Thank you both for the support! I completely admire you two for coping with a chronic illness while being a mom. My mom has been so amazing throughout my medical journey all while taking care of my younger sister and brother at the same time. I can't even imagine if she were to be dealing with an illness at the same time so really you ladies are so courageous. Have either of you tried rituxan or imuran? I'll be starting an 18 month course of both and was wondering if either of you or any could provide some insight into possible side affects or the effectiveness of them. Right now (and for the past year and a half really) my biggest issue has been fatigue. I've found that yoga has helped tremendously with tapping into the energy that has been blocked in my body. I've been too weak from the 5 month steroid treatment (totally weakened my muscles and bones) and then my recent biopsy to go to a class but I'm making it my goal to go either this Friday or Saturday! I highly reccomend yoga to help with fatigue :)

-Shannon

Shannon - I haven't tried either but have heard VERY positive things about them both. I was told by National Jewish Hospital that Rituxan is if you have B cells in your lungs and Imuran is if you have T cells (found when a bronchoscopy is done). I pushed for Imuran FIRST knowing a few people who failed on steroids. Of course I didn't get my way and had to suffer through steroids. Now all that being said, I am reading more and more of people using the TWO meds together rather than separately. I have heard Imiruan causes severe nausea so be prepared...it WILL go away once you acclimate (from what I have heard). I've not heard about Rituxan. The docs at NJH told me: never help out in my daughters class again, get rid of all my pets, never swim in a public pool/hot tub, do not go out in the wind, avoid large crowds and DO NOT GET SICK....I've done my own little version of most of this lol :)

Hi, I'm new here but not to DS.
I was on Imuran and it did nothing for, I also had two infusions of rituxan last Feb. and it seems I had a slight improvement in my pft's. I see my rheumy in Feb and then the decision if we try it again.

My story......I believe my story started in 2003. We sold our alarm business and it was very stressful. I started to lose weight and then I decided I might as well go for, so I started working out and watching what I ate.....and we bought a Harley, so I had to look good in the leathers....lol

About a year into this weight loss journey I started have aches and pains, which I put down to working out at first. That winter the reynaulds set in. The next summer I was learning to ride my own motorcycle and had an accident......and ended up having several surgeries on my hand over the next four years.

I was just discharged from the surgeon for the hand issues and I noticed I had an irrataing cough that would flare up if I laughed or spoke loudly or sang along with the radio. The shortness of breath iut down to being out of shape from being away from the gym so much because of the hand surgeries.

I finally went to the doc about the cough, and he sent me for a pft and chest X-ray.......and then I was sent to a pulm doc and a rheumy and then had my assessment done for transplant and here I am!!

I forgot to mention that after four chest infections last year, I am now on oxygen.

I do yoga and work out a couple days a week to keep me strong.

That's my story such as it is. I am always looking for more info and options for living with this illness and I look forward to getting to know you all.

Beth

Hi Beth,

Do you have CVID as well? You didn't mention it which I found interesting because I thought it only happened in CVID. REGARDLESS, Im sorry you had to look for this support site but glad you found us. Its pretty rare so there are not many of us. Do you mind if I ask who your doctor is who dx and treated you for the GLILD? A transplant? OMG'sh I'm so sorry, gees I have so many questions. From what I understand Rituxan works well when you have B cells in your lungs - where I have T cells. I refused one med, CellCept, and they have mentioned Remecaid, but I am uncertain. I have a little girl and don't want to drop dead from a medication you know? Weird, I never had a cough. I felt sick, then I got so sick I couldn't do dishes and they thought I had Valley Fever , even treated me for it (even though my biopsy said GLILD - duh!). Then I went back to work and got sicker...my hair falls out and I get a weird rash on my arm and my memory gets fuzzy - thats how I know the nodules are back...strange huh? I have posted parts of a presentation on GLILD I saw when I went to the Immune Deficiency Foundation - they are on here. Thank you for joining us!

I'm a total crackbaby - this is not JUST a GLILD support group, its an ILD support group - BWAHAHA see the memory issue? I started the stinking group lol gosh Im sorry thank you for joining us!!!

