Infections

[Alysia]

Hi,
I am feeling exhausted the past days, "heavy", aching all over, empty of energy (physical one, I am still having enough mental energy, as you can tell :wink1:). I am passing the day like Baron Munchausen pulls himself out of a swamp by his hair….
http://upload.wikimedia.org/wikipedia/commons/3/3b/Muenchhausen_Herrfurth_7_500x789.jpg

First I was thinking that the RTX IV that I got this month is the cause for that, but after getting wise advice I did blood & urine tests. CBC shows infection. urine shows that it is there. My GP said we will wait for the urine culture to come back, to decide which antibiotic is the right one. I hope it will come tomorow.
B4 that infection I had ear infection (mild one),& b4 it I had throat infection, & b4 it I had another bladder infection, & b4 another ear infection (not mild), not counting colon infections… and each needs another antibiotic… :thumbdn:

It seems that the RTX is doing it's job well since my WG symptoms are diminishing (I hardly have impressive boogers to take a pic lately :thumbup:) but I guess that it also means greater susceptibility to infections ?
is there something that can be done to prevent them ?
In my first years of wg I was taking sulfa until it elevated my ALT (liver enzyme) and my doc told me to stop it.
In addition, I guess I am going again to get macro dantin like in the 2 last infections I had b4, BUT I remember vaguely someone here writing against it ? Rose ? someone else ?
Thank you for being here.

[mishb]

Oh Alysia, you poor love. :hug2:
I'm so sorry to hear that you are getting these continued infections........but I'm glad your doctor is onto it.

I guess the RTX is doing it's job too well, and has reduced your immune system to a level where you are going to pick these bugs up.

I am not certain as to what antibiotics or what precautions you can take to prevent these happening - I'm just sorry that they are :hug1:

I hope someone comes along with some words of advice - soon

[Alysia]

thank you so much, Michelle :hug1:you are always so kind, not only "keep smiling" but keeps the other one smiling as well, no matter what :biggrin1: I love you :love:

what you wrote about the rtx working TOO well, raises more questions:
can there be "too much" ? how can we know ?
maybe I shouldn't take MTX in addition ?
thanks anyway.

[Debbie C]

Alysia,I'm sorry you are ill:sad: I didn't know you were getting all those infections after your rtx. When is your culture supposed to be back ? What has your dr. said about the mtx. Are you still working ? Maybe you should wear a mask or scarf over your face for awhile until your system is not so suppressed and wash your hands alot.Go grap a blanket and your cats and take a "cat nap" and hopefully you'll feel a little better. Also drink lots of fluids to flush yourself out. I love that pic you posted,today I feel like the horse after that morphine yesterday!! Hope you feel better soon and they get you on antibiatics. Be sure you can take them with your mtx. I know the ones my mother was on came with a print out and 1 of them said not to take if on mtx...so ask the pharmacist,they know best.Sending you prayers that you feel well soon.:hug2:

[Savva]

Alysia,
Sorry to hear you had a lot of infections. I was not on rituximab, but on cyclophosphamide iv. I do not remember exactly the dose, but I think I had 1,400 mg cyclophosphamide intravenous every month. With God's help I ended by something like 19,800 mg total after this IV therapy. Now on aza, and my doc says it is enough for now. During IV therapy I had only one serious infection - my right arm from inner shoulder to forearm and even palm got stricken by herpes. I still do not understand how this could happen, I always thought it was sexually transmitted infection and I never been into serious relations before. My guess is that it is actually not a bad sign - it means rtx is doing its job well. But you having so many infections makes me think rtx should be stopped or lowered. Do you take azathioprine and how long have you been doing rtx? I really would like to know. About infections prevention - I can't say nothing, it is obvious you are having them because of weakened immune system but then again you need to keep this level to forget about WG symptoms and the only way of preventing any infection is immune boosting therapy.
I wish you to stay healthy.

