Minocycline - Lupus - Hepatitis ....is there a connection??

[Guest guest]

Hi there,

I don't believe that this topic has been addressed. I've done a

couple of searches and only found two people who mentioned symptoms

similar to mine, but no one outright bringing up this possible

connection so here I am!

I'm new to this group so I'll introduce myself. My name is Aimee and

I was diagnosed with cea a little over a year ago and have been

taking minocycline. I must say, the results on my skin were great!

Totally clear - it felt so good to reclaim my skin.

When I started on the minocycline, I initially took it 3 times a day

but throughout the year I have tapered it down to one dose every

couple of weeks, which has worked well.

Four months ago I became very ill and the illness has come and gone

in waves since then. I initially thought it was just a bug that I

couldn't get rid of. Every other week I would get this strange fever -

just the fever, no sore throat or sinus problems. After a couple of

days, or a week I would feel almost normal but never quite right.

After about a month and a half of this on and off fever, I started to

get joint pain mostly in my hands and my feet. This started to ring

bells for me because I had been diagnosed with Reiter's Syndrome

in '96 and one of the symptoms of this was arthritis.

I made an appointment with a Rheumatologist about the

arthritis/Reiter's. He had me do a bunch of tests including a liver

panel. The tests came back that I had some high AST and ALT levels

(not sure exactly what those are), which were a signal of some sort

of liver damage.

I went back and had a Hepatitis work up, and thankfully I did not

have any of the Hepatitis A, B, or C. My rheumatologist thought

perhaps from my high cholesterol (314) that I might have fatty liver

and suggested a low-fat diet and lose some weight (sure, no

problem ) and come back in three months to check my liver again.

Well, the last time I had the fever/joint/fatigue (did I mention the

fatigue - that is reeeeeally bad as well) I noticed that I had taken

my minocycline on a Friday night, then when I woke I the following

morning I had all my weird symptoms (fever, etc.) which I thought

were connected to Reiter's.

Now, last Thursday night again I took my minocycline and Friday

morning I was in a lot of pain with the whole fever, etc. Something

finally made me check on minocycline over the Internet.

After doing some searching I've found several articles documenting

cases where minocycline can actually induce Lupus-like symptoms as

well as hepatitis.

Sorry for the long-winded explanation. I don't believe that these

symptoms are common for most patients using minocycline, but

apparently they do exist.

My question to everyone is if you have been on minocycline did you

ever experience similar symptoms? The lupus-like symptoms I've

experienced include:

- joint pain (hands and feet)

- myalgias which are muscle pain/aches (specifically my muscles

located between my elbow and shoulder)

- fatigue

- fever

- headache

- cold hands/feet (my feet have always been cold, but not THIS cold.

Also my hands were so cold Sunday night that my fingers were actually

purple.)

If anyone can give me some more info on this possible

minocycline/lupus/hepatits connection I would appreciate it.

Here are the websites I have seen discuss the issue:

http://www.nanay.com/MEDICAL%20NEWS/English%20Edition/March-April%

202001/Minocycline%20and%20Lupus.htm

http://www.infotech.demon.co.uk/Mino.htm

http://www.uklupus.co.uk/mino.html

One study: http://archinte.ama-

assn.org/issues/v159n5/abs/ioi80305.html

Any other sources of info would be greatly appreciated!!!

Also, what alternatives exist to minocycline in treating cea? I

hate to give up minocycline because it has worked so well with my

cea, but considering the liver damage I don't think I have much

of a choice.

Thanks to everyone in advance,

Aimee

[Guest guest]

Hi there,

I don't believe that this topic has been addressed. I've done a

couple of searches and only found two people who mentioned symptoms

similar to mine, but no one outright bringing up this possible

connection so here I am!

I'm new to this group so I'll introduce myself. My name is Aimee and

I was diagnosed with cea a little over a year ago and have been

taking minocycline. I must say, the results on my skin were great!

Totally clear - it felt so good to reclaim my skin.

When I started on the minocycline, I initially took it 3 times a day

but throughout the year I have tapered it down to one dose every

couple of weeks, which has worked well.

Four months ago I became very ill and the illness has come and gone

in waves since then. I initially thought it was just a bug that I

couldn't get rid of. Every other week I would get this strange fever -

just the fever, no sore throat or sinus problems. After a couple of

days, or a week I would feel almost normal but never quite right.

After about a month and a half of this on and off fever, I started to

get joint pain mostly in my hands and my feet. This started to ring

bells for me because I had been diagnosed with Reiter's Syndrome

in '96 and one of the symptoms of this was arthritis.

