Allergic to Minocin

[Noraclaypod]

I am covered in sores that itch terribly, and I’ve scratched until my skin is bleeding. I broke out shortly after starting Minocin from the Canadian pharmacy. I was taking Minocycline in a generic form until a few months ago, when the dermatologist I see changed the dosage from 50 mg to 100 mg twice a day, Monday-Wednesday- Friday. I broke out in a rash at first, then the rash began to bleed and was painful. It was from a different manufacturer. The name brand drug by Triax was the only one I could take without breaking out.
I got bitten by some Harvester Ants in my garden. My legs began to swell, turned red and knots formed in every lymph node up to my groin. I have never experienced itching like that, it was unbearable. My husband packed my legs in cold compresses and tried to find a treatment for the ant bites, but there was none. I called the hospital and they said go to a clinic. I called a clinic and they said go to the hospital! My legs are so swollen I have to wear my husband’s shoes because mine won’t go on. My toes are numb and purple. The Harvester Ant is the most venomous insect known; four stings kill small animals. General allergic reactions to ant venom are similar to Yellowjacket stings, and anaphalaxis may result in death.
I have been scratching day and night for over a month now, and I’m keeping my husband awake.
The dermatologist gave me a week of steroid treatment and antihistamine which helped until I finished the medicine. As soon as I discontinued the prednisone, the swelling, redness and unbelievable itching returned.
I took Minocin successfully for almost a year, and my Diffuse Scleroderma seemed to be getting better. I had a little energy and could do household chores. Now I have such fatigue I can’t function. I have symptoms of Sjoegrens; dry eyes, upper back pain, craving for salty foods. I’m so dizzy I stopped driving. I’m under terrible financial stress and in fact we are being foreclosed on by the bank. I’m terrified that I may not be able to resume antibiotic therapy. I have had serious reactions to Erythromycin, severe allergic reations to Pennicillin, and a mild reaction to Doxycycline.
I was never able to get an appointment with a Scleroderma doctor, and the only tests I’ve had to date was a scan at the hospital last year where they said I had a mass in my liver. I’m feeling pretty hopeless. I applied for disability but of course was turned down because I didn’t have a doctor to confirm my condition. Does anyone have any experience with an allergic reaction to Minocin, and is there anything I can do to help myself? I would even consider herbal therapy. I feel so sick, and I have no access to healthcare because of my financial predicament. I suspect the terrible itching is due to liver failure. If anyone has any experience with a situation like mine, or has any suggestions, please respond.
grateful,
Noraclaypod

[lynnie_sydney]

Nora – I am so sorry that you are going through so very much right now – with the harvester ant stings just adding to it all.
Did the hospital ever give you any more details regarding the mass in your liver or what course they suggested you pursue by the way?

You may not get too much in the way of response from others re this until after the weekend. Meantime, I am pasting in a link to a section on our main site that deals with how to treat Herxheimer responses. https://www.roadback.org/index.cfm?fuseaction=education.display&display_id=124
I am wondering if some of your responses to the tetra meds have indeed been herxheimer reactions versus allergic reactions, which seems possible given that some of them followed an increase in dosage. I seem to remember that allergic reactions will happen whatever the dosage. Here is an extract from our main site that talks about how to distinbguish a herx from a flare and a herx from an allergic reaction.

Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.

WBC will elevate in a Herxheimer and lower in a flare.
A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases.
A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

As you are obviously under so much financial stress right now, I am wondering whether you might email Dr S. in Iowa to ask for his input on all this. I understand that he is usually very good at answering emails and will also work with your local doctor (assuming you have one). One of the U.S. Volunteers will be happy to PM you his details if you want to pursue this option.I am sorry that I dont have anything further to offer. I am sure that others will chime in with their wisdom, suggestions once they see your post. Hang in there, Nora. Lynnie

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)

[hopefulmama]

