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 ). I am passing the day like Baron Munchausen pulls himself out of a swamp by his hair….


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…

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 ) 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.
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

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

[Alysia]

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

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 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.

[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.

[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

[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.