Rifampin and Azithromycin combo for RA

[nord]

Hello Rheumforgod,

Congratulations to your new insights, knowing the enemy is a good thing!

The protocol you are on and that the researchers in the paper Maz mentioned is actually not appropriate (in the meaning sufficient) for Chlamydiale-induces spondyloarthropathies. It does not cover all the forms of the pathogens, and it has been mentioned that the researchers are now applying a more complete protocol.

If Chlamydia Pneumoniae is the culprit, the full combination protocol is a good idea, it seems (otherwise some of the forms, eg the cryptic, will survive and reactivate into a replicating form when the antibiotics are discontinued. Adding a Tetracycline (like Mino.) is a good step ahead , but for the cryptic form a inidazole is needed. Something for the infectious form completes the combination. The Sririam protocol was specifically developed for MS sufferers, as far as I understand, and the other protocol using Rifampin, Dr Stratton's, introduces it later to make it smoother, and less time on it. Minocycline is not sufficient on its own for Cpn infections.

It should be noted too, that some see HLA-B27 status not as a very good diagnostic factor, but rather a prognostic one; people who are HLA-B27 positive are more likely to develop joint damage, and thus to get a correct diagnosis, and getting it earlier in the disease course, see [John D. Carter, Alan P. Hudson: “Clinical Aspects and
Medical Management”, Rheum. Dis. clin. N. Am.], and there are more pointing in the same direction. That paper on Reactive arthritis has some good points on spondyloarthropathies in general, and the same authors have concluded that many sufferers of Undifferentiated Spondyloarthropathy (the junk diagnosis of the Spondyloarthropathies) are acutually having a Chlamydial (Pneumoniae or Trachomatis) infection in the affected joint (-s) [Carter, G

[Maz]

Hi RheumforGod,

So glad something above may have helped you figure out your symptom conundrum. My MIL in UK had a very difficult time being diagnosed and took years, until one day she was visiting and, after looking up her psoriatic patches along with the keyword, “arthritis,” it all became clear for her. She took the printed webpage back to her UK rheumy and got her PsA diagnosis. Bascially, what I'm saying is that at that time I had no knowledge of rheumatic diseases and a simple websearch of symptoms brought up what her rheumy could not figure out. Go figure, eh? 😕 Of course, you know I'm not a doctor, just a fellow patient, so this is something to further pursue for a confirmed diagnosis. 😉

Nord is right…the above antibiotic protocol mentioned in the article posted is likely not enough for chlamydia-induced arthritides. I posted the article really to let you know that you were not so far off the beaten track in getting started. It's also exciting to finally be seeing some mainstream research in the area of abx therapy for reactive arthritides, no matter how early or inadequate. Studies like these are considered “evidence-based medicine” and this gives physicians more scope to treat patients with antibiotic therapy, which is a very good thing.

You may not have seen the last eBulletin, but we covered Vinny's PsA remission story, which you may be interested to read. He has reached remission on a combo of mino and LDN (low dose naltrexone) and believes his disease began after a run-in with staph. Scroll to end of this link to read his story.

https://www.roadback.org/EmailBlasts/ebulletin_summer10.html

Each patient's infectious load will be unique. There is one gentleman here who posts for his teenaged daughter with PsA who has done extraordinarily well on IV clindy and mino very swiftly. Others with PsA who are also on their road back and doing well on AP will also hopefully see your thread and chime in for you. You can also use the search box above to find other postings on psoriatic arthritis.

What is so great is that you are dealing with this so early in your disease, before too much damage has occured. It may take some figuring out which antibiotic combinations are going to be tailor-made for you, as Nord mentioned, but your early response to the abx you're taking now suggests you are hitting something in your pathogen load.

Keeping my fingers and toes crossed for you!

Peace, Maz

 

 

[vera]

Hi RheumforGod,

I am just starting my journey with AP for PsA as well (am on week 8).

I was prescribed 100 mg Minocin on M-W-F.  At first, didn't notice much, but after about a week, had a good herx:  sleepiness, fatigue, headaches, more pain, more trouble sleeping.  One day, I couldn't even walk for the pain.   My herxs are not tied to certain days – they just come and go at will.  But overall, I am better than when I started on AP two months ago!  As they say on this board, 3 steps forward, 2 steps back.

This week (week 8 on AP), I increased the Minocin to 200 mg a day on M-W-F, and am herxing again at this moment. 

