new to gpa

[keegan55]

My story is long.....I have been on biologics for psorasis ans the arthritis that goes with it. Sept 2013 I got sick started coughing up blood so after 2 weeks they did chest xray found 4 nodes 3 in right lung and 1 in left in June of that ear I had negative xray. I have had raspy throat since i was sick in Sept. the diagnosed all this as pnuemonia did a ct a month later still there had ct guided biopsy and bronch all was inconclusive ct scan in Jan showed 2 of the nodes had grown sent me to surgeon. he went on about cancer so did not like him went to Duke in Raleigh NC they did a wedge biopsy where I lost 1/2 lower right lobe and part of middle right lobe so then the diagnosis of GPA.Have had blood work anks are negative kidney ok so treatment started of 15 mg methotreate I have diabetes and steroids kill me have taken so many over the years for joints

I am so short of breath and sleep all the time
Is this enough to treat this disease
how do you know when you are in remission

my spelling is terrible sorry

[windchime]

Welcome to the forum Keegan. So sorry you had a reason to find us, but glad you are here. There is a wealth of information in the archives and you will find the people here are warm and supportive. There is usually someone around 24/7 as this in an international site. So feel free to vent, ask questions, share information etc.

Sounds like you've been through the wringer the last couple of months. Congratulations for having the courage to change docs to one you like. I would guess that the SOB is caused from the loss of parts of your right lung. I have a collapsed lower and middle lobe on the right and I have pretty significant SOB. Enough to be on oxygen. Your treatment sounds not at all aggressive. With your nodules coming fast and furious I would have thought they would have tried Rituximab. There are alternatives to prednisone also. Someone else will have to supply the name as it is not currently coming to the forefront of my brain to share it with you. The fatigue is part of the disease.

There are two types of remission. Drug induced remission and drug free remission. Which you get to be remains to be seen. Your nodules will shrink and disappear and other symptoms will also decrease, but some like the fatigue will never fully go away. Are you in any kind of pulmonary rehab? I started this about a month ago and it's great for building some muscles back up and helping with breath control. They teach you a lot of things there. Ask your pulm doc about it. It's worth it.

Hope this helps in some small way. Again welcome to the forum.

[keegan55]

thanks for the warm welcome and ll the information I agree with you that I do not think they are being aggressive enough will have to do something else then thanks so much

[windchime]

Try discussing it with your doc and find out his reasoning. Ask questions, lots of them. Be your own advocate. If you don't like the answers or don't understand something let them know. Don't take my opinion alone. There will be others chiming in. Listen to what they have to say also.

[Titus3:2]

Hi keegan55, I am sorry you have this disease,and other medical problems.I would not want to second guess your doctor.Your overall health can dictate what your doctor will prescribe to treat you for WG.I was on 25mg once a week of Methotrexate for over a year as a maintenance drug.It did not work in my case.However it made me very tired,and ill in general shortly after I started taking it.It could have been the return of WG symptoms,but I don't think so.Cytoxan has always worked at putting out a WG flare for me,but it is quite toxic.Hang in there.

[Dirty Don]

Welcome Keegan, so much to learn, so much to say...way it is with WG. I agree with Cindy in that your docs aren't being aggressive enough. My docs are/have been aggressive and they went after the WG right away. They were very annoyed with the first hospital who didn't 'slam' me with the correct drugs immediately in order to get the WG under control. There are other options to prednisone, but don't know their effects. BTW, nice new avatar Cindy!! Best to you Keegan...ask questions!

[lag713]

Welcome Keegan! I'm sorry you've been on such a difficult journey to find a diagnosis and get treatment. I can't begin to second guess your physicians. I can only say that it never hurts to get a second opinion. Maybe see a physician that has experience with Wegener's?

I hope you get the treatment that is right for you and start your path to remission. I haven't reached remission yet but remember that there is light at the end of tunnel. Focus as much as you can on taking care of yourself both physically and mentally. Ask all the questions you can and search for answers from the right sources. Knowledge will give you the ability to become a better advocate for yourself.

[darl-p]

Welcome Keegan,
I have only been on this site for a short time and find it encouraging following the stories. Lots of discussions here with being one’s own advocate. I have had Wegeners for 7 years and keep all the data on a spread sheet. When something seems out of order I talk to the docs. My medical team has been very responsive and orders any and all labs required for assessing the situation. This was after my initial primary said my symptoms were probably due to my age. She was fired, by me, and then thing have progressed to the good side. My lead doc has been a nephrologist due to the kidney damage done. In our discussion last week I asked if there might be someone that deals more with the overall disease and he passed me along to a rheumatologist who saw me the next day. After a 1 ½ hour review of my body and all my records he felt that it was time to back off the meds slowly and see how I do. The first is getting rid of the prednisone over 4 weeks and labs to check the effect, and then the imuran goes. My records show the possibility of 2 flares in 7 years. My nephrologist was content to hold the status quo since all seemed to be working fine. The problem I was having was the meds can have a long term adverse effect. I am with Kaiser and all medical records are electronically kept so all docs have access to everything. Lung damage was done early on and no indication of activity now. A CT will follow in two months. When I left the meeting the sun was shining inside and out, and if you know Oregon this makes a very good day. Had I just left things as they were without questions I may have been on all meds for a long time. Here’s hoping and good luck in your journey.

[annekat]

Welcome, Keegan. I'm glad you found us, and you will feel a lot less alone by checking in here every day and reading and joining in with discussions. Use the Search function, too, to have access to all the past archives.

It seems to me, too, with your lung involvement, that the methotrexate you are getting, with no steroids, is not aggressive enough. Rituxan seems to be most people's drug of choice now for serious cases, but aside from it, if I were your docs I would have chosen Cytoxan over MTX, as it its a hard hitter which cleared up my lung issues fast. The less time spent on it the better, though, because of toxicity concerns, which can be allayed to some extent by drinking LOTS of water. All of the drugs we take have some side effects and possible dangers, but they are better than the alternative of having untreated GPA.

Not going to go on and on, just glad you are here, and other responses will follow, I'm sure!

[MaxD]

Keegan,

Welcome to the site, sorry to hear about your experiences. At the least you need to collect all your records and see a GPA specialist as soon as possible. Hope you get on a stable path to remission and feel better soon.

My story is long.....I have been on biologics for psorasis ans the arthritis that goes with it. Sept 2013 I got sick started coughing up blood so after 2 weeks they did chest xray found 4 nodes 3 in right lung and 1 in left in June of that ear I had negative xray. I have had raspy throat since i was sick in Sept. the diagnosed all this as pnuemonia did a ct a month later still there had ct guided biopsy and bronch all was inconclusive ct scan in Jan showed 2 of the nodes had grown sent me to surgeon. he went on about cancer so did not like him went to Duke in Raleigh NC they did a wedge biopsy where I lost 1/2 lower right lobe and part of middle right lobe so then the diagnosis of GPA.Have had blood work anks are negative kidney ok so treatment started of 15 mg methotreate I have diabetes and steroids kill me have taken so many over the years for joints

I am so short of breath and sleep all the time
Is this enough to treat this disease
how do you know when you are in remission

my spelling is terrible sorry