Reaction to Minocycline – Change Dose???

[Mumof3]

I tested positive for scleroderma. I started taking minocycline last Wednesday (100 mg). I also took one dose on Friday.

Prior to taking the minocycline, I didn't really have any symptoms (the internist was shocked I tested positive). I had some mild pain under my ribs.

1) Wednesday – First Dose – A few hours afterwards, I had a lot of pain and burning in my ribs. I also had pain lower down. This continued on Thursday.

2) Friday – took another dose – a few hours later I had mild cold/flu like symptoms. I also had a lot of pain of Friday. I have pain and burning on my insides that I've never had before. My face is red and feels dry. My lips went numb (for a little bit). Today my legs felt numb and I am really hurting on my insides.

QUESTIONS:

Is this a normal reaction?

Has anyone else had a reaction like this to minocycline so shortly afterwards?

Should I talk to the doctor about lowering my dosage to 50 mg to start? I am very sensitive to medication.

Is this a good thing (herxing) and should I just suck it up?

Thank you.

[camm]

Hi Mumof 3- I had some of these symptoms/similar symptoms within 2 doses of Minocin (100 mg 2x/day).  I have had rib pain (L side) for years – at times debilitating. It had lessened a bit over the last few years but after two days on Minocin it was killing me again.

I haven't had the numbness but I've had the burning feelings- like my skin/muscles/joints had hot pokers underlying them.  My skin also felt very tight and itchy/hot.  I upped my water intake a lot and took some benadryl- that seemed to help.

I've felt flu-like/ridiculously tired and achy since I started in Minocin 4 weeks ago. The rib pain is intermittent now – though joint pain and flu feeling (fatigue, achiness) is still quite severe. From what I gather, this is all normal in herxing.  I, like you, am writing it off to “a good sign” – even though I feel worse than I did before I started!

-Camm

[Rockin Annie]

Hi Mumof3…..I am on my 5th week of Ap and also feel like I am herxing but only mild not as severe as you.

I do think it is a good thing, you do say the symptoms come on after your dose of Minocycline, so from what I have read the abx is doing its job, but maybe if is unbearable you could lower the dose and see how you go especially if you are sensitive to meds.

Also try having the detox Lemon/Olive oil drink, it is very refreshing and helps get rid of toxins from your body. 

Hi Camm………I have had also itchy/hot skin, ridiculously tired feeling (what a great way you explained it) so I try now to have at least 2 litres of water with lemons added, which I think in turn help to flush out toxins throughout the day.

A question  Camm ……………….I also have pain in my right side and does get very servere at times., hopefully a good sign………..What causes your rib pain?

Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Michele]

Hi Mumof3

I bet your internist wasn't the only one shocked you tested positive for SD!

You are describing classic herxing symptoms. It is interesting to see this little group who all have rib pain as herxing! A year ago when that hit me, there was only a few others who had experienced it.

If you check out the New Arthritis Breakthrough there is a description of lowering the dose, or even extending the dosing out over longer stretches of time in the beginning. So dosing once or twice a week until the herx becomes more tolerable.

The lemon in water drink is a great idea. Epsom salt baths are helpful, too.

This weekend I'm with you in the ribcage pain. In fact, yesterday and today I have herxing in my ribcage. Tolerable and expected. In fact, I have been surprised at how long that area remained untouched by my current level of meds!

Last year this particular herx was way out of control for me to the point I felt short of breath, so I found it wiser to lower my dose. In restrospect, I should have dropped it for longer periods of time, but hindsight is 20/20.

Dr. S took me down to 3 mg doses. I mention this only to let you know there are extremely sensitive cases of which I experienced.

You might check in with your Doc to see what he/she thinks, or just try a smaller dose on your own.

If I had to do it again, 25 mg would have been even better for me. 50 mg was still too much. By the time I arrived to Dr. S, I was already hypersensitive.

Bear in mind, I do have a different dx than you do, so some of the other SD folks may want to jump in here.

I should also note, I associate the rib pain and shortness of breath herx more with the lyme part of my collection of bugs. That's really not quite how it works, but if you haven't already done so, getting a lyme test with a lyme specific lab is hugely important. There are only a couple of labs in the country that do this test correctly. Kim is a SD patient with positive Lyme and a new lyme doctor that is convinced all inflammatory diseases are bacterially based. Maz is closer to my dx., but she's the voice of wisdom that encouraged me to get a lyme test done after my first negative.

Hope some of this helps. The extra pain you have is definitely herxing. Managing it in the beginning is tough, but it also is a positive indicator that there are dying CWD creating that reaction. As John McD often says, kill the bugs, not the patient!

Hang in there!

Michele

[awesomemb]

I started with 50's. I think it made all the difference for me. I did that for a few months and then went to 75mg. I cant handle the 100mg still after 10 months.
Best regards, MB

[richie]

Hi
If you are taking 100 mg daily –talk to the doc about trying 50 mg morning and night –if you are taking 200 mg daily then ask doc to start at 100 mg daily –again 50 in the am and 50 in the pm —
Richie

[Mumof3]

I am taking 100 mg on Monday, Wednesday and Friday. Should I start with 50 mg on M,W and F and work my way up?

