Rituxan and infections

[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