Nora,

I am not on antibiotic treatment but I joined the board in July due to scleroderma-like symptoms (Raynauds and Esophageal Dysmotility) and have since tested positive for lyme, babesia microti and mycoplasma. When things were at their absolute worst, I was experiencing increasing chemical sensitivity and food allergy. It was getting worse and worse, I seemed to be having allergic reactions to almost everything I touched or ate. I remember sitting on my staircase and weeping because I had just eaten something with lemon in it and my entire mouth swelled up (I’d never had a problem with lemons before in my life) and then I went to wash dishes and my entire arm broke out in hives from the dish soap. I felt like the entire benign world had suddenly become a life-threatening enemy. It was an awful feeling. I reacted poorly to penicillin, tylenol, the pink dye in benadryl, iodine, betadine, chloroprep, shampoos, dish soaps, you name it. And it was getting worse and worse.

I am so happy to report though, that five months later, nearly all of these allergies have resolved. In the interim, I have mainly been working so hard to rebuild my gut and immune system, and I am also taking herbs for the lyme and co-infections. I think the supplements that have been most helpful for me (although I of course will never really know which one is the most helpful or whether it is a synergy between all of them, since I am taking many things at once) have been the Moducare which you can purchase for a reasonable price over the internet or via the Vitamin Shoppe, and also the probiotics which I take in large doses, transfer factor, and the LDN. Plus the detoxing that I am doing via infrared sauna, glutathione, chlorella and drinking green drinks (I use Amazing Meal but there are a ton of them out there) once or twice a day. I also went gluten free again and as soon as I cut gluten out, many of my other allergies went away. Oh, and I found out that I was highly allergic to soy so I began to stay away from soy and the other foods that I came up allergic to via skin allergy testing.

Something is working, because I can now eat sea salt and lemons with no reaction where for a while my entire mouth was swelling up! I can eat coconut oil, which I couldn’t even touch without burning intensely at the time. I am much more confident about trying new things now because my system is clearly getting a lot stronger and my digestion is so much better – so now I am not frightened of having to take new drugs or try new things.

I hope any of these suggestions may help you in some way. I think multiple chemical sensitivity is fairly common in advancing autoimmune disease and rebuilding the gut and immune system could be helpful.

Warmest wishes for your speedy road back to health. I will keep thinking about this and see if there is anything else I can come up with that might be of help.

Warmly,
A

[pinkhorses]

Nora,
I am very concerned about you. You may have an emergent condition. Craving salt and feeling dizzy can be a sign of adrenal insufficiency (AI).

You were on steroids that are now discontinued, this could cause adrenal insufficiency. Having Scleroderma can cause this as well.

AI reduces cardiac output and could be the cause of the purple numb toes and the dizzy spells.

The adrenal glands produce a number of hormones, some that affect how we react to things like stings and medications.

I am not a medical professional, but I do know a bit about AI as I have had my adrenal glands removed.

Cortef and Florinef are very inexpensive, I hope you will consider a trip to the ER and ask to be tested for AI. You should have them test Potassium before they give you any, it could be high.

I hope you are well soon,
T

[Kim]

Hi Nora,

I’m so sorry you have so much on your plate right now. You have already been given excellent advice and I couldn’t agree more with what has been said.

I’m sending you a PM with the contact info for Dr. S. to see if he can help.

Hang in there, Nora.

Take care…..kim

[Noraclaypod]

