I'm having a little flare.

[annekat]

Well, just got bloodwork this week and my inflammation levels are up, which goes along with how I've been feeling... increased fatigue and need to sleep, more mucus and coughing, more blood in mucus, night sweats and low fevers, some headaches, 3 little dots of typical WG rash on my forearm, and loss of appetite. So my MTX is being increased from 10mg./wk to 15mg/wk, which maybe is where it should have been in the first place. My kidney indicators are fine and no liver issues from the MTX. I think my lungs are OK, xrays have all been OK, and the coughing is from sinus drainage and dry tissues.

This is not a big flare or a big deal, just thought I'd mention it..... I'm at a point where I can get lots of rest and have a lot of flexibility in my activities. In fact, I'm feeling good about it, because it validates that I do indeed recognize the signs and am able to interpret what is going on in my own body. The doctor is the one who has to listen to ME on this, and he can order the tests and prescribe the drugs, but this should give me some credibility in his eyes that I know what I'm talking about. Yay! Of course it is largely due to this forum that I even have a CLUE what I'm talking about! :thumbup:

In addition to the 15mg./wk of MTX, I'm on 10mg./day of prednisone and Bactrim 3X/wk., plus folic acid, alendronate, and generic Mucinex. My doc hadn't yet suggested trying to start tapering the pred from where it's been at for a long time, and now, that seems pretty well off the table, which is fine with me until I feel better.

[pberggren1]

I'm sorry you are flaring Anne. I hope it can be brought under control soon.

[Debbie C]

Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them.

[annekat]

I'm sorry you are flaring Anne. I hope it can be brought under control soon. Thanks, Phil. I'm pretty hopeful it will resolve with the higher dose of MTX. I think I had a little flare when I switched from CTX to MTX, but it pretty well took care of itself, for awhile, anyway.

[annekat]

Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them. Thanks, Debra. You have a lot more to worry about than I do at this point. Taking a break in Florida sounds like a great idea.

[Col 23]

They usually increase my Pred for awhile if I start flaring. Hate the Pred so hard to decrease always have to suffer to get down on it. Hope your
feeling better soon. I was on MTX before they put me on Cyclophosamine infusions. I was advised by new Rheumy that I should not have been on MTX for two years as I had never been in remission or medicated remission. Apparently MTX is to maintain and manage remission along with low dose pred.
Thought I would share this as the Cyclophosamine infusions have helped alot. Just started them up again after 6 month break, make me sick for about 5-6 days and then I come good, working on remission this year....
Col 23

[Col 23]

All the best
Col 23

[annekat]

They usually increase my Pred for awhile if I start flaring. Hate the Pred so hard to decrease always have to suffer to get down on it. Hope your
feeling better soon. I was on MTX before they put me on Cyclophosamine infusions. I was advised by new Rheumy that I should not have been on MTX for two years as I had never been in remission or medicated remission. Apparently MTX is to maintain and manage remission along with low dose pred.
Thought I would share this as the Cyclophosamine infusions have helped alot. Just started them up again after 6 month break, make me sick for about 5-6 days and then I come good, working on remission this year....
Col 23 Thanks, Col 23. I was on CTX first, during my sickest period with WG, because I had lung involvement. That is gone now and I'm on MTX because you shouldn't be on CTX for too long and it did its job. I still have the sinus issues and MTX is more appropriate for that. I've been on a pretty low dose, 10mg. a week, because I was doing pretty well. I was thinking of myself as close to medicated remission and that that was sort of like a maintenance dose. Now with the flare I'm up to 15mg for awhile. So, no, not in remission. I guess he didn't see fit to raise my pred dose but I'll see him in a couple weeks and I guess that could be an option if I'm not improving much. I hope not, since I'd rather start getting off it, but on the other hand, pred is not as much of a problem for me as for many on here, that is, I tolerate it pretty well. Thanks for the well wishes.

[Col 23]

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

[mishb]

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

[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.

[drz]

For me they use the same ones listed above plus the ANCA PR3 scores. My WBC goes up usually with an infection and so do the inflammation markers like sed (ESR) and CRP rate. When I am in a drug remission all of these for me can be be in the normal range. The last one is usually the ESR or sed rate since that is slower to change and is often above the normal limit. I also have diabetes which increases the ESR reading too. The CRP seems the most sensitive and first to change for me and the WBC if I have an infection. For me flares and infections generally seem to occur together. Then during a flare there is the increase in symptoms of fatigue, nasal bleeding, and joint pain and sometimes something else Wegs related. Infections can and do occur with increased inflammation readings without flares but that is not typical for me so far.

[ArlaMo]

Having just experienced (still...) my first flare, I am wishing you a quick return to normal!

[mishb]

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.

