Methotrexate/Breathing

[carriej22]

Hi Folks,

Of course this would happen today and not yesterday while I was visiting my specialist. (everything is good by the way - Yay!)

I have been on 25mg of methotrexate since the end of May (injection) I have tolerated it relatively well other than it really wipes me out for a good 36-48 hours after taking it.

I have noticed the past few weeks going up and down the stairs leaves me a bit out of breath - however I have been lazing around a lot lately, have put on weight and I have a bad habit of "holding my breath" when I'm focusing on something so I didn't think much of it.

Today I am noticing a tightness when I breathe. When I breathe normally, it doesn't hurt but when I take a deep breath there is some pain. Almost like it's stretching/burning.. Hard to describe. The sensation is hard to locate - but I would say it's smack dab in the middle of my chest almost right between my breasts, but a bit higher up.

I don't want to go on a big panic - but just wondering if anyone else experienced this. I am not coughing or anything like that and I don't have a sore throat or a fever.

[jola57]

Hi Carrie, I would definitely not ignore the symptoms and get an approintment with your doc. There are many reasons for your chest tigtness/breathlessness and none are pretty. Infiltrates, lessions, infection, fungal infection. Being immuno comprmised can lead to any of these. So see you doc quickly and have him do tests. In my case, I had the same symptoms but then started coughing up blood, which finally sent me to my doc, so don't wait, go now.

[carriej22]

I was initially coughing up blood before diagnosis - I also had "granulomas" on my right lung. I am wondering if because now I am up and doing more if I am exerting myself or something and irritating it? (This was the beginning of June - not sure how long these things take to heal) If I am not doing anything I breathe just fine... This is going to sound funny - but it's the same sensation one would get if they had just blown up about 50 balloons or something. The more deep breaths I take - it seems to ease.

However I will call first thing Monday morning.. My Doc only is in Mon-Weds.

[Lightwarrior]

As a nurse, when you say that you have tightness smack dab in the middle of your chest I get very nervous and think of two things.

1. Heart attack
2. Pulmonary embolism

Neither of these should be ignored. I don't think you should wait for your appointment. I would feel much more comfortable if you went to the ER NOW. Most likely it is just decreased lung capacity but....you don't know that. Please go

[annekat]

That always happens to me, too, something crops up right after I've been to the doctor. When I was initially in the hospital overnight for tests, the internist overseeing me suggested the possibility of Wegs after seeing the results of a CT scan of my chest. Within two days of getting home, I noticed I had a saddle nose that no one had noticed, as well as a big lump near my ear which turned out to be an inflamed parotid gland. I was able to get these checked out right away at my ENT doc's and he did a biopsy of my septum which gave me my dx.

Anyway, do listen to those on here who stress the importance of what you are feeling in your chest. Only you know how it feels, and it's pretty hard to diagnose over the internet. If you have any doubt about the safety of waiting, do go to the ER.

However, I'll relate something that I feel a lot..... it feels like a tightness and constriction of my breathing tubes, and it produces some pretty ugly sounding coughing. But eventually I'll cough something up and I'll be fine. What I think is happening is stuff from my sinuses is dripping down into there and sort of getting stuck, blocking the airflow temporarily. The whole area is irritated after all these months and if there isn't much in there, I get an annoying dry cough, like Don and I were talking about. Eventually it sounds like a wetter cough and something comes up, without blood. It can feel like asthma and shortness of breath, but it doesn't last. If yours is constant and never clears up, I'd worry more. I've also heard that acid reflux can cause asthma-like symptoms, and as we gain weight, we are more susceptible to that.

[jola57]

Carrie, I also had granulomas which caused permanent lesions, it took about 2 to 3 months to clear. I have allways been a shallow breather but even I noticed shortness of breath. This actually is permanent and when I climb stairs I get short of breath. Having said that, one of the good things about being a canuck is the ability to see our docs any time we don't feel right. \i used to see mine almost every other day for at leas couple of months because everything seemed wrong. Go and see your doc, let his/her seretary know that you can't wait for the next appointment and need a consult now since the shortness of breath just feels strange and you know that while on meds that you take, life threatening conditions can happen. Discuss with your doctor the fact that for a while you might need to be able to get appointments quickly untill this disease is better controlled. Remember better be safe than sorry later.

[carriej22]

Well, I went to ER and the wait time was 6 hours... So I ended up coming home again, apparently there was a car accident or something.

It seems like its improved. But now I'm all congested and and a bit stuffy and slimey feeling. I wonder if I didn't disturb something. I'm keeping an eye on it for sure, last thing I want is to get sick again. I guess I'll just see what happens.

[annekat]

Jolanta, the lesions you had in your lungs sound like what mine were characterized as..... I get confused with all the terminology, so it helps to hear someone had something similar to my case. They called them "cavitary lesions" and said there were lots of them throughout my lungs, but it sounded like they were small and individual as opposed to what I'd think of as masses or nodules. But I really don't know. I assume there were granulomas in them but my biopsy was nasal and not in the lungs. Mine also took 2-3 months to show significant clearing. I understand that there is permanent damage, and I still do get out of breath with exertion, but things like going up stairs have improved a great deal.

