My daughter 9 years old has JIA, started Clarithromycin

[Anonymous]

Hello All,

My name is Nuket. My daughter has JIA. We live in Canada, Ottawa. As our RA doctor refused to prescribed AP, we went to see Dr.R. K. and got our treatment. My daughter is on Clarithromycin 250mg twice a day. Started 3 days ago.

My very sincere thanks to Evalon. she sent me a great message which encouraged me to go see Dr.K.

Could you please let me know what should I expect from then on? My daughter has ESR 21 and ANA 1:160. As far as I know all her other ratings are normal. Currently, she has 3 joints effected;knee started with injury 2 years ago, ankle started with fallen down and her jaw apparently, we do not notice anything from outside, she does complaining about her jaw either.

She has been sucking her thum all her life, I am wondering if minor jaw problem doctor sees not from RA but sucking thum. She has little swing to that side that doctor says has inflammation. Anyone experience a jaw inflammation due to RA?

Many many thanks..Nuket

RBFV Edit: AP Physician’s full name removed as per forum guidelines to protect physician privacy. Using physician initials is just fine. Thanks for your understanding.

[Maz]

@Nuket wrote:

Hello All,

My name is Nuket. My daughter has JIA. We live in Canada, Ottawa. As our RA doctor refused to prescribed AP, we went to see Dr.R. K. and got our treatment. My daughter is on Clarithromycin 250mg twice a day. Started 3 days ago.

My very sincere thanks to Evalon. she sent me a great message which encouraged me to go see Dr.K.

Could you please let me know what should I expect from then on? My daughter has ESR 21 and ANA 1:160. As far as I know all her other ratings are normal. Currently, she has 3 joints effected;knee started with injury 2 years ago, ankle started with fallen down and her jaw apparently, we do not notice anything from outside, she does complaining about her jaw either.

She has been sucking her thum all her life, I am wondering if minor jaw problem doctor sees not from RA but sucking thum. She has little swing to that side that doctor says has inflammation. Anyone experience a jaw inflammation due to RA?

Many many thanks..Nuket

RBFV Edit: AP Physician’s full name removed as per forum guidelines to protect physician privacy. Using physician initials is just fine. Thanks for your understanding.

Hi Nuket,

Glad you found us and isn’t Evalon wonderful? 🙂 She’s an incredible Mom who got her little toddler well again very quickly by sheer persistence, research and getting her to a great doctor.

Can you share what recommendations Dr. K. provided for your daughter in addition to the 250mg Clarithromycin twice daily? E.g. diet, probiotics, supps, etc. If possible, can you create a signature line with this info, plus your daughter’s diagnosis and date of diagnosis and any other drugs she has been on or is taking? It’s easy to do, just click up top on your User Control Panel, then click “Profile” and then hit the “Edit Signature” button. Fill in the form and submit. Then every time you post, this info will appear at the foot of your posts, so you don’t need to repeat this info. Really helps to generate responses from other folks when there is a question posed to which they may relate.

Here is a recent discussion thread, talking about the use of clarithromycin for RA, but there is quite a bit of additional research out there on this topic:

viewtopic.php?f=1&t=9548

Has your daughter had any dental problems? Oral pathogens have been tied strongly in recent mainstream research circles:

viewtopic.php?f=1&t=9566

TMJ may be caused by chronic oral infections that find their way into and create inflammation in the nerves supplying the jaw, but it can also be a symptom related to Lyme disease. In fact, in addition to palindromic arthralgia and myalgia, TMJ was one of my first symptoms, so bad that I could not open my jaw to eat, although it’s rarely mentioned in the scientific literature. It was strange, because it would come and go…very severe on one side one day and then the same on the other side the next day. Once I started abx, this symptom was one of the first to disappear:

http://www.ncbi.nlm.nih.gov/pubmed/19619432

http://www.ncbi.nlm.nih.gov/pubmed/17942315

http://www.ncbi.nlm.nih.gov/pubmed/11550610

http://www.ncbi.nlm.nih.gov/pubmed/9142482

http://www.ncbi.nlm.nih.gov/pubmed/8995919

http://www.ncbi.nlm.nih.gov/pubmed/2295991

http://www.ncbi.nlm.nih.gov/pubmed/2812630

http://www.ncbi.nlm.nih.gov/pubmed/3422274

Thing is, lots of kids suck their thumbs quite late, but not all get TMJ. Night-time teeth grinding can cause trauma to the jaw, teeth and, thus, TMJ, so trying her with a night guard may be a way to eliminate others causes. Did her dentist suggest this, at all?

As regards to what to expect while on AP, the best resources are to read the info on the main website, under the Education tab, particularly the Physician Packets (Current and Historical Protocols). Also, the book by Henry Scammell, The New Arthritis Breakthrough.

Your daughter has been started on quite a high dose of abx, so if she begins to feel much worse initially, this is probably why…called, “herxing.”If this occurs and becomes intolerable, you may need to get in touch with Dr. K. to ask about lowering her dose to a pulsed one.

