It's definitely a flare up

[MikeG-2012]

Hello everyone. About six weeks ago I posted that I was going back on the pred to see if the sinuses would calm down, and after the taper if they stayed OK, all was good. Well, it's back to flared up again. Yesterday, I had so much facial pain I couldn't hardly walk. All I wanted to do was crawl in bed and cry. My wife took me to the ENT at 7:30 am and he said since last Thursday, they were really bad again. I was also coughing and wheezing, so he ordered a chest X-ray, and something there gave them a enough of a worry that today I have a lung CT scan scheduled. Pain is almost under control now that I have a pain patch on my arm. It helps that I've spent the last 18 hours resting and/or sleeping finally too.

All indications point to a Wegeners flare up, even though the ANCAs are all still good.

so if you area the praying type, say one today for me will you, please?

MikeG-2012

[Pete]

Hope your docs can get the pain and this flare under control pronto.

[annekat]

So sorry to hear this, and I hope they can do something to control the pain and get you headed back into recovery. I know ANCA's can look pretty good but you can still be flaring, because this happened to me. Will say a prayer, in my way.

[NikkiNicole]

I'll be praying very hard for you!!!

[MikeG-2012]

Update:

CT scan showed significant lesions from Wegeners again. I start emergency Rituxan infusions in the morning. Good news is that since my deduct able and out of pocket are reached for this year, insurance should be covering all of it. That said, I'm still pretty scared at this point. The plan is for a treatment a week for the next four weeks. I was told to expect to be off work for about a month. Does that sound reasonable to those of you who have had RTX? Do I need to be off that long?

Can any of you give me real world expectations of what I might go through in the next week or month? I'd like to have some clue as to what to expect. Doctor gave me a few from the med side effect list, but I thought some of you might be able to give me a little more specifics. (Day 2 - crash, etc,)

thanks for for the kind thoughts and prayers, all we're appreciated!!

Mike

[Pete]

Hi Mike,

I've just completed two rtx infusions (two weeks apart). I had no side effects while the infusions were administered. I was just a little more tired than usual the next day, but not so tired I couldn't do what I usually do. Two days after the first one found my wife and me driving almost 600 miles to Memphis. Three days after the second, we drove 350 miles to central Illinois for a wedding.

I was given solu medrol (steroid) and ibuprofen with both infusions. Since I take a daily antihistamine, they did not give me Benadryl.

I am generally able to tolerate meds with no difficulty. Rtx was no exception.

Having said the above, I'm retired, so I can avoid sick people who might share their germs with me. Sounds like your doc may be giving you a worst case scenario.

[pberggren1]

If you are getting 4 infusions to treat a flare most likely you will feel like crap after the first infusion then feel good after the 4th one but everyone is so different so there is no way of telling.

[Alysia]

Hi Mike,
I feel for you, I know it can be too scary to have a flare and also to be before the unknown of the RTX. I was also madly frightened. but I can tell you that you can go and have it peacfully. if you have someone you can trust to hold your hand, then it is much easier. we are also holding your hand.
the day of the infusion is just long and can be boring. you will be there about 7-8 hours. the meds are making you very sleepy so in most cases and if you are calm enough you can just sleep untill it is over.
the only reaction I had was lowering of my blood pressure so I drank a lot and ate chocolate to elevate it.
the day after, I was already working. but because I had to. If you have a choice it is better to rest. all that month I was feeling exhausted and aching. but maybe because I didnt rest enough.
and remember that the outcome is very favorable. RTX is a miracle. it clears wg symptoms amazingly.
good luck and update us.
I am sending you my praying :hug2:

[MikeG-2012]

Hi Mike,

I've just completed two rtx infusions (two weeks apart). I had no side effects while the infusions were administered. I was just a little more tired than usual the next day, but not so tired I couldn't do what I usually do. Two days after the first one found my wife and me driving almost 600 miles to Memphis. Three days after the second, we drove 350 miles to central Illinois for a wedding.

I was given solu medrol (steroid) and ibuprofen with both infusions. Since I take a daily antihistamine, they did not give me Benadryl.

I am generally able to tolerate meds with no difficulty. Rtx was no exception.

Having said the above, I'm retired, so I can avoid sick people who might share their germs with me. Sounds like your doc may be giving you a worst case scenario.


Thanks Pete. That is what I was looking for. I'm a pretty strong person as a whole, so I hope my experience is like yours. I think the four in four weeks, doc may be guarding me a little from my job on a college campus. Although I am put of main stream traffic of the college, I still work where there hundreds of people every day.

Thanks for the reply!

[Alysia]

Hi Mike, we just post here at the same time :rolleyes1:

[MikeG-2012]

I'm siting in the infusion chair with an hour to go. So far, so good! Looks like I'm going to tolerate the RTX just fine, yea! 1000 mg down, 3000 to go in the next three weeks!

Mike

[MikeG-2012]

It has been a week already from my first RTX infusion, and so far so good. Went to work for 4 hours on Tues and We'd, and felt really great. 80mg of prednisone seems to be taking care of sinus issues and giving me some breathing relief. It felt so god to just get out of the house. I'm going to argue with doc today and tell him I'm safer at my office than in a house full of projects that need to be done. We'll see how far that gets me. LOL! I Hinkle he sees that. I work on a college campus and is worried about colds, etc. I'm so far removed from general traffic though that I'm not overly worried.

My ride will be here this morning to take me for week 2 of 4 of the RTX treatments. Let's hope that this week goes as good or better than last week. It sounds cliche, but I believe that the positive things I am hearing about RTX have given me a new outlook and the emotional boost Me and my family so desperately needed!

Have a great day everyone!

MikeG-2012

[Pete]

It has been a week already from my first RTX infusion, and so far so good. Went to work for 4 hours on Tues and We'd, and felt really great. 80mg of prednisone seems to be taking care of sinus issues and giving me some breathing relief. It felt so god to just get out of the house. I'm going to argue with doc today and tell him I'm safer at my office than in a house full of projects that need to be done. We'll see how far that gets me. LOL! I Hinkle he sees that. I work on a college campus and is worried about colds, etc. I'm so far removed from general traffic though that I'm not overly worried.