[drz]

Hi,
I am feeling exhausted the past days, "heavy", aching all over, empty of energy (physical one, I am still having enough mental energy, as you can tell :wink1:). I am passing the day like Baron Munchausen pulls himself out of a swamp by his hair….
http://upload.wikimedia.org/wikipedia/commons/3/3b/Muenchhausen_Herrfurth_7_500x789.jpg

First I was thinking that the RTX IV that I got this month is the cause for that, but after getting wise advice I did blood & urine tests. CBC shows infection. urine shows that it is there. My GP said we will wait for the urine culture to come back, to decide which antibiotic is the right one. I hope it will come tomorow.
B4 that infection I had ear infection (mild one),& b4 it I had throat infection, & b4 it I had another bladder infection, & b4 another ear infection (not mild), not counting colon infections… and each needs another antibiotic… :thumbdn:

It seems that the RTX is doing it's job well since my WG symptoms are diminishing (I hardly have impressive boogers to take a pic lately :thumbup:) but I guess that it also means greater susceptibility to infections ?
is there something that can be done to prevent them ?
In my first years of wg I was taking sulfa until it elevated my ALT (liver enzyme) and my doc told me to stop it.
In addition, I guess I am going again to get macro dantin like in the 2 last infections I had b4, BUT I remember vaguely someone here writing against it ? Rose ? someone else ?
Thank you for being here.

I had frequent bladder infections that started when taking CTX and continued afterward till a doctor put me on trimethoprim antibiotic to prevent them. It is Bactrim without the sulfa part and I haven't had one since. It is often used to treat or prevent bladder infections. I also had an operation a year later to reduce urine constriction and that also helped a great deal since I could then empty my bladder much easier and completely. No bladder infections now for almost the past couple years.

[rebekah]

I'm glad to hear your WG symptoms are improving, but I'm sorry to hear about the current infection. Rituxan does weaken your immune as it depletes the B cells (a type of white blood cell). B cells help the body fight infection, so Rituxan can increase your risk of infection. I take Bactrim to help prevent infections. I'm not sure if you are taking that or something similar, but I would recommend it. I hope your labs come back soon so you can start the antibiotics and feel better soon. :)

[JeanMarie]

So sorry you are having all these infections. I hope you have the results of the culture & can get the right drug today!!!!!!!!!!!!!!!! Feel Better!

[pberggren1]

What is macro dantin Alysia? I didn't know you have had 2 other UTIs in the past year.....:sad: I hope the culture results come back soon. I'm not sure anything can be done to prevent the UTIs.

[HawaiianPrincess]

I'm so sorry to hear you're not feeling well, Alysia. My hubby, Steve has been battling aches, stiffness, & fevers lately. I appreciated your kind words of encouragement, and well wishes for my hubby. I wish you the same that you will get answers soon, and they can figure all this out for you. Sounds like you have a great team in treating your Wegener symptoms.

Waiting is the hard part! I had no idea you can get elevated liver enzymes while taking a sulfa antibiotic (Bactrim). Makes me sad that my hubby is severely allergic to Bactrim, and can't take it. Hopefully, you can get back on a good antibiotic to prevent these infections from coming back.

Sending you BIG hugs and tons of ENERGY from Washington State!
XoXo LeAnn :biggrin1:

[Alysia]

Thank you so much, everyone for your caring and advices.
you are so amazing and I love you all :love:

I was waiting for the culture to return… feeling that my powers are running out like in a hourglass… sweating all night … feeling sick :sad: but still went to work. no choice.

The culture finaly arrived today at 17:00 and my GP prescribed me med.

now I have new antibiotic to enjoy, this time Zinnat or Cefuroxime.
Last time it was macrodantin or Nitrofurantoin. Time to taste more kinds :wink1:
I want to hug each one and one of you and bless you with all my heart, feel well :hug1:

[pberggren1]

I have used Cefuroxime before.

[Geoff]

Hi Alysia,

So sorry to read about your battle with an endless stream of infections. Like you I am in a cycle of RTX IV and my docs have perscribed Co-Trimoxazole (Septrin/Bactrim) to give me an 'edge' when dealing with bacteria.
Perhaps in the future, after you have dealt with the current issue, you may add this to your armoury?

[Debbie C]

Glad you got your antibiatics..hope they work fast for you..can you not take time off work? Hope you feel better soon

[annekat]

I've taken Cefuroxime, too, back pre-Wegs dx for a sinus infection, one of many. I think it worked OK. I hope it works for you, and soon. This syndrome of fighting off a string of infections and not feeling well, sweating at night, etc., is something that needs to be resolved so you can get back to being your sweet and happy self. Do get plenty of rest, drink lots of fluids, and treat yourself well, let others do things for you. If you must work, know your limits and if you must take some time off, I hope you can just do it. :hug1:

[Alysia]

