What a bumby road

[stwig]

Greetings everyone,
Been a while since I posted. Here is the latest. In October I had a huge relapse after feeling great for about 14 months. My blood work numbers have all been climbing Oct…Nov….Dec…Jan… higher each month. Added Azithromycin in the fall, and had to add 5mg daily of prednisone in December, just to keep moving and working.

Yesterday I traveled to Riverside to see Dr. L. He said that unfortunately now my blood work is now also showing increased chromatin and hematin numbers. He said that an increase in those test values is often an precursor to Lupus. This means no more Minocycline for me. He wants me to just keep taking the Azithromycin. He stated that if I need to add another antibiotic later we could add Doxycycline. It felt so strange to not take my mino today. After 3 years it is such a habit, and it is sort of scary to be changing my protocol, but I trust what Dr. L is saying.

Has anybody else out there developed a sensitivity to the minocycline, and had to stop taking it? If so, what did you do next, and how are you doing today?

It’s like Roseann, Roseanna-Danna said….It’s always something !
Starla

[Maz]

@stwig wrote:

Yesterday I traveled to Riverside to see Dr. L. He said that unfortunately now my blood work is now also showing increased chromatin and hematin numbers. He said that an increase in those test values is often an precursor to Lupus. This means no more Minocycline for me. He wants me to just keep taking the Azithromycin. He stated that if I need to add another antibiotic later we could add Doxycycline. It felt so strange to not take my mino today. After 3 years it is such a habit, and it is sort of scary to be changing my protocol, but I trust what Dr. L is saying.

Has anybody else out there developed a sensitivity to the minocycline, and had to stop taking it? If so, what did you do next, and how are you doing today?

Hi Starla,

Yes, I developed drug-induced lupus erythematosis (DILE) about 16 months into taking mino 100mg BID MWF. Is Dr. L talking about DILE or real lupus? There’s a huge difference, because some of the more experienced AP docs are using mino for real lupus in low doses quite successfully, so discerning which it is might affect treatment path.

My DILE was diagnosed with some specific labs by an immunologist. These were:

ANA (which had been previously neg and will be quite high…not useful if already positive).

Anti single-stranded DNA (fake/drug-induced lupus marker is usually a low positive)

Anti-double-stranded DNA (real lupus marker and should be neg in DILE if one doesn’t have real lupus).

And the test that clinched the diagnosis was the anti-histone ABs test. If you click on my Progress Thread link (the first post got lost when we switched software) and scroll down, there should be info on what I experienced there in a subsequent post.

Sometimes, overlapping rheumatic diseases can evolve over time and appear later on. Why this occurs is still a mystery, but if one adheres to infectious theory, then one has to wonder if there are untreated coinfections that may be rising to the surface and need addressing….that is….perhaps untreated infections are just finding new pathways in which to evolve in the body.

Drug-induced lupus is a very different kettle of fish, because there are a number of drugs that can cause it…some thyroid meds, heart meds like beta blockers, tnf-blocking meds, some other rheumatologic drugs – as well as minocycline, etc, and as soon as the offending drug is stopped, the DILE resolves. My understanding is that it is just the way a person’s body metabolises certain drugs…called “poor aceytylation.” As the body can’t break down the drug and dispense with it out of the body quickly enough, it builds up to toxic levels and plays havoc, mimicking real lupus.

I don’t know if the above is relevant to you or not, as I’m not sure of why those lab findings might point to DILE or real lupus. It’s just that I know that there can be some confusion over DILE causing real lupus (even in the medical field), which just hasn’t been borne out in any study I’ve come across and it’s just a drug-related reaction that resolves when the drug is stopped. The Lupus Foundation has a pretty balanced, informative article on their website about this:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=377&zoneid=17

Hope something here helps a bit, Starla, in your searches for answers.

[stwig]

Hi Maz,
He said that my Lupus markers are all still negative. Only chromatin and hematin are elevated. Dr. L said that in the past when he has seen those markers start to elevate, it is the early stages of DILE. He totally expects that by stoping the mino, the issue will resolve.
I am not taking any thyroid meds or beta blockers. So other than my vitamin supplements, and my 5mg or prednisone, the antibiotics are my only major med.

I’m just nervous that off of the mino my fingers, wrists, and shoulders will start to flare up bad again. Now they are not great, but I can function. On a scale of 1 – 10 (1 being the best and 10 the worst), I start each morning with stiffness of a 7, and by mid-day I am at 3 to 4. At least by staying functional each day, I can continue to work (translate work to have insurance).

Thanks for your informative and always kind words.
Starla

[Maz]

@stwig wrote:

He said that my Lupus markers are all still negative. Only chromatin and hematin are elevated. Dr. L said that in the past when he has seen those markers start to elevate, it is the early stages of DILE. He totally expects that by stoping the mino, the issue will resolve.

Hi Starla,

Thanks for sharing this info…I’ll pass it along to my LLMD as he should find it interesting. Had no idea there were early lab markers to suggest DILE might be arising and this could be helpful to others to include in their routine labs. 🙂

I really hope your symptoms resolve quickly coming off the mino…mine pretty much disappeared after a couple weeks, though labs took longer. Is there any chance you could start doxy now rather than later? If this helps, I found that doxy in the same low pulsed dose as mino wasn’t sufficient for me, even in combination with azithromycin. I switched off all tetras last summer to hit a different infection, but back on tetracycline now and taking it in daily, higher doses has been much better….most days feeling (dare I say it???) almost normal now!