[pberggren1]

I always call the ER before I go....that way I know what to expect.

[Sangye]

Carrie, your rheumy should have warned you about a potential for an allergic reaction to mtx called pneumonitis. It mimics pneumonia. Your symptoms and timing are classic for it, though they certainly could be due to other things. You need a chest x-ray right away. You must tell them you're on mtx. This is a well-known, not uncommon reaction to mtx. On x-ray it will look like pneumonia. The treatment is to stop the mtx. I had this happen to me and cannot take mtx again.

[carriej22]

Seem to be better today - I coughed up a bit of "stuff" this morning. It was not green or anything.

Had double vision quite bad last night.. Thank god I go see the opthamolgist tomorrow. Will be nice to know what the heck is going on with my eyes!

Doesnt rain it pours... Worst thing is I'm having an event for a non profit club at my house next Sunday.. A BBQ. I don't have time to have weird things going on with my body! How dare it!

[KathyB]

Hi Carrie,

I can't take Mtx, but sounds like you have a few folks with experience sharing their ideas. Hope you feel better soon. Good luck with your eye appt!

KB

[carriej22]

Well, I'm no further ahead. Eyes checked out good other than being a little on the "high of normal" side for pressure. He wants to see me every 3 months (yet another Dr added to the list...) to keep an eye on it, because I do wear glasses or contacts - lately glasses because contacts drive me insane.

Went to the DR.. My family doctor was out, so I had a substitute who was very nice and seemed familiar with wegs. He listened to my chest and of course while I was there everything was behaving. No shortness of breath no coughs no nothings. He looked at my throat and poked and prodded me and labeled me healthy. However, I have another appointment for Monday to make sure nothings going on. He said if I get a fever to get my "little duck tail" (his words, not mine) to the ER. No fever yet.

Today was a terrible day otherwise. It was one of those "I'm not getting out of bed, ever." days. I feel alright now, but man I was beat earlier.

ANNNNNNNNNND to top it all off - a bunch of my co workers are barfing - AGAIN. I just went through this like last month, apparently another wave of some 24 hour stomach bug has hit the shop (theres drs offices in the building, and I blame this!). So now I fear if I get it I'm going to die (drama queen!). What should one expect in the event of a stomach flu? Will it be normal or more severe (since I had rituxan, pred, methotrexate, etc)? I always thought those things kind of expired on their own...

Bring on the colds and coughs and sneezes all day long - just please do not make me puke.

[annekat]

Carrie, your posts are entertaining and funny because of your colorful language and writing style. I wish I could ease your frustration in some way, but don't mind at all listening to you vent. As for the barfing co-workers, I think I'd stay clear of them given that you had a hard time getting out of bed. You need that rest and solitude, except for your hubby, of course. On the other hand, I think it's pretty normal for Weggies not to be at their best in the morning but then be able to rally later in the day. I am that way, and I remember Al talking about that being true for him, too. In any case, you are probably further ahead than you think you are, though I know it can feel otherwise.

I kind of like "little duck tail"! Though I doubt he would have said it to a man! :unsure:

[carriej22]

I must say I definitely do feel better in the evening once the "fog" has cleared. I wonder what that is? It seems like almost like a switch. One second I'm laying in bed being cranky and the next I'm hauling out ingredients to bake a cake. My husband is very weirded out by all this. He never knows quite what to expect when he gets home from work. Some days I've got the house all clean, dinner ready, etc... Other days I'm still in my pjs and the house looks like a tornado struck! He takes it all well though.

I have been avoiding all "public" areas at work such as the lunch room, etc. I don't go back there until Tuesday so I'm hoping it clears out by then. It seems to be running elsewhere too though - have heard of a few people complaining about sickness. I try to avoid everything but sometimes you get sick and you just dont know where it comes from. I have been doing everything possible other than chugging bleach.. So let's hope it stays away.

[annekat]

It could have something to do with the prednisone "kicking in", depending on what time of day you take it. I've heard it takes around 4 hours. I don't get quite as energized by it as some people do, who've told stories of cleaning the house from top to bottom at all hours and getting all sorts of projects done. That's not me; I'm more laid back even on pred. Lazy, even. If I have to get up for something in the morning, I can, but otherwise, I relish my sleeping in and, once up, take my time really getting going on anything.

[pberggren1]

I hope your eye is okay Carrie.

[mishb]

It could have something to do with the prednisone "kicking in", depending on what time of day you take it. I've heard it takes around 4 hours. I don't get quite as energized by it as some people do, who've told stories of cleaning the house from top to bottom at all hours and getting all sorts of projects done. That's not me; I'm more laid back even on pred. Lazy, even. If I have to get up for something in the morning, I can, but otherwise, I relish my sleeping in and, once up, take my time really getting going on anything.

