Update: not good for my little girl

[zeljana]

@m. wrote:

I’m impressed how good your English is! If you slipped into Serbo-Croatian, I wouldn’t understand a word!

Are you using Google Translator, or have you studied English?

No, I am reading lots of materials on english language.
Google translator is very inaccurate but sometimes it can help if I am looking for one word…
I have learned English through primary and high school ( not studied it though) and I just adore this language… 🙂

[PhilC]

Hi Zeljana,
@zeljana wrote:

In november 2013 she was on erythromicin and short time on amoxicilline. Erythromicine was till June. Last week Dr.S suggested increasing Zitromax so we are starting this week. Seems to me so far she was in the best shape on erythromicine because her strep was falling. So this is an option too, to go back on erythromicin if increasing Zitromax woulud not help.

If it is available in your country, clarithromycin would almost certainly be a better choice than erythromycin. Clarithromycin is superior to erythromycin in a number of ways.

See:
The macrolides: erythromycin, clarithromycin, and azithromycin.
Macrolide Antibiotics Comparison

This sentence from the second web page listed above caught my attention:
“The gram-positive activity of clarithromycin is superior to that of erythromycin and azithromycin, especially against Streptococcus pyogenes and Streptococcus pneumoniae.”

Here is some more reading material for you:

Clarithromycin in rheumatoid arthritis: the addition to methotrexate and low-dose methylprednisolone induces a significant additive value–a 24-month single-blind pilot study.

Clarithromycin in adult-onset still’s disease: a potentially useful therapeutic.

Clarithromycin in adult-onset Still’s disease: a study of 6 cases.

Rheumatoid arthritis is linked to oral bacteria: etiological association.

Effects of clarithromycin in patients with active rheumatoid arthritis.

Phil

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

[zeljana]

Thank you for this PhilC. I immediately emailed this to daughters pediatrition. I must check with Dr.S also. He did not mentioned Clarithrpmycin but I know that one mother from RBF was giving this to her child.

@PhilC wrote:

If it is available in your country, clarithromycin would almost certainly be a better choice than erythromycin. Clarithromycin is superior to erythromycin in a number of ways.

My daughter is not on erythromycin any more. She is on Azithromycin and Amoxicilline both.

This also caught my attention because we do not know what kind of bacteria we are fighiting against for certain- is it gram positive or gram negative and Azithromycin covers both so it colud be tricky to find the right treatment.

“Azithromycin offers increased gram-negative coverage over erythromycin and clarithromycin.”

Thank you PhilC!!

[zeljana]

Hi all!

After procedure of removing fluid from my daughter

[zeljana]

Hi !

I am sad because we went yesterday on my daughters regular check up to her rheumatologist and her lab tests are not improving. Her CRP is still high – 54 and sedimentation rate is 42. Two weeks after last punction month ago her CRP was 26 and I thought that this is because of AP but now I see that this is because of steroids injected in her joints. Rheumatoligist also sad that next month she will do another punction and steroids injection in her left ankle. I also noticed that she had some hipopigmmentation on her ankle and she sad that this is calcification but I think that this is becuse of steroids injections and I think that after each one she is getting worse and somehow that one injection is leading to another because of the last one.
She was walking and even runing up util yesterday when she started limping again.
Today she is going on her regular eye exam.
Her rheumatologist is still pushing biologics and MTX but we are still not open to it. We will try to remove her adenoids first and maybe we will change antibiotic in her protocol.
We are thinking about Biaxin (claritromicin) but I am affraid because I have read that this one can cause some irregular heart beat and maybe higher dose of Amoxicilline would be a better choice. One Dr suggested that I sholud give her Clarithromicine + Clindamycine ( Clindamycin only for 30 days) for some resistent staph or that we should increase dosage of Amoxicilline instead 200 mg 1x to 200 mg x3.

One Dr also suggested ampicilin sulbactam, the other erythromicine. I am so confused and scared for my daughter future.
I do not know what to think any more. I see lots of parents are posting that theirs kids are in remission but I can not figure out what we are doing wrong?

I do not want biologics for my daughter.
What should I do???

