Rituximab

[MaxD]

Good luck!!...heres a question related to rx and cyc...im on bactrim as a prophylaxis...how long do people tend to stay on this antibiotic? For life??

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Bactrim is generally taken as long as you're on prednisone. When I stopped taking prednisone, I was advised to stop taking Bactrim.

[gilders]

On another post Anne welcomed me back and said she was looking forward to an update on my health, so I thought I'd share it here on this topic I started last year.
Well, while the world around me seems to be turning to crap, fortunately, my long standing Wegeners flare is finally in remission. I am in more pain now (feet, knees, lower back), but it's to be expected with reduction in pred.
My kidneys took another hammering during this relapse, but have now stabilised, albeit on boarderline for dialysis.
My Aunt died in December and my mum is currently battling cancer and going through chemo. Mentally although I have been very upset since December (the reason I've stayed away from this forum) I have been coping. But my dog's ill health and the news on Thursday that I may have to put her to sleep on Tuesday has pushed me beyond coping. Don't get me wrong, I don't plan on doing anything stupid. I spent over 20 years battling Wegeners to give up now. I just wish my dog could tell me if she wanted to carry on battling or would rather rest in peace now.
This should be a happy time now that I'm back in remission. I appologise to anyone currently in a flare, who may think I'm not being appreciative about being in remission, as I am.

[annekat]

Thanks, Gilders. With all those unhappy things happening in your world, it's even more impressive that you are in remission, so congrats on that. Of course, your aunt, your mum, and your precious dog are more important than anything else going on right now, and no one would expect your being in remission to make you feel any better about those things. Just take good care of yourself and your loved ones at this difficult time.

[MikeG-2012]

On another post Anne welcomed me back and said she was looking forward to an update on my health, so I thought I'd share it here on this topic I started last year.
Well, while the world around me seems to be turning to crap, fortunately, my long standing Wegeners flare is finally in remission. I am in more pain now (feet, knees, lower back), but it's to be expected with reduction in pred.
My kidneys took another hammering during this relapse, but have now stabilized, albeit on borderline for dialysis.
My Aunt died in December and my mum is currently battling cancer and going through chemo. Mentally although I have been very upset since December (the reason I've stayed away from this forum) I have been coping. But my dog's ill health and the news on Thursday that I may have to put her to sleep on Tuesday has pushed me beyond coping. Don't get me wrong, I don't plan on doing anything stupid. I spent over 20 years battling Wegeners to give up now. I just wish my dog could tell me if she wanted to carry on battling or would rather rest in peace now. This should be a happy time now that I'm back in remission. I apologize to anyone currently in a flare, who may think I'm not being appreciative about being in remission, as I am.

Oh man Gilders. I've been there not so recently. I totally feel what you are going through. My extenuating circumstance was trying to find an assisted living facility for my wife's dad--one that I though would be worthy of taking care of him. I really struggling with getting him a good place--he's been my dad too for the past 26 years--longer than my parents.

Your dog will tell you. You will be able to see it in her eyes. Having just had to do that with our Lily, I completely understand how you feel, and believe me, you will miss her every day. But, we've learned to be strong people with this stupid disease, and I know that you can get through it! It will take time, but you will get through it.

Take care Gilders!!!!

[gilders]

Thanks Mike. I'm sat here reading and typing whilst she is sat with me. Can't bear the thought that I can see her and interact with her right this moment, but this time tomorrow she'll be gone (if we decide to euthanize her). I know once she's gone I'll think of loads of things I should have said or done with her during her last few days.
We've always gave her the best diet, but she loves food, so I've just got back from McDonald's with a small burger for her.

I'm not sure my "dog will tell me ". She's been unwell since the end of Feb, so logic tells me it's cruel to carry on. Perhaps it's more a case of me refusing to listen than her not telling me. She is now skin and bones, but her wooly coat disguises it well.

Sorry to hear about your struggles with finding suitable accommodation for your wife's dad. I have a similar situation with my Grandma. After a year of fighting for help with financing her nursing home costs, we finally got help (after my Aunt died in Dec and obviously couldn't contribute). Within 2 weeks of the nursing home agreeing to help out financially, she was placed in hospital under a "care order" as it was suspected that she had been neglected. She's now ready to leave hospital and we can't afford a different nursing home without financial help, but don't want her to return to a home where she was neglected.

Sorry to go off topic, so I'll add that Rituximab treatment still gets my seal of approval!

[Alysia]

On another post Anne welcomed me back and said she was looking forward to an update on my health, so I thought I'd share it here on this topic I started last year.
Well, while the world around me seems to be turning to crap, fortunately, my long standing Wegeners flare is finally in remission. I am in more pain now (feet, knees, lower back), but it's to be expected with reduction in pred.
My kidneys took another hammering during this relapse, but have now stabilised, albeit on boarderline for dialysis.
My Aunt died in December and my mum is currently battling cancer and going through chemo. Mentally although I have been very upset since December (the reason I've stayed away from this forum) I have been coping. But my dog's ill health and the news on Thursday that I may have to put her to sleep on Tuesday has pushed me beyond coping. Don't get me wrong, I don't plan on doing anything stupid. I spent over 20 years battling Wegeners to give up now. I just wish my dog could tell me if she wanted to carry on battling or would rather rest in peace now.
This should be a happy time now that I'm back in remission. I appologise to anyone currently in a flare, who may think I'm not being appreciative about being in remission, as I am.

Welcome back and thanks for sharing. Thanks God for your remission. Although life still demands a lot from you... Its tough to deal with it all, all at once but you are a vetteran. And I guess your mother is a good fighter, like you.
I am sorry for the loss of your aunt. May she rest in peace in the presence of God.
As for your pain - if you are back on a certain dose of pred - will you still have the pain ?
If I try to reduce pred under 5 mg I get crazy headaches and pains in joints and ears. So I dont try anymore. I guess I will be on it always.

[Jaha]

Gilders, I am so glad to hear about your remission. I am so sorry for all the other live stresses you are going through. Mike is right about your dear dog, she will let you know, and also you will know when it is time. It is so hard to make the decision and let go of such a dear friend.
It is never easy to deal with the emotional feelings of having a parent whom is so sick. I am sorry you are also having to go through that. I wish for you all the best with these terrible life stresses and that it doesn't way on your health.We are strong people, but sometimes enough is enough. Take care and it is good to hear from you.

[gilders]

Hi Alysia, my body doesn't cope well on higher doses of pred, I tend to get all the adverse side effects. Perhaps around 17 years of using them has made me more sensitive?
Plus the Ritazarem trial is strict on pred dose. I even have to return all the used pred pill packaging to show I've not missed a dose.

[Alysia]

Hi Alysia, my body doesn't cope well on higher doses of pred, I tend to get all the adverse side effects. Perhaps around 17 years of using them has made me more sensitive?
Plus the Ritazarem trial is strict on pred dose. I even have to return all the used pred pill packaging to show I've not missed a dose.

Well, I dont know if its a problem or a blessing that you cant have much pred... how much pred are you on ?

[gilders]

Well, I dont know if its a problem or a blessing that you cant have much pred... how much pred are you on ?

Just 5mg at the moment and foreseeable future.

Just started Allopurinol today, so that should help prevent gout. Just hope the interaction with Warfarin, Furosemide and Bisoprolol isn't too severe.