This is me to a tee Anne.......laid back (yep very lazy)
I am up at 6.00am on weekdays though but on the weekend, I get breakfast in bed and then you don't see me until lunchtime

[annekat]

This is me to a tee Anne.......laid back (yep very lazy)
I am up at 6.00am on weekdays though but on the weekend, I get breakfast in bed and then you don't see me until lunchtime I've always had a huge lazy streak, loving to sleep in when I could and spend a lot of time communing with nature and not doing a whole lot. So I guess that's one of the "blessings" of getting Wegs, it gives me an excuse to feel justified in being that way. Too much stress, not good!

[jola57]

I'm with you Anne, I loooove my morning lazy time. Yes, I had the same lesions. I have not had any problems, other than the heavy breathing when going up the stairs or longer walks. So all is good so far. Hope for you too.

[carriej22]

Well update. I don't know what to think.

So after having a bout of coughing fits and basically hyperventilating after walking up 10 steps this morning (remember folks, I am 22 years old) I said that's it. Something is really wrong here. I marched back to my doctors office, told her what was going on.

Her response.. which may be correct, but I told her I felt it wasn't the problem but she wants me to try it anyway.

She thinks I'm having acid reflux (I have no gallbladder, so in the past ive had problems.. but not recently) and that it's burning my lungs/esophagus (My voice is raspy) and that's why I'm having the troubles. She prescribed me an inhaler and a stomach pill. I can't read the prescription to tell you what it is, but when I get it filled tonight I will post the names of them. She also booked me for a breathing test (whatever that entails), but if something is really wrong I will end up in the ER before I ever get the breathing test, as it takes forever to get any kind of testing done. Love free health care here in Canada.. Hate waiting for it.

[Dirty Don]

I have the coughing fits also, they won't go away...a burning tickle on both sides of throat. Doc doesn't know what causes it, ENT says nothing's wrong down there, it seems to be a common complaint of Weggies with upper respiratory damage. I use a lot of sugarless cough drops, they help...the cough seems to evolve: worse to better and back and so forth. While acid reflux is a possiblity, WG also seems to mimic that at times. While in hospital, docs had me on 'stomach' pills, but it was never the WG, it was the meds I was being given. An inhaler won't help this cough...if you're moving towards pneumonia or pneumonitis an inhaler may make you feel better for a while, but if it's the 'WG' cough, it doesn't help...in fact, makes me dizzy and heart rate jumps for a while...the ingredients pump up the heart rate, nothing else. A breathing test, if done in full, is OK, nothing to fear...just a lot of rapid breathing done inside a glass chamber with a tube in your mouth, maybe going up and down some steps to increase heart & breathing rates. You're NOT going into ER...be careful, but all these sound like WG related symptoms, sometimes side effects of drugs or damage already done. Be wary as well as patient...you're moving in the right direction...it just takes a while for all of us...hang in there.

[carriej22]

Just seems to be getting worse. A few weeks ago I was having mild shortness of breath that I contributed to the 15 lb weight gain. However this is not normal at all. Bending or even getting into my SUV can leave me gasping.

My bloodwork "inflammation" has been creeping up... It was 13 (10 is normal) then it was 16, now it's 23 ... Slowly creeping over 6 weeks. She didn't seem concerned, however. I don't know what this means so I don't know what to think of it. She seems more concerned about joint pain and skin issues (of which I have none).

[annekat]

I wonder if your symptoms are anything like what happens with tracheal stenosis. I don't have it but I know there are people on here who do or have, and there's a section on it in the forum archives. It's a narrowing of the trachea or bronchial tubes, and can be life threatening if it cuts off the air too much. Maybe you have already been tested for that.

My coughing and shortness of breath often goes away after I've managed to cough up a bit of mucus that became lodged in my bronchial tubes after dripping down from my sinuses. I think I also have some of the acid reflux problem some of the time.

If your problem is all the time and never lets up, I'd be more concerned. I hope you don't end up in the ER, but if you do, maybe someone will sit up and take notice and take your symptoms more seriously.

[Dirty Don]

Just seems to be getting worse. A few weeks ago I was having mild shortness of breath that I contributed to the 15 lb weight gain. However this is not normal at all. Bending or even getting into my SUV can leave me gasping.

My bloodwork "inflammation" has been creeping up... It was 13 (10 is normal) then it was 16, now it's 23 ... Slowly creeping over 6 weeks. She didn't seem concerned, however. I don't know what this means so I don't know what to think of it. She seems more concerned about joint pain and skin issues (of which I have none).

