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Jo Ann K
@jkiemen

Posts: 373
Joined: Jun 23, 2017

Have to start the big three

Posted by @jkiemen, Nov 28, 2017

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

REPLY

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

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@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

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

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@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

@heathert

Hi @jkiemen I have been on them for 3 years and for me it got better after the first 6 months to a year. At first I had nausea, I sucked on ginger lollies constantly and drank ginger and licorice tea which helped alot. I also had gerd/heartburn so took omeprazole for that which keeps it at bay. I also felt flu like for some time. So although there were symptoms I eventually had them sorted and after a year on them felt alot better. Everyone is different so I hope you do really well on them.
Take Care
Heather

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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 Jkiemen, NJH said I would not need antibiotics since my issue was aspirating stomach contents which contain MAC from our Water supply vs lung infection. So I have no experience with the antibiotics.
You need to have hearing tested also prior meds I believe.
Have you watched National Jewish Health series of videos on NTM from 2016 which have specific tips on taking the meds.?
Tdrell

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@tdrell, Hi Terri. I am SO glad you are back! Lots of hugs to you.

I have learned allot from everyone.

@jkiemen

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

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Hi @jkiemen Try different times of the day everyone reacts differently so hard to know to know, I take mine first thing in the morning as it fits in with my other meds. take them with a cracker to help your stomach, even though some say on empty stomach this has now changed (NJH advise). There are great videos on Mac on the NJH website.Good luck.

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

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Hello JoAnn, I took Azithromycin, Ethambutol, Rifampin for 18 months and then inhaled Amikacin for 3 months. The side effect of the meds. is making me sick on my stomach, cramping, and diarrhea but it went away after a few months. I found out to avoid stomach cramping is eat rice and banana and that calm my stomach. I went to NJH and my Dr. took me off all the antibiotic and my 3 sputum culture came out negative. I went through what you are feeling and scared to death but it will be alright just listen to your body when you start your meds. We are all here for you. I will pray for you! Cila

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

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Thank you, Prayers are welcomed. I have on my list for tomorrow Rice, Bananas, Ginger Tea, Ginger Lollies if I can find them and a good quality Probiotic..

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

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@windwalker , @jkiemen – Here is what I have from Katherine. Keep in mind, she was taking meds for other things as well as MAC so weed out what doesn’t apply.

**the probiotics should not be taken for at least two hours after you take the antibiotics
SCHEDULE FOR MEDS AND VITAMINS November 2011
1. Wake up: take probiotic, Aciphex & Synthroid on empty stomach
(Aciphex-at least 1/2 hour before eating-1 hour after. Separate Probiotic from antibiotic by at least 2 hours!)
2. Wait 30 minutes: Eat breakfast .. .. take regular a.m. meds & vitamins
3. 1 puff Qvar .. rinse mouth well .. brush teeth.(SET 5 CELL PHONE ALARMS!!).
4. ONE hour later take Homeopathic remedy after nothing in mouth for one hour
5. AT LEAST THREE hours later .. take Rifampin on empty stomach.
(Rifampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour after vitamins)
*( IF POSSIBLE TAKE 2nd PROBIOTIC 2 hours after Rifampin)
6. AT LEAST ONE hour later.. take antiobiotics except Rifampin with a snack.
*OR 2 hours after Ripampin IF TOOK 2nd PROBIOTIC* (Avelox-4 hours after or 8 hour before multi vitamin with a full glass of water)
7. Six hours to Seven hours later take regular p.m. meds (Crestor &Evista) & multi vitamin & Nioxin (zinc)
after evening meal or snack. At least 2hrs (before or after) calcium, magnesium,iron or zinc.
8. Eight hours later take 2nd probiotics on empty stomach. **probiotics must be taken at least two hours after you take antibiotics
9. Nebulize Amikacin. Take nebulizer apart, clean in hot soapy water & sterilize nebulizer!
AVERAGE AMIKACIN SCHEDULE BETWEEN DAY TO DAY-try to stay same every day within 4 hours .. at least within a 12 hour period!
10. Before going to bed: take Homeopathic remedy after nothing in mouth for an hour. (as needed)
11. 1 puff Qvar .. rinse mouth well .. brush teeth.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

NOTES ON TAKING ANTIBIOTICS
Wake up am probiotic on empty stomach
Ripampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour before vitamins
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and pm probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)

BUT RECENTLY I FOUND the below.. if I had it to do over again I think I might simplify it and JUST do this one probiotic daily and see if I could get by with just the one .. see what happened. BECAUSE it has 50 Billion PLUS it has 10 different probiotic strains .. ALL in just ONE probiotic pill! Now it does have to be refrigerated .. but I think it is going to be worth it. Even though I am not on antibiotics at this time .. I still take a daily probiotic for basic health .. this is the one I am now taking.
NOW Foods Probiotic-10,
(50 Billion, 50 Vcaps Healthy Intestinal Flora*, KEEP REFRIGERATED TO MAINTAIN POTENCY 10 Probiotic Strains, Dairy, Wheat & Gluten Free – Vegetarian/Vegan Formula) http://www.amazon.com/NOW-Foods-Probiotic-10-Billion-Vcaps/dp/B0031RJXCK/ref=sr_1_2_a_it?ie=UTF8&qid=1465156239&sr=8-2&keywords=probiotics+50+billion

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

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Thank you I better check out the probiotic strains but I will try for one that is a refrigerated one

I took two probiotics in the morning and two in the evening at the advice of NJH doctor. I still take one in the morning even though I am off meds. The gut flora is slow to recuperate (if ever). I also ate some yogurt every day and started that even before I started meds. My doctor at NJH recommended Jarrow Formulas Jarro-Dophilus EPS, 5 Billion Cells Per Capsule. I ordered from Amazon: https://www.amazon.com/gp/product/B0013OUKTS/ref=oh_aui_detailpage_o00_s00?ie=UTF8&th=1

I took my meds around lunch time but I also had cut back my work hours to part time so took them after I got home. I have read where some people take them at night so they would sleep through side effects. I received more complicated instructions on what to take when from NJH but taking them all at lunch time worked best for me so I stuck with that.

It’s all recommendations and no hard and fast rules so you have to do what fits with your lifestyle. I think allowing for flexibility helps with compliancy.

Thank you I will try those since they are recommended from a reputable source. Thanks so much everyone.

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

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@jkiemen, Hi. I just edited my initial response to you because I left out some key elements about introducing your meds one week at a time. How are you doing so far?

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

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I am picking them up today because they had to get enough in stock at the pharmacy.

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