Alysia,
Sorry to hear you had a lot of infections. I was not on rituximab, but on cyclophosphamide iv. I do not remember exactly the dose, but I think I had 1,400 mg cyclophosphamide intravenous every month. With God's help I ended by something like 19,800 mg total after this IV therapy. Now on aza, and my doc says it is enough for now. During IV therapy I had only one serious infection - my right arm from inner shoulder to forearm and even palm got stricken by herpes. I still do not understand how this could happen, I always thought it was sexually transmitted infection and I never been into serious relations before. My guess is that it is actually not a bad sign - it means rtx is doing its job well. But you having so many infections makes me think rtx should be stopped or lowered. Do you take azathioprine and how long have you been doing rtx? I really would like to know. About infections prevention - I can't say nothing, it is obvious you are having them because of weakened immune system but then again you need to keep this level to forget about WG symptoms and the only way of preventing any infection is immune boosting therapy.
I wish you to stay healthy.

Hi Savva. I couldn't bear aza so I am on mtx, pred and rtx. rtx is every 6 months. I don't think it should be stopped but I need to find a way to reduce infetions.
Herpes, as far as I know, is of 2 types. you prob got the type which is not related to sex. like the wounds that sometimes apearing near the lips when there is some virus or fever or without fever.
thanks for your reply.

[Alysia]

thank you, all, for your caring and encouraging. I love you.
Geoff, I can't take bactrim. I used to take it but it elevated my ALT (liver functions).
thanks for your advice :smile:

[annekat]

Hi Savva. I couldn't bear aza so i am on mtx, pred and rtx. rtx is every 6 months. I don't think it should be stopped but I need to find a way to reduce infetions.
herpes, as far as, is of 2 types. your prob gor the type which is not related to sex. like the wounds sometime apearing near the lips when there is some virus or fever or without fever.
thanks for your reply. I just googled to make sure, and shingles is also a form of herpes, and I wonder if this could be the one Savva had on his arm. It is "herpes zoster", and only appears in people who have had chickenpox, as the virus stays latent in their body after that. It seems older people and a few Weggies tend to get it. I know a younger non-Weggie who got it, too. Anyway, you are right about the other two kinds, and many people have the Type 1 which appears as "cold sores" on or around their mouths. I have had them all my life and they appear more when I'm stressed or run down or about to get a cold or something. For some weird reason, since I've had Wegs, these heal faster, which is the opposite of how I'd think it should be. Maybe the pred kills the inflammation? I also have an herbal preparation that really works well on these but it may be hard to get. I can share the name with anyone who wants it but would first make sure it is still available on the web.

[Savva]

rtx is every 6 months.


Strange. Here in Russia we usually get iv therapy until we cant take it no more. Then switch to other immune suppressants. At least that's what my doc tells me. I had cyclophosphamide IV every month 14 times straight, (in a row)! After 8-9 times of this iv therapy (after 8-9 months) I always had a severe nausea and had been vomiting for 10-11 hours (usually starting at midnight and ending at about 1 pm) with breaks of about only 30 min in between. I guess by that time I had enough of cyclophosphamide in my body. I wish you will never experience anything like it with your rituximab therapy. God bless you.

[Alysia]

Strange. Here in Russia we usually get iv therapy until we cant take it no more. Then switch to other immune suppressants. At least that's what my doc tells me. I had cyclophosphamide IV every month 14 times straight, (in a row)! After 8-9 times of this iv therapy (after 8-9 months) I always had a severe nausea and had been vomiting for 10-11 hours (usually starting at midnight and ending at about 1 pm) with breaks of about only 30 min in between. I guess by that time I had enough of cyclophosphamide in my body. I wish you will never experience anything like it with your rituximab therapy. God bless you.

Hi Savva, each med has its own "protocol" of administration.
I hope you will never have to go through it again.

[annekat]

Here, I think most people who take CTX do so orally. Some get IV but seems less common. If I were going to bother getting something in IV form I think I'd rather it be RTX, since that is the only way to get it and it is now preferred over CTX. But the CTX in oral form worked well for me, cleared up the worst of my Wegs issues, and I was able to get used to the side effects so they didn't bother me. It was easy, affordable, and dosages could be regulated any time.

