PDA

View Full Version : WG & Its effects on my Lungs & what has it done to yours



wgrebel
03-02-2010, 01:35 PM
Hi everybody. My name is Tim McGee and this is my first post on the WG website. My wife has posted on here before, she is Kmcgee21. I have had hard time talking to anyone about what has happened I want to ask ya'll (i'm a southerner) about my lungs and I just want to talk to some people who understand.

I was diagnosed with WG 10-23-09. Since that time it seems I have been running a marathon with hurdles. My story starts out just like alot of others I had a sinus infection last August (2009). I went to my doctor and after antibiotics and decadron did not work I went to the ER a week later and that did not help. Labor Day week 2009 I spent a week in the Hospital to get re-hydrated and to cure my "sinus infection". After a week in the hospital I was released and a week later was no better. I was living on decadron and pain pills for headaches when my regular doctor got me into see a buddy of his who was an ENT. The ENT did sinus surgery on me 9-30-09 & I had some relief for two-three days. By the second week of October 2009 I had lost my hearing and my sinuses were no better. October 14, 2009 I was running a 103 degree fever and my wife took me to the ER. The ER X-rayed my lungs and "diagnosed" me with pneumonia. I spent five days in the hospital being treated for pneumonia without improvement.

The Monday after I went into the hospital a new Hospitalist noticed my fingers has spurs under my fingernails and my feet were swelling. She asked me if I would transfer to Memphis & arranged for me and my wife to ride an ambulance to Memphis Baptist Hospital. She informed them she thought it was WG. An army of doctors and students inspected me my first full day at Memphis. I started prednisone 120 mg that day. My ears opened up after being on the prednisone. They did a lung biopsy Thursday 10/22/09 and ANCA test and Friday 10/23/09 we got the the word, it was WG. I could not even pronounce it and I still look at my medic alert bracelet to spell it when I go to the doctor. I took my first dose of Cytoxan that weekend (by IV) and was discharged from the hospital 10/28. About a week after I got home from Memphis my stomach began to hurt. I spent the first few days of November in severe stomach pain and dehydrated. I was also on coumadin. My wife and I were told by my WG doc (at the time) to go to out local ER and get a vitamin K shot. We did on 11/12/09 and I was admitted to the local hospital that night because my vitamin K was out of whack. My stomach pain grew steadily worse in the hospital and after two nights in my local hosptal I was back in Memphis.

My second Memphis stay consisted of every disgestive test imaginable. They finally got things moving :) again in Memphis and I was discharged 11/23/09. I got a new WG doc in Tupelo after I got out of the hospital. He ran a bone density test, put me on all kinds of meds for my bones, and they told me to relieve my bladder once per hour for four hours after taking Cytoxan to minimize risks. I was not told this in Memphis. The first hurdle I faced was severe foot pain ( the vasculitis had turned three toes on my right foot black and one on my left foot). Bone was exposed on one toe on my right foot and I had one toe on my left foot and another on my right foot amputated. In December the hurdle was my creatine. It was at 2.2 when I left the hospital in November 2009. My last visit in February it was down to 1.7. The prednisone has made me diabetic and when you are on coumadin you have to be very careful (two more hurdles). The hurdle in January was fatigue and foot pain.

The present hurdle is my lungs. I have one small nodule in my lungs and some restricted airways. My new pulmonologist gave me an inhaler but since I got home from the visit I have not been myself. My rheumy told me on 2-17-10 I was "moving" toward remission and I was on cloud nine. However, since I got home from the pulmonologist Its like i'm scared to breathe. Did anyone else go through this with their lungs? How did you overcome the scary, fish out of water feeling? Thanks for letting me rant and remember prayer changes things.
WGREBEL

Sangye
03-02-2010, 02:00 PM
Hi Tim,
I'm glad you found the group. I wasn't sure if you actually have a Wegs specialist, or just a rheumy who has treated Wegs on occasion.