My ride will be here this morning to take me for week 2 of 4 of the RTX treatments. Let's hope that this week goes as good or better than last week. It sounds cliche, but I believe that the positive things I am hearing about RTX have given me a new outlook and the emotional boost Me and my family so desperately needed!

Have a great day everyone!

MikeG-2012

"98% of this game is half mental." -- Yogi Berra

[annekat]

Mike, I'm glad to hear you being so upbeat, and that you are tolerating the RTX so well and feeling like getting back to work. Here's hoping the second round goes as well as the first, and there's no reason it wouldn't!

It's also nice when high dose pred clears things up like that... I remember that from before I was diagnosed, and just kept having one sinus infection after another, along with a lot of voice problems. I could barely talk sometimes. I was prescribed antibiotics, but pred was what worked the best to clear up those symptoms fast. Of course, the RTX will work and then you'll be able to lower the pred.

[MikeG-2012]

Mike, I'm glad to hear you being so upbeat, and that you are tolerating the RTX so well and feeling like getting back to work. Here's hoping the second round goes as well as the first, and there's no reason it wouldn't!

It's also nice when high dose pred clears things up like that... I remember that from before I was diagnosed, and just kept having one sinus infection after another, along with a lot of voice problems. I could barely talk sometimes. I was prescribed antibiotics, but pred was what worked the best to clear up those symptoms fast. Of course, the RTX will work and then you'll be able to lower the pred.

Thanks Anne! As much as I DETEST the pred, it does work miracles sometimes. It's too bad I puff up like the stay-puff marshmallow man from Ghost Busters! I had a feeling three months ago when the sinus headaches turned into migraines, that the disease was back--despite all the blood work showing all ANCA counts negative. Sinus is my trigger indicator. The staff infection in sinuses is a particular nasty one that keeps migrating and becoming more antibiotic resistant. Since I'm allergic to penicillin and sulfa drugs, we've had to go with a topical rinse delivered through the nose 2x a day. I still am a HUGE advocate of nasal rinsing. If people have this disease and have nose issues and crusting are not rinsing, then they really need to. I think that is one of the things that has allowed me to keep fighting this awful disease.

Thanks for the reply.

MikeG-2012

(From the oncology department in Monroe, WI)

[Debbie C]

Hi Mike ..just read the whole thread..sorry you had a flare up but am so glad the rtx is working well with you and you are having no problems. I will say a prayer that the rest go just as good and you are better soon.

[MikeG-2012]

Two RTX down, two to go! I feel good leaving here. If I did not have the IV Benadryl, I would be fine! Time for a nap until my 2:30 appointment! (-8

[drz]

"98% of this game is half mental." -- Yogi Berra

Like Yogi said, "it is hard to predict things, especially the future."

[sectech1]

Saying a prayer for you! I am tapering off pred too, down to 20 mg for a month, then 10 mg I guess. I have ear issues, and sinus trouble too, hope they don't get worse!

[MikeG-2012]

Saying a prayer for you! I am tapering off pred too, down to 20 mg for a month, then 10 mg I guess. I have ear issues, and sinus trouble too, hope they don't get worse!

Thanks for the prayers. I do know that they help.

I think this is where Phil and I gang up on you and give you the dissertation on "Proper Sinus Health Through Irrigation". OK Phil, I started it; you're up!! LOL!! :rolleyes1:

In all seriousness, without the three liters of saline I run through my sinuses twice a day (yea, almost two gallons), my sinuses would be a solid crust from front to back. I've noticed now that the weg is starting to get under control, my ear is opening up more too. Looks like it might be a good month after all for my nasal health at least. Now, if I could only get a good breath of air every time, that would be a fantastic thing.

[annekat]

Thanks for the prayers. I do know that they help.

I think this is where Phil and I gang up on you and give you the dissertation on "Proper Sinus Health Through Irrigation". OK Phil, I started it; you're up!! LOL!! :rolleyes1:
In all seriousness, without the three liters of saline I run through my sinuses twice a day (yea, almost two gallons), my sinuses would be a solid crust from front to back. I've noticed now that the weg is starting to get under control, my ear is opening up more too. Looks like it might be a good month after all for my nasal health at least. Now, if I could only get a good breath of air every time, that would be a fantastic thing. I, too, can testify to the fact that, the more saline irrigation at one time, the better. I remember my ENT years ago, before WG dx, frowning at me doing the rinse more than twice a day, once in the morning and once at night. And the directions with the NeilMed may say something to that effect. But I know better now.... the big stuff will usually not come out without several rinses in a row! You may not even know it is in there! You will feel it loosen up little by little and then will be glad you did multiple rinses.

3 liters twice a day is a lot, Mike! I've often wished the NeilMed bottle was bigger. I just picked up a new one and noticed in the literature that there is a new product, a battery operated pulsating model, and I wonder how much it holds. I've seen mention of pulsating irrigation appliances from other companies, too, on the web. And then there is Phil's Water Pik method. Right now, finances dictate that I stick with the basic NeilMed model and do multiple rinses. Once I get a bunch of big stuff out, I can go easier for a couple days or more.

[pberggren1]

Right now I usually just do 2 liters twice a day but sometimes 3 times a day.

[MikeG-2012]

Right now I usually just do 2 liters twice a day but sometimes 3 times a day.

Not much of a dissertation Phil! (-8

[pberggren1]

One word: WATERPIK

[annekat]

We are all going to have to try the WaterPik!

[pberggren1]

Of course.....it is so much fun.....:thumbsup:

[MikeG-2012]

3 liters twice a day is a lot, Mike! I've often wished the NeilMed bottle was bigger. I just picked up a new one and noticed in the literature that there is a new product, a battery operated pulsating model, and I wonder how much it holds. I've seen mention of pulsating irrigation appliances from other companies, too, on the web. And then there is Phil's Water Pik method. Right now, finances dictate that I stick with the basic NeilMed model and do multiple rinses. Once I get a bunch of big stuff out, I can go easier for a couple days or more.

