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My family doctor put me on AP at 100 mgs twice daily of Minocycline a year ago. I had none of the side effects listed by others such as sore throat and staining of nails. I was also taking it wiht food ( 8oz glass of milk every time). After doing some more research I decided to change to MWF at 100 mgs twice a day on an empty stomach. I now have worsening pain, back to 2 prednisone a day and 800 mgs og Ibuprofin in AM and PM. and a nagging sore throat that isn't too bad. I have also noticed a few stains on my toe nails. My gut tells me that this is a good thing. Any thoughts from others. It has been 3 weeks now since the switch.
I was DX with recurring arthritis (reiters syndrome) 2 years ago. My sed rate was 75 then and now is 35. I am on methotrexate and have been for 8 months. I take asprin and minocycline along with folic acid daily. Did I mention that the docs think the sed rate of 75 probably brought on my tia stroke. 2 weeks after the stroke the knees started swelling and so did the left ankle. I had a rash on my hand that wouldn't go away. Now I know that the little symptoms I had as a younger man were just the signs of what was to come. I had things like eyeritis. Now I am 42 and am wanting my life back. Lord willing I will get it.
John
Hi John, and welcome to the Roadback forum, but sorry you had to seek us out.
Have you considered being tested for Lyme Disease? Here is a link to a thread that lists symptoms so you can see if that sounds like a possibility:
http://www.rbfbb.org/view_topic.php?id=4224&forum_id=1&highlight=lyme+symptoms
So many of us on the board have learned that our rheumatic illnesses have been triggered by Lyme Disease and in treating the Lyme we are also treating our other rheumatic illnesses. The Antibiotic Protocol is vastly different from a Lyme Protocol so it is important to know your correct diagnosis for successful treatment.
Most Lyme testing is worthless and most doctors don't have a clue, so if you decide to pursue this angle let us know and we can walk you through the process.
If you haven't checked it out already, there is a wealth of information in the “Home” section of the board under the “Education” tab that relates to daily vs pulsed dosing, etc., which sounds like you've discovered on your own. 😕
Take care……kim
[user=2201]signalman[/user] wrote:
My family doctor put me on AP at 100 mgs twice daily of Minocycline a year ago. I had none of the side effects listed by others such as sore throat and staining of nails. I was also taking it wiht food. After doing some more research I decided to change to MWF at 100 mgs twice a day on an empty stomach. I now have worsening pain, back to 2 prednisone a day and 800 mgs og Ibuprofin in AM and PM. and a nagging sore throat that isn't too bad. I have also noticed a few stains on my toe nails. My gut tells me that this is a good thing. Any thoughts from others. It has been 3 weeks now since the switch.
I was DX with recurring arthritis (reiters syndrome) 2 years ago. My sed rate was 75 then and now is 35. I am on methotrexate and have been for 8 months. I take asprin and minocycline along with folic acid daily. Did I mention that the docs think the sed rate of 75 probably brought on my tia stroke. 2 weeks after the stroke the knees started swelling and so did the left ankle. I had a rash on my hand that wouldn't go away. Now I know that the little symptoms I had as a younger man were just the signs of what was to come. I had things like eyeritis. Now I am 42 and am wanting my life back. Lord willing I will get it.
John
Hi John,
Welcome to the RBF forum. You might find this article that was included in the last EBF eBulletin interesting:
https://www.roadback.org/EmailBlasts/ebulletin_winter10.html#Study
Also, the following website:
The chlamydias (trachomatis and pneumoniae) have been tied to reactive arthritis (Reiter's) and a combination antibiotic therapy has been shown to help better than monotherapy (as per above links). You might want to look into this option, because the way you've been using minocycline in the past (daily dosing at 100mg twice a day) in addition to mtx and pred is likely to have been more immunosuppressive than anything. The tetracyclines need a functioning immune system in order for their antibacterial properties to work effectively, as they are bacteriostatic (work intracellularly to disable bugs – then the immune system does the killing – no immune system = no bug killing).
