I'm having a little flare.

[annekat]

So pleased that you got to some sort of medicated remission. Yay. Hopefully your flare is just a minor and all goes well. I too keep getting the lung involvement. Have you had any advice on how long you are meant to be on CTX? I was on it for 8 months before but it didn't get me into any sort of remission. Hard to knock out this monster.
Having another flare at the moment just waiting on blood test to see if ESR and CRP are up. Col 23

Well, I wasn't calling it remission, nor was my doc, though we didn't really talk about it. Nor did he say HE thought of the MTX as a "maintenance" dose; he just wanted to get me off the CTX and didn't think I needed anything that strong anymore since the lungs had cleared up. But I thought of myself as close to remission just because I chose to think of it in that positive light and I felt pretty good. I've read on here that "remission" is not always a distinct concept, as to whether one is actually in it or not. Your blood work can look like remission, but you may still be having symptoms, for example. As for CTX, I've heard varying opinions on how long one should be on it, from 3 months to 6 months to a year. In the end, people seem to be on it for as long as their doc seems to think they need to be. I was on it for about a year but did start tapering the amount after about 8 months. And I was on a slightly low dose for my weight to begin with. Now, RTX is more available, which, though very expensive, seems to be taking the place of CTX as the first choice for severe WG. You said you were on CTX infusions; I think that may be a bit different. I've read on here that they are less effective than being on a steady dose of oral CTX, but that they are also less toxic because you are not on it all the time. i could be wrong about any of this, and I'm sure someone will chime in with any varying viewpoints.

I'm sorry you are also in a flare and hope that things improve for you soon.

[drz]

. You said you were on CTX infusions; I think that may be a bit different. I've read on here that they are less effective than being on a steady dose of oral CTX, but that they are also less toxic because you are not on it all the time. i could be wrong about any of this, and I'm sure someone will chime in with any varying viewpoints.

I'm sorry you are also in a flare and hope that things improve for you soon.

I was also started on CTX IV but was switched to pills for two reasons. First was it was easier to regulate the dosage and monitor for side effects. A bad reaction to an IV is a lot more dangerous since the dosage is a lot higher. Second is they said the oral form was more effective.

I was on CTX eight months but had to stop or reduce the dosage several times in this time due to toxic effects and infections caused from taking CTX. It did sort of get me into what the doctor called a drug induced remission in the loosest sense of the word. What he said was i was not getting worse so I was getting better and my lab work indicated the treatment was controlling the disease to the extent I did not need to do anything else except to continue it. My symptoms like the joint pain had also decreased and that was the main criterion he used for calling it a drug induced remission.

[annekat]

I'm sorry things have gone a bit askew for you Anne,
I hope the MTX increase helps and that you are feeling some relief very soon.

Enjoy some sleep in's and your rest's

Thanks, Michelle. Yep, I don't really get to start the new dose until next week because I just took the old dose and am out of pills and won't get new ones in time to add to the old dose. All this dosage stuff and working with the pharmacy on it can be a PITA. But yes, I will definitely enjoy the extra sleep in the meantime!

As an aside, since you remember Al well, I have made friends with a good friend and professional associate of his and she is taking me out to breakfast on Sunday morning. If I can get up in time to drag my butt into town! She talked to Al a lot about his WG and is very interested in all aspects of the subject. We have other things to talk about, too, I'm sure, and I'm looking forward to it.

I like your new quote from Will Rogers about the family parrot. I think Sangye will like that one, too, as she has a talking pet cockatiel who is a little character.

[annekat]

I was also started on CTX IV but was switched to pills for two reasons. First was it was easier to regulate the dosage and monitor for side effects. A bad reaction to an IV is a lot more dangerous since the dosage is a lot higher. Second is they said the oral form was more effective.

I was on CTX eight months but had to stop or reduce the dosage several times in this time due to toxic effects and infections caused from taking CTX. It did sort of get me into what the doctor called a drug induced remission in the loosest sense of the word. What he said was i was not getting worse so I was getting better and my lab work indicated the treatment was controlling the disease to the extent I did not need to do anything else except to continue it. My symptoms like the joint pain had also decreased and that was the main criterion he used for calling it a drug induced remission.