I'm sorry, but you need a better or more aware doc Carrie. Shortness of breath in this case, doing the things you're describing is a lack of oxygen (any dizziness associated with it?). AND, ANY inflammation is something to be concerned about...my god, that's what WG is all about...it has to be controlled. No, either get a better doc or make her aware of WG's many symptoms...joint pain and skin issues are only symptomatic of a possible flare...they are NOT the WG problem that needs to be controlled. The AI system needs to be suppressed, and the inflammatory stuff needs to be repressed, so your body can start fighting back. That's what pred, MTX, Rituxin, etc. are all about. Remember, you're the boss, not the doc, she's an extremely well trained mechanic of the body, but maybe this is out of her league. Give it some thought.

[Psyborg]

I have shortness of breath from tracheal stenosis...which made me hoarse, and from Bronchial damage. I'd suggest that you ask about stenosis since it's not uncommon for us at all.

[Lightwarrior]

I agree with dirty Don, you need to find another Doc. What is in the air or water that several of us seem to be flaring?/

[annekat]

I think you are talking about your family doctor in the above, and think she needs to tell you to go to your Wegs doctor instead of handling it herself.

[Sangye]

Carrie, that is not good. ANY doctor would do a chest x-ray for someone on mtx who's having breathing problems. Please get to a doctor who will do one, and if you don't have another option go to the ER. Inflammatory markers on the rise are a sign of trouble as well.

You could certainly have acid reflux but pneumonitis due to mtx must be ruled out first. Aren't you already on an acid-blocker since you're on high dose pred?

[drz]

Trouble breathing is a serious concern and has been the worst thing i experienced in my many problems from my GPA. When you can breathe nothing else seems very important. It can have many causes but it needs to be diagnosed and treated as it might be combination of more than one problem. Some things you can monitor yourself or with help from others is your Oxygen level. Meters are rather cheap at most drug stores. Have some one else check your respiration rate and compare it with your own rates. Monitor for fever, blood pressure and indigestion frequency. Feeling faint? If your medical staff isn't moving fast enough, the ER can be your best friend some times or even in-patient admission for tests and evaluations to find problem and correct it. One time I ended up in inpatient care to evaluate and treat for possible stenosis of throat and it turned out to be inflammation and irritation from my GERD caused because my Protonix dosage had been cut in half by mistake.

Best wishes for better breathing.

[annekat]

I echo drz's best wishes for better breathing. I have had asthma off and on throughout my life and no one, for example, my parents, and my dad was a doctor, had even a clue about how scary and miserable it can be, because it had never happened to them. Later in life, my mom had asthma, and apologized to me profusely for not realizing, or trying harder to understand, how I had felt. Very true what drz says, that when you can't breathe, nothing else seems important.... I hope that if this is continuing, you live near an ER and won't hesitate to go there.

[carriej22]

I have an appointment with an ENT on Friday. I went to the ER and got a crappy doctor and he told me that I was breathing fine!??!!? I even offered to do a walk down the hallway and come back and he wasn't having it. He listened to my chest and said it sounded clear.

I am coughing now. Coughing up stuff - it's not green. Clear junk. I think this is a good thing. I seem to feel better, I don't feel sick or anything like that.... When I'm sitting here at my desk I feel fine. However every once and awhile I seem to take a big involuntary breath and it does feel tight and a bit ouchy.

Hopefully I will have better luck with my ENT.. If not, well, I'll have to call my specialist and make the trip down to see him.

[annekat]

That's so frustrating! I've had that same experience with a doc saying my breathing sounded fine, when I felt otherwise. If you are coughing stuff up, it could be like what I get, stuff stuck pretty far down in the windpipe, which can make some pretty ugly noises during breathing. I can have an unproductive cough for quite awhile until it finally comes up, and it's never much, but I feel a lot better and breathing becomes normal. The consensus is that it's coming from my sinuses, although I did have lung involvement. My mucus can be clear or slightly colored, but with no blood. You do have some different sounding stuff, though, and good you are seeing the ENT soon.... he might run a scope down into the opening of your windpipe and take a look. I don't know if you have a pulmonologist, but one of those could be helpful, too. You've sounded in a lot of distress lately, and I hope it gets sorted out.

[carriej22]

Seems like I can't seem to make up my mind whether it's better or not. It's about 430am and I just had another coughing fit. It's terrifying because I don't think I'm going to get out of it. No one seems to want to listen to me about the possibility of it being the MTX. When I mentioned that to my family doctor she was like "well we can't really touch that, you need it".

Now I'm getting winded for nothing. I also seem to be taking an involuntary big breath every once and awhile which causes tightness and a pain, which usually sends me in a coughing fit or atleasts knocks the wind out of me. I might go back to the ER and hope I get a better Dr. There is one DR there that I really like, he's the one who found my wegeners. However it's luck of the draw who you get.

Sounds selfish.. But I don't want to go and have them keep me in. I hate staying in the hospital :( ...

[annekat]

In my case, I've never thought the coughing was related to my drugs. I'm on MTX now after being on CTX a long time. The coughing and getting winded have gotten better with time, along with everything else. However, the big involuntary breaths you are taking, along with pain and tightness, sound different than anything I've experienced. See what the ENT has to say.

