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Old 02-09-2009, 03:17 PM #1
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Default Question: safe to combine Tysabri with minocycline?

I am taking Tysabri and will go for #8 soon. I have developed adult acne in the past year (ughhh! never had it as a kid). The dermatologist put me on minocycline. I've been on minocycline for 4 months now and my face is clear. How nice.

But recently it occured to me that studies have been done using minocycline and doxycycline (tetracycline antibiotics) for treatment of MS. I believe they've used minocycline on its own and also in combo with Avonex. It seems to serve as an anti-inflammatory and has some effect on the immune system.

Does anyone know or think it is dangerous to be taking Tysabri with minocycline? In other words, Tysabri is supposed to be a monotherapy. If taken with minocycline (which some have used for MS) are you getting too much immunosuppression (and thereby putting yourself at greater risk for PML?). Or is minocycline just a generic psuedo-harmless antibiotic?

I asked my neurologist. She seemed wishy washy about it-no definitive answer. I wish I had another neuro I could consult with!!!!
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Old 02-09-2009, 03:49 PM #2
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Hi Natalie,

My neuro has been trying to talk me into minocycline for the last year, and today she rx'd it to me. I had an allergic reaction to tetracycline, and minocycline is apparently the same (or virtually). The reason she wants me on it is because I get lots of infections (of various kinds), and she thinks this could pre-empt infections that trigger my MS. I'm going to give it a shot, and see how it goes . . .

I've heard of a few people who've had infections/colds/illnesses while being on Tysabri, who were not given their usual infusion because they were sick. What I don't know is if this is just a precaution because they are already run down, or if it is because they often have to take other meds to take care of the illness.

I wouldn't have thought of antibiotics as conflicting with Tysabri, personally . . . but I am not a doctor and they should know best. What about calling Biogen...?

BTW, as you mentioned, minocycline is being used off-label for MS, and there are good anecdotal and preliminary results. The good news is that you might be getting an added benefit by using it . . . (so long as it doesn't conflict with Tysabri, of course).

Cherie
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Old 02-09-2009, 04:59 PM #3
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Default Contact the MSActiveSource folks

To contact a Patient Service Manager at Biogen Idec, call toll free: 1-800-456-2255 Monday-Friday, 8:30 AM to 8:00 PM (ET).


They are folks from the drug manufacturer and should be able to answer your question.
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Old 02-09-2009, 05:21 PM #4
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Quote:
Originally Posted by Natalie8 View Post
I am taking Tysabri and will go for #8 soon. I have developed adult acne in the past year (ughhh! never had it as a kid). The dermatologist put me on minocycline. I've been on minocycline for 4 months now and my face is clear. How nice.

But recently it occured to me that studies have been done using minocycline and doxycycline (tetracycline antibiotics) for treatment of MS. I believe they've used minocycline on its own and also in combo with Avonex. It seems to serve as an anti-inflammatory and has some effect on the immune system.

Does anyone know or think it is dangerous to be taking Tysabri with minocycline? In other words, Tysabri is supposed to be a monotherapy. If taken with minocycline (which some have used for MS) are you getting too much immunosuppression (and thereby putting yourself at greater risk for PML?). Or is minocycline just a generic psuedo-harmless antibiotic?

I asked my neurologist. She seemed wishy washy about it-no definitive answer. I wish I had another neuro I could consult with!!!!
Since it is being used as a long term therapy, I would call and ask them about it to get their take on it. I haven't heard any negative information on antibiotic use with Tysabri (I just finished the amoxicillin for the tooth) but in long term therapy, it might be a different story. Call them and ask : 1-800-456-2255 M-F 8:30 am-8:00pm EST
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Old 02-09-2009, 06:41 PM #5
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I thought about calling initially but my experience is that the people answering their phone lines are generally pretty clueless (answering questions by looking up answers in a preset database--something a monkey could almost do). Sure enough the person I spoke with gave set answers such as "their are no studies showing any interactions" and "we always defer to the treating neurologist" and "always tell your neurologist when you start a new drug.". I asked to be transfered to the research dept to speak with someone. He asked me if I was in the health field. When I said no he repeated his statement about checking with my neurologist. Erghhhhhh. It just frustrated me. Shared Solutions had no problem transfering me when I was having Weird reactions to Copaxone.
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Old 02-09-2009, 07:42 PM #6
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Yeah, figured that would be the response. They have a script that they are required to go by and they are not allowed to vary from it, no matter what, but it was worth a shot.

How about asking the pharmacist? Maybe they have something in their database?
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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Old 02-09-2009, 07:58 PM #7
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i think the safest thing to do is ask your tysabri dr or your neuro.
i would trust this Q to the MD's
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Old 02-10-2009, 12:34 AM #8
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RW-- Yeah, I guess they have a script they have to follow no matter what. I just wish I knew of another neurologist I could ask for another opinion.

Judy-- I asked my doc. and was unsatisfied with the answer unfortunately! She didn't really have an answer, only said that maybe I should go off of it to be safe. I probably will and find something else to take for acne. The other choice was birth control which isn't really on the top of my list.
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Old 02-10-2009, 02:29 AM #9
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Natalie, the person that seems to have studied minocycline the most on the MS forums is JackD. He seems to know a lot about what it does in MS, so you might want to try PM'ing him here.

Cherie
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Old 02-11-2009, 01:45 AM #10
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Thanks for the referral Cherie!!!!
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