Yes it is a lot of rinsing, but it is what I have to do to keep my crusts clear and sinuses clear. My ENT said he's never seen someone so diligent in trying to help himself. Yesterday, he spent time in the sinuses clearing out the big pieces that don't come out when I rinse. What it boils down to is my insurance is paying for a endoscopic nose picking once a week for a while until the weg flare goes down and the sinuses start to go back to "my normal". I joked with him yesterday when he pulled out a really big one, and gave him my best Bulliwinkle impression, "Nothing up my sleeve." The MA, the doc and me all had a great laugh at that one! Glad he has a great sense of humor, because he kept going for another 15 minutes afterwards. I don't think there's been an office visit with him when he hasn't ahead the endoscope up in my sinuses and done something to help me keep a clear airway. That's why I cringe when people here post about the ENTs that are doing nothing for them. Mine is exceptional.

i started using a SinuPulse Elite machine right after diagnosis, and burned that up with pouring water into it. What I realized after I burned it up is that the $49.00 water pick that is sold at CVS has the same tips. I've been using the water pick for a while now. The basin holds a liter at a time. The nice thing about the bigger hopper of water is that you can run a longer stream for a longer period of time through. If I had to do three liters 2 time a day with a squirt bottle, I'd go NUTZ! I run the first basin to loosen up stuff, blow gently a few times, and then use the other two basins full to keep doing the same. I mix saline myself in one of the big Pampered Chef pitchers with the plunger/mixer in it. Recipe for saline I got from my ENT. The other nice thing about the constant stream is that you never flood your ear by squeezing the bottle too hard. I was doing that all the time with the NeilMed bottles. The stream is less, and I even have a conversation with my wife while rinsing. It's far more gentle, and less abrupt than the bottles.

And, I also learned lately that you can use the tube part of the NeilMed bottle on the cut off end of one of the water pick tips that comes with the machine. Simply cut off so it's flat, and stuff the tube that goes in the bottle over the end. So for folks where finances are tight, $50 will get you into a water pick that you can buy locally at CVS.

Trust me, once you've used the water pick device, you'll never go back!

So, want more of the dissertation yet? ROFL!!! (How'd I do Phil?)

[pberggren1]

You pass with flying colours Mike......:thumbsup:

There are days when I think I have got everything out then later on in the day I feel something in there I try to pick out and nothing is there. So then I rinse a few times with 2, 3 and 4 liters.....then BAM, the mother of all boogers comes out......4 inches long, 2 inches wide.....YIKES. This happens at least once a month besides the many regular large boogers I get out each evening and morning.

[MikeG-2012]

You pass with flying colours Mike......:thumbsup:

There are days when I think I have got everything out then later on in the day I feel something in there I try to pick out and nothing is there. So then I rinse a few times with 2, 3 and 4 liters.....then BAM, the mother of all boogers comes out......4 inches long, 2 inches wide.....YIKES. This happens at least once a month besides the many regular large boogers I get out each evening and morning.

Holy Crusts Phil-man! You have my record beat for big crusts!

I know it's not funny Phil, but I really needed that smile today. Just the thought of what you wrote made me smile, because my wife usually rushes to the sink when I yell, "OMG, where did that one come from?" Yours would have stopped that practice in her tracks--pronto!

I bow to the oh Jedi-Cruster!!!!

Mike

[annekat]

Thanks, you two. Yes, having a reservoir of a liter at a time sounds SO much preferable to filling that little NeilMed bottle over and over again. I guess NeilMed is not thinking of Weggies, but they need to get a clue that we need something bigger, and maybe with better tips. I will try to set aside $50 for a WaterPik.... not this week, but when Christmas pottery sales start to kick in.

My ENT will dive in at a moment's notice to extract the deeply entrenched boogers. But I don't see him very often any more. Maybe it's time for a visit. I don't think mine are quite as bad as either of yours, overall, but I just might be surprised....

[SpaceflightAddict]

There is nothing quite as satisfying as my ENT grabbing the endoscope and going digging for gold. It's too bad that my sinuses have stopped crusting up, I really enjoyed the deep cleaning that I was getting. At my last appointment he said he does not need to see me for at least three months since everything is healing so well.


I must look into this Water Pik, I am getting tired of refilling the NeilMed bottle over and over again.

[annekat]

There is nothing quite as satisfying as my ENT grabbing the endoscope and going digging for gold. It's too bad that my sinuses have stopped crusting up, I really enjoyed the deep cleaning that I was getting. At my last appointment he said he does not need to see me for at least three months since everything is healing so well.


I must look into this Water Pik, I am getting tired of refilling the NeilMed bottle over and over again. Andy, it seems like you are healing and recovering exceedingly well, given the amount of damage it sounded like you had in a short time. I don't think my sinuses will EVER stop crusting, although at this point it is not so much crusting as just great big blobs that just keep coming! Still lots for the ENT to dig out if I didn't do the multiple rinses. I think it has lessened some, though, over the last year or so.

My ENT does not give me the feeling that my "sinus destruction" can ever repair itself; the lost bone cannot be rebuilt, etc. So there will always be extra space in there to become filled with mucus. That is my take on it, anyway; I really have no clue what it looks like or what is going on in there. In your case, it happened very fast, and you were dx'ed early, as I remember, so maybe the tissues involved have deteriorated less and can regenerate themselves more easily. I hope so.

[SpaceflightAddict]

Andy, it seems like you are healing and recovering exceedingly well, given the amount of damage it sounded like you had in a short time. I don't think my sinuses will EVER stop crusting, although at this point it is not so much crusting as just great big blobs that just keep coming! Still lots for the ENT to dig out if I didn't do the multiple rinses. I think it has lessened some, though, over the last year or so.

My ENT does not give me the feeling that my "sinus destruction" can ever repair itself; the lost bone cannot be rebuilt, etc. So there will always be extra space in there to become filled with mucus. That is my take on it, anyway; I really have no clue what it looks like or what is going on in there. In your case, it happened very fast, and you were dx'ed early, as I remember, so maybe the tissues involved have deteriorated less and can regenerate themselves more easily. I hope so.

I am still getting mucus coming out, but it is thin and watery and clear now when I do my rinses. I think I am keeping it moist enough in there that nothing ever gets the time to crust up. Ever since I started using a saline gel spray at night, it seems like things flow from my nose much easier the next morning. I do have some bone destruction in there, so like you things will never be the same, but my ENT is very happy with how things look in there all things considered.