I'm horrified that no one told you about cytoxan (ctx) and your bladder. I hope they told you to drink at least 1.5 liters of water a day, too. You have to flush the ctx out with lots of water all day long, and go to the bathroom often so it doesn't sit in your bladder.

Steroid-induced hyperglycemia is not necessarily permanent. When you reduce the pred, it usually goes away and you won't have diabetes. Of course it depends on some other factors, like your pre-Wegs blood sugar levels. Mostly it's a "wait and see" thing.

I was on oxygen for 19 months, so I really understand the fear of breathing-- or not breathing, to be more precise! The inhalers should help. They do cause anxiety as a side effect, and that may be contributing to your fear. Pred also causes anxiety. Between pred and inhalers, you may be getting a double dose!

I also learned that I can really freak myself out by focusing on my breath. If that happens, distract yourself as best as you can.

elephant
03-02-2010, 10:53 PM
Welcome Tim, I too had lung involvement among other stuff. I had that lung nodule removed last year. I do have obstruction in my lungs. It is very scary especially when your dealing with lungs and breathing. I am Sangye nagger assistant, hoping you have a Wegeners specialist. I go to Cleveland Clinic in Ohio. I am really happy there and felt relieved that I say the Rheumatologist specialist. If you are getting worse , be persistant and let the doctors know.

JanW
03-03-2010, 01:09 AM
Any time I used an inhaler as well as oral pred, Tim, I got very anxious. I was initially misdiagnosed with asthma for five years when it turned out that the I had WG all along. My condition was subglottic stenosis, which is scarring on the windpipe, so I always ask everyone here to make sure that they don't have that too (it's a rarer but classic presentation of WG, although it sounds like you have already had some very rare manifestions in your toes!). Most likely if you were intubated for your surgeries in the hospital, you would know if your windpipe is too small because they would have had trouble getting the tubes in. It is very scary not being able to breathe -- as my ENT says, breathing is definintely not overrated.

wgrebel
03-03-2010, 04:51 AM
Sangye,

Thanks. I do not have a Wegs Specialist. However, the three rheumatologists at the clinic I go to informed me that I am not just getting one of them that I was getting all three. They have connections with a vasculitis clinic in Birmingham, AL. My docs have told me the diabetes will go away once I am off preds. I try to distract myself. I am calling my pulmonologist today and ask about oxygen. Did the oxygen help you sleep?

wgrebel
03-03-2010, 04:54 AM
Thanks to each of you for your responses. I feel better knowing there are others out there. My breathing problems occur when I sleep, or try to sleep. I am asking about oxygen from my pulmonologist today. Apart from Sangye have any others been on Oxygen & if so did it help you sleep?

Thanks,

WGREBEL

Sangye
03-03-2010, 05:02 AM
Oxygen doesn't help you sleep. If you're having breathing problems during sleep you might have sleep apnea. Your pulmy will know what to do.

Your docs would know if you need to be on it because they measure your oxygen saturation when they take your vital signs (it's the clip they put on your finger). Unless your oxygen saturation is very low, they don't prescribe oxygen. (O2 is considered a drug.) You definitely don't want to be on oxygen unless you have to. It's a huge pain, very uncomfortable and if your insurance doesn't cover it 100% it's also quite expensive. It's also very easy to become psychologically dependent on it even when you don't really need it. That happened to me right at the end. I'd had such difficulty breathing for so long, I was terrified not to have it.

I've never known of anyone going to 3 rheumy's at the same time. Many people have 2: a Wegs specialist rheumy and a local rheumy who takes direction from the Wegs doc.

My first rheumy (local) called Cleveland Clinic a couple times. Not to have them oversee my care-- as he should have done-- but to ask why I got clots, etc.... It's hard to convey how important it is for a Weggie to have a direct connection to a Wegs doc. Without it, local docs often just call them when they're stuck. A Weggie can get really messed up that way. We are often undertreated, overtreated and misdiagnosed.

