After wash out — extreme pain

[Eileen]

Hello everyone,

After taking a five week abx. vacation, I re-started mino. 100 mg. this Monday AM & PM and nystatin at noon. Tuesday at 2:20 a.m., I woke up in acute slamming, oh my goodness I’m going to die pain, twisting, aching, muscle pain, sharp, shooting pain in joints which left me in bed not able to move for four hours with low-grade temp. Felt like my whole body was hit with a baseball bat. Pain was 10++ — pain like I had two years ago which kept me home bound. 😡

1. I thought I was herxing [so soon?] and decided to continue on with mino. and just push through it and get it over with.

2. Yesterday (Tuesday) late a.m. temp. and pain acute subsided. Still not feeling quite right, but better and getting around.

3. Still on mino.

Has anyone had a similar experience like this and more importantly, why? Could a herx. reaction happen so quickly and even more, stop as fast as it came on? This has me stumped. Within the next two weeks, I am to add zith. and moxatag.

Any suggestions and comments welcome, please! I need some insight on this one.

Thanks,
Eileen

[lynnie_sydney]

Eileen – wonder if you have developed a hyper-sensitivity to mino? That is what happened to me (similar immediate response) and I cant take it any more. You might like to check Maz’s Personal History description of what happened with her and mino – she developed DILE and had to stop taking it. You might also consider checking with your doc about this.

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)

[Eileen]

Lynnie,

Thank you for your response. Will talk to Maz.

Eileen

[JoAnnC68]

Eileen…

I just wanted to let you know I’ve been thinking about you and I’m holding your hand!!
Here is a hug for you () too!!
I hope thing has eased up for you and you are on the road back soon!
Take Care and keep us posted on how you are doing!
Jo Ann

Diagnosed with RA Jan 2012
Oct 2015- RF has dropped to 19!!! Isn't that Great! ?! I'm feeling wonderful! I'm still taking Mino 2 x daily...if I don't forget!
Oct 2014 RF has dropped to 23.1!! Taking Mino 100mg 2 x daily. No Pains & doing great!!
Oct 2013-RF has dropped to 40.9!!! Feeling Wonderful!!
7-17-2013 I'm going Great!! Still taking mino 100mg twice daily. No pains or Complaints!
5-9-2013 RA Dr said I was doing good, I could stop taking prednisone since I dropped to 1/2 mg...so will

[lynnie_sydney]

Lynnie,
Thank you for your response. Will talk to Maz.

Eileen, Maz is away at the moment so may take some time to get back to you. Meanwhile, suggest that you take a look at her experience in her Personal History thread.

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)

[Eileen]

Hello,

Hi JoAnn and thanks for the hand holding and hugs to you, too. How are you doing?

Lynnie, I did look at Maz’s personal history thread. It sounds just like me and my response to the two minos. 😥 I took. So…since I last posted, I’ve received some labs via my PCP who wants my AP dr. to interpret (who is out of the office for two weeks). She did a significant and in-depth panel for SLE. (labs were drawn about the 4-5th week of wash-out period).

Very slightly low complement C4C (which was always normal before)

Very low positive ANA titer 1:40 (which was always normal before)

elevated hematocrit

slightly low eosiniphils with normal white blood count

bun/creat./bilirubin/liver enzymes all normal

My thought is I wonder what my counts would have been like had I not been in the wash-out period? Probably not good and much more elevated than the above.

So far, I’ve re-introduced plaquenil and nystatin. It sounds like DILE to me. 😥 Mino. has been a saving grace for me.

Any thoughts and responses more than welcome!

Eileen

[mary77]

Eileen,
Many years ago, I had a very similar response as you when re-introducing minocin. I had been off minocin for about 5 months while doing IV antibiotics for Lyme. The minocin had helped me initially so much with the arthritis, so was anxious to resume it. After one dose of 50 mgs, I was bed ridden in SEVERE pain (with low grade temp) for 3 days.

That frightened me and I did not try minocin again for many years. At the time, I wasn’t aware of DILE. Many years later I tried starting minocin by separating the pellets (brand name minocin) into small doses…about 25 mgs. I tolerated it and worked up to 50 mgs…but never got beyond that dosing. I did develop strange red blotches…often painful..on my lower legs. These I ignored and felt the minocin helped.

About 2 years ago, I switched to doxy without any trouble. I continue on this today, but only taking 100 mgs twice/week. It is difficult for us (as patients) to assess the problem and feel confident about our answer…the labs that Maz mentions would be important to diagnose DILE. If that is your issue with minocin, then maybe trying doxy would be something you could consider.

Just wanted to let you know that I, too, experienced a very similar reaction!

Mary

[Eileen]

Hi Mary,

Thank you for your response and sharing your story. So much appreciated. I hear you ‘afraid’ to take mino. I, too, had a fever for about 3 -4 days after the two doses. I was in crippling pain and in places that I never had pain before and a weird sort of headache accompanied by nausea, which I cannot describe. 🙁 I wasn’t able to move or get up to use the bathroom that night and my significant other was ready to take me to the E.R. Never have I experienced a response such as this. It started on Tuesday early a.m. and by late Friday, I was back to almost myself, with some residual fatigue. To say the least, it knocked me for a loop. My children haven’t been sick, so I don’t believe they brought something home from school to me. It was directly related to the mino.

When starting abx. and mino, it was smooth sailing once I got past the initial 5 months of herxing. Now…I feel as though I’m starting over again which will be more likely the case, than not. That’s the good news we AP, we can always start again! 😉

I also suspect that babesiosis is making it’s nasty appearance again. Night sweats and then freezing cold every night — but also menopausal. 🙄 I’m so hot inside but my skin is cold to the touch???? 😕 Will be introducing Mepron and zith. when I have the guts to do so after this incident. But it won’t be this week. My dr. is out for two weeks and don’t want to tip the scale in either direction until we have this sorted out.

Anyone else with their thoughts and experiences, please chime in. I need to get over this hump as I’ve been off abx. for about 6 weeks now and this is the longest I’ve gone.

Hugs,
Eileen

[Eileen]

Just a quick update:

Spoke to my PCP’s (nurse) this afternoon and explained what has happened.

Two labs ordered, which will be drawn tomorrow morning: anti-histone antibody single stranded and anti-DNA. Will find out if it’s MIL or hypersensitivity.

Thanks, Maz….

Eileen

[Author]

Posts