It all seems scary when we feel bad, and can't see our way for the dark in front of us.  But, I HAVE seen some progress so far, have been able to reduce pain med a bit, and have hope that I am finally on the right track.  I keep learning from the knowledgeable people on this board for which I'm grateful.  🙂

Hanging in there with you,

Lori

[rheumforgod]

Hi Nord,

Thank you so much for your detailed reply. I value every bit of information. There is so much I don't know. It can feel overwhelming at times. I am not completely clear…are you suggesting that minocycline could be added to my current protocol? And I not familiar with imidazole. Would be grateful for more info.

I mentioned the nail pitting and what I thought at the time to be fungus to my rheumatologist at last appt. and he noted it, but didn't seem to think there was any relevance. Now that I've seen pictures of nail psoriasis-it is obvious to me that that is what is going on with me. I had nail polish covering my toenails, so doc was unable to see it for himself. Will be sure to show him what's going on during my follow up appointment tomorrow.
So interesting to read in your reply that it has only been associated with Chalmydial ReA.

Thanks again, Nord. I will be sharing this information with my doctor tomorrow.

[rheumforgod]

Hi Lori,

I am extremely encouraged to hear from someone that has been diagnosed with PsA and is seeing some progress. Thank you so much for sharing your situation with me. We will definitely have to stay in touch. I am really anxious to see my doctor tomorrow for my follow up and see what he thinks of my latest self diagnosis. 😛

I am starting to see slight improvements as well. It was so awful at first. I am experiencing pain in areas that never bothered me before AP though. I think that is where the three steps forward and two steps back comes into play for me. Now that I am more knowledgeable about PsA, the painful tendon pain I've had in my ankles, shoulder and hip flexor makes sense. It's amazing to have the lines connected all of the sudden. Also a bit overwhelming since the back pain I've had for a couple years is probably connected too. I've always thought it was just a side issue, but now feel that it is part of the disease. Phooey.

Thanks again for the encouraging reply. Everyone on this site has been so wonderful. I'm so happy that you are beginning to see improvements.

[vera]

Hi RheumforGod,

As I mentioned in my last post, I upped my Minocin to 200 mg/day on M-W-F.  Now I am in the middle of a significant herx.  It is interesting that the two major herxes I've had have been slightly different.  But, my doc as well as those more experienced than me on this board, have said that herxes generally indicate the mino is working.  So, I guess I need to be thankful I'm in pain! 😕

As you said, now some of the things we've experienced in the past are making sense… finally.  I've had such strange and severe, debilitating pain rotate throughout my body over the years – neck, ankle, elbow, jaw, sacroilliac joints – some pain lasts for years and then disappears completely.  Other pain has been constant.  I suppose Lyme might be a factor here, as someone pointed out to me.  That is a definite possibility which I will explore with my doc. at the next appt.

In the meantime, it's one moment at a time – which is all we have anyway.

Best to you, and I hope you let me know how you are progressing!

Lori

[rheumforgod]

Lori,

I'm so sorry that you are experiencing such an awful herx. 🙁 I was so happy to read that you had experienced progress that I somehow forgot that you had mentioned that you were herxing due to the increased dose. It's scary, isn't it? A toe on my left foot swelled up like a sausage after beginning AP (now it matches the sausages on my right foot) and made me very nervous. But I had to tell myself the same thing–be grateful for the pain because it is most likely a good thing. Maz, was good to remind me of that.

So interesting that your herxes have been different. It has only been half a week or so that I have really begun to see any progress. It was one crazy six week herx. Very interesting to me to that you have had pains that have come and gone over the years while others have remained constant. I have experienced the same. My feet and hands, jaw and wrist have always been constant. But knee, ankles, neck, back and shoulder have behaved very strangely. And it has been debilitating at times like you said. I have a lot more pain coming and going more quickly it seems since since beginning AP.

You will be in my prayers, Lori. So true…it's one moment at a time. 🙂

[vera]

Hi RheumforGod,

Thanks for your encouraging words!  When I read of your sausage toes, that is classic PsA!  Years ago, I experienced my first sausage toe, and saw doc after doc, and had numerous x-rays.  Finally, I was referred to a podiatrist, and he diagnosed PsA.  I had to ask him to repeat that term – as I'd never heard that before.  Since then, the sausage toes come and go (and other things). 