Jack
03-03-2010, 05:07 AM
I have Bronchiectasis - lots of coughing, but no great problem with breathing except when I'm particularly badly congested. The pulmonary specialists say that it is not connected with Wegener's, but there are several people on here suffering from it and all the facts fit the usual Wegener's pattern so the docs are probably wrong.

JanW
03-03-2010, 05:19 AM
I'm thinking that Tim's rheumos can call University of Alabama at Birmingham -- which was one of the centers where the rtx testing was done so they have seen a fair amount of vasculitis patients, but it's not a major center in the sense that Mayo (MN), JHU or Cleveland Clinic are. A pulmo should be doing the oxygen sats at every visit -- and my rheumo did them as well (because of my stenosis). Perfectly normal is in the range of 100 percent (logical) and my doc says "incompatible with life" is 92 percent -- this would be a point at which they would have to start giving you extra oxygen. Are you on bactrim or something else for a lung infection? Are your lungs perfectly clear? I'm thinking with the ctx on board it's easy to pick up a lung infection or pneumonia and this would definitely affect your breathing. I know that some ctx patients are on bactrim for the lungs as a precauition because the kind of pneumonia that you become susceptible to if you are immunosuppressed can deteroriate so rapidly that it can kill you if you aren't already in the hospital. It's what a lot of AIDS patients died of before they discovered the drug cocktail and it's still one of the top threats to people who are immunosuppressed for whatever reason.

Lightwarrior
03-03-2010, 05:26 AM
I take 1600/800 Bactrim Monday, Wednesday and Friday to prevent pcp and all the other odd infilitrators who like our lungs due to Wegs and the immunosuppresants.

Col 23
03-03-2010, 06:40 AM
Hi Tim and all
Im a new Aussie WG diagnosed Xmas 2009 also and I have only posted a couple of times. From what I can work out with my research and own experience (which Im gathering up the courage to put on here) is the dreaded Prednisone in high doses to start with is the only drug that will clear your lungs, coupled with what ever the Rheumotogist prescribes, as every WG has appears to have individual stages. I had nodules in both my lungs and in my left breast which fortunately have almost cleared after about 2months. Sounds like you have been through alot Tim and Im glad you also took the courage to join this group. It also helps those late night when you cant sleep, at least you feel you have someone to talk to or you can read the posts and not feel so alone with it all.

Everyone is so right I've had pneumonia, stage 4 breast cancer, myalgia, conjuntivitis (when Im going blind), just menopause and stress, treated for depression and blah blah blah from the doctors before diagnoses. My Orthlamologist saved my breasts (I was booked in to have them removed just before xmas), my eyes and my life ( I hope) by stating " Ive only ever seen this 1-2 times in my life and I dont care what your doctors are doing Im running a few test. (just a bit of my story). Any way everyone on here, Im still trying to get my head around this WG thing, very fatigued, still on 30mg of pred and 25mg of Methotrexate, severe pain in legs and back, cant walk well, heavy sweating and massive weight gain. So uncomfortable. Sorry if I sound like Im whinging very bad day today.

I hope you guys are going okay and my thoughts are with you all.
Col 23

LilyPony
03-03-2010, 06:44 AM
Bronchiectasis - The pulmonary specialists say that it is not connected with Wegener's, but there are several people on here suffering from it and all the facts fit the usual Wegener's pattern so the docs are probably wrong.

Jack, I thought it was interesting that the wikipedia article about Bronchiectasis mentions an association with RA and Crohn's. It just puzzles me that the docs can't concede that it could be connected.

LilyPony
03-03-2010, 06:49 AM
I take 1600/800 Bactrim Monday, Wednesday and Friday to prevent pcp and all the other odd infilitrators who like our lungs due to Wegs and the immunosuppresants.
I am curious why you take it on alternate days. I take the 800/160 every day. But then again I haven't had anyone competent overseeing my care.

And yes, Sangye, I am still going for all the scopings and ENT visit on Thursday who will consult with wegs specialist on Friday. I'll be getting an appointment with the specialist, how soon depends on the outcome of tests and ENT will follow directions until/after I am seen. Hoping for later than sooner because that means I'm stable...