[Savva]

But the CTX in oral form worked well for me, cleared up the worst of my Wegs issues, and I was able to get used to the side effects so they didn't bother me.
Every time when I am in hospital in Moscow for a regular check with my doc, I meet new people with WG. Some of them who were so unfortunate to live far from any quality medical care were diagnosed too late and even if they were diagnosed, the treatment was not appropriate, as in my case as well. We have WG specialists here in Russia only in Moscow and I can name only few of them (perhaps 4, I don't know exactly), and one is my doctor. So for these poor people at their edge of dying the only reasonable way of treatment is oral CTX. Oral CTX has many advantages and is a very good method for prominent and strong symptoms. However it has disadvantages - side effects are more severe, your stomach gets damaged (at least that's what people doing oral CTX always tell me) etc... But Oral CTX also is good for those who have no or very slow progress on IV therapy for some reason. Anyway dosage is what's important. You can easily recover from small doses of oral ctx for 3 days of oral treatment. But a week is a different thing.

[Rose]

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.

[Debbie C]

Rose, I remember reading your thread awhile back ago. Glad you found something that cleared it up for you and that you are doing better. I would be interested in knowing what it is.

[Rose]

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!!!

[Alysia]

thanks for the info, Rose. and good luck with it ! please update us how it works.
I don't know if I will try it. need to read first what it is.

[Alysia]

I have used Cefuroxime before.

this med can beat elephants... it sure beats me :crying:

[pberggren1]

I'm so sorry sweetie.......:sad:

[Alysia]

not a dull moment, now I have a new infection: throat :razz: :sad:
and of course a new antibiotic to taste: Amoxicillin. looks yummy :blink:

I am going to set appt. with my wg-doc. maybe I am on too much immuno-suppresants. I will be glad if I can say goodbye to mtx.
anyone know if rtx & pred are enough ?

https://fbcdn-sphotos-f-a.akamaihd.net/hphotos-ak-prn2/1476577_1433552440190235_1707274698_n.jpg

[annekat]

I'm sorry you have a new illness, Alysia, and hope it can be resolved soon with the antibiotics. I think there are people on here just taking RTX and pred, but I am not sure, so we will wait to hear from them. Big Hug!:hug2:

[Debbie C]

Your cartoon pic looks just like you...very good !!! Sorry you are sick again. I've been on those anti bioatics before for something ??? I heard a good cure for a sore thoat is to make jello but instead of chilling it ...drink it hot with honey. Hope you feel better soon:hug2:

[annekat]

That Jello treatment sounds like too much sugar. We did drink it that way at camp, though, when I was a kid, but not with honey added. It tasted pretty good. Honey with lemon juice, warmed up, is good, too.

[Alysia]

Your cartoon pic looks just like you...very good !!! Sorry you are sick again. I've been on those anti bioatics before for something ??? I heard a good cure for a sore thoat is to make jello but instead of chilling it ...drink it hot with honey. Hope you feel better soon:hug2:

thanks :thumbup:
I can't take the Jelly because of my colon involvement but I will wait for the antibiotics to do the work.
the comics is fun. I just posted another one....
need some "playing" and humor to survive :wink1:

[D.B.]

alysia i just want to wrap you up in a super soft magic healing blanket. so sad dealing w such issues. esp throat issue. ive had sore throat for years now. always wear scarf, doesnt help physcially, but it feels nice lol can you drink tea? i like to spike mine w lots of ginger or cinnamon (anyway to get more antiinflammatory things into my body). how are you today? UTIs are so scary. im reading this thread thinking of my niece who is another medical enigma. suffers from stones, UTIs, since she was a toddler. now in her 20s still not diagnosed. so thanks for sharing. hoping u feel imprivement soon

[Alysia]

alysia i just want to wrap you up in a super soft magic healing blanket. so sad dealing w such issues. esp throat issue. ive had sore throat for years now. always wear scarf, doesnt help physcially, but it feels nice lol can you drink tea? i like to spike mine w lots of ginger or cinnamon (anyway to get more antiinflammatory things into my body). how are you today? UTIs are so scary. im reading this thread thinking of my niece who is another medical enigma. suffers from stones, UTIs, since she was a toddler. now in her 20s still not diagnosed. so thanks for sharing. hoping u feel imprivement soon

Hi Dina, thank you so much. you are sweet and kind. :thumbsup: I am still waiting for the antibiotics to do it work. I can drink tea, but not too much "spicy". I sent you private message, please search at the top of your page under notifications.

[drz]

Hi Dina, thank you so much. you are sweet and kind. :thumbsup: I am still waiting for the antibiotics to do it work. I can drink tea, but not too much "spicy". I sent you private message, please search at the top of your page under notifications.