Thank you for responding, and for the suggestions. I do think I should probably go back to the hospital and ask for bloodwork. I sat there six hours the last time, and never did see a doctor, so its a desperation thing. Access to healthcare here is really dependent on insurance, which I don’t have. There is a scale pay clinic, but they only take the first five people Monday to Thursday, and there is no doctor there with any Scleroderma experience. I tried a local RA, but he charged me $125 to tell me he wouldn’t treat me without insurance, and referred me to a chemo doctor two states over. The doctors at the hospital didn’t even diagnose me. The first one said it was just a rash that would go away on it’s own, and the second and third had no clue what was wrong with me and offered no follow up. An old doctor who retired recently is the only one who knew exactly what I had. He got me in to see the dermatologist right away and insisted I start AP treatment, and get a pulmonary workup. I wasn’t able to get it because they only accept patients with insurance. The dermatologist saved me. I was very close to death and hadn’t been able to get up for about a month. I lost 30 lbs. and was so short of breath that I couldn’t even breathe laying down. With Minocin I was getting my life back. I went from being completely crippled and unable to walk, to quite functional except for stairs. It wasn’t until the pharmacy switched my medication to generic that I started having a reaction to it, and then the Harvestor Ant bites inflamed my legs. Plaques formed on each lymph node, and the pain is maddening.
Because I don’t have a doctor and lab results, I don’t think Dr S will be able to do anything for me, but I will email him and ask for instructions if you can give me his contact info. I’m so gratful for your responses. Finding a place to get information and having this support is helping me hang on when I’m so depressed, frightened and exhausted. Thank you so much.

[PhilC]

@Noraclaypod wrote:

With Minocin I was getting my life back. I went from being completely crippled and unable to walk, to quite functional except for stairs. It wasn’t until the pharmacy switched my medication to generic that I started having a reaction to it, and then the Harvestor Ant bites inflamed my legs.

Hi Nora,

Do you have any of the generic minocycline left, or the empty bottle? Was the prescription written so that you could get it refilled a number of times, or would you have to see a doctor to get a new prescription?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Noraclaypod]

Yes I saved every single container, both the generic and the name brand refills. The name brand drug costs $660 dollars a month, so we couldn’t pay our mortgage.
The dermatologist only gave me a couple of refills at a time, was resistant to the idea that the generic drug was some how different than name brand, and has refused me any more refills, telling me to discontinue the drug. It has been a battle of wills trying to get the prescribed AP treat ment through this doctor, whose only two SS patients died while under his care. One washed out and the other didn’t respond to what he prescribed. He did read the book I bought for him (…The Diagnosis That Can Save Your Life) and hundreds of pages of success stories about AP and Scleroderma that I printed out and hand delivered to him in an attempt to be proactive in resolving my disease. He insisted that I only had Morphea until I told him I had elevated blood pressure and was so short of breath that I couldn’t bend to put shoes on without huffing and puffing. I showed him the paperwork from the hospital, which didn’t list a cause for the mass in my liver, so he made his own conclusions on that. He has refused payment many times and only charged me $15 for hour long visits, so he is a very good doctor…just not really up on what needs to be done for a Systemic Scleroderma patient.
He said I needed to get a pulmonary workup before we could go any further, because of my hypertension. I made several attempts to get an appointment with a specialist, but each time they canceled my appointment and left a message for me to call and reschedule. I believe they will continue to cancel any appointments I make, probably because there is no insurance company to get their money from, and a pulmonary workup is probably pretty expensive.
Triaxx is the manufacturers name on the name brand Minocin that didn’t break me out and was working. Steiffel or Glaxo-Smith Kline was the generic one that broke me out–a powdered 100mg capsule. The reason I ordered from the Canadian pharmacy was because they only charged $165 for 100 capsules, compared to $660 for 60 capsules here at CVS pharmacy. But when the drugs got here and I had taken four days doses, I started to see red raised bumps and they eventually covered my whole body. I have literally scratched night and day since October 11th. The only thing that stops the itch is cold packs. My husband packs my legs and I pack my arms, and I sleep shivering for an hour or so before they warm up and go back to the freezer.
I can’t know whether the Nsaids they prescribed for the ant bites, the Minocin or the ant bites themselves are responsible for the horrible, incessant itching, or liver failure.

[marypart]

Nora,

My son has Lyme and other infections, so I don’t know if this is relevant, but,

I notice that your rash came when you INCREASED the dosage. In my son’s case he started having rashes and hypersensitivity right after a change of med and increase in other meds. We believe now that his body was having an allergic response to too much die-off.