[Psyborg]

That doesn't sound like the drug side effects as much as a potential flare to me. I could be completely wrong of course, I'm not a doctor.

MTX is not the only option either. Cellcept and immuran are also options if you don't tolerate MTX.

[drz]

Lisinopril is known to cause a dry cough in many people from its post nasal drip. Post nasal drip is often a result of sinus problems from Wegs. I am taking lisinopril now and had some of coughing issues before from the Wegs stuff but so far the med hasn't made it much worse. Can you ask your pharmacist to review your mes to see which my cause coughing and what alternative meds might be used and try have a good discussion with your prescribing doctor (s). I have sort of learned to live with the coughing from post nasal drip and excess mucous in throat but it can be annoying at times. Any thing that causes great difficulty in breathing is something your doctors should try address. Who seems your best bet for such help--ENT, pulmonary, internist, etc?

[carriej22]

Currently in the hospital (oh how I love iPhones!).

Chest X-ray was normal. Low oxygen. Waiting for an internist, have seen an ENT and an emerge doc... Also being tested for whopping cough.

Currently on oxygen because it's gotten so bad even walking from the bed to the bathroom set me into a breathing frenzy.

Will post when I know more.

[drz]

Glad to hear your issues are being address with more evaluation. Hope they find an answer on how to try make things better for you. Best wishes for better breathing.


Currently in the hospital (oh how I love iPhones!).

Chest X-ray was normal. Low oxygen. Waiting for an internist, have seen an ENT and an emerge doc... Also being tested for whopping cough.

Currently on oxygen because it's gotten so bad even walking from the bed to the bathroom set me into a breathing frenzy.

Will post when I know more.

[carriej22]

Seen the internist... Looks like I'm here for Atleast the night. Going to have a ctscan and some kind of lung scope tomorrow. Funfun.... :(

[Dirty Don]

Seen the internist... Looks like I'm here for Atleast the night. Going to have a ctscan and some kind of lung scope tomorrow. Funfun.... :(

Well, some people's definition of fun may differ from a Weggies'! But, you're getting some people to seriously look at you and hopefully some good diagnoses, prognoses, and medications will come out of it all...best to you.

[annekat]

I know the hospital isn't fun, but it makes us feel more like someone is taking you seriously and will find out what is going on. The CT scan of your lungs may show a lot more than the xray did. My xray was nearly normal but the CT scan showed numerous lesions. If you don't have lung involvement, the scan and the lung scope will rule it out. I was miserable overnight in the hospital but I had Wegs and didn't know it, hadn't been treated for it, and was in a major flare. But I did get to go home the next day, as I hope you do, too.

[carriej22]

It's been a tough night. Whatever it is, is getting worse. They brought me a 20 foot cable for the oxygen because I couldn't even go as far as the bathroom without totally losing my breath and coughin my fool head off until I almost barfed.

I dunno. They agreed to hold off on the methotrexate for Atleast 1 week. I don't know what is going on, but it's driving me crazy. To top it off - my birthday is on Saturday.. Yay

[annekat]

It's been a tough night. Whatever it is, is getting worse. They brought me a 20 foot cable for the oxygen because I couldn't even go as far as the bathroom without totally losing my breath and coughin my fool head off until I almost barfed.

I dunno. They agreed to hold off on the methotrexate for Atleast 1 week. I don't know what is going on, but it's driving me crazy. To top it off - my birthday is on Saturday.. Yay That really sounds scary and weird. I hope they are going to check you for tracheal stenosis, along with everything else... not that I know anything, really, but I just hope they aren't overlooking anything that should be obvious to someone who knows about Wegs.

Happy Birthday in advance!! :hug3: I sure hope you don't have to spend it in the hospital.

[Lightwarrior]

That really sounds scary and weird. I hope they are going to check you for tracheal stenosis, along with everything else... not that I know anything, really, but I just hope they aren't overlooking anything that should be obvious to someone who knows about Wegs.

Happy Birthday in advance!! :hug3: I sure hope you don't have to spend it in the hospital.

Happy Birthday in advance from me two.

[carriej22]

Well, bad news first I guess. I'm here until Atleast Moday :(. The good news is I have the chief doctor, the internist as well as my specialist in another city working together to figure out WTF is going on. I'm still on oxygen, and luckily my oxygen level is going up. It was 88 when I came in, I think it's 96 now.

I had a Catscan today and there were no blood clots or anything major but they are going to treat me for something called Pneumocystis pneumonia (PCP). I never heard of it but apparently it's a fungal pneumonia.

Im on solemedrol (no idea how to spell) 125mg every 6 hours.

I just want to go home. My poor Mother planned a big BBQ at her place for the weekend for my birthday because I had such a crappy year. So much stuff going to go to waste. Plus she took today off work to prepare for it. I feel so guilty. I am so touchy - you think I'd be a "grown up" but I am totally bummed I have to spend my birthday here.