The great thing about young kids with JIA is that they tend to respond quite quickly to AP….they have the advantage of youth and stronger immune function on their side with a greater ability to recover from illness. Sometimes the antibiotics used may need to be adjusted or changed up at times, too.

Is there a reason you selected Dr. K. in TX as opposed to Dr. B. in NYC, Nuket? Just wondering as NYC is so much closer to you in Ottawa. There is one AP doc (who is also Lyme Literate) in Ottawa who is very experienced, so it might be worth getting on her waiting list. She is usually backed up by a year or two, but she may put kids as a priority and canceled appts are always a possibility, if you can get there at short notice. Just think that for the longer haul, this doc in Ottawa may be a great solution for you in terms of proximity and experience. Let me know if you’d like her contact info. 😉

[Anonymous]

Hi Maz,

Thank you very much for the reply. Great wealth of information. I will read it more in detail and digest.

I just went to Texas because I did not know anyone closer and was under pressure from my husband and her doctor to start MTX. I would love to get AP doctor name in Ottawa please.

So Dr.K recommended to have a gluten free diet and probiotic.
I will do the signature soon.

Many many thanks..Nuket

[Maz]

@Nuket wrote:

I just went to Texas because I did not know anyone closer and was under pressure from my husband and her doctor to start MTX. I would love to get AP doctor name in Ottawa please.

So Dr.K recommended to have a gluten free diet and probiotic.
I will do the signature soon.

Hi Nuket,

Dr. K. is a great AP doctor, so you didn’t go wrong by visiting her, just that there are a couple pediatric docs who treat with AP that are closer to you that may have saved you such a long trip and for any needed repeat visits. I’ll send you Dr. A’s contact info in a PM (private message). To retrieve this, just click up top beside your User Control Panel where it will say (1 new message). You won’t be able to respond via the PM system, though, until you’ve posted on the open forum for a third time – it’s just a spam-preventative measure. 😉

Hope the gluten-free diet goes well for your daughter. Becoming a label-reader is quite critical in eliminating all gluten, as so many processed foods today contain it. Also hope it won’t be long until she is feeling a bit better. Don’t panic if she worsens for a while…this is normal and a good sign the abx are reaching their microbial targets….not easy to go through, but evidence the treatment is working. This can last anywhere from a few days to weeks or months and sometimes in cycles (depending on the organism).

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

http://roadback.org/index.cfm/fuseaction/education.display/display_id/124.html

[DianaW13]

Hi Nuket,

Just wanted to send you encouragement. I live in Ottawa also. I have been on AP for nearly 2 years now and my rheumy just confirmed last week that she considers me to be in remission 🙂 I have not had an AP doctor, but I do contact Dr. S in Iowa on occasion, and the folks here have been a wonderful support. If it were my daughter, I would have traveled where ever I needed to also.

All the best,

Diana

[Anonymous]

HI Mez,

I got your message. Could not send you a private message yet, THANK YOU!

Yes, please send me CA rheumatologist contact information as well. I think my husband would feel more confident this way.
Yes, I am surprised that DR. K started with such a high dose. I am sure she knows what she is doing. I am worried about a bad hertx effect.

Dianne, thank you for the encouragement message very much appreciated. I for sure need it.

Have you seen this study, finally they are looking into it seriously, I am planing to take this to our Rheuma and say I want a real treatment not just symptom. I am hoping that him and my husband would be agreeable to wait more.

http://webdoc.nyumc.org/nyumc/files/musculoskeletaldisease/attachments/RA%20Brochure.pdf

Thank you all.

[Anonymous]

@DianaW13 wrote:

Hi Nuket,

Just wanted to send you encouragement. I live in Ottawa also. I have been on AP for nearly 2 years now and my rheumy just confirmed last week that she considers me to be in remission 🙂 I have not had an AP doctor, but I do contact Dr. S in Iowa on occasion, and the folks here have been a wonderful support. If it were my daughter, I would have traveled where ever I needed to also.

All the best,

Diana

Thank you Diana, very nice of you. I do need encouragement I have to admit.

How did you get your AP prescription in Canada. My pharmacist said I need to get approval from my GP to get the prescription Dr.K gave. Luckily she approved. I never realized how difficult it could be to go against the main stream here.

Nuket

[Maz]

@Nuket wrote:

Yes, please send me CA rheumatologist contact information as well. I think my husband would feel more confident this way.

Okay, will do. You should be able to use the PM system now, too.

Yes, I am surprised that DR. K started with such a high dose. I am sure she knows what she is doing. I am worried about a bad hertx effect.

Try not to worry too much about this…some herxing is actually good. It’s a bit of a wait-and-see thing with this, as some folks will herx a lot and some not so much. So, your girl may do just fine on the dose. The time to call the doc is if it becomes intolerable.

