Home Forums General Discussion SD minocycline reaction information please

This topic contains 21 replies, has 7 voices, and was last updated by  enzed 5 years, 1 month ago.

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  • #307068
    enzed
    Participant

    19/10/12
    From day 10 on AP up to yesterday – a total of just over 2 weeks on AP, I felt tired but OK. The first week I had severe sweating then that stopped. However, in the middle of last night I woke with a headache and sharp jabbing pains going on around my body. Hard to tell if the jabbing is in joints, muscles or tissues. Today I was exhausted and spent most of the day asleep, just wiped out. I guess it could be described as ‘flu like’ symptoms. Tight chest, some difficulty breathing, used an asthma inhaler sever times today.

    How do I know if this is related to the minocycline; a herx reaction or an allergic reaction to it? I am thinking of halving the dose from 100 mg daily to 50 mg. Any ideas? I’ll post this in general discussion as well as in my personal story so others can respond, give advice or information. Thank you.

    #365509
    Maz
    Keymaster

    @enzed wrote:

    How do I know if this is related to the minocycline; a herx reaction or an allergic reaction to it? I am thinking of halving the dose from 100 mg daily to 50 mg. Any ideas?

    Hi Enzed,

    We are all just patients here, so can’t really tell you if you are herxing or having an allergic reaction, as an allergy would need to be confirmed by labs and a doctor. If breathing becomes difficult, then one should never wait to get assistance.

    There is info on the main site regarding herxing (see below) and what is typically or classically described.

    In terms of potential allergy to tetracyclines (allergy to one tetracycline precludes use of any so it’s important to get this checked by an immunologist if this is the case), this will typically present with elevated esoinophils…very easy to test for in a complete blood count.

    http://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

    “3. A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.”

    This said, it does sound like a typical herx reaction, just going by your symptoms alone. Here is some info on the main site about what a herx may look like:

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

    “Jarisch-Herxheimer Reaction

    Although RA is discussed in particular, patients with other inflammatory rheumatic diseases will recognize many issues mentioned here.”

    “The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms.”

    Herxing should be tolerable, but is a very good sign that the antibiotic is reaching its target. In the case of Lyme disease, for instance, LLMDs (Lyme Literate MDs) will use a patient’s herx response to anti-microbials as a clinical guide as to efficacy of the treatment. So, in this context, herxing is a good thing. If herxing becomes intolerable, then Brown would adjust the dose to patient tolerance. It can be more difficult dialing down a dose to find a suitable dose in the midst of herxing, as it takes a while for “liberated endotoxins” to clear from the body. So, in the case where herxing was beyond tolerance and hypersensitivity occurred, he would do a washout of a few days and then re-initiate treatment at a lower or same dose. I have an article on this that is a transcription from one of Brown’s talks if you’d like me to send you a copy.

    Because Brown described rheumatic disease as an “allergic reaction” (bacterial allergy or bacterial hypersensitivity) to liberated endotoxins to certain bugs, he treated the symptoms as such and would also use drugs, like Benedryl, to help ameliorate symptoms. This is also described in the article mentioned above. However, anything that can be done to “detox” will help to remove these toxins from the body and it’s important to learn about detoxing, in general, because most of us who are so sick have trouble dispensing with these wastes from our bodies and they are, in effect, what causes increased inflammation.

    Do hope the above helps a bit, Enzed, but if you are concerned about allergy, then do be sure to check in with your prescribing doctor and get some labs drawn, if poss. If breathing becomes in any way labored or other signs of allergy occur, then an emergency room visit is in order. Tetracyclines are generally very well tolerated by most people, but one should never take risks with any drug where allergy is suspected.

    By the way, in the case of SD, a herx reaction is usually a sign of an inflammatory overlap of some sort:

    http://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-11481

    “Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 100 mg dose. That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage. Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch Herxheimer reaction of clinical significance. Other supporting therapies may be continued if not contraindicated.”

    Let us know how you get on, Enzed, and sending lots of good wishes as you begin your road back. 🙂

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365510
    enzed
    Participant

    Thank you for all that information Maz. I’ve just read all of it but will need to reread it a few times to take it all in. I think its a ‘herx’ reaction I am having – most likely. I’ve slept for the best part of 24 hours and woke up feeling much better with my breathing returned to normal. I think I’ll carry on for now, staying on 50mg minocycline twice daily and see how it goes. I’ll start detox using green tea. The first week on AP I sweated so much I couldn’t leave the house so that was a good detox.
    Thanks for the help and support Maz and Lyn.
    Joss

    #365511
    Bugs3472
    Participant

    enzed,
    I had the tight chest & difficulty breathing after 3 weeks on minocycline. When the doctor pressed on my chest it was very sore. And sometimes I really was not getting enough air because I would get dizzy. I ended up stopping the ABX for a few weeks, but wish I had not. What I found was if I drink water when I got the test chest it loosened. I wish instead that I would have tried to detox, sauna or something. I’m back on the minocycline but the breathing issues are not as bad this time.

