At what point, or at what number of side effects/symptoms, does one decide it's time to stop Minocycline and try a different antibiotic?
Case in point...I originally started taking mino seven days a week, but after a couple of weeks, I switched to pulsing M/W/F, as I was herxing pretty significantly and was also having terrible headaches. After a few days, I also had to decrease my dosage from 200 mg. to 100 mg. as I was still getting the bad headaches and also began having gastrointestional problems.
This is my second week of pulsing and I am still herxing terribly (actually worse), I no longer have the headache, but my gut is killing me, I've started with loud tinnitus in both ears (this also happened with Remicade, which is why my RD took me off of it), AND, I broke out in a rash on both arms and chest yesterday about an hour after my mino dose.
The herxing and gastrointestional issues I can deal with, but the tinnitus and the rash really bother me, as I'm thinking this could be an allergic reaction.
I really don't want to cut back lower than 100 mg M/W/F, as I know I need to herx. But the possility of a mino allergy has me in a quandary. I think at this point I'll give it another try tomorrow, but if the rash gets worse, I'll probably stop taking it until I see my RD next week.
Any advice my friends? ? ?
I'm bummed.
I wouldn't stop the Mino at all - from what you are describing it's doing exactly what it's supposed to do. And not only that - you're doing exactly what you should do - drop down the dose until you can handle it. There are some people (mostly Lupus) that never get over 25 mgs. a dose MWF and they still go into remission.
The rash thing is really common and will go away. I got it only a smidge on my inner elbows - exactly where I would have evidence of food allergies when I was a kid.
As for the gastro - what amount of probiotics are you taking every day - including Mino days but make sure between doses as you kill it it off with the Mino! I'm taking 4 caps daily w/ 3.4 billion happy critters per pill. Yum! NOT but it needs to be.
Also - don't take the Mino and then go to sleep. You need to stay up at least an hour so you don't get the gastro thing.
If you go to the RB run a search on rash and/or tinnitus; it seem to be common herxes. The good news is that both tend to disappear in the first 3 - 4 months.
My personal belief is that there is really no such thing as a Mino Allergy. If you think about food allergies, its the second exposure that leads to a anaphalactic reaction. So how come people on Mino have a reaction that a doc calls an 'alergic reaction' up to years later? I intended to take Mino even if I had the MIL because my research led me to believe it was a herx. Actually, I figured my freaky Mino reaction wouldn't be the Lupus one but the pneumonitis one so I planned to really really really reduce my Mino and cough my lungs out until the beasties were gone. When I got pneumonia in Feb/Mar I was sure that was it but it was only regular pneumonia so my docs left me alone. LOL
How to survive a herx?
1) epsom salts baths. Run a search on the RB for the recipe. It pulls toxins from the skin and should really ease the rash.
2) Whole Lemon/Olive Oil Drink.
I cannot stress enough how well this works. I HATE lemon and had to gag this down - but when push came to shove my husband would make it for me and MAKE me drink it. He noticed how much better I did on days I used it. It was developed for AIDS patients to help their livers detoxify.
Drink comes out like a frothy lemonade. Strain. Drink right away. If you try to split it for use later it gets really bitter.
5. Add 1 heaping tbs of Lecithin to reverse any neuropathy (worked for me).
3) Make sure you add Milk Thistle to your regime. It supports the liver while you are processing all the toxins.
Pip
Gale:
I second Pip's advice. When I first started the minocin, I herxed for a month, then it gradually got better. I NEVER felt to sick but I knew it meant the research was right and I was able to stick it out.
AP is NOT a quick process. I've been on minocin since March 2005 and am pretty much in remission. I've had a lot of stress with a new move to South Korea and it gave me a pretty good flare. But I have never been as bad as when I was using the rheumy's convention stash of drugs.
I am also not a fan of the biologics. We had a friend whose son is on them for Crohn's Disease. Well, due to his compromised immune system he caught a bug, ended up at Mayo Clinic with a 1% chance of life all at the ripe old age of 21. He pulled through and has been through many surgeries since and is still recovering.
AP is definitely the way to treat RA but it is not for the faint of heart. I've had many struggles along the way including having a handicap parking permit. I don't need that anymore!
Stick with it and see how you feel in a month or year. You will be shocked and amazed. I also will never take my health for granted again.
Becky
As far as my probiotics, after our last conversation I increased my dose to 4 capsules daily, each capsule containing 1 billion active live organisms. Still not helping the gut though. When I see my RD next week, I'm going to ask him to write me a prescription for brand mino, and hopefully that will help.
As far as allergies, you're right about it being more common with second exposures. BUT, many times one can develope a medication allergy even after a long standing history of taking a particular medication. The rash thing really bothers me, but I'm glad to hear it's not uncomon and usually disappears after several months...my initial headaches seem to have disappeared, so I'm hopeful.
