Infections

[Barbara N]

It seems infection is the cause of lots of our problems. My last bout was caused by a bad bladder infection and it still hasn't cleared up. the next two weeks should tell me a lot, with the new doctors and the infection, hopefullly gone and my medications straighted out. They still waNT TO START ME ON DIALYSIS. i WOULD LOVE MORE INFORMATION ABOUT RTX BEFORE i GO IN TO SEE THESES DOCTORS SO THAT i KNOW WHAT i AM TALKING ABOUT. i HAVE FOUND THAT YOU HaVE TO KNOW JUST A LITTLE BIT MORE THAT THE DOCTORS DO WHEN YOU ARE WORKING WITH THE MEDICAL PEOPLE OVER HERE. tHEY WILL ALWAYS ANSWER THAT THEY KNOW EVEN IF THEY DON'T. Please give me some info about RTX. Symptoms, how you take it, doses, duration of treatrment, anything that might help me. I would love to go into remission and not have to go on dialysis, at least not for now. thanks for alll of your support. - This is the best group ever.

[me2]

Hi Barbara,
I can tell you the few things I think I know. Especially the parts that might apply to your situation.
I recently received Rituxan in September. At the time I was suffering from sinus infection and emailed my doc with my concern about taking Rituxan while having a known infection.
He said that he thought that at this point the WG was more danger to me than the infection. As it turns out the infection cleared up nicely with antibiotics and the Rituxan infusion went well.

Back in the early days of Rituxan the standard protocol for initial treatment (verses follow up treatment) was one infusion per week for four weeks. A total of 4 infusions. It seems now that the standard may be shifting to two infusions space two weeks apart- I'm not sure on this.

What I do know is that the emerging protocol seems to be getting an infusion every six months until the disease is brought under control. I've lost count of how many I have done every six months but it is something like 8.

I began with the 4 infusion protocol. My last 'tuneup' infusion was a single infusion at six months. So far I seem to be doing ok. I hope to make it to the six month mark and only need one other or none at all.

To me the first set of infusions were very scary because I read the possible side effects on the internet. Fortunatly the infusion nurses were great in talking to me about their experience giving Rituxan and the fact that most people tolerate it quite well. In the event that you don't they should be omwell trained to deal with any problems you have. The procedure to me now is boring I have become so accostomed to it.

I believe I read recently that Rituxan has been shown to be superior for treating relapse in comparison to Cytoxan. This seems to me good grounds for getting it approved if that is a question at all.

It is very expensive here. My insurance company gets billed just over ten thousand US dollars for EACH infusion. Yes, a series of four is about 40 thousand dollars. Thankfully, I have insurance that pays most of this. I suspect this is not an issue for you but the issue may show up in some form as nobody likes to pay for expensive treatment like that.

AND, I have found that even here it behooves (a little pun for you) me to try and know a little more than the doctors also. Sometimes I don't and am pleasantly surprised.
I wish you luck in getting better treatment. It sounds like you are gettiing things figured out even if they maybe aren't.

Are you taking what we call 'Bactrim' for your bladder infection? I know my doctors here favor Bactrim for my infections because of its unique property of reducing the chance of relapse. Plus it is just a great antibiotic.

[Alysia]

It seems infection is the cause of lots of our problems. My last bout was caused by a bad bladder infection and it still hasn't cleared up. the next two weeks should tell me a lot, with the new doctors and the infection, hopefullly gone and my medications straighted out. They still waNT TO START ME ON DIALYSIS. i WOULD LOVE MORE INFORMATION ABOUT RTX BEFORE i GO IN TO SEE THESES DOCTORS SO THAT i KNOW WHAT i AM TALKING ABOUT. i HAVE FOUND THAT YOU HaVE TO KNOW JUST A LITTLE BIT MORE THAT THE DOCTORS DO WHEN YOU ARE WORKING WITH THE MEDICAL PEOPLE OVER HERE. tHEY WILL ALWAYS ANSWER THAT THEY KNOW EVEN IF THEY DON'T. Please give me some info about RTX. Symptoms, how you take it, doses, duration of treatrment, anything that might help me. I would love to go into remission and not have to go on dialysis, at least not for now. thanks for alll of your support. - This is the best group ever.