[stwig]

Hi Maz,
I’m not totally sure why he wanted to wait on the Doxy, but he was clear that he just wanted me to take azithromycin for now. I wonder if he thinks there is enough similarity in the tetra derivatives, that he is trying to let my system clear of them? He did say that if I start to have any red nuckles or fingers to get in touch with him immediately.

Who knows, maybe I’m due for some luck, and just the azithromycin will be enough.

Have a great weekend,
Starla

[stwig]

So today marks 2 weeks since I last took minocycline, and have only been on azithromycin. My fingers are red, and curled in. Cannot straighten them, or bend them further. My knee is painful and the size of a mellon. Called Dr. L and he told me to go to azithromycin 5 days a week rather than 3, and I got a methylprednisone pack for then next 6 days to give me some relief.

I am so scared. Can’t take mino – getting drug induced lupus symptoms, and now azithromycin seems to be allowing my infection to run wild. I am back where I was at in 2007.

I am not a good candidate for biologics as I have some kidney issues. (Not that I think they are the way to go anyway – given my acceptance of the infectious theory)

I’m feeling like a run away train, and I don’t know when or how it will stop. I will be relieved from the pain for the next few days because of the methylprednisone pack, but I know what will follow.

Starla

[pattyrod]

Starla,

I also experienced DILE from minocycline back in 2006. I tried to take doxycycline and immediately felt horrible. I haven’t tried doxy again since 2006, but I’m thinking I should try.

I went to Dr. S in Tennessee and he put me on Flagyl, Alinia, Zith, and Diflucan. He told me to take the Flagyl MWF for 2 weeks and then take the Alinia MWF for the last 2 weeks of the month. I felt I did a little better on the Alinia and I dropped the flagyl. I take the zith everyday for the 1st 2 weeks of each month. I’m supposed to take the diflucan once a week, but I slack and take it about every 2 weeks. Unfortunately I not getting the improvements I had with minocycline (in complete remission right before DILE). I’m trying to get a followup appt with Dr. S, but I’m having great difficulty. He does not work a full schedule. His wife has just become a nurse practitioner in his office and she is starting to see patients.

I’m very interested in your situation. I’ve had thoughts of going to the Riverside clinic. I’m glad to hear they are familiar with DILE. Please keep me posted of your situation if you don’t mind. I had the taste of remission and want it again!!

Best to you,
Patty
Austin, TX

[Maz]

@stwig wrote:

So today marks 2 weeks since I last took minocycline, and have only been on azithromycin. My fingers are red, and curled in. Cannot straighten them, or bend them further. My knee is painful and the size of a mellon. Called Dr. L and he told me to go to azithromycin 5 days a week rather than 3, and I got a methylprednisone pack for then next 6 days to give me some relief.

I am so scared. Can’t take mino – getting drug induced lupus symptoms, and now azithromycin seems to be allowing my infection to run wild. I am back where I was at in 2007.

Hi Starla,

As you’re two weeks in on azithromycin now, this would be pretty accurate timing for herxing to begin and could well explain your increase in symptoms. Azithromycin packed quite a punch for me the first time I tried it, too, but as I improved over time I was able to increase my dose and tolerate it better. So, for a little while now, you might need to focus on detoxing to get rid of those circulating antigens (toxins released by dying bugs).

Jarisch-Herxheimer Reaction

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

Treating the Jarisch-herxheimer Reaction:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/124.html

After I experienced drug-induced lupus from minocycline, I was able to take doxycycline and tetracycline just fine and didn’t have a return of the DILE, at all. You might be right that Dr.L just wants you to clear your system, first, before trialing you on doxy, along with the zith. The two abx make great companions in AP and, as doxy didn’t have quite the same good effects I experienced with minocycline, the addition of azithromycin boosted the therapy for me.

Any change in protocol can elicit a new round of herxing to have to go through, so hang in there! Hopefully, it won’t be too long till you’re out of the woods.

[stwig]

Hi Maz,
I’ve actually been on the azithromycin since October, when my remission made a U-turn. Yes, at first the azithromycin did elicit a herx. I was on mino M,W,F and azithromycin T,TH,S. Often on the day after taking the azithromycin I felt like I had been run over by a truck.
Since Monday the 7th of March, it has been azithromycin only, and just this week he told me to go to 5 days per week, as I’ve gotten the red hot stiff fingers etx.

Starla

[Maz]

@stwig wrote:

Since Monday the 7th of March, it has been azithromycin only, and just this week he told me to go to 5 days per week, as I’ve gotten the red hot stiff fingers etx.

Ah…okay…thanks for clarifying, Starla…I had mis-read what you meant above and see you did have it in your sig line. The trouble with this system is that when you reply to a post, the sig line disappears.

Yea, can see now why you’d be worried if your symptoms are worsening after being on zith for so long and recently stopping the mino. If the increased dose of zith doesn’t help, maybe Dr. L would allow you to try doxy now. It doesn’t take long for mino to clear from the system.

Let us know how you get on and hope this increase in dose helps.

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