I will definitely do a search for tinnitus at the RB, as that's another thing that has me bothered, especially since my RD had me scared about ototoxicity and deafness when I had major ear ringing while on Remicade.
I'll say one thing, this herxing thing really sucks, but at least I know it's WORKING! I was feeling so awful today that I went into work late, worked 3 hours, and came home. Just how long does a 'typical' herx reaction usually last?
As for the lemon/olive oil drink, all I can say is DAMN that sounds nasty! Maybe I could choke it back then follow it with a diet coke chaser?? LOL
Thanks Becky! I'm still really new to AP, and need all the advice and encouragment I can get, as my RD is willing to prescribe mino for me, but not offering much as far as support...he's more into the biologic side of treatment.
Gale - Brand will help. Tell him to note your chart you are having GERD symtoms. This will help you later when your insurance company figures out you're on long term ABX and wants to boot you back to generic. It gives you ammo.
Search the RB for rash too - really, really common. The beasties have to get out of the body one way or another. That would entail your liver. Or your skin. If your lungs are compromised at all, you can expect a pneumonia herx too. I did. :-)
You know, everybody posts how tasty that Lemon Drink is. If you like lemon. I HATE lemon. Never eat lemon anything. Meringue? Yuck! Sometimes I'm bold and will put fake sugar lemonade drinks in my tea...but rarely. Ick! Remember Nestea? And then they had the nerve to put that ...stuff...in cans! I think that's what did it for me!
Becky -
I just got off a huge move that was really stress filled. I know going to Korea is more than I had to handle, but why do you think you flared? What's your dose, if you don't mind me asking?
Pip
Hi Pip:
I think I flared due to A LOT of stress! It has been one of the most stressful times in my life. Not only we were preparing for this move, we went to visit the folks one last time before we left and ended up at the emergency room with my MIL. She has been battling a blood cancer, MDS, and was also recently diagnosed with lung cancer. We spent 16+ hours a day at the hospital and had to change our flights. We stayed a week and then flew to Korea.
I was also very naive about pain. My MIL was in soooo much pain. They tried everything as far as narcotics and nothing really worked. To see someone in so much pain was incredible difficult. They said they had given her a level that would have knocked out a horse but she had been popping percocet like candy for the last year or so. They also had to worry about her respiration, which is decreased with narcotics along with the lung cancer.
We spent a hurried few days at home and I didn't get what I wanted to get done and flew to Korea. I knew it would not be long for the phone call which came on our third day in Korea. My MIL had passed. We had a lot of trouble booking flights. We could not get back for three days and then had the funeral the day after our arrival. We stayed a little less than a week and flew back.
I was battling extreme stress, jet lag, exhaustion... just plan didn't take care of myself and wham! The pain hit my knees and my ankles. It had never been in my ankles. Now, just imagine living in a country where you walk everyway and for miles, you got it. HERX!!!!
Luckily, I have a years worth of everything including pain med. It is getting better everyday and is almost gone entirely. I think this place will do my RA and my health in general a lot of good. I did walk everyday but I can't squat and you should see the people do that. A lot of vendors just sell sitting on the ground and the people squat down to look. I can't squat right now and it's not the RA, it's my muscles. They also eat, in the traditional restaurants, sitting on the floor. I can get down but I have a hard time getting up. I also can't sit cross-legged hardly at all. So I am going to exercise these muscles!
I am keeping a blog of my adventures. I am in the midst of my third week. We are living in a extended stay hotel waiting for our ocean shipment to get here. It has taken 60 days. So that has also been stressful, come to think of it.
I am finally getting used to the time change too. We are 14 hours ahead here. I also am learning sooo much. I didn't know the Korean War never ended! They are in a cease-fire.
I wasn't able to get my probiotics over here. They have to be refrigerated and I just didn't want to deal with it on top of everything else. But they have a yogurt drink that is really good. I had yogurt but this is like sweetened milk so I'm doing that and it seem to be working.
I am on 200 mg. MWF. A few months before we left, my AP doctor had complete labs done on me. The only surprise and yes, it was, is I've always been seronegative for RA, now I'm positive, slightly, but yes a change. He said they don't really go by that anyway. But my inflammation levels were only slightly above normal which is still better than when I was first diagnosed!
So I do feel stress can make those little buggers multiple and try to conquer. I also did a very strange thing at night, don't know if it helped but when I was really bad with RA and before I heard about AP, I saw a Reiki healer. She told me to meditate and feel like I was a tree and that the bottom of my feet branched down into the ground like roots. Then take all the pain, wherever it is, and metally push it out through the bottom of my feet into the roots therefore it leaves your body. I don't know if it helped but it made me feel better and I am feeling just about my old self.