    I personally feel like the mother nest of this infection is in my lungs, since my illness all started with bronchitis.

    Good Luck!!!

    #365512
    niteowl
    Participant

    Hi Enzed,
    I had nearly all the same symptoms that you described! I had just started taking Minocycline 100mg BID Oct.1, 2012. The sweating has subsided but now my feet and hands feel like I have broken glass instead of bone. I am only able to wear adjustable athletic sandals and not enclosed toe shoes right now. It’s bearable because I am confident that there will be improvement down the road( sorry- pun ).

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Doxycycline 50mg M W F stopped
    Levothyroxine .88mg
    Liothyronine 5mg
    Methylprednisolone 12mg per day
    Milk thistle stopped
    Arthrosoothe stopped
    Norcor and Flexaril as needed not whilst on prednisolone
    Hempcore stopped
    Irie Hemp pain balm daily
    Pearl probiotic everyday stopped

    #365513
    enzed
    Participant

    @niteowl wrote:

    Hi Enzed,
    I had nearly all the same symptoms that you described! I had just started taking Minocycline 100mg BID Oct.1, 2012. The sweating has subsided but now my feet and hands feel like I have broken glass instead of bone. I am only able to wear adjustable athletic sandals and not enclosed toe shoes right now. It’s bearable because I am confident that there will be improvement down the road( sorry- pun ).

    Hi Niteowl, strange you have feet issues too. I’ve had sore feet for at least 10 years and only worn adjustable athletic sandals or pull on soft boots in that time. My toes were buckled but since I started this treatment, they’re laying flat again and the pain in my feet is less than before. I can actually walk a few yards bare footed without my feet cramping up entirely. Funny that the rheumy said my buckled toes caused the pain in the feet but the cause of the toes buckling was age, so unless I’m getting younger then I guess he’s wrong about that….too…this really is a journey…

    #365514
    enzed
    Participant

    @bugs3472 wrote:

    enzed,
    I had the tight chest & difficulty breathing after 3 weeks on minocycline. When the doctor pressed on my chest it was very sore. And sometimes I really was not getting enough air because I would get dizzy. I ended up stopping the ABX for a few weeks, but wish I had not. What I found was if I drink water when I got the test chest it loosened. I wish instead that I would have tried to detox, sauna or something. I’m back on the minocycline but the breathing issues are not as bad this time.

    I personally feel like the mother nest of this infection is in my lungs, since my illness all started with bronchitis.

    Good Luck!!!

    Hi Bugs3472, I’ve taken your tip and drunk large amounts of water for the sore chest. I’ve woke up last 2 nights around 4am coughing and coughing and my chest is very sore to touch – feels like my ribs are bruised. I almost stopped the AP and I halved the dose yesterday to 50mg, but today decided to carry on so put it back to 100mg. I’ve been using the asthma inhaler for days now. I don’t want to stop the AP although I weakened yesterday. It’s such a brutal reaction I can easily understand why you stopped. I’ll start the green tea again today. I’m taking pro-biotics to protect my stomach and a magnesium hydration drink to prevent muscle spasms, and I think they both help.

    #365515
    lynnie_sydney
    Keymaster

    enzed – I think as Maz has said, that it is worth keeping tabs on your condition and not ignoring anything that might need a doctor’s advice on, although it does sound like a herx, which probably indicates something inflammatory as part of your condition.

    I’d consider adding N-AC (N-Acetyl Cysteine) to your regime at some point. It’s a great anti-oxidant and useful in so many ways – and I’m thinking of the lung benefits in your case. Some of N-AC’s many benefits include it being a precursor to glutathione production in the liver and it’s a good de-toxer – it’s also used in IV orm in hospitals for Pulmonary Fibrosis and for reversing paracetamol overdose. One of our Volunteers – Parisa – says her husband’s dermatomyositis really turned a corner when N-AC was added – might be worth searching her posts. N-AC is an integral part of the combination abx protocols used to treat chronic CPn (see cpnhelp.org) which of course is a form of pneumonia. I have noticed a difference in my levels of energy since adding it (I have been identified as having CPn as in my pathogen load and have had serious pneumonia and repeated bronchial infection in my history).