JanW
03-03-2010, 07:27 AM
Col you story sounds fascinating. The only case I ever heard of it being in the breast was a paper I read on the internet when it was discovered in the breast biopsy of a woman that docs were about to start treating for breast cancer. Glad you're here.

Sangye
03-03-2010, 07:35 AM
LilyPony-- they give Bactrim 3 times a week as a preventative measure against pneumocystis carinii-- the type of pneumonia immune-compromised people get. P carinii is very hard to treat but very easy to prevent. For some reason, ctx makes one particularly susceptible to it. Weggies with sinus involvement often take Bactrim as well to prevent sinus infections.

Col-- the fatigue, sweating and weight gain are typical side effects of pred. I'm very concerned about your severe leg and back pain, though. That's not a side effect of pred. You've been on mtx and pred long enough to have relief from major Wegs symptoms if the treatment is working. I suggest you ask your doc what to do. S/he may have to increase the mtx dose or switch you to another drug. They should definitely check your kidneys (via blood and urine), as problems there generally present as back pain. I also think it might be valuable to have them check you for blood clots. Mine presented with crippling leg pain.

Please don't worry about whining. I know I'm not the only one reading your post and feeling such sadness for your situation. There's probably someone on here any hour of the day or night, so if you can't sleep check in here. Sometimes it just helps to post something, even if no one else is online at that time.

Col 23
03-03-2010, 11:48 AM
Hi Sangye
The pains in the back and legs are actually actually debilitating to the point I have to sit down and can not continue but goes away if I sit for about 10 minutes. Going shopping is hard now. General housework really difficult. Constant aches in legs continues. How do they check for blood clots. Im going on a plane to Darwin next week-( Daughter having baby) I am seeing the local doc today and was going to ask him if I need support stocking, asprin or whatever.
I had bloods done two weeks ago and kidneys all okay.
Cheers Col 23

Col 23
03-03-2010, 11:54 AM
Hi Jan W
It was awful- I didnt know whether to be grateful for WG or would it have been better to have BC at least it is treatable and lots of money and research go in to it. Do you have the link to that paper. How are you going.?
Col 23

LilyPony
03-03-2010, 11:57 AM
LilyPony-- they give Bactrim 3 times a week as a preventative measure against pneumocystis carinii-- the type of pneumonia immune-compromised people get. P carinii is very hard to treat but very easy to prevent. For some reason, ctx makes one particularly susceptible to it. Weggies with sinus involvement often take Bactrim as well to prevent sinus infections.


Yes, i understand that and that is why I am on it, I assume. I am wondering what the rationale is for alternate days as opposed to daily. Is that typical? I'm just trying to get as much info as I can prior to seeing the specialist so I am armed with all my questions! Thank you so much for your wisdom. Though painfully earned, it is much appreciated by all of us!

Sangye
03-03-2010, 12:29 PM
Alternate days is a preventative dose. Every day is a treatment dose.

Some Weggies find Bactrim helps control their Wegs-- usually those with sinus and upper respiratory involvement. They might take it daily or alternate days.

JanW
03-03-2010, 12:30 PM
No, I don't have the link, Col. I found it when I was researching "African-American" and "Wegeners" because I am black, and because it is supposedly extremely rare in my race. It seemed that all of the presentations I was finding for blacks were somewhat unusual (for instance breasts, someone presenting with fevers of unknown origin and nothing else, and gum disease). It was really weird. In my case it's classic presentation, throat and saddle nose.

Col 23
03-03-2010, 02:04 PM
Hi Jan
Thanks for getting back to me on that one. Im having a total rest day before I go to the docs today. Just rang the Rhemie she wants to see me day B4 I to to Darwin next week. Hopefully she might reduce the Pred again. It seems we all have very different presenting symptoms with WG, no wonder we all get misdiagnosed initially. As its multisystemic it appears it can attack anywhere anytime. How are you going wiith your WG?
cheers Col 23

Jack
03-03-2010, 07:59 PM
Alternate days is a preventative dose. Every day is a treatment dose.

