WG & Its effects on my Lungs & what has it done to yours

[Col 23]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.