I see a separate ENT in the same office for my ear and hearing issues, and he is not as optimistic as my sinus ENT unfortunately. My left ear got tore up hard, and will never work the same again for sure. Some sort of surgery on my ear is most likely in order once the wegs is in remission. You should read the CT scan and MRI reports from my hospitalization, its pretty gruesome.

[Alysia]

You pass with flying colours Mike......:thumbsup:

There are days when I think I have got everything out then later on in the day I feel something in there I try to pick out and nothing is there. So then I rinse a few times with 2, 3 and 4 liters.....then BAM, the mother of all boogers comes out......4 inches long, 2 inches wide.....YIKES. This happens at least once a month besides the many regular large boogers I get out each evening and morning.

I add my applause to Mike's bow :thumbup:
you are an expert, Phil, in rinses and boogers, as well as your other expertises :wink1:

when I have the feeling that something really big is inside and refusing to get out, I just wait day or 2, trying to breath "between", and then I can blow it out after hot shower.
I don't use rinses at all, I can't bear them because of my ears.
I must say that RTX is clearing my nose more and more. especially now after the 2nd round of it.

[drz]

We are all going to have to try the WaterPik!

They had a battery one that was piece of junk but they may have fixed the design flaw by now. The batteries in it corroded and killed the unit within a few weeks.

[MikeG-2012]

They had a battery one that was piece of junk but they may have fixed the design flaw by now. The batteries in it corroded and killed the unit within a few weeks.

The battery ones were worthless, because they held almost the same amount as the squeeze bottles. Didn't want to admit that I had tried one of those once. Complete waste of money. All that extra cash JUST so I didn't have to squeeze the bottle! I felt robbed! (-8. LOL!

[MikeG-2012]

UPDATE:

Week three is here! Tomorrow is #3 RTX infusion. In the past two weeks, I've been feeling stronger every day. The lungs are still down quite a bit, and its hard to get a good breath some times. But, I feel like there is a little improvement every day. I still get winded very easily though. I managed to go back to work part time and have been OK doing so. Walking around campus has been a chore, but it gets me out in the fresh air, up and active, which I wouldn't be doing at home. Sinuses are clearing pretty nice too. All in all, its been a decent few weeks. I relly get tired quickly--crash is more like it. The crashes seem to sneak up on me and get me by surprise. I'm intentionally not trying to over-do it this time and get the recovery I need, so the crashing is surprising me how fast it comes on.

More updates to come...

[Il_Randyb]

Congrats on Week 3 of RTX, I had 4 infusions this summer and all went well for me. On imuran now and Wegener's is under control.

WRT sinus clearing, I had sinus surgery summer of 2012, did not realize I had Wegener's then. The surgery opened up my sinuses and once we got Wegener's in check my sinuses cleared dramatically. Now I learned a lot during that time about how to help myself. I used the neti pot, the neti bottle and never liked them much at all. Then my wife came home with some saline solution in an aerosol can. Once I figured out how to use it properly WOW!!!! For me a hot shower is required, I wait till I am finished with everything else and then I grab the saline solution and spray it up each nostril. I hold it in for a while to let things loosen. The host shower steam helps a ton as well. Then I blow one nostril at a time and I can tell if it is flowing free or if something is in there. I do that routine several times until I am sure it is all clear or I think if i try harder I'll just cause a nose bled. For the former case what happens is later in the day it loosens up and comes out when I blow my nose.

This method has worked well for me and my sinuses are only a minor nuisance at this point.

You can buy these aerosol cans at Walgreens I know for sure btw.

[annekat]

I'm glad to hear things are going so well, Mike! :thumbup:

[MikeG-2012]

I'm using 3 liters of saline twice a day through a waterpik. I'm well versed on sinus health! (-8. Mine are more than a nuisance, and I am afraid, will be for the life of this disease...

I'm glad to hear that others are and have done well after RTX. I'm looking forward it finding a normal again...

[MikeG-2012]

Thanks Anne! Just have to not give up. A month ago, I was almost there when the ungodly headaches were completely and utterly consuming me. Now, HOPE!!!!!

[annekat]

Thanks Anne! Just have to not give up. A month ago, I was almost there when the ungodly headaches were completely and utterly consuming me. Now, HOPE!!!!! I remember some pretty bad headaches, too. A thing of the past! And I'm glad you mentioned the WaterPik. That is going to have to be on my Christmas list for myself.

[MikeG-2012]

Week 3:


I am so glad that today was a good day. Yesterday was awful! I "Hammied Out" all day from the pred. (If you haven't seen the movie Over the Hedge, please do so. There is a squirrel in the movie named Hammy, which is a perfect example of a person high and flying on pred.). Anyway, after a day of Hammy, I got home and had the emotional and physical crash from the pred too. Raged at the pile of dished on the counter, raged at the dogs for just about everything that they were doing to intentionally tick me off, cried at my raging, raged some more, cried some more... It was an awful night. I am a very emotionally calm, even and stable person, and yesterday just killed me to be like that. I know it's the pred, but the fact that I can't do anything about it makes the downer of the rage episodes even more emotional. I really hate Prednisone! Good news that I slept good last night and woke up this morning to a brand new day.


The infusion went well again today. The Benadryl hit me a little harder than normal today, and was for the first time pretty sleepy/dopey at the end of the treatment. That might have something to do with the lunch too. The clinic where I've been having the RTX includes cafeteria lunch if you are scheduled over the lunch hour. Today, I "fed my pred" with a hot roast beef sandwich with mashed and gravy, chilli, and French silk pie--yummy. Did I mention that the cafe at the Monroe clinic is fabulous!


Problem is that now that it is after 11:00 p.m., I'm still up, wide awake, and am scheduled to go into work in the morning. So all of you get a not so short post from the insomniac...


My rheumatologist showed my wife and I the CT scan from three weeks ago, and it was ugly. Left lung showed a hole/pocket about the size of a golf ball, and right one had a similar hole, albeit a little smaller. I asked what to expect from these, and the doctor said that he hopes that over time, that if the wegs stays in remission, they will heal themselves. I hope and pray that they will. Got good news that I get to taper my pred back from 80 to 60 this week and to 40 after my infusion next week. I'll stay on 40 for a while for the lung issue, but I will take 40 over 80 any day. We talked about me being a failure of the drug Mychophenolate as an immune suppressant. After a month off the RTX, I will be starting a new immune suppressant, which I forgot the name of already. My choices are somewhat limited because a good number of immune suppressants are sulfa based, and I am allergic to them. This one is an older transplant drug that is not used for that anymore, but is still used in rheumatology offices regularly for vascular diseases and immune suppression. I'll post the name if I ever remember it.