[richie]

Hi
It may well be a good idea –run it by your doctor !!!
Richie

[camm]

Annie- the rib pain is the great mystery of the universe.  I've been battling it for 7 years – it was the first thing that went “haywire” before my body went kaput. it came on very suddenly and was excruciating- went through GI tests, CT scan, trigger point injections, etc, etc.  Finally went into pain management mode as no one could ID a cause. It's a very localized pain – I can point to it with a finger and it never moves and never radiates- it's right under the bra line on the left side, about 4″ in from sternum.  Am curious to know if anyone else's is similar in location/duration.  I was on fentanyl (synthetic morphine) for it – and it still hurt!  It always get a lot worse the first day of my period (weird but true) and it definitely gets worse with herx symptoms.  My doc says he's seen a bunch of people (all women) whose chronic fatigue/fibromyalgia/other mystery illnesses started with rib pain.  But to this day no one knows why I have it.  It has never gone away in 7 years, but it has been better sometimes.

Camm

[Rockin Annie]

Camm……very weird, mine pain is more in the back along bra line, and I can pinpoint as well to the area, I always thought it might have something to do with my bronchiectasis as I have had lung problems for so long.

My daughter has just been dx with Fibromyalgia (no rib pain) and was told there was nothing she can do about it but destress, It will be interesting to see how you go with the AP treatment……..Hoping good health comes to you soon……Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Rockin Annie]

[user=869]Mumof3[/user] wrote:

I am taking 100 mg on Monday, Wednesday and Friday. Should I start with 50 mg on M,W and F and work my way up?

This is how I started and only had mild herxing, upped my dose after 2 weeks, so not a bad idea……….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Maz]

[user=812]camm[/user] wrote:

Annie- the rib pain is the great mystery of the universe.  I've been battling it for 7 years – it was the first thing that went “haywire” before my body went kaput. it came on very suddenly and was excruciating- went through GI tests, CT scan, trigger point injections, etc, etc.  Finally went into pain management mode as no one could ID a cause. It's a very localized pain – I can point to it with a finger and it never moves and never radiates- it's right under the bra line on the left side, about 4″ in from sternum.  Am curious to know if anyone else's is similar in location/duration.  I was on fentanyl (synthetic morphine) for it – and it still hurt!  It always get a lot worse the first day of my period (weird but true) and it definitely gets worse with herx symptoms.  My doc says he's seen a bunch of people (all women) whose chronic fatigue/fibromyalgia/other mystery illnesses started with rib pain.  But to this day no one knows why I have it.  It has never gone away in 7 years, but it has been better sometimes.

Camm

Hi Camm,

Just a passing thought…

Virginia is a pretty Lyme endemic area. Even if you've tested negative by standard testing methods for Lyme in the past, it may be something to consider in your mix. Costochondritis is a symptom of Lyme and often the coinfection babesia. Chronic fatigue, in an of itself, has been strongly linked to Lyme. Lyme symptoms are also known to worsen around the time of a woman's period. Not saying this is what you have, of course…I'm just a fellow patient, but may be worth your while checking into further.

If the rib pain isn't alleviated on mino alone, it might help to ask your doc if you could add azithromycin, which is an antibiotic used to target babesiosis. Mepron and Flagyl are also used. In fact, a well known AP Doc down in GA, often uses a combo of mino, flagyl and diflucan or nystatin in pulses for his rheumatic patients and brought his own RA into remission.

Peace, Maz

[camm]

Maz- I'll certainly ask my doc. Am due for more bloodwork soon anyway.  I did test negative for Lyme but totally get that the “basic” test may not be indicative of what's going on.

Annie- Tell your daughter to ask her doc about Corvalen-M and Lyrica. Corvalen-M is D-ribose, magnesium and maleate and has been very effective in treating fibor. Lyrica is one of the two approved drugs for fibro (in the US). It can cause a little dizziness/tiredness so it's best to build up on the dosage. One website your daughter may want to check out is http://www.endfatigue.com (Dr. Teitelbaum's website- he's recognized as one of the US authorities on treatment of fibro/chronic fatigue – he focuses on vitamins/minerals/supplements. My doc, who was recommended by Teitelbaum (Dr T no longer practices actively – just does phone consults) uses more of a combo approach – adding in prescribed drugs to the supplements.  As you know too well, your daughter cannot accept the “there's nothing we can do” answer.  There are things to do for fibro. 

-Camm

[Michele]

Hi Camm,

I notice you are in NOVA. There is a really knowledgeable Rheumatologist / Lyme doctor in your area. Susan / Lyme RA is currently in remission with her guidance. Let me know if you want some info. and I'll PM you the doc's name. If my doc hadn't honored my request to send my blood to IGeneX after earlier negative lyme results, I would have been on this doc's doorstep next.

My ribs have hurt for a long time, too. But they were the worst herx location I had.

Michele

[camm]

Michelle- Sure, I'd love the name.  My current guy (only been going there 5 months after 6 months seeing another supposed “expert” in the field who refused to try anything else when I said I wasn't getting better).  His website is http://www.annapolisintegrativemedicine.com if you want to check him out as well. I'd highly recommend him – he's very much into partnering with you to restore wellness, and never discounts anything you say/suggest.

-Camm

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