The last infusion (rtx)

[freakyschizogirl]

Hi guys!!

I have my last of 6 infusions next Friday.

I've not really looked into it but i was just wondering if someone is more knowledgable than me about what the long term prospect is for me (or anyone) after finishing RTX. I'm currently drug free after kicking preds butt earlier this year :thumbsup:.

I'm a sinus Weggie and i seem to remember someone telling me early on that sinus weggies are more likely to flare...?

For those of you who have finished RTX what happened after? What did the docs say about the future?



Also for those of you who knew me before the nose surgery, didnt i scrub up well for my wedding and not a saddle nose in sight :blushing: Thank you to all of you who shared info, gave me advice and wished me luck in the last 6 months.

[NikkiNicole]

Your positive attitude is awe-inspiring!!!!!

I'm a brand-new sinus weggie. Well, newly diagnosed so ... I cannot offer any words of post-med wisdom! I will send positive vibes across the states and then across the pond!!

And you look beautiful in your picture!!

[mishb]

You look awesome :thumbsup:

I don't know anything about RTX, except what I have read on here and on other sites, but, how come it is your last infusion?
I would have thought that there would be a continued maintenance of RTX every year or so, just to keep things in remission.

Timbo from Melbourne who was in remission for over a year, has recently had a flare and his last infusion was two years ago.
From what I remember him saying, his specialist said that they should never have let him go that long without a maintenance top up.
He had another round two weeks ago and is feeling better already.

Personally, I hope you never have to have the stuff again and your remission is lifelong.

[pwc51]

My experience - I had the two dose RTX treatment and it lasted barely 2 years before I flared (I was on maintenance medication of Pred and MTX in between). I had a repeat of the two dose treatment in April / May this year. After 6 weeks I felt fantastic, better than I ever felt since diagnosis in 2009. Rheumy is trying to determine if it is the RTX or Pred that is currently doing the work so we are dropping the Pred rapidly to zero over the next few weeks - it will be interssting to see what happens!

[whatthewhat]

(Gorgeous pic!! & congratulations!!)

Our rheumy for our teenaged daughter said it would be a matter of keeping track of blood levels, and exams, as far as determining when to do more rtx.

[Yvonnea]

Wow...you look amazing! And both so happy...congrats!
On your question....I took only two infusions of RTX (I think about 6 weeks apart) 2 years ago. Since then I had a slight rumbling of a flare...never proved. Went back on 7.5mg of pred. and 150mg of imuran for a couple of months and that seemed to stop it in its tracks. Feeling good again. Best of luck with your treatment.

[gilders]

Great pic.
There really doesn't seem to be any kind of set routine for treatment. This disease effects people so differently that no 2 people seem to have the same treatment.
I have heard that RTX is best used to get WG into remission, but it's not a good idea to use it for long term maintenance (possibly your body gets so tolerant of it, it doesn't work well enough if you have a major relapse/flare).
Yet others seem to have a yearly top up.
Although relapse rates are high, so long as your kidneys are ok, you should have a long and happy life. If a flare occurs, treatment is almost always successful.

[freakyschizogirl]

mishb - Its my last infusion because that was the treatment plan I was given - one infusion every 6 months for 2 years. I might have to get in there and talk with the Boss Dr Jayne and see what he thinks as I spoke to one of the lower doctors last time I was in clinic. I find Dr Jayne often takes my concerns seriously as I do my research.
I would also feel better being under a chest consultant again as I think this is a future weak spot.

NikkiNicole - i'm not always so positive, but do try to be, haven't got much to complain about at the moment!

Kidneys are clear and fully functioning gilders. Think I would feel a bit safer being on a maintenance dose of RTX but don't want to if it alters the effectiveness.

[carriej22]

I had 4 infusions one week apart, and he told me that I would not have a maintenance dose, this was over a year ago.. He thought about it; but really did not want to since I was doing well with no disease activity. I also was not comfortable having more RTX unless I really needed it. I have been doing Ok on Imuran. Trying to get the dose down to get my CRP down, but other than that I feel pretty well.

[Barbara N]

Hi guys!!

I have my last of 6 infusions next Friday.

I've not really looked into it but i was just wondering if someone is more knowledgable than me about what the long term prospect is for me (or anyone) after finishing RTX. I'm currently drug free after kicking preds butt earlier this year :thumbsup:.

I'm a sinus Weggie and i seem to remember someone telling me early on that sinus weggies are more likely to flare...?

For those of you who have finished RTX what happened after? What did the docs say about the future?



Also for those of you who knew me before the nose surgery, didn't i scrub up well for my wedding and not a saddle nose in sight :blushing: Thank you to all of you who shared info, gave me advice and wished me luck in the last 6 months.
You look radiant but if you are about to launch that bouquet, I would get way out of the way because you look like you play base ball and have a pretty good swing. If you are just showing us the bouquet then I will sit back down because everything looks beautiful especially that nose.

[Alysia]

cong for your wedding ! you look great in the pic :thumbsup:
can you tell us more about your nose surgery ?
I wonder if they decide to stop your rtx from reasons of your health or from other reasons. like finanacial ones... ?
I got my first rtx at March-April and I am going to get my maintenance rtx (500mg X 2) next week. I am still afraid about getting it :scared: although it helped me so much....

[pberggren1]

That is interesting you are getting 2 infusions of the RTX for maintenance Alysia. You don't have to be afraid, we are right beside you.

[annekat]

Great wedding photo, and congratulations! The nose looks great, though I wish the pic would enlarge so I could get a better look at it! But the important part is that you look so happy in the picture! I don't take RTX so can't offer any advice there.

[Alysia]

That is interesting you are getting 2 infusions of the RTX for maintenance Alysia. You don't have to be afraid, we are right beside you.

thank you for your support :hug2:
how much rtx is the correct dose ?
I am going to have 2X500 mg, in 2 weeks. but maybe it is not yet "maintenance" because I still have inflamation in the sinus according to the CT.
In the first time is was 1000mgx2 so it is less now.

[pberggren1]

I think the 500mg X 2 is the correct dose for maintenance.

[Debbie C]

Congrats freaky !!! You look beautiful, I've been wondering about you, I figured you were busy making wedding plans. Glad to hear you are of preds and now rtx. May you have a long happy, healthy life with your new hubby.:hug3:

[freakyschizogirl]

Thank You :biggrin1:

[StephaniaWi]

When first diagnosed I received four bags in July 2010. I got better and better and tapered off pred. I was on cellcept though. In August 2012 I flared and had to have it again to stop the hemorrhaging I finally got throught the insurance in November (Maybe Dec), then I had it again this last July as every six month protocol to keep me from flaring. Thinking back I began to actually go down hill in April 2012 in a lot of pain and suffering, I just ignored it because I wasn't actually bleeding from my orifices. I believe it saved my life and is the reason I am not sick with my WG symptoms now.