Went to the ENT later in the afternoon for my weekly nasal clean out and he said that the sinuses are looking better than they have in about three months. There's still crusting going on, but he thinks we now just may be getting ahead of the staff infection and wegs for the first time in a long time. Next week, same routine; infusion followed by ENT visit for a check and cleaning. A note to all of you who have regular nose endoscopy by your ENT: Take your rinse stuff with you and rinse immediately prior to your appointment. It really helps them remove the crusts and your nose won't bleed from their removal either. My ENT is very happy to wait a few minutes before they numb me up to do this. Makes his job easier if I'm more comfortable with his pokinig and prodding too. I take enough supplies to rinse out after the procedure too to get out all the loose stuff he leaves behind. I walk out of there feeling like I could drive a truck from sinus to sinus with my airways completely open. Feels so good!! (-8


Anyway, I think that's probably enough for tonight. Hopefully more good news next week too.


Have a great night evereyone.


MikeG-2012

[Pete]

Good to hear things are looking up for you, Mike. Hope it continues.

I haven't had the pred rages you describe, but have had the wakefulness and difficulty getting to sleep. I found that taking 3 mg of melatonin 60-90 minutes before bedtime helps me get to sleep. It also helps if I get some light cardio exercise (walk for about 30 minutes) during the day.

Good luck and better health!

[annekat]

I'm also glad to hear it's going well, Mike. The "pockets" in your lungs sound a lot bigger than anything in mine, which were described as "numerous small cavitary lesions". Others have had "nodules". I guess it happens a bit differently for everyone. I'm glad to hear there is a decent chance of them healing.

80mg. would be a lot of pred to be on! I've never been on more than 60mg. I don't think I was ever like Hammy, but I do remember some pretty good rages coming out at unexpected times. Even at 10mg., I sometimes rage at my cats for being annoying.

I don't remember hearing about any of our immunosuppressants being sulfa based. I've only heard about Bactrim, a preventative antibiotic that many of us take, being sulfa based. But your docs know more than I and maybe someone else can speak up and clarify this for me.

I, too, sometimes use melatonin to help me sleep, but only take .75mg, not the 3mg. that Pete takes. Perhaps the 3mg. would work better for you. It is readily available here on grocery store shelves and is inexpensive.

Best of luck for continued progress!

[MikeG-2012]

Week 4, Treatment 4 -- A Reason for Thanksgiving

Yesterday was my final RTX infusion. Everything went great. IV site this morning is smaller than the prednisone pimples on my arms. I learned that a good can of caffeine pop overcomes the Benadryl drip pretty well. Overall, my experience with the Rituxan has been a good one. I never had any side effects, and felt fine leaving the clinic. Now the wait is on to see if this takes, and I can have some lasting relief for a little while. The past twenty months since being diagnosed, has been more difficult than I could have expected. It has changed me, my family, my plans, and given me a whole new perspective on what is really important in my life.

So, this Thanksgiving, I'm thankful for many things. First, I'm thankful for my faith, and that is all I will say to keep this within the rules. Second, I'm thankful to my lovely wife and best friend, without whom, I would have never made it through all of this. And lastly, for all of my friends and co-workers who have been so supportive this past twenty months.

Happy Thanksgiving Everyone!!

Mike

[Jules]

Having just read this thread from the beginning, it's great to hear that you are feeling so much better Mike.:biggrin1:

I couldn't agree more about giving thanks to our 'nearest and dearest' (colleagues included in that!) - I know we didn't choose to be as 'special' as we all are. . . but nor could they ever have envisaged playing such an important role themselves, being our 'rocks', supporting us in some of our darkest times!

As I sit here (enjoying what I have to say is a rather nice glass of red!) I raise my glass to all those who are supporting someone with this disease. . . to our 'Wegs Rocks' . . we couldn't do it without you!

Julesx

[MikeG-2012]

Having just read this thread from the beginning, it's great to hear that you are feeling so much better Mike.:biggrin1:

I couldn't agree more about giving thanks to our 'nearest and dearest' (colleagues included in that!) - I know we didn't choose to be as 'special' as we all are. . . but nor could they ever have envisaged playing such an important role themselves, being our 'rocks', supporting us in some of our darkest times!

As I sit here (enjoying what I have to say is a rather nice glass of red!) I raise my glass to all those who are supporting someone with this disease. . . to our 'Wegs Rocks' . . we couldn't do it without you!

Julesx

Thanks Jules! I am feeling better. Still fatigue pretty easy, but with diminished lung function, I guess that is to be expected. Every day is a small improvement; some days smaller than others.

I have to say that when I was in a lot, and I mean A LOT of pain, when my sinuses were flaring to epic proportions, my wife and co-workers were dealing with a steroid ridden, irritable, crabby guy. Somehow, they saw past the exterior and realized what I was growing through and helped me cope though it.

The people that support us weggies all deserve medals!

MikeG-2012

[Happy Camper]

Hi Mike,
I just ran into your thread and can't believe I'm going through the same thing as you. I was in remission for 3 yrs and then on Nov. 9th they came back. Nodules in my lungs. Back on 60mg Pred and 4 treatments on RTX. I had 2 so far. I also seem to be tolerating them well. Hardest part is the pred and dealing with my "normal" life of being a wife and mother of 3 small kids. Glad you here your doing well and I hope your new meds keep you in remissin for a long long time! Thanks for posting your story!

[MikeG-2012]

Week 5 - Pimples, Cramps, Bloating and Fatigue

It has been a week since the last RTX infusion and the taper of the pred to 40 mg. Now, the fun begins. After tapering off the pred from 80 to 40 in two weeks, I'm noticing that I'm not so invincible. My breathing is a little for the worse after the taper to 40, and I notice that I am fatiguing a lot more walking at work. Oh, and did I mention that My skin looks like a teenager? Prednisone Pimples everywhere! I thought I was done with those 30 years ago! ARRGH! I did notice that if I use my tea-tree dandruff shampoo on my forearms! sides and back! it is helping to diminish the pesky little bumps.

