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My name is Barbara, my 12 year old daughter has SI joint arthritis, giving her sharp pain on her hip and lower back 24 hours a day. ESR was 31 taken at December 2018. She started on Methotrexate for 3 weeks, no miracle so far. Please five us advice on this Antibiotic treatment… We are living in Hong Kong but plan to move back to New Jersey this summer so she has more access to doctors. Thanks.
Barbara,
Hi, welcome to the forum. I’m very sorry to hear about your daughter’s affliction.
Do you have any specific questions about Antibiotic treatment?
There is a lot of material available on the website, like in the “FAQ” section ( https://www.roadback.org/faqs/ ) and “The Recommended Reading and Viewing” section ( https://www.roadback.org/resources/recommended-reading-viewing/ )
I would take some time to read all the pages on this site and when you have specific questions that you cant find answers to, you can post them here and someone will try to answer.Best wishes!
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinHi hkginger,
It’s always rough to hear of a young one facing rheumatic disease. Are you up for some travel when you get back to the US? Unfortunately NJ has a dearth of AP docs at the moment and not all AP docs will see pediatric cases.
Any thoughts about your child’s infection history? It might help to gather up such info before your return in order to narrow the playing field and work with a doc on an individualized protocol.
In addition to Pinkmoth’s great suggestions above, would suggest looking at the kickas.org website which can provide useful pointers with AS diet, etc. RBF is also in process of collecting infection/antibiotic research for AS to load on site, but which we can pass to you, if you want to approach a doc in HK for help.
Hi Barbara,
My daughter’s ESR was 37 when she was diagnosed, but returned to normal once she started antibiotics. She was too young for minocycline and has done well on azithromycin. When she got older, we tried minocycline for about a year but she had to stop due to severe headaches. She has not flared since returning to azithromycin. I second the recommendation of kickas.org for more specific info.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Suzanne
How long did it for your daughter’s labs to go into the normal range when starting azithromycin? Did she have any swelling that went down?
Diagnosed with severe RA 12 years ago
Tested positive for M. pneumoniae and C. pneumoniaeCurrent meds: Kineret 100mg, doxycycline 50mg, cbd oil, and celebrex
Supplements: fish oil, vitamin b12, folate, b6, iron, selenium, zinc, vitamin c, and biotin
They first diagnosed her with an infection, and put her on azithromycin and rocephin. Her labs went to normal then except for CRP. Then they said she didn’t have an infection, so it took about a year to get her back on azithromycin. During that time, nothing they tried touched her swelling. Even on azithromycin she would have swelling but no pain. I would see swelling dramatically improve when she would be treated for acute infections with different antibiotics. Septra was the best! A miracle! But she got a rash and said her mouth felt like cotton balls every time she took it, so no more sulfa drugs for her.
Minocycline helped her swelling and got her CRP to normal. Azithromycin kept her CRP from getting high, but it was always just out of range. The time she was able to get on minocycline did a lot of good and she didn’t lose anything when she had to stop. We have different perspectives, though. The headaches were so bad, she thinks it is the worst medicine she has ever taken. Maybe she would feel differently if her arthritis had caused her to suffer all the years before. Once her ESR was normal, she had a good quality of life.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Thank you! Thats good to know. I’m wanting to take both of them and just take a lower dose of Minocycline 50 mg Monday Wednesday and Friday and azithromycin two or three days a week. I’ve had rheumatoid arthritis for 13 years, and the swelling is really bad in my hands that my hands are deviating. I want to get the swelling down so hopefully they won’t deviate anymore.
Diagnosed with severe RA 12 years ago
Tested positive for M. pneumoniae and C. pneumoniaeCurrent meds: Kineret 100mg, doxycycline 50mg, cbd oil, and celebrex
Supplements: fish oil, vitamin b12, folate, b6, iron, selenium, zinc, vitamin c, and biotin
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