Well, Pip, I hope that answered your questions. Can you tell I'm a little lonely. Hubby works over 12 hours a day so I don't see him much and where we are living, Suwon, no don't see westerners everyday like Seoul.
Becky
Hi, Gale! I echo what the others say. It sounds like a herx. Many people report the exact same symptoms, and they do go away with time. If it is too much to handle, take your time in working back up to 200 mg MWF. This is good news! You are killing microbes! I am sorry to say, but according to some AP doctors, tinnitus from tetracyclines, usually means ear mycobacteria. Good thing you are catching it now before it leads to hearing loss. We discussed "autoimmune" hearing loss once before on this board. Many diseases that involve chronic inflammation are now thought to be "autoimmune," and Dr. Brown and others would say, caused by CWD bacteria. Slow and steady wins the race in AP. It is not a quick fix. But it is a treatment that works. Do be sure to take your probiotics.
PS: I have had the veggie bowl with brown rice two times since you recommended it!
Take care and Hang in! ~Karin
I am SO sorry about your mother-in-law and all of your stressful recent events! Stress will definitely lower the immune system and allow the mycobacteria to take over. Please do take care of yourself and get plenty of sleep. If you'd like, you can PM me and I can ship you some probiotics.
I am going to check out your blog now! Take care.
Hugs, Karin
I don't know enough to say anything about the symptoms, but I can say on the probiotic front that I've found quality really makes a difference in how well it works. A lot of probiotics come as powders or gel capsules, and the huge vast majority of them are killed by your stomach acid so they never reach your gut, where they're needed. You can get probiotics that are single enteric coated that need to be refrigerated but get to your gut, probiotics that are triple enteric coated and don't need to be refigerated, and probiotics that are spores and aren't affected by heat or stomach acid. You need to take a fairly broad spectrum of helpful bacteria. I use the three types of products I just mentioned and I kind of mix them up. I take then twice a day including the days I don't take Minocin. I also often browse probiotic products looking for good ones (I'm thinking of trying Kefir except it's quite high maintenance). I talk to a lot of naturo-pharmacists about different probiotics, too. Is naturo-pharmacist a good word? I just made it up to describe the pharmacists that work at the naturopath store. I'm currently using Florastor, Reuteri Acidolphilus Pearls, and Acidolphilus Ultra.No, we don't know ANY Korean but the company does pay for each of us to have a private tutor. Of course, the tutoring company has not returned 3 emails from hubby. Hmmmmm.
Almost everyday someone comes up to me and wants to talk English. They are soooo friendly.
It's funny, my dad was over here in the Korean War and he DOES NOT believe me when I say it is not over. He says it is. That's my dad!
We will be here for 3 years unless North Korea acts up. I see F14s overhead every day. I had never seen one in person before. They are an amazing piece of engineering and really cool to watch. It's really funny to see the South Korean spin on things. They don't believe ANYTHING North Korea says or does. I also never knew Seoul was so close to the border. Yikes!
I think I'm getting a better education than when I was in school.
Becky
To me it sounded like what Becky described was more of a flare than a herx. Becky, what do you think it was?I think I did write herx because I had never flared before. Hopefully, that will be my one and only flare!
The multiple 14 hour plane rides did not help. I don't like to fly anymore. I never used to but back in the late 70's my sister and I a DC10 from Chicago to LA. The same flight we were on crashed on takeoff an exact week after we took it. I still have my plane ticket because of it. Flight 191 and someone even had pictures of the plane turning. I haven't felt the same since. For these flights, I did talk to my doctor and the got script. It got rid of all the anxiety!
Becky
I saw you posted about F-14s. I live by Point Mugu Air Station and we see F-15s, F-18s (I can't really tell them all apart) fly overhead all the time. I've thought of taking my son to the airshow, but I think it would be too loud for him!
I hope you can stay put and not fly for awhile! Take care, Karin
Gale, I forgot the olive oil! 1 tbs cold pressed olive oil!
Pip the Moron!
Becky and all - more later! I have an appt with Dr. L today and want to go over diet stuff with him.
OH, Pip-- I need to tell you-- I got more allery tests back yesterday. Low and behold, a different lab, using different methods, with much the same results: kiwi, brazil nut, yeast, egg, etc. Makes me think there is something to this allergy testing. But I had SO many more tests done this time. It's very interesting. And I have an extreme reaction to casein. Let me know when you are back from Dr. L. Maybe I should start another allergy thread...
Take care, Karin
Hey Karin - I'm back!!! I was going to call you anyway after the baby was in bed. A real phone call! LOL
Becky - (and all)
I guess I understand how the stress could make you flare...but if you killed enough of the buggers that shouldn't happen, get my drift? Were you ill a long time before you found AP? Not trying to be confrontational - just trying to figure this out.
Pip