The past week, I've been waking up feeling fatigued in my leg muscles a lot more than usual, and overnight, I've had a few more leg cramps than normal. I'm noticing too that I must be retaining a lot of the water that I am drinking, because my feet, calves and ankles (which I've been calling cankles) are showing some noticeable swelling as the day progresses. Hopefully, this will pass as my body gets used to the lower dose of pred, and the bloating can start to subside.

Overall, I'd say this week feels like a wash--no noticeable improvement. I see the docs next week, and will have another chest x-ray to see how the lungs are doing. So, for this week, slow and steady is my game plan.

MikeG-2012

[Dirty Don]

Be patient, the pimples go away with pred reduction, fatigue comes and goes no matter what, best of luck next week!

[Pete]

Hey Mike,

Have you had your kidney function, blood pressure and heart checked out lately? I'm concerned that your symptoms (fluid retention and shortness of breath) might be associated with kidney involvement or congestive heart failure. Just because we have wegs doesn't mean we can't have other problems. Whatever is going on, I hope it's fixable/treatable.

Sorry if I'm being too alarmist here.

[MikeG-2012]

Hey Mike,

Have you had your kidney function, blood pressure and heart checked out lately? I'm concerned that your symptoms (fluid retention and shortness of breath) might be associated with kidney involvement or congestive heart failure. Just because we have wegs doesn't mean we can't have other problems. Whatever is going on, I hope it's fixable/treatable.

Sorry if I'm being too alarmist here.

Yes, Pete, we've checked kidneys at every blood test, BP is fine. The shortness of breath is what got me to the doc in the first place. First the chest x-ray, then the CT and then they found out the lungs were flared up this time. So, it's definitely a lung thing, just like my original diagnosis. My PFTs have never come back over 75% since my original diagnosis. Part of it is because of the extra weight I've put on due to inactivity of the body, appetite from the pred, and to be honest, lack of self control. (-8 Food was the ONLY thing that I had that was good during the 4 months of CHRONIC, debilitating headache pain. So, now I have to work it off when I get the pred down and am able to be more active.

Every day seems to be betting a little better. Some days where a little isn't really very much though.

NEVER, NEVER be sorry for being concerned and alarmed at someone's situation. If we all keep an eye on each other, we can HELP each other!!

Thanks,
Mike

[MikeG-2012]

To top off a perfectly mediocre week health wise, we lost our 12 year old Golden Retriever yesterday...



So, this week officially stinks (I have better words for this, but will leave it rated G o the forum)!

Mike

[annekat]

I'm so very sorry, Mike. Sounds like it might have been sudden and unexpected. But either way, it hurts deeply, and ruins your life for awhile. I enjoyed seeing the pictures of your beautiful dog. You have my deepest sympathy.

[pberggren1]

She is very beautiful Mike. I'm sorry for your loss.

[mishb]

I'm sorry that you have had the week from hell, Mike.

It is also sad to lose a loved member of the family and I am sorry for your loss.

I am glad that you are starting to feel a little better, health wise.

Take care

[MikeG-2012]

Thanks everyone for the messages and posts. It's been a rough couple of days. The quiet has been the worst part. Our Lily doesn't bark much (not at all), so the silence in the morning around the house has been deafening. Our dogs are our children, and Cassie was an certainly an integral part of our daily lives. We miss her every minute, every hour.

If I can get through this week, things have to get better, right?

Thanks again everyone!

Mike

[Alysia]

Hi Mike,
I am sorry for your loss. I understand your pain.... and feeling of a "hole"...
she was blessed to have you and you were blessed to have her, so vital and pretty.
take care.

[MikeG-2012]

Latest Update:

Friday, December 13 , I saw the Rhuematoogist and found out what the next round of meds are: Azathioprine! So I start those tonight after I pick them up from the pharmacy. I also found out that the burning sensation in my mouth was "thrursh" and now have a rinse for that (Nyastatin). Tastes OK, but gives me the terrible case of burps for a couple hours after I swallow it.

Prednisone was lowered to 30 and will go to 20 in two more weeks. Then, two more weeks on 20MG Pred and I go back for more blood work and a new chest x-ray.

C-Reactive Protein and Sed Rate are sky high again, I'm worried about those because they were fine after starting the RTX and the higher doses of pred. they were the ONLY indicator that I was flaring up (except for the MAJOR SINUS ISSUES!). My ANCA has been negative in EVERY test since original diagnosis and treatment 21 months ago. Rheumy doesn't seem as concerned as I am though. I'm going to keep a watchful eye to make sure this isn't some marker to me flaring up again. With the sinus infection that is constant, the infection in my mouth, the inflammation markers may mean nothing, but they may mean everything. I'm keeping my spidey senses on high alert in the mean-time.

Hope all of you are having a great week. Thanks for the support and kind words when I was going through a really rough week a few weeks ago. Things are calming down to the new "normal" around our house.

MikeG-2012

[MikeG-2012]

Friday, December 20

OK, this week, I've felt like crud. Partially, I am pretty sure because I have been tapered down to 30MG of pred, and next week, I go down to 20mg. Losing the "go-juice" of the pred has me down quite a bit in the energy level. Wednesday and Thursday, I over did it at the office building a couple of equipment racks and installing them. I paid the price today. I stayed home due to the fact that I didn't think I could do anything productive at the office, plus we had 1/4" of ice last night. I didn't want to be tired and half witted driving in that mess. Worked from home for my 6.5 hours I had to turn in for my time-card, and am now beat/tired/exhausted again.

Since I don't remember the last time I was tapered down on pred, can anyone tell me if it is normal to be this tired and run down while tapering? 5 weeks ago, I was flying high on 80 mg, doing RTX infusions, and now next week, pred goes to 20MG. I have to say that I am pretty concerned that I will be worse at 20 next week, and don't know how I will make it if I feel this tired now. Could this be that since my lungs are not at full capacity, I'm just feeling the fatigue from that? It is really frustrating me to be this tired all the time. Anyone have any thoughts?

Hope you all have a wonderful weekend!