    Note: In Australia you cant buy it over the counter as you can in the U.S. but it’s pretty easy to order online. And it’s not expensive. Think my last bottle of 100 capsules ordered online cost $24.95.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #365516
    Maz
    Keymaster

    Enzed, if you are in tremendous discomfort, it is important to get this checked out by your doc. There is one rare, but possible complication in some users of minocycline, called, hypersensitivity pneumonitis. If memory serves, we’ve only heard of one confirmed case of this in recent years here on this forum, but it is possible. Other cases of chest pain and breathing difficulty wound up as pneumonia, pleurisy or something similar (requiring a temporary change in abx).

    It can be really challenging to discern the difference between heavy herxing, an acute/unrelated infection, or a drug side-effect, but one should never take any risks with this sort of thing if the symptoms become intolerable. Here is some info on hypersensitivity pneumonitis on Wiki and symptoms, as you will see, can mimic those of heavy herxing:

    http://en.wikipedia.org/wiki/Hypersensitivity_pneumonitis

    Asking one’s doc if lowering the dose is okay is one way to test whether it is herxing or not, because lowering the dose should provide some relief. It serves no purpose to be on a high dose and to be suffering this much, as too much inflammation is going to be counter-productive anyway. This is a very slow therapy and too much release of antigen right from the get-go will wind up creating hypersensitivity, as the body can’t release these toxins fast enough. SDers typically have probs with detoxification due to skin and gut involvement (two of the major detox pathways).

    This post isn’t to concern you, just to provide info on a rare, but possible side-effect of minocycline that can occur and which shouldn’t be ignored if signs/symptoms seem similar.

    If minocycline is causing a drug-induced pneumonitis, then there are always the alternatives of doxycycline or tetracycline, which seem to cause less in the way of hypersensitivity-like reactions in most folk.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365517
    enzed
    Participant

    @lynnie_sydney wrote:

    enzed – I think as Maz has said, that it is worth keeping tabs on your condition and not ignoring anything that might need a doctor’s advice on, although it does sound like a herx, which probably indicates something inflammatory as part of your condition.

    I’d consider adding N-AC (N-Acetyl Cysteine) to your regime at some point. It’s a great anti-oxidant and useful in so many ways – and I’m thinking of the lung benefits in your case. Some of N-AC’s many benefits include it being a precursor to glutathione production in the liver and it’s a good de-toxer – it’s also used in IV orm in hospitals for Pulmonary Fibrosis and for reversing paracetamol overdose. One of our Volunteers – Parisa – says her husband’s dermatomyositis really turned a corner when N-AC was added – might be worth searching her posts. N-AC is an integral part of the combination abx protocols used to treat chronic CPn (see cpnhelp.org) which of course is a form of pneumonia. I have noticed a difference in my levels of energy since adding it (I have been identified as having CPn as in my pathogen load and have had serious pneumonia and repeated bronchial infection in my history).

    Note: In Australia you cant buy it over the counter as you can in the U.S. but it’s pretty easy to order online. And it’s not expensive. Think my last bottle of 100 capsules ordered online cost $24.95.

    Thanks Lyn, I’ve ordered a supply of N-AC from the USA. Should arrive here in a couple of weeks. It sounds like a good one for me to take.

    #365518
    enzed
    Participant

    @maz wrote:

    Enzed, if you are in tremendous discomfort, it is important to get this checked out by your doc. There is one rare, but possible complication in some users of minocycline, called, hypersensitivity pneumonitis. If memory serves, we’ve only heard of one confirmed case of this in recent years here on this forum, but it is possible. Other cases of chest pain and breathing difficulty wound up as pneumonia, pleurisy or something similar (requiring a temporary change in abx).

    It can be really challenging to discern the difference between heavy herxing, an acute/unrelated infection, or a drug side-effect, but one should never take any risks with this sort of thing if the symptoms become intolerable. Here is some info on hypersensitivity pneumonitis on Wiki and symptoms, as you will see, can mimic those of heavy herxing:

    http://en.wikipedia.org/wiki/Hypersensitivity_pneumonitis

    Asking one’s doc if lowering the dose is okay is one way to test whether it is herxing or not, because lowering the dose should provide some relief. It serves no purpose to be on a high dose and to be suffering this much, as too much inflammation is going to be counter-productive anyway. This is a very slow therapy and too much release of antigen right from the get-go will wind up creating hypersensitivity, as the body can’t release these toxins fast enough. SDers typically have probs with detoxification due to skin and gut involvement (two of the major detox pathways).