We settled him down with lots of Claritin, Benedryl (at night), Singulair and Zantac. Only the Singulair was prescription. The others are OTC and come in generic. The zantac is called an ant-acid, but it is actually a Histamine-2 blocker. Claritin is a Histamine-1 blocker.

Basically we blocked his histamine response. After a few week break, his rashes are completely gone and now he is back on anti-biotics. He took Claritin in the morning. Zantac twice a day, Singulair once a day, and a couple of benedryl to sleep.

He also uses another product that is available on the Internet, called Histame. It is a product that clears histamines from the gut. It’s expensive, but we think it also got him back on track.

Maybe this will help.

I think maybe you just started killing too much bacteria for your system to handle at the same time. Assuming you did not have a classic allergic response to the med– with breathing problems and neck swelling– you might be able to try again with the lower dose after you get rid of the rashes.

Good luck,
Mary

[pinkhorses]

hello,
triaxpharma.com has a patient assistance program, just click on products or call 1-800-956-0697

Some Phamaceutical companies have very generous programs. I do not know the guidelines at Triax.

I take a very expensive drug (thousands per year), even with insurance and substantial income, the drug company provides it at no charge. My insurance will not pay for it.

You do need to get the doctor to sign off, so if you contact Dr. S maybe you could give him the PA program info.

T

[Noraclaypod]

It would be good if that’s the case, because I could get back on the AP meds. I have taken a prescription antihistamine, along with the steroids, but the rash is still raging. I was given way too high a dose of Nsaids for the ant bites by a dermatologist, (Motrin, basically) and it hammered my already challenged liver. Benedryl wasn’t working and in fact the dr said some people are allergic to the pink dye they put in it, which could be making the reaction worse, so I discontinued.
Because everyone reacts differently to medications, what works for one doesn’t always work for another. My big problem is my liver not functioning, so when killed bugs are dumped into my liver the toxins further inhibit function. Your advice is right; the first thing the dr wanted to do was give me histamine blockers to calm the eruptions. So far the only thing that made a real difference was the prednisone. I saw an immediate reduction in swelling, redness and pain. For five days on the steroids I was able to walk normally. Now my legs are swollen from the toes past my knees, and my joints don’t bend. The pain is bone deep.
If my husband will drive me to the ER tomorrow, I will try again to get some care. Thanks to all of you who responded, it helps a lot, and I appreciate your care, which so far has been better than the medical community! Love to all. Thanks for the info on the meds, I’ll pursue that for sure if I can get another prescription.
Nora

[PhilC]

Hi Nora,

You should read this web page:
Secondary Porphyria: what you should know before starting a CAP

I believe that you may find the information on that page to be very helpful.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Noraclaypod]

Thanks for the link, Phil. I read that part about the starchy foods, which is very curious. I eat alot of fruit and raw vegetables and very little red meat. I don’t eat bread, gluten or wheat at all, and consume foods that are highly alkaline. If nuts and seeds contain arginine and arginine feeds SSc, then I will switch to snacks that don’t contain arginine.
Going to lay down for a while and NOT SCRATCH (I hope) I need to sleep, badly.
Nora

[PhilC]

@Noraclaypod wrote:

I have had serious reactions to Erythromycin, severe allergic reations to Pennicillin, and a mild reaction to Doxycycline.

Hi Nora,

What kind of reaction did you have to doxycycline? And how much were you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[mj47]

Hi Nora,
So sorry for all that you’re having to endure right now.
I just wanted to throw in my 2 cents…I am not a fellow patient (my husband is the reason I’m on this forum), nor am I in any way a health practitioner. But, I know that when my husband was on methotrexate for his psoriatic arthritis, an MD who was an integrative practitioner put him on milk thistle to make sure that his liver was functioning optimally.
Maybe others will chime in here who are more knowledgeable than me. But, when I saw that you’re having liver issues, I immediately thought of milk thistle. It’s very inexpensive & can be bought at the CVS.
Here’s a link w/ some info on it:
http://www.umm.edu/altmed/articles/milk-thistle-000266.htm

You can get through this.
~mj

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