MikeG-2012

[Debbie C]

Mike is probably is a combination from the taper and working too hard yesterday.Once you get leveled out you will start to feel better.
I have lungs issues with COPD and Enphazema and have hard a really hard time breathing the last couple of weeks,so my doc told me raise my pred to 10mg for a feew days and you'll feel better. Well since I just lost 10lbs, I didn't want to start eating everything in sight so I went to 8mg. And today I've been like the energizer bunny.My pumy just prescribed me advair to use so I may try that instead of the pred. Sorry I got off your problem but long story now short....don't over due it and the pred will sort itself out !!!
Nice bike by the way,my boyfriend is thinking about getting a tric. but he has 3 harleys and a custom chopper that he has to get rid of something first....I'm hoping the chopper !!!

[SpaceflightAddict]

Since I don't remember the last time I was tapered down on pred, can anyone tell me if it is normal to be this tired and run down while tapering? 5 weeks ago, I was flying high on 80 mg, doing RTX infusions, and now next week, pred goes to 20MG. I have to say that I am pretty concerned that I will be worse at 20 next week, and don't know how I will make it if I feel this tired now. Could this be that since my lungs are not at full capacity, I'm just feeling the fatigue from that? It is really frustrating me to be this tired all the time. Anyone have any thoughts?


Good Evening Mike!

I don't have any lung issues, but ever since I went below 40mg of pred, it's felt like i've been hit by a truck for a few days every time I taper.

I went from 17.5mg down to 15mg earlier this week, and I am doing better now, but it hits me for a few days every time without fail.

The roughest patch I hit was when I went from 40mg to 30mg, it took almost a full week for me to get back to feeling somewhat normal then.

I don't know if I am overly sensitive to the change of dosage, of if it is par for the course. I have talked to my rhumey a couple of times about it, and she told me not to worry about it too much as long as I bounce back after a couple of days and my wegs symptoms don't return.

[Pete]

Hey Mike,

I've been tapering at 5 mg/wk from 60 down to 25 starting tomorrow. Haven't had much problem with it. I'm retired, so I can set my own pace on things. Biggest problem I've had is cramps in my hands.

Once I get down to 20, I'll talk with my rheumy about new taper rate. Probably will be 2.5 mg increments. I'll probably go slower (2-4 weeks between reductions) to see how I feel at each step.

[annekat]

I think of the pred drops in percentages. So a drop from 40 to 30mg is a 25% drop, and a drop from 30 to 20mg is a 33% drop. So you are taking a bit more of a hit on the second one. And a drop from 20 to 10mg is a 50 percent drop, which is why many of us start tapering a lot slower at that point, in terms of mgs. Everyone handles pred a little differently and some can do faster tapers than others. Your doc could be a little more flexible, IMO, by letting you maybe go from 30 to 25mg. I don't know if it makes sense think of it this way or not. but to me, fatigue is very important, especially to those of us who work, and docs should give more consideration to that.

Interesting about the hand cramps, Pete. I get those, too, and a little more lately now that I'm sort of trying to taper. I wasn't sure it was related to Wegs.

[Pete]

Interesting about the hand cramps, Pete. I get those, too, and a little more lately now that I'm sort of trying to taper. I wasn't sure it was related to Wegs.

My rheumy blames it on pred. Working with my hands (household repairs, gardening, assembling grandson's Christmas present) seems to aggravate them. I get some relief drinking tonic water. Tried Tylenol the past couple of times and seem to get quicker and better relief.

[annekat]

My rheumy blames it on pred. Working with my hands (household repairs, gardening, assembling grandson's Christmas present) seems to aggravate them. I get some relief drinking tonic water. Tried Tylenol the past couple of times and seem to get quicker and better relief. I make pottery for a living and have been making more lately, so that makes sense. Interesting about the tonic water, I didn't know that. Think I'll pick some up.

[MikeG-2012]

January 14 Update:

Saw the ENT and the Rheumatologist yesterday. Also had a chest x-ray to see how lungs are progressing.

ENT said nose and sinuses are looking better. Infection is finally starting to show some signs that I might be getting ahead of it finally! YEA! Another appointment and crust cleaning in 2 weeks.

Rheumy showed me the chest x-ray. Big nodule is down from 4.78 cm to 4.01 and is no longer hollow and showing signs of healing. Smaller one (3.26 cm) is almost same size, but starting to show opacity too. So, both are healing pretty well. Doc said maybe a couple more months and they might be completely healed so they won't be seen! I have noticed some improvement in my breathing, but not as much as I would like. Slow and steady is still the plan. I'm holding at 20mg of pred for the next month. With the Azathioprine, the plan is to get me down to ZERO pred in a couple months. We also talked about doing another RTX in six months to re-treat, hoping that it will put me in complete remission. I'm looking forward to that, if everything goes as planned. So, a recheck in a month with the Rheumy. Lets hope I have a good month coming up!

I have to go back to full time at the college in the next couple weeks, as my medical leave is running out. I worked an 8.5 hour day today, and still feel OK. So, I'm hoping this week will be my first 40 hour work week in almost three months. Everyone cross your fingers for me, will you?

Have a great evening everyone!!

MikeG-2012

[Pete]

Fingers and toes crossed, Mike. Hope all goes well.

[mishb]

Good luck Mike.

I hope everything starts coming together........including the pred reduction

[MikeG-2012]

In case any of you want to see my x-rays, here's a side-by-side of November 4, 2013 and January 12, 2014. As you can see, the lesions have shrank some and are now opaque (white), which means there is tissue in the middle, instead of the wegs eaten away holes.

1984

YAHOOOO! :hug3: I figured out how to get the photo into the forum post!! :thumbup: It's a good day!!

Not bad shot for an iPad photo of the doc's screen, huh? (Nothing that a little PhotoShop couldn't correct!)

[gilders]

Hand cramps have been mentioned a couple of replies ago. I seem very sensitive to this when on pred. I'd say reducing pred will only improve the cramps, rather than be the cause of them. The fact that the cramps have started since reduction is probably a coincidence, I'm sure it's the fact that you've been on pred for quite a while that caused them. The quinine in tonic water helps some people but not me. Dr tried me on high dose quinine sulphate tablets as the cramps are really severe with me (hands, feet and legs), but it didn't help.
I also agree with Anne. I look at pred reduction in percentages. When I start to get on to low doses, the reductions are very small and far apart.