Hi Barbra,
for me rtx stopped progressive deterioration of wg. I got already 2 rounds of it. the first was in March, and it was treatment dose: 1000mgX 2 IV, in 2 weeks. the only reaction I had was lowering of my blood presure to 35/70. the second round, at Septembre, a maintenace doze of 500mgX2 IV. after it I still feel very tired.

here I wrote how much it helps me:
http://www.wegeners-granulomatosis.c...s-my-list.html

[Barbara N]

Hi Alysia

Just saw your posts about your UTI. A few weeks ago I posted my story about having an antibiotic resistant superbug bladder infection which was causing me lots of distress because of frequency and urgency. As I was not in great pain or had a temperature, my nephrologist sent me on my way with no treatment telling my that only one antibiotic is susceptible to my infection and that he was hesitant to use it as it was the last resort and that he would only use it if my symptoms got much worse ....... and added that there was no guarantee that the antibiotic would work as there have been reports that some infections have become resistant to even that.

So it was very scary times for me. Here I was immune suppressed and waiting to see if this infection would go to my already compromised kidneys or that I would develop sepsis.

I was housebound because of the infection and spent many hours on the internet looking for help....and I think I have found it. It was the one product I had never tried because it was not available in SA a few years ago but now it is. I started taking it about 3 weeks ago and because of chronic infection, I was warned that it could take a while for it to be effective. Today, my urine has been clear for 3 days with no sign of infection. It is completely natural with no side effects. Has this worked for me and my Superbug infection? I think it has though it is still early days but I cant believe the infection has gone (I test with my own dipsticks) Maybe this is the answer for me......I hope so as UTI's have plagued me for over 8 years and I can say goodbye to antibiotics and all their side effects. Unfortunately it only works against E Coli and Klebsiella pneumonae but they are responsible for 95% of UTI's. If you (or anyone else) are interested in the product let me know and I will give you the name and you can do your own research...there is a lot on you tube about it also. Antibiotic resistant infections are challenging the medical community and they are being seen quite frequently now in the general population. Being immune suppressed makes us more of a candidate for these infections.

I would be very interested in the name of the drug because I have just spent 8 days in the hospital with a bladder infection that left me unable to walk and my speech was impaired and I had no strenght. It seems like it is coming back and I would like to go in and see them prepared with a different treatrment. They just gave me run of the mill antibiotics until the fever left. I have 2 more weeks to wait until I see two specialists and a kidney doctor, but I have to kill this bladder infection.

[Rose]

I would be very interested in the name of the drug because I have just spent 8 days in the hospital with a bladder infection that left me unable to walk and my speech was impaired and I had no strenght. It seems like it is coming back and I would like to go in and see them prepared with a different treatrment. They just gave me run of the mill antibiotics until the fever left. I have 2 more weeks to wait until I see two specialists and a kidney doctor, but I have to kill this bladder infection.

Hi Barbara.

You have really been through it. Do you know which bug caused your infection? The product is called Waterfall D Mannose. The manufactures claim it is effective against Ecoli and Klebsiella which cause about 95% of urine infections. Sweet Cures in the UK is the company that manufactures it and distributes it and they usually have an outlet in most countries. Many people have had great results while others have said it helps but does not cure the infection. Others say it does cure but can take months to do so. As for me, my infection appears to be low grade as I dont have pain, temp etc and now with the help of D Mannose the frequency has improved a lot....but I can say that after 6 weeks I am definitely not cured. But I intend to stick with it I have days when I think it has gone and reduce the dosage but then it comes back. As I am immune suppressed, a chronic sufferer of UTI's (and it is also a superbug causing my current infection) I guess my case is a bit more problematic than others.

Do some research for yourself. You can check out the Sweet Cures site but also get independent reviews by googling 'UTI and Waterfall D Mannose' It should be Waterfall D Mannose or Clear Tract which I believe is also a good brand. Another place to get reviews is on Amazon. UTI can get very serious (as you have discovered) so you must be aware of what your body is telling you. If you have a temp or kidney pain. feeling weak or ill you must get antibiotics.

