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View Full Version : Not very happy about my docs visit



snooz23
02-03-2010, 01:26 PM
Well I was off to Cleveland Clinic to see Dr. Langford for my monthly check up (I have been on treatment since Sept. 15--mtx. and pred) feeling pretty decent. Only to have my hopes crushed. Went for my CT scan, blood work, ENT appt. (all was good), then Rheumy. It appears the nodules in my lungs are not cooperating w/ the treatment, well one in particular. One has decreased in size but a second one seems to keep growing. So now I will need a bronch??? basically where they go suck some fluid out of my lungs to rule out infection. If it is not infection then it is weighing out my new treatment options. I guess Cleveland Clinic is running a new drug trial...not sure if I will want to try something that is questionable? Plus I would need to go there many times over the next several months.

Anyway, just wondering if anyone has experienced the above procedure or have had infections detected this way?

elephant
02-03-2010, 02:10 PM
Sorry to hear that snooze! March 2009 they found a nice size nodule and could not reach it through a bronch so I had a Video assisted thoracic surgery. One of the worst surgeries I ever had.
When are you having the bronch? Do you know the trial drug?
Again, I am so sorry to hear this. I know this is a scarey time for you. I will say some prayers for you tonight.

pberggren1
02-03-2010, 04:42 PM
Susanne, You have only taken Meth and Pred, right?

I may be wrong but I thought that Meth can cause nodules in the lungs - Help me out here Sangye!!!

I don't like the idea of going on something that is tried and true either - it sounds scarey!

I have never heard of this bronch procedure but I hope this is just and infection for you and not WG!

How did Dr. Langford seem to you on this visit? Was she easy to talk to and gave good input? Did she ever mention that Meth can cause nodules in lungs?

Jack
02-03-2010, 06:27 PM
I've had bronchoscopies in the past if that is the procedure you are having. They put a scope into your lung and take samples. In my case it was all done under sedation and I knew nothing about it. It involved no pain and I went home an hour later.

renidrag
02-03-2010, 09:09 PM
I have had two bronchoscopies. Different from Jack they only sort of knocked me out. It was kind of like they needed you to be there for a little while. Still very few memories of the procedure and they got the info they wanted. If it is going to make me better I'm usually for it. Up and out in an hour with no after effects or soreness just like Jack.
Dale

JanW
02-04-2010, 01:25 AM
Good luck, snooz -- try not to get discouraged; I know it's hard.

I had a partial brochoscopy done to confirm the extent of my SS (down to my trachea) with only my throat numbed, but my ENT said that to get to your lungs they would knock you out. I can't imagine them doing it any other way -- even with the partial I was practically out of the chair, completely involuntarily, and starting to try to fight him. It really triggered my fight or flight mechanism, even though I knew what was going to happen...it felt exactly like someone choking me and I couldn't control my reaction. My heart was pounding. Hope it get easier because unfortunately it will be a regular part of my care.

I didn't know that mtx could cause lung nodules. That's my only treatment right now.

elephant
02-04-2010, 03:33 AM
Hang in there Snooz! I am thinking about you. Sending you positive thoughts and great outcomes on your bronchoscopy! :)

Sangye
02-04-2010, 04:34 AM
Snooz, I'm so sorry to hear this. I'm wondering why they're talking trial drug vs ctx or rtx.

I've never heard that mtx can cause nodules. It can cause "infiltrates" which signals an allergic reaction. Infiltrates look like atypical pneumonia on x-ray and CT-- cloudy. If the mtx isn't controlling the Wegs enough, nodules can develop and existing ones can grow. This is very serious, as it can quickly escalate. I'm very relieved you're at CC. You can trust their advice implicitly.

Regarding a bronchoscopy-- Part of the procedure is filling your lungs with saline and then suctioning it out. They culture the fluid for infection and look for red blood cells (bleeding). A bronch lets them see what your lungs look like, and they can take a tissue biopsy if necessary. I had one bronch last summer and they'd be hard-pressed to get me to do another! I woke up while they were doing the flushes. I was coughing and choking non-stop. It's the same as being drowned. The coughing and choking is normal, you're just not supposed to be aware of it or to remember it afterward. I was already quite weak before the procedure and it left me completely unable to function for the next several days. Glad I was hospitalized. It's very unusual to wake up, much less to remember it. They give you a drug that induces amnesia.

Jack
02-04-2010, 04:44 AM
They give you a drug that induces amnesia.
I was a bit concerned when they told me how this was going to work, but in my case at least it was fine and I remembered absolutely nothing. It was much better than the partial sedation I have had in the past for minor procedures which never seems to do anything much.

Sangye
02-04-2010, 04:50 AM
The amnesia drug worked great for me during an oral surgery a couple years ago.