Have you seen this study, finally they are looking into it seriously, I am planing to take this to our Rheuma and say I want a real treatment not just symptom. I am hoping that him and my husband would be agreeable to wait more.

http://webdoc.nyumc.org/nyumc/files/musculoskeletaldisease/attachments/RA%20Brochure.pdf

Yes, isn’t it great? It was posted here a while back when the studies were initiated. You’ll also find a great video from February of this year of a doctor at NYU’s Langone Med School who is involved in this trial on the following thread. Very worth watching with your husband!!!

viewtopic.php?f=1&t=9420&p=69293&hilit=langone+school+of+medicine#p69293

Will send you the PM now with the further info you requested.

[DianaW13]

Hi Nuket,

It is very difficult to get support here. I did convince my GP and my rheumy to prescribe Minocycline. Having said that, even with the knowledge that I am ONLY taking Minocycline, my rheumy having just declared me to be in remission, felt it necessary to say “I hate to burst your bubble, but many people do just go into remission”. Some days you just want to bang your head against a wall 🙄

How is your daughter doing with the gluten free diet? It really helped me. BUT, yuck, the breads etc. in the stores are not very palatable. If you are interested in baking your own tasty breads, check out this link: http://mariamindbodyhealth.com/?s=healthified+sub+buns

Diana

[Anonymous]

Hello All,

We have seen our Rheumo today. He agreed to wait for another 2 months for MTX.
He examined my daughter and did not notice any improvement even though EST is down from 21 to 5, and ANA dropped 1:160 to 1:80, and she is not in pain anymore , and swollen is way better and she is not having a tummy pain because of the anti -inflammatory she was taking.

I said “respectfully I do not agree with this assessment”

He said antibiotic is as dangerous as MTX that we should not be given to her.

He said bacteria only effects a small part of arthritis and that problem usually goes away by itself after a year so what we have is totally different.

I am happy that i can continue without trying to convince anyone for at least 2 months now..:)

Thank you all very very much. Amazing how much your support means to us who are going through these.

Nuket

[Krys]

Hi Diana,
Sorry to barge in when I don’t have any SD advice to offer.
You were so incredibly kind to this jerk of a doc, you even “respectfully” disagreed when he showed incompetence (finding no progress when blood tests have responded so fast + many symptoms abated) — it makes me wonder:
Are you legally bound to see this rheumy and this rheumy alone?
Can he impose dangerous drugs on your daughter without your agreement?
Can docs in Canada threaten their patients/parents of their patients?

@Nuket wrote:

I am happy that i can continue without trying to convince anyone for at least 2 months now..:)

As his assessment shows blindness to facts, lack of knowledge (mino being as dangerous as MTX) and a mean attitude to anybody who dares to think, what is the point of being bound to his time frame or even to planning to see him at all?
I personally think he should be reported to medical board for loss of license, but unfortunately pushing dangerous drugs and preventing treatments that work is often seen as good medical practice nowadays. 👿

Ultimatum of a 2 months time frame + blindness to facts = he’ll push MTX no matter how big the progress is!

I think that a good relationship with a doc, based on trust, kindness and caring, is a huge part of getting well. If seeing a doc makes you all riled up and scared that he may again become blind to the facts and jeopardize the treatment that has big chances of healing your daughter, why even plan on seeing him again?

Speedy recovery to your daughter and peace and joy to you,
Krys

[Suzanne]

Krys, when it is a young child, parents have to be very careful. We always felt it was necessary to keep as many eyes on our daughter as possible, so no one could say we were doing any harm to her. Yes, it has made for very some very uncomfortable appointments but at other times, maintaining the mainstream relationship has been beneficial.

Ped rheums will never believe what they are seeing with AP. To this day, it is as if my daughter is on no therapy in their eyes. We have even been asked hopefully if we eliminated gluten (no). We just met a new ped rheum, who kept asking, “So you can, like, do stuff? And you go to school?” Good grief, what are the rest of their patients like?

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Krys]

Suzanne and Nuket (so sorry for calling you Diana in my previous post),

I’m so, SO very sorry for this additional stress of having to be watchful of what one says, does, etc., of the need to tiptoe and dance around the pediatric rheumies. This is so sad.

Thank you for explaining, Suzanne.

Nuket, please forgive me my total ignorance. Had I known, I would have never written the previous post. Your doctor’s reaction to progress deeply upset me and then I unnecessarily upset you with my response. I’M SORRY!!!
I’ll keep you and your daughter in my prayers.
Krys

[Anonymous]

Hello Krys,

No need for an apology. I do totally understand your concern and appreciate it. Sorry that I could not write before. I have been extremely busy to look after my daughter and everyday work load.

I will write more tonight, please do keep us in your prayers..Nuket

[Anonymous]

So had an dentist appointment today. No major problem with her gums which is a good news.

She had an herx effect yesterday lasted for couple of hours. She is looking way better today. He is not complaining her ankle and knee as much. So she had been taking this 500 mg for 18 days now. I guess not knowing what to expect is one of the toughest part.

We will be meeting with Dr.K next week, i am looking forward to it.

Thank you all for your support very much.

Nuket

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