Lowering your antibiotic protocol while on mtx may cause worsening for a couple reasons…less immune-modulation and possibly some herxing with rising and falling serum levels. At some point, we all have to go through herxing. 🙁
The problem is, with your history of TIA, you will want to go extremely carefully. Have you had your prothrombin times tested? Sticky blood can definitely cause blood clots, but can also prevent abx from working effectively, too. You will need to watch inflam if you do pursue combination abx therapy and later wean off your mtx and pred. Doing this may require careful observation by a really experienced AP doc. Are you looking to do this and also to go to an experienced AP doc? If so, we can send you a list of docs, though it may require some travel. There is a very experienced AP doc in Chatanooga, but he is in high demand and his appt wait-list is quite long. Just let us know, if there is anything we can do to assist. 😉
Nice to meet you!
Peace, Maz
Signalman – there have been some interesting past discussions on Reiters which you may find useful – just type in Reiters in the search box above. Here is a link to one of them: http://www.rbfbb.org/view_topic.php?id=2949&forum_id=1&highlight=reiters. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)When I had the stroke I had a very good neurologist that sent my blood work to the Mayo clinic. He tested for lyme disease and it came back negative. I have a pretty good history that backs up the reiters syndrome theory. Not to say that Lyme is not responsible. i have considered having a retest as I know that Lyme can be negative even though you are positive.
Thhanks for the help,
John
My neurologist tested me for clotting factores and at least 50 other possibilities (no joke) including lyme and several cancers. He really wanted to know what caused the stroke in a 40 year old. My sed rate was the only clue.
Thanks for the help, I will check out the links,
John
[user=2201]signalman[/user] wrote:
When I had the stroke I had a very good neurologist that sent my blood work to the Mayo clinic. He tested for lyme disease and it came back negative. I have a pretty good history that backs up the reiters syndrome theory. Not to say that Lyme is not responsible. i have considered having a retest as I know that Lyme can be negative even though you are positive.
John, glad to hear you were checked out for clotting times. Inflammation has a tendency to increase blood stickiness, so just something to be watchful of.
Yes, does sound like a reactive arthritis, particularly with the hand rash. Have sent you a PM with info on this, as well as the AP doc in Chattanooga for you to check out. He uses a protocol for treatment of chlamydias (which also happens to be very similar to a Lyme protocol), which he strongly believed are tied to rheumatic diseases. You're in luck, because he is right in your neck of the woods! 🙂
The best tests for Lyme are done through a lab called IGeneX, if you wanted to pursue this, too. One of the volunteers can provide you with info on how to go about this, if you need it, though a search using the box above should bring up lots of info, if you type in the key words, “IGeneX testing.”
All the best, John, and let us know how you get on, if you make an appt with the Chattanooga doc. He has a wait list and may take a while to get in, but with ReA, you'd be in good hands with him. He is not Lyme Literate, though, and we do retain lists of LLMDs (Lyme Literate MD), if you should find you need one of these docs later.
Peace, Maz
Signalman – If I understand correctly you were taking the mino with a glass of milk previously? As I understand it taking the mino with calcium products renders the antibiotic ineffective or greatly reduces its function. The warning on my bottle of mino says no milk, antiacids, or iron for at least an hour after taking. My doc wants me to take my mino on an empty stomach, no food two hours before or after. I would certainly defer to the folks here that are much more knowledgable than I but I wonder if it is possible that by taking the mino without the milk the mino is now just beginning to work or at least work more effectively than before?
[user=21]JeffN[/user] wrote:
Signalman – If I understand correctly you were taking the mino with a glass of milk previously? As I understand it taking the mino with calcium products renders the antibiotic ineffective or greatly reduces its function.
Jeff, you're absolutely right! 🙂 I completely overlooked John mentioned that and was looking intently at his symptoms. Well spotted!!!
John, Jeff is right on the money…taking any tetracycline with milk or another dairy product (anything with minerals) will render it useless in the gut, because tetras are very chelative and bind to minerals.