Well, drz, that sounds a lot like me, before this flare, as far as being in some sort of remission in the loosest sense of the word. I really did not have any problem with CTX, though.... got over the initial side effects pretty fast and just had to remember to drink lots of water. Don't know that I or any doctor would want me to go back on it, though, given the length of time I was on it.

[HopeinTN]

Anne I hope you get back on track soon.

Drz- Like you guys I too started with and still on CTX (going on month 14) for lung involvement. I have asked this before but it continues to be confusing for me. What labs show that you are in remission or even that it's working. Like you, no real sign of improvement with the nodules in both lungs, but nothing has gotten worse in them.

Thanks and happy Friday all!

[annekat]

Anne I hope you get back on track soon.

Drz- Like you guys I too started with and still on CTX (going on month 14) for lung involvement. I have asked this before but it continues to be confusing for me. What labs show that you are in remission or even that it's working. Like you, no real sign of improvement with the nodules in both lungs, but nothing has gotten worse in them.

Thanks and happy Friday all!

I'm not very well informed about the labs. But this time I asked the nurse to explain them a bit because I wanted to know, for one, if there was any sign of kidney involvement. There wasn't. The main thing she said was that my "inflammation markers" were up, and I think that means, at least partly, WBC, white blood cell count. The higher, the more inflammation, I think. There is also something called Sed rate, how fast something settles in solution, and I'm pretty well in the dark on that one, so maybe someone can explain. I know I've heard what it is, but have forgotten.

[HopeinTN]

Hmm. Ok. I do know they check CRP and SED Rate ((inflamation markers). However, from what I hear they are not so reliable as signs of disease activity.

The reason I ask what they consider as markers in labs is that mine have both been going up over the last 6 months and the dr's say it can be anything. It's so confusing to me since my scans have not showed improvement but nothing is getting worse, and my markers are going up.

I sent all my records to Johns Hopkins in hopes that they will take at least a look at my records adn give me more insight. 14 months of CTX and no improvement doesn't seem right to me.

[annekat]

Hmm. Ok. I do know they check CRP and SED Rate ((inflamation markers). However, from what I hear they are not so reliable as signs of disease activity.

The reason I ask what they consider as markers in labs is that mine have both been going up over the last 6 months and the dr's say it can be anything. It's so confusing to me since my scans have not showed improvement but nothing is getting worse, and my markers are going up.

I sent all my records to Johns Hopkins in hopes that they will take at least a look at my records adn give me more insight. 14 months of CTX and no improvement doesn't seem right to me.

Hmm. Sounds like you know more than I about these markers. But I do know that my levels have been consistently within acceptable ranges for months until just recently, when they have spiked, along with an increase in typical WG flare symptoms. How high the spike was, I do not know, but after reading the results, my doc ended up raising my MTX more than he thought he was going to. I don't know what all was tested and only talked briefly to the nurse on the phone. It's up to me to make the effort to learn more.

It does seem odd that the CTX is not improving things in your lungs, though they aren't getting worse, and the markers going up on top of that would be alarming. I hope the docs can figure it out and explain it to you adequately.....and most of all, I hope some improvement occurs soon, the markers go down, and/or they figure out another way to treat you that works better. I guess I've heard that CTX doesn't work for everyone.

[HopeinTN]

I know a lot, but not sure it's even correct. Just my interpretation. Ha! I do think that knowing your symptoms and how they relate to flares is the most important part of it. They say my markers could have went up due to many other things and it's not a great determining factor.

Me too. Hopefully I'll hear from someone at JH within a week or two and get a better idea. My doctors may be right and doing what should be done, but I owe it to myself to check it out and make sure.

[annekat]

I've thought of that, too.... I had a cold a couple of months ago and my markers could have gone up from that, and bloodwork wasn't done around that time. But this is different. The sweats, low fevers, and fatigue! They could do the ANCA test, too, but mine has never registered much of anything even when I was really sick.