[pberggren1]

You are in good hands Carrie. Nothing too much to worry about now. PCP is fairly common and easy to treat. Your symptoms sound almost the same as what I had last year twice and the year before 3 times. You just need to get lots of rest and hope the antifungal med will do its job.

[Pete]

Hi Carrie,

Sad to learn of your hospitalization. Even though nobody wants to be in the hospital on their birthday, it's probably in your best interests for the long haul. Hope you get home soon and get to celebrate many more birthdays!

Pete

[Lightwarrior]

You are in good hands Carrie. Nothing too much to worry about now. PCP is fairly common and easy to treat. Your symptoms sound almost the same as what I had last year twice and the year before 3 times. You just need to get lots of rest and hope the antifungal med will do its job.

I agree with Phil and PCP is one of the reasons we are often prescribed Bactrim. They may do this before you leave. I am glad that you have what I hope I am hearing is a Wegs specialist in another city.

[annekat]

Sorry to hear about your hospitalization extending past your birthday. :sad: But progress is being made in getting you back to normal, or at least Wegs normal, and that's important. I have a feeling that BBQ will just be delayed, but will still happen, and you'll have a great time.

[drz]

Hope the treatment is on target for you. I have been warned several times about PCP and take monthly pentamadine nebulizer treatments to try avoid it. If they got it diagnosed correctly you should feel some improvement shortly.

[carriej22]

Well, I think I can breathe better today. Still having a hard time doing anything without getting the wind knocked out of me, but I seem to be able to fill my lungs with more air and they dropped my from 3l of oxygen downtown 2.5l.

They are basically waiting to see if the antibiotics work... There is one more test they were going to do (lung scope) but for some reason they don't want to do it unless they have to. Definitely less pain while breathing so I hope they found it... Just kinda stinks that I have been admitted since Thursday morning and they looked everywhere else before taking into consideration something like this. Its nice to have the scary stuff out of the way (blood clots).

[Girly3800]

For what its worth - when my husband was put on methotrexate after the cytoxan infusions were finished his doctor told him to be vigilant about watching for a cough. Methotrexate can cause an allergic reaction and if the cough develops the mtx needs to be discontinued. Also told to stop all antibiotics while on it. He had been taking Bactrim throughout the cytoxan. In fact now, he has had to stop the mtx for awhile because of the antibiotics he is on for the pancreatitis related issues. There are two separate problems that can develop - a heart problem and the antibiotics depress the ability of the body to process the mtx and expel it.

[annekat]

For what its worth - when my husband was put on methotrexate after the cytoxan infusions were finished his doctor told him to be vigilant about watching for a cough. Methotrexate can cause an allergic reaction and if the cough develops the mtx needs to be discontinued. Also told to stop all antibiotics while on it. He had been taking Bactrim throughout the cytoxan. In fact now, he has had to stop the mtx for awhile because of the antibiotics he is on for the pancreatitis related issues. There are two separate problems that can develop - a heart problem and the antibiotics depress the ability of the body to process the mtx and expel it.Hmm... I'm taking Bactrim with MTX.... how else would we prevent the PCP which Carrie seems to have been diagnosed with? I also have a nagging dry, and eventually productive, cough, which seems to be not uncommon on here. It may have increased a little since switching to MTX but I can't say that for sure..... anyone else?

[annekat]

I have a question about the PCP which has been said on this thread to be a "fungal" pneumonia. If so, then why would antibiotics work to kill it or to prevent it, as in the case of Bactrim? Anyone?

[Pete]

Also interesting. I'm taking bactrim on M-W-F along with 15 mg/wk of mtx. No problems after six weeks on this regimen.

Pete

[drz]

PCP is a caused by a yeast like fungus and the two things used for prevention are "In immunocompromised (http://en.wikipedia.org/wiki/Immunocompromised) patients, prophylaxis (http://en.wikipedia.org/wiki/Prophylaxis) with co-trimoxazole (http://en.wikipedia.org/wiki/Co-trimoxazole) or regular pentamidine (http://en.wikipedia.org/wiki/Pentamidine) inhalations may help prevent PCP" so Bactrim and pentamadine are used most often.. PCP is usually (often) fatal if untreated. Most people already have the organism in their lungs but it becomes a problem for those of us with broken immune systems. PCP was leading cause of death in AIDS patients and still is if left untreated.

[Dirty Don]

Because we desert people have to deal with Valley Fever, a fungal infection in the lungs which we all carry. Docs here are big on flucanozole...anti fungal used for Valley Fever...very effective, just takes time. Doc has used it on me cuz of immune suppression and early WG attack on lungs. Been fine using it.

[KathyB]

Because we desert people have to deal with Valley Fever, a fungal infection in the lungs which we all carry. Docs here are big on flucanozole...anti fungal used for Valley Fever...very effective, just takes time. Doc has used it on me cuz of immune suppression and early WG attack on lungs. Been fine using it.