Thank you all!

Zeljana

[m.]

Hi Zeljana,

While it’s great news your daughter was walking and running again, it must be anxiety-inducing to see her limping again and her labs not improving quickly enough.

Getting lots of different opinions does not always lead to clarity in a situation. Sometimes it does, but sometimes it just makes us worry more and become anxious about choosing the wrong path.

If you are in contact with an experienced AP doctor, perhaps get a second opinion about the steroid injections. And the tonsils. And if your daughter is on a protocol with a good prognosis. And what to look for as far as reasonable small windows of improvements.

It is true that sometimes patients need to just stick with a protocol for a longer period of time. It is also true that sometimes patients need to switch things up and then stick with that new protocol for a period of time.

Hopefully an experienced AP practitioner who has seen cases like your daughter can help access your daughter’s protocol, her lab results, and advise you on staying the course or changing.

In the beginning, I made a spreadsheet for my lab results. For some time, I was still anemic, but I was comforted by the fact that the numbers, for the most part, were moving slowly in the right direction towards the normal range.

It’s so difficult what to say about increased pain because of the Herx reaction. Increased pain can mean worsening, but it can also signal “it’s working”.

Has she cleared any sign of strep? (lab work) Are you able to give her lots of probiotics?

I’m sorry this is so hard!

[zeljana]

Hi m.!
Thank you for responding 🙂

@m. wrote:

If you are in contact with an experienced AP doctor, perhaps get a second opinion about the steroid injections. And the tonsils. And if your daughter is on a protocol with a good prognosis. And what to look for as far as reasonable small windows of improvements.

Yes, I am in contact with several of them, but neither one is in my country. We do not have AP doctors. They all have different opinion. So I am confused.

Has she cleared any sign of strep? (lab work) Are you able to give her lots of probiotics?

She has positive strep for a long time but now is down to 240 ( it was 1000 a year ago) and yes, I am giving her probiotics and kefir.
We are thinking of removing her tosils and next month we are going to doctor for scedule possible surgery.
I think that azithromycin is not helping but amoxicilline does so we will increase amoxicilline and maybe introduce clindamicin for stapf since she had history of staph also.

Thank you so much for your help!!!!

Zeljana

[Maz]

Zeljana, we have a brand new AP doc listing for a doc in Pesaro, Italy, and he is very comprehensive. He was kindly referred to us by “Flower” and have spoken directly with this doc via email when he shared his approach to treatment. He’s confirmed he will do both orals and IVs, as well as supportive adjuncts in an integrative approach that is individualized to the patient. Would you like me to PM his contact info to you? Depending on where you’re located in Croatia, it might be possible to make a drive to see him, as Pesaro is in the northwestern corner of Italy. Might even be possible to go over by ferry?

[zeljana]

@Maz wrote:

Zeljana, we have a brand new AP doc listing for a doc in Pesaro, Italy, and he is very comprehensive. He was kindly referred to us by “Flower” and have spoken directly with this doc via email when he shared his approach to treatment. He’s confirmed he will do both orals and IVs, as well as supportive adjuncts in an integrative approach that is individualized to the patient. Would you like me to PM his contact info to you? Depending on where you’re located in Croatia, it might be possible to make a drive to see him, as Pesaro is in the northwestern corner of Italy. Might even be possible to go over by ferry?

Thank you Maz!!

Please give me his email. I would aks him about my daughter and possible treatment in Italy.
I hope he is speaking english because I do not know italian language.
This is wonderful! 😀

Zeljana

[Maz]

“zeljana wrote:

Please give me his email. I would aks him about my daughter and possible treatment in Italy.
I hope he is speaking english because I do not know italian language.
This is wonderful! 😀

Hi Zeljana,

Have just sent PM with Dr. G’s info and would suggest PMing Flower for more info on this doc. 🙂 I hope he can provide a solution for you. 🙂

[zeljana]

@Maz wrote:

Hi Zeljana,

Have just sent PM with Dr. G’s info and would suggest PMing Flower for more info on this doc. 🙂 I hope he can provide a solution for you. 🙂

Thank you Maz!