I also want to add that even though I was choking and couldn't breathe, I knew that the doctor knew about it. So it wasn't like the stories you hear about people waking up in surgery and no one knows it. (Anesthesia awareness)

Lightwarrior
02-04-2010, 05:49 AM
You need to have a Doc skilled in doing Bronchs and a RN and Respiratory Therapist who have experience. The procedure is done under what is called Conscious sedation and should not be traumatic for you. Like Jack I came in they medicated me, kept me for about an hour after to make sure I could maintain Oxygen levels and walk and talk, that someone was there to drive me home and i got to leave. They should give you sedation and pain control, a good nurse will insist that the Doc do this. In my case my daughter was in the room and during the procedure the computer went down and they had to fix (my Roswell alien DNA???) she said the nurse insisted that they give either wake me or give me more medication, they selected the later and truthfully I never knew, which is how it should be.

As the patient you have the right to ask how they wil medicate you, tell them that you are anxious, ask them to include pain control along with sedation. This should be basic, but sometimes patients have to ask, if they aren't willing then you have the right to request another provider who will. You pay them, they work for you. Make sure you include any bad experiences and ask them how they will avoid a repeat. Fair questions that should be heppily answered by providers who are focused on outcomes and patient safety.

Sangye
02-04-2010, 06:19 AM
I was thoroughly sedated and remember drifting away, it's just that I woke up in the middle of it and then the amnesia drug didn't work. When I had my oral surgery in 2007, the doc said sometimes the amnesia drug doesn't work and there's no way to predict when that might happen.

I agree with your recommendations, Lightwarrior. My experience happened with a highly experienced pulmy at JHU. Just my karma.

snooz23
02-04-2010, 07:58 AM
Thanks for all the insight and thoughts, I appreciate it. This is exactly the procedure they will do and it will be at the Cleveland Clinic, where they do them like clockwork from my understanding.

The really devastating news was that it is more than likely wgs. is not under control. It's so very disturbing because I have been feeling quite well (in comparison), WEEKLY blood/urine work good, going to work, getting some form of exercise each day, taking it easy yet trying to enjoy as much as I can. It is just so unbelievable you can be taking all the treatment and yet the disease continues to attack and flare, just makes no sense. However I do know many of you talk about mtx. not being strong enough to induce remission, so maybe the next thing will knock it out.

Oh, also they are going to give me some options for next steps..ctx or rtx or this new drug (all will include going back up on pred. which I HATE, I was finally down to 10mg and had worked so hard). I think after they rule out the infection I will be given all the options and need to decide. I have a feeling I will be choosing between ctx and rtx--any recommendations (I know everyone is different)???

FYI--the bronch. is scheduled for Feb. 18 much more in the future than I would like.....I cannot stand the worry and anxiety (I thought natural childbirth was a true test of meditation and visualization--ovbiously wgs was not in my life at that point).

Sangye
02-04-2010, 08:18 AM
I want to call Wegs all sorts of nasty names right now! I'm so sorry that you're experiencing this, Snooz.

Given a choice between ctx and rtx, I would definitely choose rtx. Insurance might make the choice for you, though. They typically require you to "fail" on ctx before authorizing rtx. But someone on here recently got rtx authorized without that. Maybe it's changing because of the latest study showing rtx is as good as ctx in inducing remission (and slightly better, actually).

Pred-- I truly feel for you. But given that you're feelng pretty well, maybe they won't have to increase it a lot, or maybe not for as long a stretch.

I think of Wegs as one drawn out meditation. The fears and "what if's" will keep surfacing, but you don't have to let them take hold of your thoughts. If you meditate then you know what to do: Keep bringing your mind back to where you want it to be with gentle nudges.

snooz23
02-04-2010, 08:35 AM
Thanks Sangye. Yes I have called wegs so many horrible names and am so MAD at it right now. Of course, I have cried enough tears in the last 24 hours to fill a swimming pool. Before when I was in so much pain from wegs, which was not yet dx. I could only cry a little bit because my ears, nasal, sinuses would fill it so fast and become so incredibly plugged I HAD to stop. I was so mad then too because I was like I can't even cry over this thing!!! Since that is all feeling better at this point, I guess I am using it. Now I must figure out how to STOP and move forward. Maybe rtx will be the answer (if I am "allowed" to try it).

Jack
02-04-2010, 08:44 AM
Sorry to hear of your troubles snooz, I know exactly how you feel and send out my sympathy. Unfortunately relapses are very common and go with the disease. The only up side is that you will probably get over this much more quickly than when first diagnosed and with far fewer symptoms. It is a case of three steps forward and one back, but you'll get there in the end.

elephant
02-04-2010, 09:48 AM
Snooz, I know it is no fun waiting till Feb 18. You will do fine. Glad they found the nodule in time for it not to do more damage. Did they say why you had to wait till then? My guess is probably they think it won't grow that fast. I am saying a prayer for you!

pberggren1
02-04-2010, 10:27 AM
Sorry guys! Sangye is right! It is infiltrates that Methotrexate can cause, not nodules.

That seems like a long time to wait for the bronch Susanne!

My thoughts and prayers are with you!

elephant
02-04-2010, 10:37 AM
Snooz, how often are they checking your lungs with CT?

JanW
02-04-2010, 11:40 AM
Hope all goes well for you on 2/18 Snooz. I bet they don't think it will grow very quickly at all.