My official dx is MCTD......mixed connective tissue disorder, which encompasses in my case lupus, rheumatoid arthritis and possibly scleroderma???? My blood work is coming back more RA lately.
My doctors are Dr. Nicole le Riche. Rheumy
Dr. David McCormack respiratory
Dr. Matthew Binney. Transplant team

Hi Beth - you are an amazing, strong woman! How great for you that you continue to do yoga and workout when you can. I'm convinced that no matter how painfully exhausting sometimes, you just have to force yourself to do it. I was diagnosed with GLILD after a biopsy - I have tons of B Cells going on and enlarged lymphnodes EVERYWHERE. However, my bloodwork came back as not having all the Immuno-deficiencies they thought I should to call what I have CVID. The granulomas have spread to my kidneys now too. I've been referred to the Mayo Clinic to see if they can help on the immunology front, and I'm being set up to see a lymphoma specialist at Stanford. I'm hesitant to be hopeful for a diagnosis.

Right now I'm on 4 inhalers, I've started getting classical migraines - probably from those. I'm also relapsing with GLILD, or something, as I'm so exhausted I can hardly function. I tried to do a spin class on Friday, which I finished, but then I was in bed for the next two days so tired that I could hardly lift my body. Thank God I have 4 children so that I have to force myself. Kelli -- my concentration has been awful. I've SERIOUSLY considered asking my doctors for ADHD medications to help with my energy and concentration. I'm sure they would look at me like I'm stoned... but hey, I have something to blame it on! HEE HEE!!

Kelli -- did you see in a previous post about the person who had high T-Cells and was put on Cyclosporine to help her? Check out that post... from May, I think. Maybe that could be an option for you??

I met a person in Denver who belongs to a support group called the Invisible Medical Misfit Society. Isn't that so hilarious!! I'm joining... just because of the title... so fitting!

Best wishes to you, Beth. You will be in my prayers. Thank you for your post and for reminding me that strength is more than just physical.

Take care, ladies!

Andee

LOL.....thanks Andee, but Im no more amazing or strong than everyone else here! I think anyone with a chronic disease and continues with their life is amazing.

I made that decision early on.....I think sometimes when you face your mortality you ask yourself do I keep living to the best of my ability or give up, I chose to keep going. I found it freeing to let go of all the crap and pursue happy things and let all the stress and petty stuff.....because it really doesn't matter in the end

Andee - I actually went through the old posts and saw that YESTERDAY (great minds right?) and Googled it. It doesn't sound half bad. Im thinking I am going to ask for a referral to see Dr. Routes. My sister said she feels like I'm giving up and i"m like no not really, I'm very happy, its just so stressful to know which decisions to make, you know? My bff doesn't know whats going on, I dont' date, no one to talk to about this crap, so I chose not to think about it for awhile lol So glad I have ya'll here :)

Great advice, Beth! I read it as my boss came into my office snuffing up a wad of boogers because he has a cold!! Good Lord. He left, then about sneezed his brains out in the hallway. To say I'm grossed out is an understatement. I work for 3 men, all of them are great, every once in awhile they have a lapse, though.... they are men, afterall. HA!! I sent them all an email, asking them to kindly leave their crud at home, or at least let me know and I would work from home, or come in after hours when they have left. The small office has it's other perks with this illness. I do all of the purchasing for the office - so we have Clorox wipes, hand sanitizer, hand soap, a dishwasher and very thick kleenex.... I have to say, I thought it was very sweet when one of the guys went so far as to bring in Emergen-C packets for all of us for the kitchen.

Kelli - ANYTIME you want to call, blog, email... please feel free to do so! I will email you my phone number. I'm serious! I know how you must be feeling. It is hard to have these misfit diseases and to know what to do since nothing directly treats the diseases we have. We aren't blessed with a clear definition of how we should do things. I'm confused too, I never know how much to advocate for more answers, and sometimes I just want a break to be "normal". I think much of the problem is, that for the most part we look okay - we "look" healthy. What if we could walk inside out for a day?? Then what? We'd probably get some attention then! I've also stopped telling friends/family about my ordeal. My mom worries that I want to give up - but I don't, I'm just lost. Also, I don't want them to worry. I also can't explain the exhaustion - NO ONE understands how bad it is. It's terrible... People joke and say "you need a double shot of espresso"... I wish it were that simple!

Hang in there ladies - I find this support group to be so helpful! It's good to know people "get it".

Andee

Bump for new people - slides from IDF conference - dealing with lung disease photos of presentation on page 2