I had a NASTY case of fungal pneumonia about six weeks after the last 4x4 Rtx treatment last fall. Talk about sick! I started with a 12-week Rx of Voriconazole. After about 8 weeks, I started getting hives and then my liver function went crazy bad. My doc switched my meds to another "azole" for the final 4 weeks and completed my recovery. Still get winded and have breathing issues. I have a profound respect for fungal infections!!

KB

[annekat]

I understand about using anti-fungal meds on fungal pneumonia. But Bactrim is an antibiotic, no? So I'm still wondering why Bactrim works to prevent a fungal infection or why any antibiotics would be used to treat it, as Carrie says they are using. Is there a bacterial element along with the fungal element?

[mishb]

I hope you are doing okay Carrie and whatever antibiotics etc that you are on, are starting to work for you.

Happy Birthday.........I guess there are better places to be on your birthday but I reckon you are being spoilt, for your special day, anyway.

Take care

[carriej22]

Well.. My doctors are disagreeing on what is going on. Whatever it is, it's getting better.

One says PCP, one says he thinks it's methotrexate, one thinks it's a flare.... I am basically being treated for all these things, so someone is right as treatment is working. I'm still in the hospital on oxygen. Tomorrow I get my Catscan and hopefully get to go home and have a more solid answer.

Bad news... They're cranking my prednisone up to 60mg. I just don't know how I'm going to be able to handle that again. I was so happy to be down to 20mg and almost seeing normal and feeling much better and now I'm all bleary eyes and miserable once again.

Yuck yuck

[annekat]

It's great that you're feeling better! :thumbsup: I hope they come to a consensus soon. Sorry about the pred increase, but maybe it will only be for a short while and they can taper back down to 20mg pretty fast.

[carriej22]

Annnd now they want to put me on that cytoxan. I do not want that :( ... Methotrexate made me sick enough, I couldn't imagine how much I'd be barfing on that. I don't have time to be sick :(.

I hope there are more drug alternatives. I don't want that drug at all :(

[drz]

I understand about using anti-fungal meds on fungal pneumonia. But Bactrim is an antibiotic, no? So I'm still wondering why Bactrim works to prevent a fungal infection or why any antibiotics would be used to treat it, as Carrie says they are using. Is there a bacterial element along with the fungal element?

Yes Bactrim is a sulfonamide (http://en.wikipedia.org/wiki/Sulfonamide_(medicine))antibiotic (http://en.wikipedia.org/wiki/Antibiotic) combination of trimethoprim (http://en.wikipedia.org/wiki/Trimethoprim) and sulfamethoxazole (http://en.wikipedia.org/wiki/Sulfamethoxazole), in the ratio (http://en.wikipedia.org/wiki/Ratio) of 1 to 5, used in the treatment of a variety of bacterial infections. But as the link above indicated it is also used to prevent PCP. I wish Al was here to explain why.

[Pete]

Hi Carrie,

I can understand your concern regarding the side effects of cytoxan. I was on it for about 16 months taking 100 mg/day. I really never felt sick while taking it, so I guess you may have to see how your body responds. I've been on methotrexate for almost two months with no problems so far. Dr. Villa Forte at Cleveland Clinic explained that they use cytoxan or rituxin at diagnosis/disease onset coupled with pred and bactrim to bring about remission. Once in remission, they switch the patient to methotrexate, immuran, or cellcept.

I don't want to minimize the side effects of any drug. Cytoxan's can be nasty. I did ok on it, but had an immediate problem with the supposedly milder immuran. Ultimately, I think it's a case of picking your poison.

Good luck!

Pete

[KathyB]

Carrie -- Is there any chance for you to try Rtx?

BTW, hope you had a happy birthday. While we don't always love the getting older part, nonetheless we are grateful to celebrate another year (or day, or month, or ...) on this earth! By all means, CELEBRATE your life!!

KB. :biggrin1:

KB



Annnd now they want to put me on that cytoxan. I do not want that :( ... Methotrexate made me sick enough, I couldn't imagine how much I'd be barfing on that. I don't have time to be sick :(.

I hope there are more drug alternatives. I don't want that drug at all :(

[carriej22]

Thanks guys, now officially 23 years old lol.

I actually had rituxan... 4 infusions in June. From there I went on pred and MTX. I am going to have to call my specialist when I get out of here and see what is going on from him since so far I've just been hearing his words through the other doctors here.

This is all so overwhelming... I need to get back to work, I don't know how I'm going to handle this set back. :(

[annekat]

Yes Bactrim is a sulfonamide (http://en.wikipedia.org/wiki/Sulfonamide_(medicine))antibiotic (http://en.wikipedia.org/wiki/Antibiotic) combination of trimethoprim (http://en.wikipedia.org/wiki/Trimethoprim) and sulfamethoxazole (http://en.wikipedia.org/wiki/Sulfamethoxazole), in the ratio (http://en.wikipedia.org/wiki/Ratio) of 1 to 5, used in the treatment of a variety of bacterial infections. But as the link above indicated it is also used to prevent PCP. I wish Al was here to explain why. The same thing occurred to me, wishing Al was here to answer that. But I guess you are saying that maybe the Bactrim has an antifungal ingredient, the one ending in zole, maybe? as well as antibiotic ingredients to fight bacteria.