My rheum said that PsA falls under the category of ankylosing spondylitis.  I went back and re-read your posts, and it sure seems possible this is what you may be experiencing (among other things). 

I feel so bad you've been in almost a continual herx – I can't imagine that.  It was also encouraging to me to hear your pain comes and goes or stays, like mine.  Although, I'm sorry that is the case for you:crying:.  I've felt alone in this weird world of mine, but hearing similar stories is very comforting.

You will be in my prayers, as well… thank you:):):)

Lori

[nord]

[user=2625]rheumforgod[/user] wrote:

There is so much I don't know. It can feel overwhelming at times.

Definitely, especially if brain fog/neurological issues are present, too. 😕 Give yourself time, these are huge areas of knowledge.  Fortunately, the people here are very helpful, with a lot of experience and knowledge. The volunteers are fantastic!

 I am not completely clear…are you suggesting that minocycline could be added to my current protocol? And I not familiar with imidazole. Would be grateful for more info.

It's not allowed to suggest anything here. 😉 But if Cpn is a culprit, then the suggestions by Stratton and Wheldon includes one tetracycline (which Minocycline is) together with a macrolide (which Azithromycin is). Both act on the Reticulate Bodies (RB)  of Cpn (the form that is multiplying). The reasons to include two drugs for the same target are to reduce the risk of the Cpn to develop resistance (important as it is long-term therapy), and to enhance the effect (Wheldon, a microbiologist has mentioned that the effect is four-fold compared to one of the agents).

Imidazoles (nitroimidazoles) are a group of drugs of which Metronidazole and Tinidazole are used to target the cryptic form (dormant) of Cpn. It is normally used for shorter intervals of five days per months, as die-off /herxing can be difficult (with a few particular issues with Cpn, compared to other infections), and they are hard on the liver.

Basically, the idea is to include the first two abx which attacks the intracellular RBs and halts their replication/kills them (to some extent, the drugs are basically halting the multiplication, not killing of the microbes, so called bacteriostatic antibiotics). It also drives the RBs into cryptic form (it's a way of defence by the RBs). THe cryptic form bacteria can then be killed by Metronidazole or Tinidazole. To prevent any new infection by RBs that have succeded in replication/multiplying, an agent against the infecting Elementary Bodies (EB) is also part of their protocols. Earlier it was another antibiotic, but now a dietary supplement, an amino acid, N-acetyl cysteine is used, which supports the liver too, important when taking a lot of drugs that are damaging to it.

http://cpnhelp.org/http%3A/%252Fwww.cpnhelp.org/%3Fq%3Dsimple

cpnhelp.org has a lot of information and a forum. Here are two pages with basic information, on the second, there are liks to a “basics” and “cpn simple” pages.
http://cpnhelp.org/about_cpn
http://cpnhelp.org/handbookintro

But first things first, which is what your infection (-s) really is/are.

[PhilC]

[user=2625]rheumforgod[/user] wrote:

PhilC,

“Reckless”—eek! Don't like the sound of that. I'm glad to know that rifampin causes severe die off though. You could say that again! I guess I should be encouraged then, since my body is clearly reacting to the antibiotics.

On second thought, I take that back. There really isn't enough information at this point to say whether or not that is the case. More than likely, he is just another of the many doctors who are unaware that an aggressive application of an antibiotic protocol can be counterproductive and, in some cases, harmful.

Phil

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

[rheumforgod]

Dear Nord,

My sincere apologies for not responding sooner. I had trouble getting on for a while and then stopped trying.

I want to thank you for taking the time to answer my questions with such detailed information. The links you provided have given me a wealth of information as well.

I have seen some progress on the protocol I am on. I have also been experiencing occasional flares. Taking it one day at a time.

Hope this finds you well.

Blessings,
Rheum for God

[rheumforgod]

Hi Lori,

I think about you often and have been praying for you. How are you? I am entering my third month on AP. I have experienced some progress with my hands. The morning stiffness is very minimal to non existent most days. The pain still exists, but I have more mobility in my fingers. My feet just don't want to budge too much though. The intensity I experienced in them for weeks subsided though and I had a couple “good” weeks in terms of pain level. Now the intense pain rears its head for a few days at a time–and then quiets down again–leaving me with the pain I am used to on a daily basis.

Would love to know how you are doing when you have the chance. 🙂

Blessings to you!
Rheum for God

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