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aboyer, I noticed Kineret in your sig line. I don’t ever see many adults on that drug. Did you have Adult Onset Still’s Disease symptoms that it controls? It doesn’t seem that it controls your arthritis symptoms, if you are asking about pain and swelling.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Yes I’m on kineret for RA because thats the only medication that doesn’t cause any side effects for me
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
Hi Suzanne,
Hi Phil, that makes sense except the info below is only about Plaquenil.
You have misunderstood the information. The warning is about taking hydroxychloroquine (HCQ) with other drugs that can prolong the QT interval, such as the macrolide antibiotics (azithromycin, clarithromycin, etc.).
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinIve been on a few times. The most was several years ago and it was amazing for a few months until the head pressure and vision problems happened
Those problems are much less likely to happen with doxycycline. I had some mild headaches when I first started on doxy, but they went away before too long. I’m glad I started with doxy because I know I would have had a difficult time if I had started with minocycline.
By the way, the doxycycline monohydrate that you are (or were) taking is better absorbed when taken with a high-fat meal. I just thought I should mention that since I suspect that not many people on here are aware of that fact.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinIve been on a few times. The most was several years ago and it was amazing for a few months until the head pressure and vision problems happened
Those problems are much less likely to happen with doxycycline. I had some mild headaches when I first started on doxy, but they went away before too long. I’m glad I started with doxy because I know I would have had a difficult time if I had started with minocycline.
Phil
Pseudotumor cerebri from minocycline is not simply headaches. The pressure on your brain causes your optic nerves to swell and the headaches are debilitating. We were told no more tetracyclines after that side effect.
Minocycline did a lot in the time my daughter was on it. As scary as this side effect was, it resolved when she stopped it and I do not regret that she was on it. It was heartbreaking to see it have to end and know she can’t go back on any tetracyclines.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Hi Suzanne,
Pseudotumor cerebri from minocycline is not simply headaches. The pressure on your brain causes your optic nerves to swell and the headaches are debilitating. We were told no more tetracyclines after that side effect.
Yes, I know that, but I see them as being related for the simple reason that what seems like a simple headache might be a precursor to, or the beginning of, something much more serious. It’s the main reason why I was so cautious when I started minocycline (my starting dose was 25 mg on MWF).
Minocycline did a lot in the time my daughter was on it. As scary as this side effect was, it resolved when she stopped it and I do not regret that she was on it. It was heartbreaking to see it have to end and know she can’t go back on any tetracyclines.
The recommendation to avoid all other tetracycline antibiotics seems like a case of being extremely cautious. In reality, no one can say with any certainty that your daughter would develop intracranial hypertension again if she were to take doxycycline or another tetracycline (besides minocycline) in the future. However, since the incidence of intracranial hypertension due to doxycycline appears to be very low — much lower than for minocycline — there is a definite possibility that your daughter may be able to take doxycycline without developing intracranial hypertension. The main reason I am telling you this is because your daughter might someday develop a serious illness for which doxycycline (or another tetracycline) is one of only a few available treatments, and it would be a shame not to try it (cautiously, of course) due to a misunderstanding of the risks involved.
Here are a couple of links to research on adverse reactions associated with the tetracyclines:
Comparative analysis of adverse drug reactions to tetracyclines: results of a French national survey and review of the literature.
https://www.ncbi.nlm.nih.gov/pubmed/22283782Comparative safety of tetracycline, minocycline, and doxycycline.
https://www.ncbi.nlm.nih.gov/pubmed/9382560Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinYes, I know that, but I see them as being related for the simple reason that what seems like a simple headache might be a precursor to, or the beginning of, something much more serious. It’s the main reason why I was so cautious when I started minocycline (my starting dose was 25 mg on MWF).
Phil
Our experience did not involve simple headaches. The precursor was optic nerve swelling noted on a routine eye exam. I guess the pressure can push out your eyes up to a point and you don’t feel the pain. Shortly after, severe headaches began. It is called pseudotumor cerebri because the symptoms mimic a brain tumor. Also, the pressure builds overnight so anyone waking with/from a headache should be more concerned than someone who develops a headache during the day.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
The main reason I am telling you this is because your daughter might someday develop a serious illness for which doxycycline (or another tetracycline) is one of only a few available treatments, and it would be a shame not to try it (cautiously, of course) due to a misunderstanding of the risks involved.
Phil
Of course we would weigh the risk vs. benefit for a serious infection, but in this thread you suggested it for longterm AP for aboyer. We have already been told a short course should not bring the pseudotumor back, but also were able to use an alternative with success. Once you have had a side effect from a class of drug, it is reasonable to avoid all drugs in that class. Especially a side effect such as this!
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Hi Suzanne,
Of course we would weigh the risk vs. benefit for a serious infection, but in this thread you suggested it for longterm AP for aboyer.
The only reason I brought it up at all is because aboyer was already taking doxycycline (as mentioned elsewhere), and I was told (privately) that she/he experienced gastric irritation from taking it. Many people on here seem to believe that doxy must be taken on an empty stomach, and I wanted to point out that doxycycline monohydrate is better absorbed when taken with a high-fat meal, since that may be a solution for aboyer’s gastric irritation problem. I’m sorry that the missing background info caused you to misunderstand what I was trying to do.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einsteinaboyer,
Since you tested positive for Chlamydia pneumoniae (Cpn), you really should plan on getting on one of the protocols for that infection. The situation with Cpn is similar to Lyme Disease — more aggressive treatment than what Dr. Brown used is required.
See: http://www.cpnhelp.org/treatment_protocols
Of the protocols listed on the above page, the Wheldon Protocol seems to be the most popular. By the way, some substitution is allowed, so it would not be necessary to take doxycycline. If you start with azithromycin, you could later add rifampin. I believe that Dr. Wheldon’s wife started with azithromycin and doxycycline, but later in her treatment the doxy was dropped and replaced with rifampin.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinIve been researching that website also. I already have doxy and I’m going to try to get on zithromax as well. Thank you!
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
Common Kineret side effects may include:
worsening of rheumatoid arthritis symptoms;
The websites about Kineret quote it.Why do you take Kineret? How long have you been taking it? Is your RA better or worse during this time? It lowers your immune system rapidly. We don’t know how low our immune system is until something happens.
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 heterozygousPhilC, thank you for that link as I have been using Azithromycin for a while with Plaquenil, would you believe I haven’t been feeling very well since starting Plaquenil and decided to stop taking it this morning as my eyes were blurring as well. After reading the link you posted am so glad on my decision, wondering why the Rheumy, Dr, pharmacist didn’t tell me 😡
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.
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