[Alysia]

what a lovely idea to share with x-ray of the lungs. mine looks like zebra. maybe we should start a new thread for that. still need to think how to do it.

[MikeG-2012]

Hand cramps have been mentioned a couple of replies ago. I seem very sensitive to this when on pred. I'd say reducing pred will only improve the cramps, rather than be the cause of them. The fact that the cramps have started since reduction is probably a coincidence, I'm sure it's the fact that you've been on pred for quite a while that caused them. The quinine in tonic water helps some people but not me. Dr tried me on high dose quinine sulphate tablets as the cramps are really severe with me (hands, feet and legs), but it didn't help.
I also agree with Anne. I look at pred reduction in percentages. When I start to get on to low doses, the reductions are very small and far apart.

Yes Gilders, the pred was the culprit. Now that the pred is down to 20, I haven't had the cramping issues anymore. I tried tonic water, that didn't work at all. I'm glad they have stopped. Some of the hand and forearm cramps were REALLY BAD. Man do those hurt!!

I hope you are feeling better these days!

MikeG-2012

[MikeG-2012]

what a lovely idea to share with x-ray of the lungs. mine looks like zebra. maybe we should start a new thread for that. still need to think how to do it.

Thanks Alysia. I though if no one has seen one of these before, it might help them understand. Also let me hone my rusty PhotoShop skills a little. It was a little tricky getting the pic to a size and dimensions that the forum software liked. If you want to put one up, I think I can talk you through it in a PM if necessary.

MikeG-2012

[Dirty Don]

Wish my lungs had looked that good at dx...mine looked like fractured glass...

[MikeG-2012]

Wish my lungs had looked that good at dx...mine looked like fractured glass...

At original diagnosis Don, mine were a LOT worse looking than these. They thought originally pneumonia, then they ordered the CT scan. SURPRISE!

This is the newest damage from the recent flare-up.

MikeG-2012

[Alysia]

Thanks Alysia. I though if no one has seen one of these before, it might help them understand. Also let me hone my rusty PhotoShop skills a little. It was a little tricky getting the pic to a size and dimensions that the forum software liked. If you want to put one up, I think I can talk you through it in a PM if necessary.

MikeG-2012

thanks Mike. I need to do a new x-ray and I will try. although there is nothing new I HOPE !

[mishb]

So many people having flares at the moment.......this is just not allowed to happen to my friends :predrage:

It just seems really strange.

Do you think that the colder weather has anything to do with all of these flares?

Does it seem to be happening more in your Winter season than the other Seasons every year?

Just curious :ohmy::unsure:

[MikeG-2012]

So many people having flares at the moment.......this is just not allowed to happen to my friends :predrage:

It just seems really strange.

Do you think that the colder weather has anything to do with all of these flares?

Does it seem to be happening more in your Winter season than the other Seasons every year?

Just curious :ohmy::unsure:

Interesting theory Michelle, but mine started back in July/August when the sinuses started making HUGE problems in my life. Took until late October until they finally realized it was a flare-up. ANCA has always been negative, but Sed Rate and CRP were sky high for all that time. I'm wondering if my ANCA will ever show positive? It hasn't since diagnosis 22 months ago. It's been negative all along.

If anyone else wants to blame it on the cold weather, don't let me stop you! (-8

[Dirty Don]

I'm in Phx Mich...gimme a break...I flared in September last year in mid 100s all month...sighs...I think weather can be a trigger for many reasons, but it isn't a cause of what's happening in a flare, generally speaking. And you're right, it IS strange...looks over shoulder...

[mishb]

Sssshhh Don, don't talk so loud :flapper:

Well it's really hot over here and I don't think any of our Aussie gang are having troubles at the moment ............ I have been known to be wrong though :razz:

Anyhow, if the weather has a small part to play in these flares - I hope it starts to warm up so that everyone starts feeling better :hug2:

[annekat]

I think colder weather is hard on me for dealing with my Wegs. My flare last year was at this time of year, after having gotten and semi-recovered from a cold. This year, I'm not flaring, but am coughing a lot more than in warmer weather, am more fatigued, and am getting a few red dots on my forearms, which are a typical light version of WG rash. Of course, I have been out in the cold a lot, which doesn't help. Lately, it is not all that cold here by many people's standards, but it has been foggy, and all that moisture in the air makes it feel at least 10 degrees colder than it is. It gets right into your lungs, stimulates coughing, etc. Having to be out in the cold can create stress, which as we know, can contribute to flares. This is not to say that weather is a direct trigger for Wegs or that it is always a factor in a flare.

[Dirty Don]

Mich...I'm NOT LOUD, just pompous...LMAO! Thanks for keeping me on the straight and narrow! And you're never wrong, just not afraid!! Ha!

[drz]

I think colder weather is hard on me for dealing with my Wegs. My flare last year was at this time of year, after having gotten and semi-recovered from a cold. This year, I'm not flaring, but am coughing a lot more than in warmer weather, am more fatigued, and am getting a few red dots on my forearms, which are a typical light version of WG rash. Of course, I have been out in the cold a lot, which doesn't help. Lately, it is not all that cold here by many people's standards, but it has been foggy, and all that moisture in the air makes it feel at least 10 degrees colder than it is. It gets right into your lungs, stimulates coughing, etc. Having to be out in the cold can create stress, which as we know, can contribute to flares. This is not to say that weather is a direct trigger for Wegs or that it is always a factor in a flare.

Our weather here today could be really stressful with a blizzard raging with frequent whiteouts of zero visibility and wind chill ranging from minus 30 F to minus 50 F plus wind chills. i would really be stressed out if driving some place today or having to be outside for any length of time. Yet some people are out snowmobiling and ice fishing and enjoying our lovely winter weather. Probably the same people who enjoy golfing at 120 degrees too. I prefer to sit by fire place now and stay warm.

[annekat]

Unfortunately, for me, making a living requires being outside in the cold to sell my pottery. However, if we had anything like your blizzard, drz, the farmers market would be cancelled! Also, sitting by the fire for me means gathering firewood outside, which is physically demanding and stressful, since I can't afford to pay for a cord of wood. However, today I climbed the hill behind my house for the first time in years.... any wood up there would be really hard to get down, but it was a good workout, and felt good! So I guess I need to post that in the workout thread.