My MTX went from 10 to 15 and then to 20 which I have been at for about a year and a half.
Just remember that when you have to cut your 10mg tablet in half to get a 5, that you have to handle the tablet.
As this is a chemo tablet, you need to wash your hands before touching any other part of your body.....especially your eyes.

How lovely to be able to meet up with someone who knew Al and what he went through.

Yes, this quote was on my desk calendar the other day, and it made me laugh so loud that everyone was looking at me at work :tongue1:

[annekat]

Thanks, Michelle, and ArlaMo. Good to know that about the MTX pills.... actually, my pills are 2.5mg, tiny little things, so that means I can create almost any dose without having to split them. So I am going from 4 pills a week to 6 pills a week. It's still important to remember about washing one's hands, so thanks for the reminder.

I'd like to get a second opinion about my MTX dosage, since my doc is pretty inexperienced with WG, and I feel like a guinea pig! Who knows, maybe I wouldn't be having the flare if I was on the right dose to begin with. I have an idea of where to get this second opinion, but it won't be easy, and if I start feeling significantly better and get over the flare, well, we'll see if I follow through. But then he will probably want me to lower the dose again.....more guinea pig feelings!.... he is all about me being on "as little drugs as possible," probably to a fault. WG is not something to mess around with or experiment on.

[Col 23]

I was advised that increases in the ESR and CRP indicated inflammatory but can also mean you have an infection. WBC usually alters 10 -14 days after chemo and they have to monitor this. I have to have bloods and urine sample, 12 days after the chemo so they can monitor everything. I've come to the conclusion that remission in any form is a miracle with this illness. Wishing you all little miracles and the big one:thumbsup:.
Cheers Col23

[KathyB]

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.

Hi Anne -- are you a candidate for Rituxan??

KB

[annekat]

Well, you get more advice than I ever do, but I'm sure my doc realizes that an infection would also cause a spike in these numbers. I think given the way I feel, recognizing the increase in WG symptoms, I am in a flare and I'm glad that my doc is willing to go along with and acknowledge that, this time.

[annekat]

Hi Anne -- are you a candidate for Rituxan??

KB I don't know. That's something I may try to find out if things get worse in the future. Paying my share of it would be impossible, so I'd have to get some special arrangements. Right now, I'm not bad off, just suffering while waiting to be able to take my new dose of MTX, which I can't get or take for a few days since I just finished one up, am out of pills, and the drug plan is weird about those things, plus there may be shortage, as there was last time and I had to find a different pharmacy that had it.

[KathyB]

Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them.

Sounds like a great idea for some R & R ... Florida! Where do you visit? My family is on the Gulf Coast. Mom & sis in Venice, brother in Englewood, son in Tampa, son in Orlando! I hope to get down there by the end of February or beginning of March! Enjoy!!!!

KB

[Col 23]

Hi Anne
Hate to hear that your suffering and the health system just makes it worse. Wish I could help, my thoughts are with you and a big hug.
cheers Col 23

[Col 23]

Hi those choices and options sounds amazing. Do them all I say.
Col 23

[Debbie C]

Kathy..I lived outside Orlando for 13 years ( Altamonte Springs ) but moved back to Ohio after my father passed to help my mother. My one sister just recently moved to Palm Bay -east coast so she said I have a place to move to whenever I am ready. I'll will probably be going in mid March just for a few week visit. I'm seeing other surgeon tommorrow to see if he can do my hernia surgery this week.And I have an appt. to start seeing another reumy down here on the 19th so I don't have to make the trip to Cleveland all the time..they can just advise each other. Then see my kidney Dr. on Wed. Never a dull moment. Not to mention having to take my mother to 6 different docs this month.

Anne....you should start asking the place where you get your blood drawn or yr drs. for a copy of all your blood work. The hosp. I go to has a thing called my chart online and any dr and myself can go in and get the results of any tests ( if they have asscess to that computer system ) Hope u get to feeling better soon..I personally think we are all guinea pigs,if one thing doesn't work then let's give this a shot. When I was first diagnosed the reumy said my nodules in my lungs were coming and going any on their own. So I really wonder if the meds are ALL nessecary ?? Get better soon,I'll keep u in my prayers...all of us !!

[annekat]

Good idea, Debra.... I know the blood work copy belongs to me and I have the right to it. Just need to make an effort to pursue it. Online would be great, might even be an option, for all I know... And thanks for your prayers and good wishes!

[Debbie C]

Good idea, Debra.... I know the blood work copy belongs to me and I have the right to it. Just need to make an effort to pursue it. Online would be great, might even be an option, for all I know... And thanks for your prayers and good wishes!