I made an appointment with a Rheumatologist about the

arthritis/Reiter's. He had me do a bunch of tests including a liver

panel. The tests came back that I had some high AST and ALT levels

(not sure exactly what those are), which were a signal of some sort

of liver damage.

I went back and had a Hepatitis work up, and thankfully I did not

have any of the Hepatitis A, B, or C. My rheumatologist thought

perhaps from my high cholesterol (314) that I might have fatty liver

and suggested a low-fat diet and lose some weight (sure, no

problem ) and come back in three months to check my liver again.

Well, the last time I had the fever/joint/fatigue (did I mention the

fatigue - that is reeeeeally bad as well) I noticed that I had taken

my minocycline on a Friday night, then when I woke I the following

morning I had all my weird symptoms (fever, etc.) which I thought

were connected to Reiter's.

Now, last Thursday night again I took my minocycline and Friday

morning I was in a lot of pain with the whole fever, etc. Something

finally made me check on minocycline over the Internet.

After doing some searching I've found several articles documenting

cases where minocycline can actually induce Lupus-like symptoms as

well as hepatitis.

Sorry for the long-winded explanation. I don't believe that these

symptoms are common for most patients using minocycline, but

apparently they do exist.

My question to everyone is if you have been on minocycline did you

ever experience similar symptoms? The lupus-like symptoms I've

experienced include:

- joint pain (hands and feet)

- myalgias which are muscle pain/aches (specifically my muscles

located between my elbow and shoulder)

- fatigue

- fever

- headache

- cold hands/feet (my feet have always been cold, but not THIS cold.

Also my hands were so cold Sunday night that my fingers were actually

purple.)

If anyone can give me some more info on this possible

minocycline/lupus/hepatits connection I would appreciate it.

Here are the websites I have seen discuss the issue:

http://www.nanay.com/MEDICAL%20NEWS/English%20Edition/March-April%

202001/Minocycline%20and%20Lupus.htm

http://www.infotech.demon.co.uk/Mino.htm

http://www.uklupus.co.uk/mino.html

One study: http://archinte.ama-

assn.org/issues/v159n5/abs/ioi80305.html

Any other sources of info would be greatly appreciated!!!

Also, what alternatives exist to minocycline in treating cea? I

hate to give up minocycline because it has worked so well with my

cea, but considering the liver damage I don't think I have much

of a choice.

Thanks to everyone in advance,

Aimee

[Guest guest]

Aimee, presumably your rheumatologist ran the tests to rule out drug-

induced lupus. Assuming so, then what you're describing sounds like

some kind of hypersensitivity/serum sickness/immune reaction; you're

right, it's not common, but not all that unusual either.

Confirm all this with your prescribing physician -- you're not my

patient and I'm not your doctor, I hang out here because I also have

rosacea, and as an internal medicine-trained emergency physician I

try to help out with medical questions when I can. So don't listen to

me -- listen to your doctor!

But typically, with symptoms as you described, the medication is

stopped immediately then any abnormal tests are repeated after

several months to document return of normal function, and clinch the

diagnosis. Rechallenging your body with the drug is not a good idea.

Elevated transaminases is not necessarily permanent liver damage, it

may just be inflammation from the drug-induced immune reaction. If

your transaminases remain elevated after a time, then it's not from

the minocycline, and that will need further investigation.

Your prescribing physician should be aware of other antibiotics to

help your rosacea. I included some references in a post I wrote here

about 2 months ago, if you physician isn't familiar with alternatives

(unlikely but it happens) and would like documentation. I hope you

can find it; if you have trouble at Yahoo's site try clicking on one

of my posts on eScribe (http://www.escribe.com/health/rosacea-

support/), and from there access the rest of my posts, then scan down

the list for a subject related to antibiotics.

Good luck! Let us know what happens.

Marjorie

Marjorie Lazoff, MD

> Hi there,

>

> I don't believe that this topic has been addressed. I've done a

> couple of searches and only found two people who mentioned symptoms

> similar to mine, but no one outright bringing up this possible

> connection so here I am!

>

> I'm new to this group so I'll introduce myself. My name is Aimee

and

> I was diagnosed with cea a little over a year ago and have been

> taking minocycline. I must say, the results on my skin were great!

> Totally clear - it felt so good to reclaim my skin.

>

> When I started on the minocycline, I initially took it 3 times a

day

> but throughout the year I have tapered it down to one dose every

> couple of weeks, which has worked well.

>

> Four months ago I became very ill and the illness has come and gone

> in waves since then. I initially thought it was just a bug that I

> couldn't get rid of. Every other week I would get this strange

fever -

> just the fever, no sore throat or sinus problems. After a couple

of

> days, or a week I would feel almost normal but never quite right.