Feeling sick and tired of being sick and tired is normal feeling for most Weggies a lot of the time. Sorry about your illness but we are just more prone to infections and flares or just increases in our residual symptoms from any stress. On the bright side though most of us have been much sicker some time and thus we know that things could be much worse, and that we can usually live through them and recover and then feel better again. It helps us appreciate the "good" days a lot more than most people too.

[Alysia]

Feeling sick and tired of being sick and tired is normal feeling for most Weggies a lot of the time. Sorry about your illness but we are just more prone to infections and flares or just increases in our residual symptoms from any stress. On the bright side though most of us have been much sicker some time and thus we know that things could be much worse, and that we can usually live through them and recover and then feel better again. It helps us appreciate the "good" days a lot more than most people too.

Hi drz. thanks :hug1:I missed your presence :love:
it is true that having some infection or flu is "comforting" in a way that we know it will come and go, not like our WG that came but will not go :sad:
and it is true that we can appreicate simple things and enjoy them much more :biggrin1:

[annekat]

Good evening for you and good morning for me, Alysia! I hope the antibiotics are taking effect and you are feeling a little better.

[Alysia]

Good evening for you and good morning for me, Alysia! I hope the antibiotics are taking effect and you are feeling a little better.

Awww Anne, you are very sweet :love: thanks for your caring. good morning to you. antibiotics didnt work yet :sad: I hope they will by tomorow....
how is your injury from the woods ?

[annekat]

Awww Anne, you are very sweet :love: thanks for your caring. good morning to you. antibiotics didnt work yet :sad: I hope they will by tomorow....
how is your injury from the woods ? Well, I know it takes at least a few days for antibiotics to work. I hope for the best for you. My injury from firewood gathering is much better and I will be fine. But it is cold here and I need to gather some more, so I will be careful, I promise!

[Alysia]

It turns out that the germ that I had in my bladder, didn't left . The "friendly" germ is sitting comfortably inside me, refusing to go :sneaky:

SO, I went to my wg-doc yesterday. He agreed that the immune-suppressants are efficient with me, TOO MUCH :sad:
So here is the plan: continue maintenance rtx every 6 months, reducing MTX to half, from 15mg per week to 7.5 mg per week :thumbsup: I was singing all the way home !

He also told me to insist with myself to reduce pred to 4mg. to try to suffer the symptoms that coming with the reduction. He calm me that it is not a flare but weaning symptoms. he said that being on pred also enable more infections.
And then I am going to be fed by antibiotics, after I will finish amoxcilin for the throat, I will take treatment for the "friendly" germ, and then at least month more for maintenance.
Btw- I asked him about flu shot: he said something interesting which I can't say that I understand: he said that it might not work on me because I am on rtx. That it is prob useless but not harming. But I am not going to take it anyway.

[annekat]

Alysia, that is interesting what you said at the end, because my doc said something similar, that the flu shot might not work on me because I'm immunosuppressed, in my case just the MTX, but with the RTX, too, it would be even more so. I'm not sure I understand it either but am thinking it's that the flu shot works with your immune system to try to prevent the flu, in other words, stimulates the production of antibodies to the flu. But if our immune systems are suppressed, it might not work. Today I see my doc and the subject may come up again. Last year he wanted me to get the shot anyway. They usually have a supply of it in his office but they were all out, so it was up to me to get it elsewhere, and I didn't do it. I wonder what will happen today. I think I'll fall back on what both docs said and not take the shot.

Other than that, I'm glad you are getting to reduce the MTX! I think my doc would like me to try that, too, but I don't have any RTX to fall back on and I'm not sure this is a good time of year for me to taper meds much, with me being under stress and dealing with cold weather that I have to be out in two days a week. However, I haven't been having any infections, so it isn't the same issue as what you have, and I don't think I am overly immunosuppressed at only 15mg. week of MTX. I'm trying to taper pred a little but it's going very slow.

Anyway, I'm so sorry you are still dealing with two infections and hope those are over with soon!

[drz]

Alysia, that is interesting what you said at the end, because my doc said something similar, that the flu shot might not work on me because I'm immunosuppressed, in my case just the MTX, but with the RTX, too, it would be even more so. I'm not sure I understand it either but am thinking it's that the flu shot works with your immune system to try to prevent the flu, in other words, stimulates the production of antibodies to the flu. But if our immune systems are suppressed, it might not work. Today I see my doc and the subject may come up again. Last year he wanted me to get the shot anyway. They usually have a supply of it in his office but they were all out, so it was up to me to get it elsewhere, and I didn't do it. I wonder what will happen today. I think I'll fall back on what both docs said and not take the shot.

