RTX outcomes - my list

[Alysia]

Here I am 3 months after my first RTX. Although my WG doc told me to expect good changes until 4 months after, it is good time to check outcomes until now:
Nose:
Before: bleeding couple times a day, even when sneezing. Very big scabs (bigger then my nose). Nose full of "pieces". Cant breath, cant smell. Every touch in nose is very painful. "saddling".
After: bleeding stopped. No more scabs. Nose is "clear" inside. I can smell. I can breath. Almost no pain. Small "provisions" in the morning. I don’t know if "saddling" stopped or not yet.
Lungs:
Before: coughing all along the day. Short of breath.
After: much less coughing. Still have it 3-4 times a day. Breathing is better.
Joints:
Before: red, swallow, aching.
After: only a little bit rigid in the morning. Later become o.k.
Ears:
Before: aching. Inflammations.
After: o.k.
Eyes:
Before: red. tearfull. "heavy" feeling. although an expert eye doc said that there is no eveidence to WG in my eyes, my WG doc said that the redness is a symptom. maybe it is like coughing without new findings in the lungs.
After: redness is getting less and less.
Colon:
Before: a lot of diarrhea. Cant eat a lot of things. Pains.
After: less diarrhea. Less pain. Still having them in less frequency. Still cant eat a lot of things.
Fatigue:
Before: very tired.
After: still very tired. Maybe even more. Maybe something is going on inside the body, some "battle" which cause terrible fatigue.
Blood tests:
For the first time in years my c-anca + PR3 are normal !
Pred:
Before: changing doses 5-30mg.
After: 5 mg. my doc said I can start tapering down. I didn’t start yet. Afraid of it.
State of mind:
Before: despair, helplessness, depression, anxiety.
After: hope !
Others are invited to share their lists….

[whatthewhat]

This I find to be very thought - provoking & helpful. Thank you for sharing!

[mishb]

Alysia, that is a wonderful list. It should help others in their decision as to whether RTX is an option for them.

I'm so happy that most of the problems have improved for you.

I look forward to an update of the list in twelve months time
- if you are still on this site and not off enjoying your new found remission :thumbsup:

[Pete]

Hi Alysia,

Glad to see you're getting better. Hope the improvement continues!

Shalom!

[annekat]

I, too, am glad that you can cite definite and specific ways in which you are better. It is indeed encouraging to anyone starting out with Wegs and RTX, I'm sure. I know we have all felt the tiredness you are describing and am sure that will get better for you, too.

[Debbie C]

Alysia,so glad to hear to are starting to feel much better.Hope it continues and you get less tired:hug3:

[Marilyn]

Thank you for info, I will be taking my first dose 7-22,13. This is very encouraging. I don't have the sinus or nose symptoms but my right ear is plugged most of the time, sometimes both are. ENT can't find a problem, but hard to hear at times, but yesterday I started hurting like I had the flu with no other symptoms, even today, I was almost in tears due to the pain, of course it is a weekend, can't get a hold of anyone, and since my liver tests were high, have been cutting down on immuran from 75 to 50. I still work and I had a bad stressful day at work on Thurs, and was getting over a reaction to the shingles shot, which I think brought on this flare. It is scary, I actually took 10 mg of prednisone on my own to see if the pain would get better, it has helped, I am afraid of the interaction with immuran. Any comments. Or more results on rituxin? Thanks, Marilym

[woz]

Hi Alysia, Its good to hear the mind, soul and body are improving. Your detailed list is excellent,
and will help countless others, who maybe changing medication, or have similar problems.


All the best for the future, Woz.

[Alysia]

this forum gave me the strength to ask for RTX, to insist on getting it and to go and do it. thank you, friends. I love you :love:

[Alysia]

Thank you for info, I will be taking my first dose 7-22,13. This is very encouraging. I don't have the sinus or nose symptoms but my right ear is plugged most of the time, sometimes both are. ENT can't find a problem, but hard to hear at times, but yesterday I started hurting like I had the flu with no other symptoms, even today, I was almost in tears due to the pain, of course it is a weekend, can't get a hold of anyone, and since my liver tests were high, have been cutting down on immuran from 75 to 50. I still work and I had a bad stressful day at work on Thurs, and was getting over a reaction to the shingles shot, which I think brought on this flare. It is scary, I actually took 10 mg of prednisone on my own to see if the pain would get better, it has helped, I am afraid of the interaction with immuran. Any comments. Or more results on rituxin? Thanks, Marilym

Hi Marilyn, Im not taking Imuran, but i did. i dont think there is a problem to take is with pred. I took more pred for my ears + drops.