Some Weggies find Bactrim helps control their Wegs-- usually those with sinus and upper respiratory involvement. They might take it daily or alternate days.
I have taken Bactrim (co-trimoxazole) daily for many years with good results.

JanW
03-04-2010, 03:21 AM
I'm doing well. Having surgery for subglottic stenosis tomorrow. Will start on medication afterwards.

elephant
03-04-2010, 03:24 AM
Jan, I will say a prayer for you. You will be glad when it is all over and you will be able to breathe better. You will do great! :)

JanW
03-04-2010, 03:58 AM
Thanks so much, elephant! I'm both nervous and very much looking forward to it -- it's weird!

Sangye
03-04-2010, 10:15 AM
Jan, I understand the nervous-apprehension-excitement thing! That's how I've felt about doing another round of rtx. Kind of like "Oh man, do I have to do this?" and "Can I start yet?" all at once. :D

How wonderful to know that you're in the most capable hands. I'm sure that brings you great comfort. I wish I could be there to see you take your first big breath!!! Take good care and let us know how everything went. :)

Col 23
03-04-2010, 12:29 PM
Hi Jan
All the best for the op.
Col 23

Col 23
03-04-2010, 12:31 PM
Just wanted to say Hi Jack and ask how your doing?
Col 23

JanW
03-04-2010, 12:33 PM
Thanks a lot. I'll let you guys all know how I'm doing tomorrow (depending on internet access) or Friday after I get out. Looking forward to breathing better...I almost cannot imagine it!

Jack
03-04-2010, 07:10 PM
Just wanted to say Hi Jack and ask how your doing?
Col 23
I'm good thanks. :)
I'm spending the week staying with my sister and she is always good company and cooks very well too! I'm eating more than I have done for ages. My legs are a bit stiff and painful, but otherwise most of my annoying little problems are laying low.
Hope you are making some progress with your own problems.:)

elephant
03-04-2010, 10:32 PM
That's great Jack! It's always fun to hang around a good cook. :)

Sangye
03-05-2010, 01:11 AM
I'm so glad to hear you're eating more, Jack. I was thinking of all of you guys this morning, and your difficulty eating was very much on my mind. Nice to wake up to this good news. :)

Col 23
03-06-2010, 10:37 AM
Great to hear Jack. Sounds like you still have some taste buds!! Whats the weather like in England at the mo.
cheers Col 23

jola57
03-06-2010, 07:52 PM
yeay Jack, I'm so glad you are eating well and hopefully getting a bit fatter. Maybe noe I can send you some of my Moms pierogis or cabbage rolls

Jack
03-06-2010, 08:04 PM
Cabbage rolls sounds interesting (I'm a Veggie as well as a Wegie! ;) ).

I've just packed my bags and will be leaving my sister's place some time today. I think the company and change of food has been good for me and I'm feeling quite good. She has asked me to come back later in the year, so I can't have been too bad to have as a guest, but then she has been a nurse all her life so she knew what to expect.

jola57
03-06-2010, 08:08 PM
That's wonderful. I don't have siblings but am close to my cusins and love visiting with them. Cabbage rolls can be vegeterian. The stuffing is made with rice and veggie grind instead of meat.

elephant
03-06-2010, 09:51 PM
Glad you had a nice visit Jack. Jolanta, those cabbage rolls sound yummy. :)

Sangye
03-07-2010, 02:51 AM
Jack, I can tell how good the visit was for you. You sound refreshed and happier in all your posts. Your sister took good care of you and I bet she really enjoyed spending time with you like that.

Jolanta, thanks for the reminder about cabbage rolls! One of my favorite foods to cook.

moyan
03-07-2010, 04:12 AM
Hi. A bit of crumbled breakfast sausage in the non veg. rolls is good