Hi, I am a 22 year old female with 2184insA gene. I going to be a senior in college starting this fall. I have only had 4 hospitalizations in my life. After my 3rd hospitalization which was for pneumonia my FEVs dropped dramatically from damage and now have serious scarring in my lungs. My last hospitalization was for a virus that I had caught at school which caused heart problems. I am pancreatic sufficient and have no digestive issues at all. Currently my main problems are joint pain, osteoporosis, heart issues, and severe lung inflammation. I had to stop taking tobi and am now on colistin because my body seems to have developed an intolerance to it and causes severe throat and lung inflammation. I have tried prednisone for this issue but you can only take it for shorts periods of time (14 days) and did not have any significant difference. Foradil and ProAir are inhalers that help the most. I am wanting to try medical marijuana cannabis oil (edible form) for inflammation but of course my state hasn't legalized it yet and my family is considering traveling to Colorado to try it. Because of my gene rarity (>1% of US population) I am not allowed to try any of the new medications like Kalydeco or Lumacaftor. My doctor says nothing will be available to me for another 5 years. I am wanting to know if there are any drugs or prescriptions that will help fight my inflammation.
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Inflammation
- Thread starter calliejoy
- Start date
It's not a medication, but I drink a lot of green tea. It has anti-inflammatory properties, and can actually increase the effectiveness of some antibiotics. I really don't like the taste, so I add a little bit of peppermint. Here's a website that lists benefits and warnings. Hope this helps!
http://umm.edu/health/medical/altmed/herb/green-tea
http://umm.edu/health/medical/altmed/herb/green-tea
Have you tried adjusting your to diet to be more anti-inflammatory? Even if you don't have digestive problems, if what you're eating is causing inflammation, that can manifest anywhere in your body. There's a lot of information online about anti-inflammatory diets. If you eat refined foods, cut those out first. If you eat a lot of grains, try reducing them. You can look at your omega 3 to 6 ratio also. Since you have joint pain, you also might want to do some research about nightshade vegetables. This may or may not have a big effect, but I think it's worth a shot.
J
jamest
Guest
High-dose ibuprofen therapy. This was specifically researched for the treatment of inflammation in CF lungs. The dosage is based on body weight, your doctor should be able to calculate it for you. Basically you just take 4 or 6 or however many advil every day.
Also: I took prednisone for over a year. You can do it long term if necessary. It just has a lot of negative side-effects. You and your doctor would want to weigh those against the benefit for the drug. In my case it was the only thing that worked at the time, I would do it again.
Also: I took prednisone for over a year. You can do it long term if necessary. It just has a lot of negative side-effects. You and your doctor would want to weigh those against the benefit for the drug. In my case it was the only thing that worked at the time, I would do it again.
imported_Momto2
New member
Another thing to throw into the pot- The high dose ibuprofin didnt work for me, prednisone did, but my doc didnt want me on it long term (ie the rest of my life). A drug that has been shown to be effective for inflammation is methytrexate. I've been on it for 7 months now and it does work. Not quite as well as prednisone, but is about 75% as effective. It is a chemo drug, so I get labs drawn every couple of weeks to check my cell counts. But basically, my immune system was in overdrive after years of lung issues and started really targeting my lungs, causing a big drop in FEV in a short period of time. The MTX has really helped. MIght want to discuss with your doc. Oh, and I havent had any issues with picking up additional infections on it, its just vamped down my immune system so the values are relatively normal, not high.
My son has had success with profilactic Azithromyicen. He's also using a supplement called BCQ which includes boswella, bromelain, curcuma, and quercetin. He does a high dose of vitamin D and pharmaceutical grade fish oil. These additions to his regular Meds have drastically reduced lung exacerbations and are all meant to combat inflammation. With our CF teams blessing, we sought out a Naturopathic Pulmonologist for complimentary care. I highly recommend!
A
alegris
Guest
I also have a frameshift mutation (3396delC) and get severe joint pain, mostly in my hips. I started taking a curcumin supplement which helps immensely. I'm not entirely sure how it works but I know it has many benefits as well as being an anti-inflammatory. I was skeptical when I first heard about it so I just bought a cheaper brand off of Amazon. I've been completely off pain medication (just over the counter) since a few days after starting the curcumin. It's been a few months and it's still working great. It's worth a try at least for the joint pain.