Anne, you are entitled to everything..whenever I have any x-rays,scans or ANYTHING done at the hosp. I request a copy of the cd and the report of who read it. I usually know the results before I go see my Dr.!! I keep every thing together in a notebook with different sections and with all my cd's. That way if I go to a new Dr. or move I have all my info. I can also keep good track of my bloodwork by going back thru the history and seeing the different changes.

[annekat]

Yes, I'm just not as well organized as you. Just want to get out of there and go home. Usually there are no changes anyway, so no big deal. Now that I'm having my first flare, it does seem more important to follow through on these things.

[Sangye]

Just seeing this.... It sounds like you caught the flare early enough to avoid stronger meds, Anne. I hope so, anyway. Are you feeling any better on the higher dose of mtx?

You are right to avoid more ctx unless you have severe disease activity. And you're also right to avoid using rtx until and unless you really need it. Save those drugs as much as possible. Because the higher dose of mtx will take a few weeks to fully kick in, they might need to bump up your pred dose for 2-3 weeks.

I'm hoping you can get a Wegs specialist soon.

As far as inflammatory markers, there are two: ESR/Sedimentation Rate/Sed Rate and CRP/C-Reactive Protein. The ESR isn't as good at detecting acute inflammation-- it's sort of a slow mover. The CRP is excellent at detecting acute inflammation. Both tests are sensitive for inflammation but not specific. So like you said, a cold or injury will also cause inflammation and increase the markers. But if you aren't sick or injured and your markers increase you must rule out Wegs first. If they're slowly increasing over time there's a good chance that Wegs is becoming more active.

[annekat]

Thanks, Sangye. Those explanations of the inflammatory markers are helpful. And I can do more research.

I did have a little cold, my first time catching anything since dx, back in December. It wasn't bad, and I got over it, but I continued to do a lot of coughing, and I was feeling it may have stirred up the Wegs a little. I've gotten pretty familiar with how my Wegs feels (which could change, I realize), and as time went on I felt more and more like I was having a flare, even though I'd never had one. There were a few little red spots of "Wegs rash" on my forearm. Like only 3 or 4! But I'd seen them before and was pretty sure what they were. And I was having night sweats, not usual for me. And more blood in the mucus. Fatigue. Etc. The doc thought I seemed pretty good but that I might be having a small one; the blood test showed more inflammation than he expected and pretty much validated what I was feeling. I always like feeling like I was more right than he was.

To answer your question, yes, it has now been a couple of weeks on the increased MTX and I do believe I am feeling better! And after the first week, since I was having breathing problems from the nasal junk getting into my bronchii, he upped my pred from 10mg to 20mg for at least a week. That seemed and felt like a lot, but I secretly did want more pred, and I am now on that for a few more days and feel that it is also helping.

Finding a WG specialist, for me, will probably mean finding a very good rheumy who routinely consults with top Wegs specialists. I have a line on such a rheumy in Seattle, who consults with Dr. Langford at CC, and have been talking with various forum members about this. A forum member who has had Wegs for a long time goes to this doctor and recommends him. I only hope it is not too hard to get an appointment, that he takes Medicare, etc. Being at the UW med school teaching hospital, I would imagine he does. I will keep you posted, and thanks for your encouragement.

[Sangye]

Sounds like everything is moving in a positive direction-- yay for all that! :thumbsup:

When I have a gut feeling about part of the treatment (eg the pred needs to be higher or lower) I tell Dr Seo. Sometimes he has a strong opinion about why he's right but a lot of the time he says we should go with my gut. If he has a strong opinion he always has good reasoning behind it so I generally go with it. We do "arm wrestle" about some stuff, as he calls it. LOL We're becoming like an old married couple!

[annekat]

Sounds like everything is moving in a positive direction-- yay for all that! :thumbsup:

When I have a gut feeling about part of the treatment (eg the pred needs to be higher or lower) I tell Dr Seo. Sometimes he has a strong opinion about why he's right but a lot of the time he says we should go with my gut. If he has a strong opinion he always has good reasoning behind it so I generally go with it. We do "arm wrestle" about some stuff, as he calls it. LOL We're becoming like an old married couple! Dr. Seo sounds like a sweetie. I know what you mean about the gut feeling. I was getting ready to suggest more pred to my non-specialist doc, and thought he might bite my head off, so I was surprised when he doubled my dose, temporarily, before I even asked. I have done a little light "arm wrestling" with this guy, too, and have, from my point of view, proved him wrong on some occasions. But I don't know that he remembers them that way and I try not to act like I won and he lost.

[Sangye]

LOL I try not to rub it in when I've been right. If he starts going down the same road though, I give him The Look that says, "We've been here before." :biggrin1:

[HopeinTN]

I'm so excited that I will get to meet Dr. Seo tomorrow morning for my first appointment!

[Sangye]

Me too. More like "so very very relieved." LOL