Other than that, I'm glad you are getting to reduce the MTX! I think my doc would like me to try that, too, but I don't have any RTX to fall back on and I'm not sure this is a good time of year for me to taper meds much, with me being under stress and dealing with cold weather that I have to be out in two days a week. However, I haven't been having any infections, so it isn't the same issue as what you have, and I don't think I am overly immunosuppressed at only 15mg. week of MTX. I'm trying to taper pred a little but it's going very slow.

Anyway, I'm so sorry you are still dealing with two infections and hope those are over with soon!

I was told the same thing that the chance of the flue shot being effective is reduced because of my poor or broken immune system from diabetes, age, and Wegs and the meds I take but the doctors said some possible protection was worth the small risk of any problems from taking it so I did.

[annekat]

I went to the doc today and forgot to ask him about what he said last year about the flu shot not being as effective in immunosuppressed persons. I mentioned the cold weather was getting to me and he asked me if I'd had a flu shot and I said no, and he said I should. I said I'd keep it in mind. I really don't know what to do about this situation so will probably do nothing.

[pberggren1]

I hear ya Anne. This are tough decisions we face as Weggies.......:confused1:

[annekat]

Yep, that's the way I feel, Phil, and we don't often get a lot of help in figuring these things out. There are always opinions on both sides of the issue and it's a matter of whose do we go with. I just know I've made it for 61 years with no flu shot just fine, and in spite of being a Weggie I don't seem to be very prone to catching things. If I were to get a flu shot and it triggered a flare, I would be very disappointed.

[pberggren1]

I really doubt I will get a flu shot now. Marta helped me make up my mind on that one and do some more thinking on the matter.

[annekat]

I know I have read what Marta and some others have said in the past about this, but need to go back and revisit it... We know we are on our own with this weird disease when we put more credence in what our fellow Weggies say than what some of our very good docs, who don't have Wegs, suggest that we do.

[pberggren1]

Very true, I have known a few Weggies on here that have top docs and on a few rare occasions they went against what their doc suggested and took the right course of action.

[Alysia]

I really doubt I will get a flu shot now. Marta helped me make up my mind on that one and do some more thinking on the matter.

I think you did the right decision, Phil and Anne, not to get the flu shot.
you can see above, that my doc (although he doesn't treat much weggies, there arent much around here, but I guess, Phil, that my doc is not standing in the the criteria for wg-specialist) said the same as marta wrote: rtx is preventing the flu shot from being effective. therefore it is useles. so why should we take any risk, like you wrote Anne ?
it is better to be cautious around people. and always pray to God to protect us.

[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.com/forum/medication/3159-rtx-outcomes-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 :hug1:
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]

**** **** **** :predrage: 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 :crying:
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 :sad: 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 :love:

[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. :hug1:

[Alysia]

thanks so much Dina and Anne, you are very sweet and heart warming :love:
I can't take probiotics or many others foods because my colon can't bear them :sad:
it is so complcated to find the "balancing" between the wg-meds, the other meds, how to control wg-symptoms but on the other hand not to be too much immuno-supressive, so I can fight the infection.

we weggies need to be a kind of "jugglers"... :unsure:

https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/1535626_1452034878341991_1747704896_n.jpg

[annekat]

Sorry, Alysia, you probably said before that you can't take probiotics because of your colon. And you can't eat vegetables! Wow, that is really a limiting thing. I'm so sorry you have that issue and wish there was a way to fix it....

[Debbie C]

Alysia, be careful about taking too many antibiotics,you can easliy end up with C-diff which will make you VERY sick. Anne is right about the cranberry juice or any other juices you can tolerate. Hope you feel better soon.

[Barbara N]

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.
Hey me2 that was great information and I believe it is the solution. It turns out that my veins are to smashed for dialysis ,I have had so many operations that my veins can't take much more without exploding. That is why they have been telling me to get my things in order and think positivley and they will keep me pain free and comfortable. I really want them to put me on Bactrim because I have had this infection for about a year and it won't go away. Riding still makes me feel great and I ride as often as I can

[Rose]

Alysia, be careful about taking too many antibiotics,you can easliy end up with C-diff which will make you VERY sick. Anne is right about the cranberry juice or any other juices you can tolerate. Hope you feel better soon.