    This post isn’t to concern you, just to provide info on a rare, but possible side-effect of minocycline that can occur and which shouldn’t be ignored if signs/symptoms seem similar.

    If minocycline is causing a drug-induced pneumonitis, then there are always the alternatives of doxycycline or tetracycline, which seem to cause less in the way of hypersensitivity-like reactions in most folk.

    Thank you Maz, I’m taking all that info on board and will read it. I don’t really want to take AP problems to the Dr yet because I’m afraid he might chicken out on me and refuse to give me more AP treatment. He’d never heard of this treatment before I told him about it. I know of no other doctor here in Cairns familiar with AP. I can halve the minocycline dose from 100mg daily to 50mg. I guess my view is, having had this disease for over 30 years, I am sick and tired of it, and if I need to kick it hard, then that’s what I need to do. If it knocks me around in the process, well, it knocks me around anyway, so I don’t feel I have anything to lose. But if it looks like an infection or a bad reaction I will stop the AP and ask the Dr if I can try doxycycline or tetracycline instead. Thanks for your concern and the valuable information you provide.

    #365519
    lynnie_sydney
    Keymaster

    Thanks Lyn, I’ve ordered a supply of N-AC from the USA. Should arrive here in a couple of weeks. It sounds like a good one for me to take.

    For future reference, you can order online from a few local suppliers – no need to order from U.S. Here’s a link to the last one I ordered: http://myworld.ebay.com.au/purestliving?ssPageName=ADME:L:OC:AU:1181

    And I’d read Maz’s post above – makes great good sense. Please dont ignore anything you may need to seek advice on – and I’d at least try and lower the dose as one way of discerning whether you are experiencing a herx. This is absolutely a slow road to greater wellbeing in which ‘less is more’ – in terms of benefits and response.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #365520
    enzed
    Participant

    @lynnie_sydney wrote:

    Thanks Lyn, I’ve ordered a supply of N-AC from the USA. Should arrive here in a couple of weeks. It sounds like a good one for me to take.

    For future reference, you can order online from a few local suppliers – no need to order from U.S. Here’s a link to the last one I ordered: http://myworld.ebay.com.au/purestliving?ssPageName=ADME:L:OC:AU:1181

    And I’d read Maz’s post above – makes great good sense. Please dont ignore anything you may need to seek advice on – and I’d at least try and lower the dose as one way of discerning whether you are experiencing a herx. This is absolutely a slow road to greater wellbeing in which ‘less is more’ – in terms of benefits and response.

    Thanks Lyn. I’ll see how I feel tomorrow and will lower the AP dose if the chest/ribs haven’t improved by then. I’m hoping its a herx though.

    #365521
    enzed
    Participant

    I didn’t take any minocycline yesterday as again I woke up in the night with severe coughing, asthma and sore lungs/ribs. By this morning the ribs are better and the asthma is receding rapidly. I feel a lot better today. The Raynauds finger has suddenly started healing again, and quickly which is great. I’m not taking any minocycline today but will start again tomorrow on a halved dose of 50mg. I haven’t needed eye drops for dry eyes for several days, so its a mixed bag of results to AP. I don’t want to give up – I want to find out if the asthma is caused by the minocycline. If so, I’ll ask my Dr to change the antibiotic. Also had blocked sinuses last few days so taking Xergic for that to clear sinuses before I take minocycline again.

    If I need to ask the Dr to change the antibiotic I will need to take a print out of medical information that will persuade him its the right thing to do. He would not read the information printed off this website, but read the scientific / published research of Dr Cantwell that I also showed him. Is there a medical research printout about alternative antibiotics suitable for SD that I could print out and take to him? If there is, that would be great! Thanks in advance for any help with this.

    #365522
    Maz
    Keymaster

    @enzed wrote:

    If I need to ask the Dr to change the antibiotic I will need to take a print out of medical information that will persuade him its the right thing to do. He would not read the information printed off this website, but read the scientific / published research of Dr Cantwell that I also showed him. Is there a medical research printout about alternative antibiotics suitable for SD that I could print out and take to him? If there is, that would be great! Thanks in advance for any help with this.

    Hi Enzed…if you ultimately decide to switch out after trying the lower dosing, it should be okay to ask for doxy or tetracycline instead of mino. They are in the same class of antibiotics and are just earlier versions of mino. 😉 Unfortunately, there are no studies on either for SD…just the Minocycline in Early Diffuse SD study that was done by Dr. T. at Harvard.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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