Have to start the big three
I just got the results of my CT done yesterday. There are now enough changes that I am being asked to start the Big three. I have an eye exam tomorrow and then I guess I start. I really don't cough much mostly feel like I have junk in the back of my throat only. Sputum inductions have not been successful so it will be hard to see if there is any improvement. I am really sad that I am advanced now to this stage. Many of you have already been there and beyond. Please share any advice on tolerating the medications.
JoAnn K
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I will look online for them and get some ginger tea
I had my bronchoscopy 14 days ago and have been told that the results are not narrowed down enough yet. I am so scared I’m going to be told I have MAC; I would not think there are a whole lot of germs that cannot be identified after 14 days.
My problem is severe Crohn’s disease. I have night sweats, fever, constant diareah, weight loss and severe abdominal pain. My GI was ready to start me on Remicade, and then my lung CT showed nodularity, which meant I couldn’t get my Remicade.
I would love to know if anyone else on here has severe Crohn’s disease?
I cannot imagine how I could tolerate antibiotics because I cannot eat except what is absolutely necessary to survive - and then I have to live with the pain to digest it.
Please. Does anyone else on here have severe Crohn’s?
I don't have Crohn's but if your bronchoscopy show MAC then maybe you would quality for the Nitric Oxide study being done in Vancouver. JoAnn K
@heathert, Great suggestions Heather. Gosh, the things we have to go through to get through life sometimes.... I am just sayin'.
@jenblalock, Hi Jen. It is good to hear success stories from those who have taken the BIG 3. I hope that you will stay with us even though you are not infected. Your story can inspire others. I am glad to know that that worked for you. - Hugs!
@pinktower, Hello there, and welcome to our forum. Do you have a first name? First off, I am sending you a big cyber hug because I know how sufferable it is to have Crohn's. My husband, his siblings, and his daughter have that. My step-daughter went on Humera for awhile; that seemed to help. It went away for several years until a stressful job brought it back on. I have a feeling that all auto-immune diseases make us suseptible to MAC. As far as your test results go, it takes 4-6 weeks to grow MAC. So, you need to give that more time. In dealing with Crohn's, I would seek out a teaching medical institution like the Mayo Clinic, Johns Hopkins, NIH, etc. I just spoke to my husband about your situation. He reminded me that when he was put on antibiotics, his Crohn's cleared up. He also said that his diet had a lot to do with it getting better. He found that wheat, barley, and oats (including oatmeal) would bring a flare-up on. You may have a food sensitivity as well. Maybe try a food diary to document what you have eaten and the effects afterwards. I myself have a gluten sensitivity. Every time I eat breads, pasta, and the like; I tend to get a lot of phlegm build-up in my lungs. Please keep us posted on how you are doing. Also, check to see if Connect has a Crohns support group as well. I hope you find some resolve soon.
@jkiemen, I am sorry to hear that you have advanced to needing the BIG 3 antibiotics. Many who have travelled this road before you have suggested that you start out by taking one med alone for the first week, then introduce the second med along with it the next, and so on. That way; in the event your body cannot tolerate it, you can pinpoint exactly which one is not agreeing with you. There is also times of the day and around meals that affect how well you can tolerate the meds. I used to have the schedule that worked for our previos Mentor, @kateman, that had successfully scheduled her meds to where she could tolerate them. I am sure someone has a link to that thread. I have a brand new computer and am losing my AOL, so I do not have access to my old saved file cabinet. I will try to recover them for you. But, hopefully others here will post them. Wishing you the best, Terri
Thanks @windwalker yes it can get tough, but thank goodness we have each other!
Any tips for tolerating the medications are really appreciated. I am trying to figure out how this is going to work along with a full time job, if I should take them in the evening etc. JoAnn
@tdrell, Hi Terri. I am SO glad you are back! Lots of hugs to you.