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Mon, Jun 15 12:12pm · Late Shift in MAC & Bronchiectasis

No I’m not! Talk to your doctor and see if you ok to get off Toby. Since I got off I’m doing really well. But don’t do anything until your dr day so. I only use albuterol and I am doing good. Maybe someday I may need but not for the moment. My struggle is with RA!

Mon, Jun 15 10:22am · Late Shift in MAC & Bronchiectasis

Hi Terry and all! I believe the best thing I have done was to get off all antibiotics until I really need them. I feel so much better and no coughing or mucus. I am struggling with RA and it is really a daily struggle. I have pains that unbearable at times and it’s worse at night. I just got my plaquenil compounded and I hope this will help. I started about a week ago so I’m waiting. Also it’s not covered by insurance which is a bit crazy. The cost is 86$ monthly. But I’m willing to do it if it works. Anyone have any information on RA meds that works please let me know. Thanks and stay safe, hugs Rita.

Tue, May 12 12:24pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi everyone, I do take prednisone but it’s a very low dose and even though it works against my immune system… I still take it for RA everyday. It helps with the inflammation. I also do the nebulizer with albuterol 3 times a week. Be safe all. Rita

Tue, May 5 3:43pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi Terri! Wow I think that’s amazing! I was happy when the dr told me to stop the Toby. But you did this and I think that is great. I am not on any meds for my lungs, I do albuterol 3 times a week. I am doing and trying meds for RA. All the best to you. Stay safe Rita

Fri, May 1 2:04pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi Sue! Do you have RA? I do and it’s just been such an experience. Pain in my body and I can’t do most of the things I used to do. I am trying to do as much as I can because I love to keep myself going. I also have Sjogrens and 1 vocal cord so it difficult to swallow pills. That makes life harder for me because not all meds comes in liquids or some pills that really works I can’t crush. It’s good that we have nebulizers and some meds to inhale. I wish you all the best and so sorry about all your pains. Rita.

Fri, May 1 11:18am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi! I thought it was just me but now I know. I had burning and discomfort in my chest for months..it was reflux and it made me so sick on my stomach also. It’s scary because I thought it was my lungs too but I’m very grateful it was not. If I eat 3 hours before bed I’m ok if not I have to sit up or it will cause discomfort. And about the thumb does it have anything to do with our lungs? I have been having some horrible pains in my thumbs and it feels like I can’t use them at times. I thought it was RA. All the strange things in life. 🙂 hugs to all. Stay safe Rita.

Thu, Apr 23 3:45pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Sue, my RA doctor said I should crush it and I did for a month plus two weeks. But my pains got worse and I felt like I could not breathe. I tried calling but could not reach anyone at the office so I call my pharmacist and he told me I am not supposed to crush it. I stopped it yesterday but I still have a lot of pain. I am totally tired of some of the doctors we trust let us down like this. I always do my research on my meds but I looked an all the horrible side effects and thought I need to try it because of the disease but I missed the crushing part. Thanks everyone. I’m still doing good and grateful that what whenever this virus is over and I’ll go to Mayo and hope Still be negative!!
Stay well all and let’s hope and pray we’ll soon see the rainbow! Rita

Thu, Apr 23 8:16am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi everyone, It’s a blessing to have help with our shopping. I also have my daughters that brings all my needs from meds to groceries and also some delicious home cooked meals. I think we live in a great country and our leaders are doing all they can to help us. It’s a horrible virus and people that keep the rules would help us all. I hope we can find a solution for this soon. I have a question… has anyone used plaquenil for RA? Please let me know if anyone has crushed it because they can’t swallow? Thanks Rita.