Your opinions on this

[katarzena]

..Okay so today I got home from my second to last (is that correct?) IV cyclo and rituximab infusion and asked my doctor about further treatment and what will be the next medicine for me (imuran, meth...) she said probably only steroids dropped to low dose, imuran ONLY if needed.
I find this weird tho, although she said ''we acheved what we wanted'' when she saw my last blood tests, everyone else seems to get the other drug... I'm not complainig but I'm kinda worried.
Has anyone been on this kind of treatment?

[Sangye]

Did you ask her what she wanted to achieve? If she's just looking at blood work, that's bad. How are your symptoms?

[pberggren1]

A good Wegs doc looks at not just the blood work but how you are physically and mentally feeling and your history as well.

[Jack]

If you seem to now be in remission and are pretty well symptom free, then steroid only treatment may be OK. How are you these days?

[katarzena]

Yes of course she always asks me how am I feeling, is everything ok, have I noticed something etc.
I feel prefectly fine and have ever since I started my treatment. No pain, no nose bleeds so I guess only steroids is okay then?
It's just that I wouldn't llike to make things worse since everything was going okay till now, well you understand..
If it's okay, fine then.

[elephant]

Katarzena, if steroids are working for you then that is great. You may be just fine and have no relapse of WG, just keep a close eye on it. Cause we weggies like to be in denial! :)

[JanW]

At the conference and am finding that some of us have never had pred, and some have never stepped down after ctx or rtx. Sangye's wonderful doc, Seo, told a 26 yo patient yesterday - you deserve the opportunity to live a life without medication and as docs we are compelled to give you that shot. Wise words. Current stars with wg are that 75-90% will flare at least once whether you go off or not so once you understand thar you can see why docs are hesitant to overtreat.

[elephant]

JanW are you saying once someone is in remission 75-90% will flare? So someone like myself taking cellcept, prednisone, bactrim and cyclosporine is just as likely to flare compared to someone not taking any medicine?

[Sangye]

I can just hear Dr Seo saying that! He really minimizes drugs when possible, always trying to get me off more and more if possible. He even arm-wrestled the head of hematology at JHU because he didn't think I needed to stay on coumadin for life. But the hematologist convinced us both--mostly me. :D

[pberggren1]

I would love to meet Dr. Seo and other docs like him. But I am blessed to have my new Wegs Doc.

[JanW]

The docs all agree that they don't know what makes people flare or what keeps them from flare. Even people on rtx flare. What they all say is that 75 percent if us will flare at least once and 10 percent of us will never achieve a medicated remission and always have some signs of active disease (which can be controlled and is not necessarily destroying your body.

[elephant]

Thanks JanW for posting this! This is great information that your giving us!

[JanW]

I should have been clearer. When I said it's not destroying your body I mean you're probably not going to die of wegs. But you'll always be in treatment to get that inflammation down.

[drz]

Katarzena, if steroids are working for you then that is great. You may be just fine and have no relapse of WG, just keep a close eye on it. Cause we weggies like to be in denial! :)

Aint that the truth?

When I was first diagnosed I was so eager to get well and get home, I convinced myself and my doctors that i had recovered and attained remission after a very short period of treatment. Fortunately they kept me a couple more days for observation and I collapsed and ended up back in ICU and it took several more weeks to get well enough to leave hospital.

Patience is a hard thing to learn but WG sure helps.

Best wishes for a smooth recovery and remission.

[katarzena]

No, my doctor didn't say I'm in remission, close to it - probably. I am done with my IV infusions and now have a 6 month break, and after that (in february next year) have two IV cyclo and rituximab treatments left. So I am not going to be of medications for at last another half a year, but if it's a small dose I can cope with it's great.

If it's 75 percent that have at least one flare, even dozens of years later, 10% never get remission well there is another 15% that never get a flare, right?
So we should concetrate on that. Even a flare dozens of years late doesn't sound so bad to me. I mean, there were many positive stories so why concetrate only on bad ones..

[Sangye]

I think it's important to know the statistics but not let them sit too long in your head.

[Jack]

Remember that statistics only indicate the probability of something happening and may well not apply to you in particular. Try to deal with the problems you have now rather than problems which may occur in future that you have no control over.

[katarzena]

I agree with you. I've read so many different statistics that I don't really think about it anymore.

[JanW]

And remember guys that a relapse doesn't mean thar it will be as bad as the onset if your disease or even particularly bad. These guys are talking about a relapse like it's the flu and I know in my mind I always viewed it more like a recurrence of cancer - always bad news and a sign that disease is progressing.

[Jack]

Compared to the symptoms I had at the onset, the relapses I suffered were no big deal really because I was being carefully monitored and was treated early.

[Doug]

Compared to the symptoms I had at the onset, the relapses I suffered were no big deal really because I was being carefully monitored and was treated early.

I'd not thought about it this way before, but I can see what you are saying, Jack. I don't look forward to a flare, yet I can see where severity would be less if only because your doctors will view your symptoms through the WG filter after the initial diagnosis (if you lined up decent WG specialists to start with! ~ nag~ nag~nag!), and the quicker diagnosis bodes well for less damage to the organs.

[elephant]

Jack what kind of symtoms were you having when you relapsed?

[Jack]

Original symptoms returning - nasal crusting, joint pain, skin lesions plus some of the blood test results, but it is too long ago now to remember details.

[pberggren1]

Katarzea:

I have not been following your case too closely. Do you take IV ctx and rtx at the same time?

[TBulger]

Katarzena,

I just finished my first round of retux yesterday. My doctor took blood and we will meet for more blood work and review next month. Her position is that the retux should keep me flare free for six months, but we will have to monitor very closely. We are reducing the prednisone as quickly as I am comfortable with. She says that no matter what happens she wants to see me once a month just to be cautious.

[Doug]

Be aware of changes that might be a flare in between monthly visits, and notify your doctor if you feel you may need to se her before the scheduled appointment. Otherwise, it sounds like a good plan on your doctor's part. How you feel is the important part, of course, and that should be your guide.

[Brooke]

That is great to hear that if there were to be a flare, it shouldn't be as bad as the original onset. We all know what to look for from experience from the first flare!

[Jack]

The severity of a flare is only limited if it is detected quickly. With monitoring and the awareness of everyone involved, this should be the case, but it has the same potential to kill you as it did first time round. It is a dangerous game, but considering the near certainty of long term drug side effects it might be worth the risk.

[JanW]

What Jack said.

[Brooke]

Well hopefully everyone will monitor themselves closely and know what to look for and keep in touch with docs in case another flare is on the way.