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

[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

[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

[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.