Rose

[Barbara N]

Hi
Maybe I spoke too soon as it is still early days but the fact that it has taken it away for 3 days gives me hope. I guess I will know only for sure when I start reducing the dose and see what happens. I am told with chronic infections there is a possibility of it returning when reducing but just to increase the dose again and eventually it will go. It could take a while but I have hope as it is obviously doing something.

OK the product is called D Mannose. But there is D mannose and D Mannose. Some have fillers in them but you want a product that is completely pure. There are a few on the market. Clear tract is supposedly good but the one I am using is called Waterfall D Mannose by Sweet Cures. If you go to their website, it tells you all about it and how it works. Also google forums for UTI and Waterfall D Mannose and you will see how many people have found relief. The down side is that it can get quite expensive especially when you have been a chronic sufferer and need a while for it to clear. I have no choice so I will continue. It has no drug interactions, completely natural being a simple sugar and everyone can take it even Diabetics though they are advised to keep a closer eye on their blood sugar levels. They say it wont work for all infections of the UTI but for almost all. I am keeping my fingers...and toes crossed!!!

I willl surely check into it and talk to my doctor about it.I now have a list of medications that I want them to explain to me and let me know if they are available here in Spain. I still have a bladder infection. It isn't like anything I have had befor. It slurrs my speech, makes me walk like a drunk and i have no energy. I guess I had a fever when they took me to Emergency but it didn't last long. Now lots of times in the evening I start to get wobbly and my speech gets impaired. I really don't want to go back to the hospital if I can help it. Good luck with your infection and I hope mine clears up, one way or the other. Barbara

[Alysia]

I willl surely check into it and talk to my doctor about it.I now have a list of medications that I want them to explain to me and let me know if they are available here in Spain. I still have a bladder infection. It isn't like anything I have had befor. It slurrs my speech, makes me walk like a drunk and i have no energy. I guess I had a fever when they took me to Emergency but it didn't last long. Now lots of times in the evening I start to get wobbly and my speech gets impaired. I really don't want to go back to the hospital if I can help it. Good luck with your infection and I hope mine clears up, one way or the other. Barbara

Hi Barbara,
I am sorry that you have such rough time. sending you lots of hugs
I don't think that the speech issue is related to the bladder infection. please ask your docs about it.
as for the bladder infection, did they make you urine culture to find out what is the kind of germ that cause it ? if so, they can find the specific antibiotic.
I had to try about 4 kinds of antibiotics untill I have found the right one. I am going to start it again tomorow and then to see if my germ will finally go away.
please keep in touch and update us.

[Alysia]

**** **** **** thank you Andrew for your wise software that enable me to download my feelings without being unpolite....
after a month and half with antibiotics that killed my stomach, there was a reaction of the liver functions as showen in the blood tests, so my doc told me to stop it and see what happen. less then a week and half later and I am again with uti
now she prescribed me new antibiotics: ciprofloxacin.
she also said that my coughing sounds not very pretty, relativley to my usuall coughing, so she also sent me to x-ray maybe I will do it tomorow.
what also bothered me, is the protein in the urine. it is now on the high border. I don't have kidney involvement, but I am afraid of it. how high is the protein in the urine when there is kidney involvment ? I guess it is now high because of the infection but still, better to know what to look for. my creatinine is ok.
thank you for being here. I wouldn't survive without my awesome weggie family

[D.B.]

hi sweet Alysia hope cipro works for you. peace and comfort to you.

[annekat]

Hi, Alysia, just wanted to tell you I have used Cipro a bunch of times, mainly for sinus infections, and it has worked really well for those, though I can't speak for the uti problem. I would think you would want to take plenty of probiotics, or eat things which contain the good digestive bugs, such as yogurt. Watch for "thrush", a yeast infection of the mouth, and get a medicine to gargle with if needed, I forget the name, but it is yellow. Also drink cranberry juice and such to make things more acidic in your urinary tract. These things are all common knowledge and you probably already know them, but I'm feeling like being a "mother hen" to you, I guess....

I wish I could help with the other issues, with the liver, coughing, and protein in urine. I hope they figure things out and get these issues resolved soon.