[MLTelfer]

This is such a tough one. It is hard enough being the parent of a child who developed arthritis at the age of 21. Here is my opinion, and of course, it is only an opinion. I would get at least one more opinion. I would ask that rheumatologist for a treatment plan and what the prognosis is. If it is the same as the other rheumatologist I would most likely up the treatment regimen…..yes////to include biologics if needed.
I am worried about biologics too. That is why I am investing in AP, but every medication and treatment plan is flawed. If this is a joint damage situation I would waste zero time playing antibiotic musical chairs. I would get this under control with biologics while continuing AP. That is exactly what I would do.

[zeljana]

@MLTelfer wrote:

This is such a tough one. It is hard enough being the parent of a child who developed arthritis at the age of 21. Here is my opinion, and of course, it is only an opinion. I would get at least one more opinion. I would ask that rheumatologist for a treatment plan and what the prognosis is. If it is the same as the other rheumatologist I would most likely up the treatment regimen…..yes////to include biologics if needed.
I am worried about biologics too. That is why I am investing in AP, but every medication and treatment plan is flawed. If this is a joint damage situation I would waste zero time playing antibiotic musical chairs. I would get this under control with biologics while continuing AP. That is exactly what I would do.

Hi MLTelfer!

Thank you for your answer!
This is the third rheumatologist that my daughter is going to. They did not heard about AP, they do not relate diet and arthritis, they do not aknowledge any treatment besides NSAIDs, MTX, steroids, biologics…That is all.
If the first standard line of medications does not help they go to second one and so on…
There is no other opinion except theirs and biologics are the last choice.
I am considering biologics but I simply can not just decide and make peace that there is no other way.
Bilologics do not work for everybody either, so this is also questionable method but while we wolud wait on them to work or not there would be some damage to her body from it for sure.
This is the lifelong disease and I would give a little more time on AP. This forum is full of personal tesstimonials that it work for some people so maybe my daughter would be one of them.
Yes, this is tough one, because I must be my daughters guardian angel and insure that she is having less pain as possible.

Thank you again for your opinion, I appreciate it.

Zeljana

[Joe M]

@zeljana wrote:

But she is still in pain.

This makes me so sad. Nobody has to suffer with RA these days. My wife has been on Humira (biologic) for 10+ years with no side effects, and it has eliminated 99% of the pain and fatigue of rheumatoid arthritis. The remaining 1% is a stiff shoulder on some days, but we aren’t getting any younger either. Please listen to your doctor. AP is fine if it works, but it doesn’t work for everyone.

And what you said is true – biologics don’t work for everyone. BUT. You find out quickly as most start working in 3-4 weeks. In my mind that’s a very small risk for a potentially life changing medication.

***edited for spelling

[zeljana]

@Joe M wrote:

@zeljana wrote:

But she is still in pain.

This makes me so sad. Nobody has to suffer with RA these days. My wife has been on Humira (biologic) for 10+ years with no side effects, and it has eliminated 99% of the pain and fatigue of rheumatoid arthritis. The remaining 1% is a stiff shoulder on some days, but we aren’t getting any younger either. Please listen to your doctor. AP is fine if it works, but it doesn’t work for everyone.

And what you said is true – biologics don’t work for everyone. BUT. You find out quickly as most start working in 3-4 weeks. In my mind that’s a very small risk for a potentially life changing medication.

***edited for spelling

Hi Joe M!

I am glad that your wife is doig good on biologics. I know that many people respond good to biologics but they often had to switch them after a couple of years because the first one is stopped working.
Myy daughter is 5 years old and she already had so many medications in her body wich I did not get in my lifetime. I am scared of biologics because of her small body and I think that adults have a stronger immune system and their body can better fight off infections that may arise from biologics.

Can you please tell me what are her blood test ( iron level, liver markers, sedimentation rate, CRP…)? Can you tell from them that she is on biologics?
I belive that you joined RBF because you wanted to try with AP so can you tell me was she on antibiotics, for how long and did it work at all for her?

Thank you!

Zeljana

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