Advice for not being able to tolerate minocycline or doxycycline

[Edie]

I have been encouraged by the may stories on the RoadBack foundations site. I am an 83 year old woman who has had R.A. for five years and have used methotrexate for that time. It feels like the right time to try the antibiotic protocol.
I am very sensitive to drugs. I have tried one minocycline 100 mg/day and after five days became very sick. Also tried one doxycycline 100 mg/day and after three days became sick. Tried pulsing and became sick on 1 dose of minocycline. Does Anyone have experience with this and would be able to offer me advice or help? Also my diet is healthy plus am using lots of supplements, fish oil etc.
Sincerely,
Edie

[Linda L]

What other medications are you taking? How sick were you after mino/doxy?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[PhilC]

Hi Edie,

When you say that you became sick, what exactly does that mean? What symptoms did you have?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Edie]

In response to questions about my reaction to the antibiotics, five days of minocycline made me non functioning. Headache, brain fog, weakness, joint pain. Generally feeling awful. With the doxycycline all of the same plus vomiting.

[Lynne G.SD]

Hi Edie;
If the mino/doxy upsets your stomach make sure to take it with low calcium/iron food.I cannot take it on an empty stomach at all.Did you think that you might be having a herx? It usuall
hits me after a week or so when I change dosage or add a new antibiotic.For me this is normal and I just ride it out.

[PhilC]

Hi Edie,

Edie wrote:

In response to questions about my reaction to the antibiotics, five days of minocycline made me non functioning. Headache, brain fog, weakness, joint pain. Generally feeling awful. With the doxycycline all of the same plus vomiting.

That’s normal, and not at all unusual. It’s actually a good sign because it means that the antibiotic is working.

Overall, doxycycline should be easier to tolerate than minocycline. Even so, pulsed dosing will probably still be necessary — at least in the early part of your treatment. If taking 100 mg of doxycycline on MWF is too difficult to cope with, you may need to start off taking it twice per week (e.g., Mondays and Fridays), or even just once per week.

For more information, please see:
https://www.roadback.org/faqs/#faq-question-190366

Are you still taking methotrexate? When you take the antibiotic, have you been taking it with food?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Edie]

Thank you Phil for your help. I am not taking the methotrexate. Also, I was taking the minocycline with food and the doxycycline just with water.

[Lynne G.SD]

Hi Edie;
If it ends up that you really cannot use tetracyclines you might be able to use Zith.I know several people who did extremely well with it.You might be able to find old posts at least 15 years back done by Dolores Rosner here.She has been in total remission for ages.I did try Zith in hopes that changing meds might help with hyper pigmentation but did not do as well and went back to doxy.

[Edie]

Thank you for your suggestion Lynn.

[Lynne G.SD]

Edie,I forgot to mention that the dosage is 1 tablet a day for 5 days and then 5 days off.

[PhilC]

Hi Edie,

Edie wrote:

I am not taking the methotrexate.

You might have been better off if you hadn’t stopped taking the methotrexate. It’s likely that your reaction to the doxy and mino would not have been as strong. Some people continue taking methotrexate after starting on antibiotic therapy. One person told me she felt that staying on methotrexate for a year after starting on antibiotic therapy was very helpful.

Edie wrote:

Also, I was taking the minocycline with food and the doxycycline just with water.

I would never take doxycycline or minocycline on an empty stomach (especially doxy). I know from personal experience that doing so is asking for trouble. I’ve always taken them with some food, though not with a regular meal. Some foods I have used are: 1) About ten Utz pretzel nuggets, 2) Two pieces of whole wheat toast, 3) A large bowl of applesauce, and 4) A large bowl of parboiled rice, thoroughly rinsed before cooking. I also swallow a capsule of fish oil right after I swallow my doxy or mino.

Regarding azithromycin, I would not recommend switching to that unless a doctor specifically advises you to do so. Overall, it’s likely to be more difficult to tolerate than doxycycline. It can also affect the heart, so I honestly don’t think it’s worth the extra risk if you don’t absolutely need to take it.

There are also forms of doxycycline that are a little gentler on the stomach, so those are some other options for you if you find that doxy still upsets your stomach even when you take it with some food. However, those forms of doxy are usually more expensive than the form that is usually prescribed (doxycycline hyclate).

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Edie]

Thanks again for your help Phil.

[Author]

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