Recent content by 4hats

I’ve been on Symdeko for almost 4 weeks now. I’ve had no side effects from it. All is well on it. Previous to that I was on Kalydeco for about 9 months. I’ve not seen any notable difference after I’ve made the change to Symdeko. My PFTs went up a few points initially on Kalydeco then went down...

I have been using Cassia, cinnamon and oregano. I rotate between them, using two of the oils every night. Just a drop or two on the bottom of my feet. I believe this has really helped. My cf doctor encourages me to keep doing the oils, even with just starting Kalydeco two weeks ago. Hope this...

Also, I did see a rheumatologist and immunologist during that time period. They ruled a lot of stuff out.....

I have cultured MAC. About a year and a half ago I was having similar issues, low grade fevers up to 101 or so, and swelling of joints, etc...very painful. It was an arthritic response throughout my body. It could very well have been Mycobacterium Avium complex immune reconstitution inflammatory...

I also experienced similar symptoms in the past year or so. I had a nasty rash all over my body which was probably due to an allergic reaction I was having to my MAC antibiotics. I would start the meds and shortly thereafter, I would breakout in a very painful rash. In addition to this, I was...

Just FYI. I had a colonoscopy today. Have some small internal hemorrhoids that were responsible for the bleeding. Everything else was ok. Thanks for the responses.

I am currently on Rifampin, ethambutol and Azithromycin to treat MAC. Over the last two weeks I have had blood in my stool 3 times, bright red. Rifampin is known to cause bleeding as a side effect. Has anyone experienced this while on rifampin? Did you discontinue it right away? Thanks for your...

Mep, I want to give you my experience with MAC. I am currently on my second round of MAC treatments. My first treatment of Rifampin, Ethambutol and Azithromycin lasted for 12 months. Prior to my first set of treatments I had recurring low-grade fevers, lethargy. I was wiped out. My pfts went...

I treated MAC for 12 months starting in June 2013. I had negative cultures for 10 months and then I had a positive one while I was still on the treatment (rifampin, ethambutol, azithromycin). We stopped the treatment 2 months later to see how I would respond. A few months later I started...

I see that you have cultured MAC before. Have you ever tried to treat the MAC, or are they just taking a wait and see approach? MAC can make you feel very sluggish, tired, like you don't want to get out of bed, low grade fevers (at times), night sweats (at times)......I've suffered with MAC. I'm...

I was on IV Ceftriaxone for two weeks. The first week I was doing ok. The second week I had a very bad reaction to it: fever over 102, chills, leg pains, body rash, etc....I would feel this way about two hours after I infused myself. My bloodwork showed my white blood cell count as low as well...

I had my first PICC line in January. They put it in while I was in the hospital for 5 days. I had it in for two weeks and then had it removed once I finished my IV course. I did not know what to expect, but looking back it was not too bad. I went to work with it. The worst part was the...

My doctor said that exercising is the best medicine she could give me. Of course, I take all my meds and I am totally compliant with my treatments, but I would say that exercising is my key to staying healthy. I too was diagnosed as an adult but I exercised throughout my life and maybe that is...

I am so very sorry for the loss of your very dear friend. Please pass on our condolences to the family.

Jessica, you can find out more information on different types of mutations on the following website http://www.cftr2.org/browse.php