Also very important not to take your dose before lying down and with a full glass of water, remaining upright for a good hour or two after – this could account for the nagging sore throat, as all tetras can cause esophageal burning if there is any reflux or a stuck cap (which can be severe enough to form an ulcer and warrant an ER visit).
Jeff, how kind of you of you to chime in after spotting that. :dude: The fine details can be really important sometimes with AP.
Peace, Maz
Now I'm confused. I went to a rheumy who originally dx me with Reiter and he said it was temporary, I promise you. When he got the results of blood work six weeks later he dx me with RA. He said I got the Reiters from food poisoning a year earlier. I would agree with that. That's why I found an AP dr. She started me with two weeks of tetracycline and metronidazol because I had had ulcers in my 30's and she was going after H Pylori. She found it, it rebelled. I herxed something awful for a week. Then she started me three weeks ago on 200mg of mino daily. I have had some milder herxing. My CCP was over 250 but tested neg on the RF. I went to the discussion Lynnie suggested and got the impression that Reiters isn't temporary. So can I still have Reiters and not RA or is Reiters a type of RA? I never had any of the symptoms of Reiters any one has posted. Just joint inflammation in the beginning with fatique. That's all I have now except some edema in my ankles and the ocassional hive. I'm sorry for sounding ignorant. There is so much to RA. I never knew there was such a diversified disease. Just when I think I get a handle on something, a new thing pops up. Any help is appreciated.
[user=2214]steadfast[/user] wrote:
Now I'm confused. I went to a rheumy who originally dx me with Reiter and he said it was temporary, I promise you. When he got the results of blood work six weeks later he dx me with RA. He said I got the Reiters from food poisoning a year earlier. I would agree with that. That's why I found an AP dr. She started me with two weeks of tetracycline and metronidazol because I had had ulcers in my 30's and she was going after H Pylori. She found it, it rebelled. I herxed something awful for a week. Then she started me three weeks ago on 200mg of mino daily. I have had some milder herxing. My CCP was over 250 but tested neg on the RF. I went to the discussion Lynnie suggested and got the impression that Reiters isn't temporary. So can I still have Reiters and not RA or is Reiters a type of RA? I never had any of the symptoms of Reiters any one has posted. Just joint inflammation in the beginning with fatique. That's all I have now except some edema in my ankles and the ocassional hive. I'm sorry for sounding ignorant. There is so much to RA. I never knew there was such a diversified disease. Just when I think I get a handle on something, a new thing pops up. Any help is appreciated.
Hi Steadfast,
You don't sound ignorant, at all…diagnosis can be very hard to make, even for a very experienced rheumatologist, especially in early cases where not all lab markers have yet manifested for a definitive diagnosis. 😉 The unfortunate side of all this is that you're the one going through it and waiting on an accurate diagnosis is enough to make even the most sane person feel pretty batty.
Of course, you know there are no doctors here, just patients, but it is my limited fellow patient understanding that it's possible to have overlapping diseases. Unfortunately, a positive anti-CCP is pretty indicative of RA with, if memory serves, a 90 or 95% specificity rate, though it can also be seen in “autoimmune” thyroid disorders, monoclonal gammopathy and Lyme disease, for instance, and there can be a margin of error with false positives sometimes occuring.
http://www.clinchem.org/cgi/content/full/47/6/1089
Usually a definitive diagnosis for RA can be made with both anti-CCP and RF elevations, giving a nearly 100% specificity rate, according to the above article. As your RF is not elevated, it may be that you are early in your RA, it was a false positive, or there is some other thing going on (thyroid or Lyme disease, for example) that is cross-reacting with the test. Confirmation of RA may need to be made based on your clinical presentation – things like early morning stiffness and bilateral joint involvement.