Thiis is what i was worried about though I never had any choices in antibiotic as my infection was resistant to all but one. For an update....it has been over 3 months now since told I had a superbug UTI. The D mannose continues to keep the infection at bay and I now use much less each day so the cost has come now. I am almost symptom free though i am aware the infection is still there. Hope you can get your infection under control. UTI's are the pits!!! Just been diagnosed with cataracts today...as Drz says. it is a disease that keeps on giving!!

[Debbie C]

Alysia,I was also going to mention last night before I signed off,besides drinking juices you should try different tea like green tea with alot of antioxidents in it ,maybe that will help.

[Alysia]

thanks Debra :love: I do drink a lot, all kind of teas (can't bear juices). my awesome dad just bought to me yesterday capsules of cranberries to swallow, so I hope it might work this way. antibiotics already working so I am feeling better.
thanks Rose for your update. it seems that I should search to find and try your D-mannos...
I hope your cataract can be handled easily. I guess it is a "gift" from the pred :unsure:

[Alysia]

first time for months that my urine culture came back clear :thumbup: thanks God.

[Barbara N]

Sorry, Alysia, you probably said before that you can't take probiotics because of your colon. And you can't eat vegetables! Wow, that is really a limiting thing. I'm so sorry you have that issue and wish there was a way to fix it....

I live on vegetables, I don't know what I would do without them but now they are starting to cut out certain veggies and fruit because of the potasaium etc. Next week is a full week , sometimes two appts. in on day then they are checking me in for three days to clear the potassium from my blood and another few days to clear the toxins from my urine. It has been decided that <I can't have dialysis because my veins aren't strong enough to support the shunts then I have a week of Ketamine. Sounds like a fun filled week ahead. I still have my bladder infection, they seem to have given me everything and nothing works. Big hugs and you take care of your self. I am praying for you. Barbara

[annekat]

I'm so glad your infection appears to be gone, Alysia! :thumbup: And good to hear from you, Barbara, but I'm sorry to hear your infection continues along with other issues. Thoughts and prayers go out your way. :hug1:

[Alysia]

Next week is a full week , sometimes two appts. in on day then they are checking me in for three days to clear the potassium from my blood and another few days to clear the toxins from my urine. It has been decided that <I can't have dialysis because my veins aren't strong enough to support the shunts then I have a week of Ketamine. Sounds like a fun filled week ahead. I still have my bladder infection, they seem to have given me everything and nothing works. Big hugs and you take care of your self. I am praying for you. Barbara

Dear Barbara,
thank you for your kind words. I am sorry for your suffering :crying: I hope that next week will be helpful to you. I pray for you with all my heart. lots of hugs :hug2: please update us.

[Debbie C]

Barbara,good luck next week. It seems like it will me a tough one but hopefully you will start to feel better by weeks end. I'll be thinking of you and I'll say a prayer that they find something that will bring you some comfort and end your infection. Keeps us posted:hug2:

[Barbara N]

Can the cataracts come from the perd.?I have cataracts now, not to bad but they will remove them whenever I have my next surgery.

[Pete]

Can the cataracts come from the perd.?I have cataracts now, not to bad but they will remove them whenever I have my next surgery.

Unfortunately, pred can cause cataracts. My ophthalmologist says he sees no evidence of them in me yet, although he did indicate it's more a question of when rather than if...

[drz]

Unfortunately, pred can cause cataracts. My ophthalmologist says he sees no evidence of them in me yet, although he did indicate it's more a question of when rather than if...

The good news on this is that the operation is generally very easy and effective and it generally yields good results. I can get by without glasses except for reading for first time in decades after my cataract surgeries.

[Alysia]

The good news .

drz, the good news are that you are here again :love: I missed you.
it seems long time since you wrote here. I hope that you are ok. if you feel like, please share how are you. :hug1:

[Alysia]

chills and low fever and new UTI :sad: came back from my GP with antibiotics and referal to blood tests.
what is bothering me, is that in the urine test, my protein was 200 ! the norm is no more then 30. I never never had it so high. scary :w00t:
the Gp said that after I will finish the antibiotics, I will do urine test of collecting it 24 hours, to check the protein.
how high is the protein when there is kidney involvement ? what else should I check ?

[pberggren1]

What have your previous urinalysis protein levels been at? You get them checked every month, right? What is your creatinine and eGFR at?

[annekat]

I'm sorry you are having problems again, Alysia. I hope kidney issues are not a part of it.