[annekat]

Carrie, I was on Cytoxan for a year, tapering it toward the end, and then switched to MTX. I did not find the CTX to be all that problematical, and it did a great job of clearing up my symptoms. At first, it made me feel weird, dizzy and energyless, but I got used to it within a couple of weeks. I made sure to drink lots of water to minimize the risk to my bladder. Every drug has its hazards. CTX is a stronger drug than MTX and will get you into remission faster if you have severe Wegs. But you should take Bactrim with it to guard against PCP. I'm actually having more trouble adjusting to MTX; it makes me fatigued for a couple days after taking it. But everyone is different. Just don't be too scared of CTX if they have you take it. But do drink lots of water.

[Dirty Don]

Anne, don't know if I told you, but doc had me split my weekly dose of mtx into 2 doses 12 hours apart, same total amount...it did relieve the fatigue and nausea I felt after taking a full dose all at once.

[annekat]

Anne, don't know if I told you, but doc had me split my weekly dose of mtx into 2 doses 12 hours apart, same total amount...it did relieve the fatigue and nausea I felt after taking a full dose all at once.Hi, Don.... yes, I knew about that and my doc suggested the same thing, and I tried it. What I ended up doing was taking the full dose Sunday night before bed, since I get to sleep in Monday mornings. So I'd just get it over with sooner and be asleep during the worst of it. It is about the same, fatigue-wise. The fatigue is getting better, and I can pretty much function every day, but I think I do still get tired a bit sooner than before starting MTX, at least for those first couple of days. Actually, I'm taking a pretty low dose, only 10mg./wk.

[carriej22]

Well I am finally home. What a $&/t show.

Long story short - they don't know what it is/was but it is definitely improving. They weened me off oxygen and let me go home. I'm breathing better than I have in weeks and it's definitely a huge improvement.

They treated me with puffers, oxygen, antibiotics, more prednisone and no methotrexate. Something in that cocktail did the trick. I have been coughing up stuff since I got put on the antibiotics and my nose hasn't felt this good in awhile so now I'm wondering if it wasn't some infection. But it's not green.

Anyway... I go see my ent on the 4th and in to see a specialist on the 20th and if I'm better we're going to try to use methotrexate again. If I get sick again - obviously can't have it.

Good news is while I was in the hospital I met an internist who might take me as a regular patient... Which would be great as he is nice and close my home (I drive 45 mins each way to my reg gp).

Im so tired and cranky and miserable and hate prednisone. Shakes, jitters, blurry eyes all back... I'm on 60mg for a month and then they will look at tapering... Bleegh

[Dirty Don]

No matter how pissy you feel, any improvement is good right now. Glad you're back home.

[Lightwarrior]

No matter how pissy you feel, any improvement is good right now. Glad you're back home.

Ditto to what Don says

[drz]

Glad to hear you are feeling better and got a promising lead for another good doctor. That might really turn out to be a good thing for you. Soundsl like they got a good plan in place to try sort it out further. Good luck and thanks for sharing.

[carriej22]

Been coughing up all kinds of stuff.. All clear though, but it's quite stringy. Gross I know. I also have the sensation of something "stuck" in my throat, along with quite a sore throat too may I add. It's weird that's for sure. However my breathing is still keeping up, I'm paranoid though because everytime I cough I think I'm going to choke and it sends me into a bit of a panic. I'm home all day by myself which doesn't make things easier.

Now - just to keep my butt out of the hospital... And try not to catch that vomiting bug that has been circulating pretty much all summer.

[Dirty Don]

You're getting better...there will be some strange stuff...docs told me I was getting better but still had THAT WG cough with 'stuff' in it, and horrible night sweats, etc. But, the docs kept me patient and it did get better. Glad you're looking for a new doc...internists aren't the best at WG, but if at least finding one who will learn and study with you and be sympathetic...then you're moving in the right direction. Take care...bright side up!!!

[carriej22]

Well it seems as though I am on the mend. They want to start me back on MTX in a few weeks and I am nervous. I feel good without it. Presnisone makes me feel crappy, but I feel more myself if that makes sense. No more upset stomach either.

Have a wicked sore throat... Have had it since Monday. Not sure what it's about but it seems worse at night. Only when I swallow and it does go away sometimes for a few hours. I think it might be because my nose is FINALLY clearing up... After over a year of dealing with slug snot nose, my nose is almost normal. It's also seemed to have stopped bleeding so much.

Off to the ENT on Tuesday to be probed... I can't wait to show him my nose

[KathyB]

Glad you are home and feeling better, Carrie. Been through the ringer, eh?! I think Don's remark about the need for patience is spot on. Of course, easier said than done! Keep up those positive thoughts!

KB