My doc says that it's still hard to get rtx prescribed, but more dependent on insurer and that you don't necessarily have to fail on ctx, for what it's worth. He said it depends a lot on how hard the doc is willing to fight for it.

jeriorleans
02-04-2010, 01:02 PM
A.J. also had nodules. The last CT scan, as most of you know, two had disappeared and one had shrunk in half. What are the signs to watch for to make sure they are not coming back?

onatreetop
02-04-2010, 01:13 PM
:DI had seven small nodules in the right lung started a low dose of cytx 50mg and high pred 60mgs orally and within three months nodules no more or un able to see. The high pred was only two weeks then tapered thank god!! I was off the wall now that I look back at myself then. Good luck and know matter what happens they can treat this thing they call WG!! They just need to find the right cocktail for you!!

elephant
02-04-2010, 02:02 PM
I had no signs/symptoms that I had a lung nodule. Just happened to have a drug reaction and that led to a x-ray and CT of lungs. That's why WG is sneaky.....tip...toe

onatreetop
02-04-2010, 02:15 PM
I only had very faintly different labs that lead to more test then the catscan with contrast that fould the nodules. Stumb fall trip boom WG.

Sangye
02-04-2010, 02:30 PM
Yup-- no signs/symptoms that my lungs were getting worse. I didn't start out with nodules, "only" massive lung hemorrhaging. I didn't develop nodules until about 2.5 yrs into it.

JanW
02-05-2010, 12:51 AM
It should also be said that lung nodules can be idiopathic (no known cause). Not every nodule means WG, lung disease, etc., etc. It's very common to discover in the course of a lung CT.

Sangye
02-05-2010, 02:49 AM
In someone without Wegs, yes. But nodules in a Weggie? I don't think any Wegs specialist would accept that it could be idiopathic.

JanW
02-05-2010, 03:10 AM
I wasn't clear. I meant that nodules do not mean definitely diagnose WG or mean that someone has WG with no other symptoms. Of course my one nodule -- shrunk now but visible on last CT scan (and it was miniscule then) was categorized as WG afer I was diagnosed a couple of weeks ago but before it was considered idiopathic. Even the ENTsays that the SS could be considered idiopathic -- and that there is in fact a condition in middle aged women called idiopathic middle aged SS that is well documented -- but considering that the saddle nose is a manifestation of WG (and obviously my lab work is as well), we will call it all caused by WG for the "simplest, most elegant solution" - Occam's razor at work.

Jack
02-05-2010, 03:15 AM
I put all my symptoms down to Wegener's or side effects of drugs which means that I have come through the past 25 years without even so much as a cold!

Sangye
02-05-2010, 03:20 AM
Yeah, I understood what you meant! :)

In holistic health care, we use the word "idiopathic" but don't really believe anything is idiopathic. Everything has a cause. We prefer "_____ of unknown origin." We use the term "idiopathic" in communications with the medical profession (eg idiopathic scoliosis) or when documenting diagnoses.

JanW
02-05-2010, 04:08 AM
I think even most (all) docs believe that too. My ENT said the middle aged stentosis certainly wasn't for no reason, it's just that "we haven't discovered the reason yet."

snooz23
02-05-2010, 06:45 AM
This brings up a question for those medically savvy folks out there. What is the process of these nodules...biological what is happening? Are the nodules usually attached in the actually blood vessel? I feel like if I can get better visual of what/how my body is growing this thing, it would be helpful. When those say they have lung involvement w/ wegs does that always mean they have nodules present? Sangye how many nodules did you have after 2.5 years? Did you have ct scans done at that time?

Basically, I was scanned in July looking for signs for wegs. When nothing showed a local rheumy could not dx me and I do not think Cleveland Clinic would have at that time. It was only the 2nd scan taken Sept. 15 that showed these two nodules and gave a more concrete dx for this disease. (Quite scary what a less than 2 month gap can make). Then at the end of Oct. one had gotten smaller and the other slightly bigger. CC waited until this visit to do the scan again, and now the one is even bigger but the other has decreased again. However, they said we really should not see any after 5 months of treatment (or at least that is the goal).

elephant
02-05-2010, 08:33 AM
WG has damaged my lungs by causing asthma like symptoms, I have obstruction according to the lung function test. Parts of my lung function test are of a 80 year old. I delveloped a good size nodule which was removed. Very painful. Can I say that again," Very Painful!" thanks ....I really needed to get that out. :)

Sangye
02-05-2010, 02:16 PM
Snooz, the nodules reflect tissue death (necrosis) and inflammation. Tissue death occurs in 2 ways.

The first occurs as the small and medium-sized blood vessels become inflamed, disrupting blood flow to the tissue.

The second occurs when there is chronic tissue inflammation. Inflammatory chemicals are highly irritating to tissue and chronic inflammation causes tissue breakdown. The tissue breakdown then causes more inflammation, and the cycle persists.

I have 2 to 4 nodules. None are very big. My lungs don't tend to form granulomas, they tend to hemorrhage. I've never had a period where we weren't doing a lot of CT scans. The nodules snuck in about a year ago. I never had them before.