[Rose]

Hi Alysia

I am also sorry you are going through this. I have been there with the repeated urine infections and it is hell on earth. The 24 hour urine collection is considered a more accurate test for kidney function. They will also do a blood U and E and GFR at the same time. I do know that should the kidneys be involved in the infection you can have high levels of protein in your urine which will go away once the infection is under control. Hoping that this is the case.

Rose

[Debbie C]

Alysia,I can't believe you have another infection.Just when you get over 1 another comes your way:thumbdn: I wish I could tell you something about the protein amount and the kidneys,is there a kidney dr. you see or even your pcp should be able to tell you. I just googled it and it said most uti only effect the bladder,I hope this is true and eases your mind.There must be something you can take to prevent these all the time:hug2:

[windchime]

Oh Alysia I'm so sorry you are dealing with another UTI. I would think that as long as you "catch" the UTI early and it doesn't have time to climb up the ureters to the kidneys you wouldn't get a kidney infection. As far as the protein I'm not sure if that is a marker for wegs or not. There are others more qualified than I to answer that on here. Feel better.

[Alysia]

What have your previous urinalysis protein levels been at? You get them checked every month, right? What is your creatinine and eGFR at?

thanks everyone. I love you :love: and I couldn't made it without you.
my protein in the urine was NEVER above the norm. it is first time :sad: and it seems very high...
my creatinine and egfr are inside the norm.
last creatinine, less then a month ago was 0.89. the norm here is no more then 0.95.
I just did this morning blood tests so tomorow I can know the recent values.
thanks again.

[KimH]

Hi Alysia, My doctor had me do a 24 hour urine to check if I was spilling protein into my urine. That along with the BUN and creatinine was a measure of my kidney function. I remember my daughter who has medical issues having protein in her urine. How are you feeling? What does your doctor think? Do you need more tests? I hope you are feeling better.

[Alysia]

Hi Alysia, My doctor had me do a 24 hour urine to check if I was spilling protein into my urine. That along with the BUN and creatinine was a measure of my kidney function. I remember my daughter who has medical issues having protein in her urine. How are you feeling? What does your doctor think? Do you need more tests? I hope you are feeling better.

Hi Kim. I am still having chills and low fever, fatigue and lower back pain. waiting for the antibiotics to start working. my doc sent me to do many blood tests, which I did today. now I am waiting for the results. she said that the protein can be the result of the infection. it can also be wg-induced. allways there is a need to rule out kidney's involvement. I hope that the creatinine will come normal....
my wg doc said, the last time it happened, that I don't have to be worried about more "wg-developments" because I am "covered" with rtx, mtx and pred. but I don't know if I can trust him about it.... he did too many mistakes with me.....
thanks for you caring.

[Alysia]

creatinine arrived. in the norm. thanks God.

[Rose]

Alysia...great news. The reason I knew that protein could be found in a urinalysis when a UTI is present is because that actually delayed my diagnosis. I consulted my GP with symptoms of a bladder infection and he told me that it was a bad one as there was high levels of protein, blood and leucocytes present. I had no chills, back pain temp etc which would indicate a kidney infection but all the symptoms of a simple bladder infection. The infection cleared up following antibiotics and there was no follow up. At this time I was having my first symptoms of WG. I was also complaining that day of sinus problems, blocked ears etc and feeling terrible in my head. Little did I know what was ahead of me Fast forward 6 months and I was at death's door. The routine urinalysis done at the consultants room before emergency admission to hospital showed high levels of protein and microscopic blood and a blood test a few days later confirmed kidney failure. I remember about how surprised my GP was about the protein but put it down to the UTI. Often wonder had he told me to have a urinalysis done once the infection cleared, or ordered a blood test to check kidney function would I have been diagnosed 6 months earlier and maybe not have suffered so much damage to my organs.

Just wanted to mention also, that you can check your own urine for protein with the same strips that your doctor uses. You can buy them online or at pharmacies (more expensive) If you are concerned about WG attacking your kidneys this will give you an early indication of a problem which you can then report to your doctor who would then do a more tests. Also good for picking up UTI's early and you could try home remedies whilst it is still mild before resorting to antibiotics. It certainly gives me peace of mind between blood tests

Rose

[Alysia]

thank you very much Rose for your caring and advices and explanations :hug2:
I just found on the pharmacy the D-manose that you recomanded, so I think I will try it too.