Whoever your AP doc is, she sounds to be pretty astute – is it Dr K in Lufkin? H Pylori has been tied to RA in studies and longterm antibiotic therapy with clarithromycin, a macrolide antibiotic, has been studied and found very effective for treating H Pylori-induced RA. If you want a protocol that really could cover all potential bases in your case, you might like to look at this website and discuss the possibilities further with your AP doc:
http://www.cpnhelp.org/treatment_protocols
A protocol including pulses of Flagyl (or the safer Tinidalzole), a macrolide antibiotic, like clarithromycin or azithromycin, and a tetracycline, like minocycline or doxycycline, would likely give you good coverage for both RA and Reiter's and possibly underlying chronic infections, like H Pylori (a spirochetal infection, like Lyme) and the chlamydias (trachomatis and pneumoniae). In fact, there is an AP doc in TN/GA who uses just this type of protocol for his rheumatic patients
If this helps, I also had a reactive arthritis, involving swollen, arthritic joints, in my 30s, from Parvovirus B19 (aka Fifth's Disease), which only lasted for several months, but was pretty painful and debilitating. Later, I managed to get Lyme disease, which triggered my RA. The following link is from a now-retired AP doc in Maryland and he lists some of the infections that can cause reactive arthritides:
http://www.drmirkin.com/joints/J159.htm
Reactive arthritis is often temporary (unless it involves the HLA B27 genetic haplotype, which can evolve into ankylosing spondylitis which has been tied to Klesiella – John/Dragonslayer can tell you more about this), but ReA can also become chronic in some cases and may even wax and wane in cycles. RA, in more rare cases, can also go into remission on its own (usually within the first year, if that's going to happen), but is generally chronic and degenerative with degrees of severity. An anti-CCP above 59 is considered to be quite severe but, with the appropriate antibiotic therapy, this number should fall. My anti-CCP has been in the mid 200s, too, but has dropped in increments of 20 to 40 points on a monthly basis with Lyme treatments.
In the field of rheumatology, you don't usually see a rheumy re-checking anti-CCP once an initial diagnosis is made, because it's only used diagnostically and for prognostic purposes. This is a real shame, because this number can and does drop on antibiotic therapy. 😉 My Lyme doc uses it as a gauge of my success on any particular antibiotic protocol.
Hope this helps a bit, Steadfast, and I haven't confused things further? These are just fellow patient ruminations on my part and I wouldn't try to diagnose you…just hoping to provide food for thought in your own researches based on my personal experience of both reactive arthritis and RA.
Peace, Maz
Maz, you're a genius. It all makes perfect sense. Yes my dr is dr K in Lufkin. I will check out the protocol you recommended and share it with her. I also agree that the anti CCP test would be a good indicator as to how the RA is responding to AP. She did test my thyroid and she said I was slightly hyperthyroid but not enough to worry with at this time. I trust her on that. Thanks for taking the time to write all that out for me. I feel better when things make sense. You made me feel better.:blush:
Jeanne
[user=2214]steadfast[/user] wrote:
Yes my dr is dr K in Lufkin. I will check out the protocol you recommended and share it with her. I also agree that the anti CCP test would be a good indicator as to how the RA is responding to AP. She did test my thyroid and she said I was slightly hyperthyroid but not enough to worry with at this time. I trust her on that.
Jeanne, so glad the above helped to make you feel better about things. All of it is pretty confusing and you're not alone….besides, you're trying to be proactive in your disease and this takes work. You could be sitting around like a lump on a log, just getting fed the usual rounds of rheumy meds, but you're not! Lots of kudos for that, girl! :dude:
Did Dr K test your thyroid auto-antibodies? If elevated, I half wonder if these could be giving you a false anti-CCP reading with your negative RF. Also something to check in with her about at your next appt. 😉 Maybe you could even print out the study above to take with you.
All the very best, Jeanne, and let us know how you get on!
Peace, Maz
My Thyroid Peroxidase Antibodies were well within range as was Thyrogobulin antibodies. If those weren't auto-antibodies, then no, not tested. She tried to get the most pertinent tests done because I don't have health insurance. I have no problem with getting a more refined test if need be and will let her know that. Thanks again Maz. Sometimes I just feel like this..:shock:
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