[Marilyn]

Thank you for the reply, being a nurse, I am always interested in signs and symptoms, and of course good outcomes. The way I have felt the last few days is such a reminder of the year I came down with this disease, which was 2weeks after my husband died. I was released from the hospital a few days after coming off the respirator. Mentally, I didn't know what happened to me, had to sort it out, but I was so weak, ESP. My legs, but as time moved on and I took the cytotoxin at home from home health, which was very hard for me, I had a lot of side effects, would take me around 10 days to recover after each dose. I took 6 of them, then went on immuran, started on 100mg. By the 3 rd month after coming out of the hospital I was weaned off prednisone, I had a hard time on that drug. I guess I am rambling, I really wanted to talk about the all over pain, like the flu, I almost couldn't stand it. This is the first time I remember hurting this bad since before I went into the hospital. I am very concerned. I did take another 10 mg dose of prednisone and was able to go to church. Any comments about the aching and pain in every joint? I promise I will update my experience with Rituxin, I would be so happy if my ANCA was normal! Thank you for all the support, Alysia, I'm praying for you, keep us updated on your recovery.. Marilyn

[Alysia]

Hi Maryln.
you realy had hard time. sorry to hear about your husband.
the pred can help with the joints also. but you have to take more then 10mg. when can you see a doc ?
it takes time untill RTX start working. meantime you have to take care of yourself with pred and Imuran. so better cosult WG doc.
I wish you will feel better soon.

[Marilyn]

Alysia, thank you for your answer and concern. An update on my condition, the aching and joint pain continued, then at 4am started with explosive diarrhea, which makes me think it wasn't a flare but a virus. I feel some better after sleeping most of the day, hopefully I will be able to work tomorrow. I am going on disability 5 days before my first infusion. My rheumy recommends 2 infusions, after reading on the forum, and listening to my MD, I am taking 8 weeks off to hopefully aid the med in getting rid of the B cells, and staying calm to decrease my stress levels. I am hopeful. Like I said I will keep the forum updated on this process, Rituxin, and my progress. Marilyn

[Football lover]

Hello, its been awhile since I have been on here. I finished my first round of RTX 3 weeks ago. I am still waiting to see if it has helped WG. So far, no. I read your notes about hurting all over and feeling like you have the flu. My doc told me that was a sign that I am in a flare with my RA and the WG. I have been in the emergency room twice in 3 weeks. first time was because I couldn't keep anything down after the last round of RTX. It made me so sick. And then this past weekend the pain in my eyes was so bad and unmanageable, I had to go get IV painkillers. I had another MRI done today. I pray nothing else shows up on it. I am so sorry you are hurting so much. They wanted to bump me back up on the prednisone, but I said no. I just weaned myself down to 5mgs after being on 80 for months. I wish you nothing but the best with the RTX. I am praying for you. I thank God for this site. It has helped me, when doctors couldn't find an answer. I felt so alone and desperate, but this site has given me hope. Please keep us informed and know you are not alone and there are many prayers being said for you. You are not alone, Find that happy place in your mind and go there as often as you need to.

[Barbara N]

That is a fantastic list. I don't know too many of the drug all of you talk about especially when you all use abbreviations. I am going to ask my doctor tomorrow about the drug you told me about, the one that seems to have made you so much better the -RTX. It is wonderful that you can start getting on with your life again. I hope the improvements continue. I am actually doing really well right now. I have poor vision and poor hearing but I have gotten used to that now if I clear up these dry skin patches I should be OK. I am well enough to ride today so that is great. Your list is very helpful and I think I should try and draw a time line, it might really help.

[Alysia]

That is a fantastic list. I don't know too many of the drug all of you talk about especially when you all use abbreviations. I am going to ask my doctor tomorrow about the drug you told me about, the one that seems to have made you so much better the -RTX. It is wonderful that you can start getting on with your life again. I hope the improvements continue. I am actually doing really well right now. I have poor vision and poor hearing but I have gotten used to that now if I clear up these dry skin patches I should be OK. I am well enough to ride today so that is great. Your list is very helpful and I think I should try and draw a time line, it might really help.

Hi Barbara.
that is great that you can drive. and that you are going to the doc tomorow.
RTX is called: rituxan ot rituximab. another name: mabthera.
good luck !

[Barbara N]

Hi Barbara.
that is great that you can drive. and that you are going to the doc tomorow.
RTX is called: rituxan ot rituximab. another name: mabthera.
good luck !

I can't drive. they took my license when I went blind and I can't get it back. I will ask my doctor though. Thanks

[Alysia]

I can't drive. they took my license when I went blind and I can't get it back. I will ask my doctor though. Thanks

Hi Barbara. sorry for my english - I meant ride (the horse) not drive....:blushing:

[Marilyn]

Thank you football lover, I also feel like I'm in a flare but just got labs back and rheumy dr.Says Lab is normal even Inflammatory marker is normal, but my liver function is elevated so md says I need to go to primary, who knows nothing about Wegeners. So frustrating, I have missed 2 days work and when I start walking feel the weakness I had when I got out of the hospital and my stomach is still acting up. I have felt close to normal for so long, it is hard to go backwards. I hate to hear about your response to Rituxin, I was encouraged when I read the response from Alysia, I am hoping I get a positive response for the treatment. I had similar response to cytotoxin, but I have had long term positive results from it. I hope my body responds well with little side effects. Did you do anything different prior to first dose? When do you take your second dose? Thank you again for your response. Marilyn