CMV(viral) reactivation/flare -prophylaxis?

[Amywilliams]

I was on The AP protocol (Mino only) in 2017, doing well and then my RA went through the roof. When I look back at my labs, the outstanding issue is positive IgG and IGM. I continued with Mino for another year, but progressively got worse. The CMV(IGM) stayed active, until the last test I had in 12/19- I have since tried Rituximab as a last resort. I also have AIH (but I’m now convinced it is CMV hepatitis). Regardless, CMV seems to be my hurdle. While conventional medicine only offers strong antivirals as prophylaxis, I am wondering if somehow antibiotics could provide prophylaxis- such as Azithromycin, which my doc neglected to add to the Mino. Anyone out there have CMV issues?

Amy-CT

[Maz]

Hi Amy,

How long were you on mino before your RA went into the big flare? We’re you tested for drug-induced lupus?

There is someone here (Cheryl F) who has a lot of experience with liver issues and antibiotic therapy and you may want to try to connect via PM with her.

Synchronously, I read the following article today about a potential new vaccine for CMV. Clearly not helpful for your present situation but you might find it interesting. Also, have you discussed any herbal anti-virals with your doc?

Researchers identify key marker to help speed development of CMV vaccines

[Amywilliams]

Thanks, Maz, for the quick reply.

I was on mino just about a year, before I flared- Dr M tested for CMV, gave me the herbals, but it persisted several years. My liver issues began way before the RA, and was diagnosed alongside SLE. I basically never have issues with SLE, and my liver enzymes never reach hepatitis levels, clearly indicating it’s a CMV issue- my hepatologist never tests for cmv(lol), although he’s very sharp, and probably knows it’s a problem.

That’s so interesting about the vaccine- I will send you the resent studies, implicating CMV as a trigger for RA.

Thank you!
Amy😊

Amy-CT

[Amywilliams]

Here’s the CMV Pubmed article
https://pubmed.ncbi.nlm.nih.gov/28303136

Amy-CT

[Maz]

Ooo owww, that’s an uncomfortable study to read.

Well, if this helps, AP isn’t immune-suppressive in the same way as other DMARDs or biologic meds – it’s more immune-modulatory, as I understand it’s mechanism of action for rheumatic diseases. What this means is that it won’t prevent flares from arising and it can take a number of years to reach remission and flares may continue but over time should be getting less frequent and less severe, lasting for shorter periods of time. Dr. Brown shares the story of a patient in the book whom he treated during a very bad flare while she was on AP. It’s worth reading if you have a copy of the book. If not, I’ll try and copy an excerpt of the story here for you.

Lupus patients tend to be pretty hypersensitive to most meds and dosing can be hard to get right, most lupus folk finding they to start very low and slow.

I wondered about drug-induced lupus as, when things start to go downhill after being on mino for a good amount of time, it’s just worth checking with the specific labs for it. Dr. M. is aware of the labs to run for this drug-induced state so thought he may have checked for this.

The upside to tetracycline antibiotics is that they do have some antiviral properties. They work intracellularly, called bacteriostatic antibiotics, so perhaps they have some action with CMV?

The upside is that other antibiotics can be used for rheumatic diseases. As long as the doc thinks you can safely take them with your liver issues, perhaps you’d think it worth a try?

Also, have you tried the Search engine above to look for others here with CMV? The forum has been quiet since the new FB page went live, but you might find someone with similar issues?

[Amywilliams]

Thanks for the great info on the antibiotics. I did search for CMV topics before I wrote the first post-I didn’t see anything relevant. I didn’t realize there was a live FB page. I dont typically use Facebook, but I’ll check it out.
I think I am going to see if Dr M will go another round with mino combined with another Antibiotic,
And see how things go. Thanks so much!

Amy-CT

[Maz]

Sounds like a plan, Amy! Good luck with Dr. M! Let us know how you go.

[Amywilliams]

Just a check-in to let you know I had to cancel my appt. with DRM due to a “drastic” increase in his hourly fee. Way too expensive- such a shame, as I’ve been going there over 5 years. I found someone to grudgingly prescribe antibiotics, so we will see if it works out!

Amy-CT

[Maz]

Oh, Amy, that really must be a disappointment! So sorry to hear this but I hope the doc who is now helping can provide the support you need. Would you mind PMing me to let me know of Dr. M’s consult fee increase? I haven’t yet had notification of this (unless you mean the increase from a couple years ago). Thx very much and hope the additional abx begins to help soon!

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