EXCELLENT! The combo treatment is good! Ok I don't have time to write what i want right now (on my way out the door) BUT I do want to reply!! So glad you found this very inactive group. Will reply SHORTLY!!

Hi there! So glad to hear that other docs are taking the combo chemo route. I know probably about 4 people or so who have gone this route and had very good results. Gone on to work, have babies, etc. I originally went to National Jewish and of course they treat with steroids (which fail). Then I went to Dr. Routes in WI (who used to work at National Jewish) and he has quite a few with the GLILD and LIP and has had great success with Rituan & Imuran (wrote a paper on it too). Unfortunately I had not had an open lung biopsy at the time so he will NOT treat without one and now my local doc refuses to do one because he is scared of the meds. I guess since I still wear make up and work in his book I am not "sick enough". So I wait. I do pretty good, fatigue is big for me. And I get weird symptoms that the docs dismiss. I can tell if my lungs are acting up because my hair falls out, I get this overwhelming exhaustion, its crazy. Would love to chat!

Thanks so much for the reply. Do the four people you know belong to this site? How long have they had these issues for?

I would highly recommend getting the VATS procedure done in order to start the combo chemo. Everyone I have talked to seems to think a passive approach is not good over the long term but I guess as long as you watch it you're ok.

The Dr I am seeing in Minnesota her name is Dr. Avni Joshi. She works closely with the Dr in Wisconsin.

Do you know of any side effects people have had w the combo chemo?

Since this all started for me almost a year ago I have worked FT throughout which has been very hard as I have been sick almost the entire time. Took 2 weeks off after my VATS and then worked from home for June and July as I needed to shelter myself from germs until the IVIG kicked in and my levels increased.

A couple of them do, although we don't get much action on here because we are so few.

I actually volunteered to get the VATS but then my local pulmonologist refused. He pretty much wants me on my death bed before we proceed with VATS or chemo therapy. My goal is to get it done before they let me get so sick I end up on disability. I'm a single mom and work full time, so I'd like to prevent that from happening lol. I do very well though, recently started exercising (walking, then jogging and now kickboxing) and my lung function (diffusion) increased 4%. I was very pleased. I'm considering starting a GLILD specific group on Facebook. I'll send you the link.

So the people I know who did the chemo did very well. Rituxan is more than once if I remember correctly. I actually took Imuran but developed a horrible intolerance for it. Dr. Routes did say that is common (vomiting) and that there is an alternative to the Imuran for those people that happens to.

There is also a CVID group on here. Common Variable Immune Deficiency. I think its very important for the GLILD that your CVID be well treated (good levels, low infections, etc). I also take a prophylactic antibiotic that can help reduce inflammation in the lungs (was biaxin now azithromyicin). Boy you 2 whopping diagnosis in a short time. How are you doing? It DOES get better, I promise. It just takes a little time.

I started the group on Facebook. It will grow fast:

https://www.facebook.com/groups/714444915316813/

Thanks Kelli! I requested to join yesterday. Hopefully we get a good group as I am eager to learn more from those on the combo chemo treatment.

Also, side note. Since I have been diagnosed with CVID in May/June I have been sick about ten times. On antibiotics about 8 times. Currently on them now with a chest infection! I just cant get a break it seems...

Only done 5 IVIGs though so it may take a bit longer to really kick in.

Do you know, those that did combo chemo- did they work throughout? I dont know what to expect w work orhow I feel etc, do I need std?

I believe they all worked while doing treatment. I can pose the question in the group and see if they will answer. I may put a note out in the bigger groups that I started the GLILD group so people know. I know there was some very recently diagnosed people on there. I appreciate your patience while I try to "grow" the new group on FB :)

Hi!
I have the exact same diagnosis as you two, and I have been looking for people to talk with about this for a year. So glad I found you! It does get better after the combo treatment, and I agree with everything kelli1b said! I read that you are able to exercise again...how far can you run now? I used to be a marathon runner and since the diagnosis have lost so much lung capacity. I can run very short distances now (less than a mile) before having pain in my chest. I just was wondering if our lungs will ever be able to sustain strenuous exercise again.
Hope you both are well...I see it has been a year since you last posted.

I have CVID and I also see Dr. Joshi in Rochester, MN. I'm still undecided whether to have the brochoscopy to confirm the GLILD that she and Dr. Motosue believe I have, I've taken Plaquenil now for about 7 years for Sarcoidosis and the granulomas were greatly reduced and I'm considered in remission with the sarcoidosis, which now they are considering to be GLILD. So I have been trying to convince myself that my lung condition is Sarcoidosis because the planquenil worked for me. I had the granulomas in my liver and spleen, those cleared up completely. But now I've searched for the combination of GLILD and plaquenil and found it has been used in the past for GLILD. So maybe the plaquenil has been an effective treatment for the possible GLILD?

Hi ladies!

bkacz - I've heard amazing things about Joshi and hope to see her some day. I've not heard of bronchoscopy confirming glild, only biopsies. I have heard bronchiscopies being used to determine if you have b cells or t cells in your lungs (each chemo drug attacks one or the other from my understanding). Rituxan attacks the b cells and Imuran attacks the tcells.

All in all, I hear pretty positive things from people who have gone through the treatment.