if it's the bacteria or something else. Super interesting. But the point is there is an over 90% cure rate on the first treatment, and the article I read on this many years ago, stated 100% cure rate after the second treatment.

Another interesting thought around this, the immune system's birthplace, and training grounds is the stomach. So gut health, in my opinion, is directly related not just to autoimmune disease, but also the other diseases that I keep linking with ours. Quite fascinating actually. Only time will tell.

Best best best of luck Jana.

I hope that they call you this week, and tell you to come in right away because someone cancelled.

Much love.

P.S. I can't believe you've have 21 RTX treatments. That seems like a lot. I try and avoid them as they're the only thing I have left to take care of a flare, and I like to keep it in my back pocket like a cheating card player. RTX is my only Ace up my sleeve. Last two times, I had the beginnings of an allergic reaction, and I felt myself panic a little because if I can't use RTX, then I'm kinda hooped on my next flare. Just out of curiosity, are you using it as maintenance, or have you had that many flares? I remember the discussions a few years back when we all started using RTX around the same time. (Incidentally, my super doc was the first one to use RTX for WG in Canada way back in the early 1990's, cool, hey.)

[Jaha]

I have decided to go up to Cleveland clinic tomorrow and forget this doctor down here. I didn't even have enough energy to go to the wound clinic today and had the home health Nurse come in to change the Wound Vac. I tried to call to get in sooner to the Infectious Disease Doc and they wouldn't return my call. I am not feeling so great and need to get rid of this infection Asap.
I had to start using RTX, because nothing else was holding me from the ugly dog raising it's head and being active. I don't really ever think I have had a remission.
I hope you don't have strep, if you do, stamp it out asap. I hope your daughter feels well soon. Please take care of yourself! Love and Hugs!

[Jaha]

By the way, Marta,
Very interesting articles on the fecal transplants. That pill thing seems to be the way to go! I just hope I don't have to use those options.

[drz]

I have decided to go up to Cleveland clinic tomorrow and forget this doctor down here. I didn't even have enough energy to go to the wound clinic today and had the home health Nurse come in to change the Wound Vac. I tried to call to get in sooner to the Infectious Disease Doc and they wouldn't return my call. I am not feeling so great and need to get rid of this infection Asap.
I had to start using RTX, because nothing else was holding me from the ugly dog raising it's head and being active. I don't really ever think I have had a remission.
I hope you don't have strep, if you do, stamp it out asap. I hope your daughter feels well soon. Please take care of yourself! Love and Hugs!

Do you have an appointment or are you going to their ER facility for help? Best wishes for success in getting some effective help.

[marta]

Oh man! I'm sorry they're being jerks. I so hate it when that happens. Go where you can get help. If you have access to it, push as hard as you can. No kidding it's gotta go ASAP. I know I got IV antibiotics when I had Hana. Have they been aggro with the antibiotics?
Disregard. I'm gonna shut up now.
Go get someone to look at it that knows what they're doing.
We can talk once this is all taken care of.

Big big hugs. Sending you feisty, scrappy, healing jujus.