>

> After about a month and a half of this on and off fever, I started

to

> get joint pain mostly in my hands and my feet. This started to ring

> bells for me because I had been diagnosed with Reiter's Syndrome

> in '96 and one of the symptoms of this was arthritis.

>

> I made an appointment with a Rheumatologist about the

> arthritis/Reiter's. He had me do a bunch of tests including a liver

> panel. The tests came back that I had some high AST and ALT levels

> (not sure exactly what those are), which were a signal of some sort

> of liver damage.

>

> I went back and had a Hepatitis work up, and thankfully I did not

> have any of the Hepatitis A, B, or C. My rheumatologist thought

> perhaps from my high cholesterol (314) that I might have fatty

liver

> and suggested a low-fat diet and lose some weight (sure, no

> problem ) and come back in three months to check my liver again.

>

> Well, the last time I had the fever/joint/fatigue (did I mention

the

> fatigue - that is reeeeeally bad as well) I noticed that I had

taken

> my minocycline on a Friday night, then when I woke I the following

> morning I had all my weird symptoms (fever, etc.) which I thought

> were connected to Reiter's.

>

> Now, last Thursday night again I took my minocycline and Friday

> morning I was in a lot of pain with the whole fever, etc. Something

> finally made me check on minocycline over the Internet.

>

> After doing some searching I've found several articles documenting

> cases where minocycline can actually induce Lupus-like symptoms as

> well as hepatitis.

>

> Sorry for the long-winded explanation. I don't believe that these

> symptoms are common for most patients using minocycline, but

> apparently they do exist.

>

> My question to everyone is if you have been on minocycline did you

> ever experience similar symptoms? The lupus-like symptoms I've

> experienced include:

>

> - joint pain (hands and feet)

> - myalgias which are muscle pain/aches (specifically my muscles

> located between my elbow and shoulder)

> - fatigue

> - fever

> - headache

> - cold hands/feet (my feet have always been cold, but not THIS

cold.

> Also my hands were so cold Sunday night that my fingers were

actually

> purple.)

>

> If anyone can give me some more info on this possible

> minocycline/lupus/hepatits connection I would appreciate it.

>

> Here are the websites I have seen discuss the issue:

>

> http://www.nanay.com/MEDICAL%20NEWS/English%20Edition/March-April%

> 202001/Minocycline%20and%20Lupus.htm

>

> http://www.infotech.demon.co.uk/Mino.htm

>

> http://www.uklupus.co.uk/mino.html

>

> One study: http://archinte.ama-

> assn.org/issues/v159n5/abs/ioi80305.html

>

>

> Any other sources of info would be greatly appreciated!!!

>

> Also, what alternatives exist to minocycline in treating cea? I

> hate to give up minocycline because it has worked so well with my

> cea, but considering the liver damage I don't think I have much

> of a choice.

>

> Thanks to everyone in advance,

> Aimee

[Guest guest]

Aimee, presumably your rheumatologist ran the tests to rule out drug-

induced lupus. Assuming so, then what you're describing sounds like

some kind of hypersensitivity/serum sickness/immune reaction; you're

right, it's not common, but not all that unusual either.

Confirm all this with your prescribing physician -- you're not my

patient and I'm not your doctor, I hang out here because I also have

rosacea, and as an internal medicine-trained emergency physician I

try to help out with medical questions when I can. So don't listen to

me -- listen to your doctor!

But typically, with symptoms as you described, the medication is

stopped immediately then any abnormal tests are repeated after

several months to document return of normal function, and clinch the

diagnosis. Rechallenging your body with the drug is not a good idea.

Elevated transaminases is not necessarily permanent liver damage, it

may just be inflammation from the drug-induced immune reaction. If

your transaminases remain elevated after a time, then it's not from

the minocycline, and that will need further investigation.

Your prescribing physician should be aware of other antibiotics to

help your rosacea. I included some references in a post I wrote here

about 2 months ago, if you physician isn't familiar with alternatives

(unlikely but it happens) and would like documentation. I hope you

can find it; if you have trouble at Yahoo's site try clicking on one

of my posts on eScribe (http://www.escribe.com/health/rosacea-

support/), and from there access the rest of my posts, then scan down

the list for a subject related to antibiotics.

Good luck! Let us know what happens.

Marjorie

Marjorie Lazoff, MD

> Hi there,

>

> I don't believe that this topic has been addressed. I've done a

> couple of searches and only found two people who mentioned symptoms

> similar to mine, but no one outright bringing up this possible

> connection so here I am!

>

> I'm new to this group so I'll introduce myself. My name is Aimee

and

> I was diagnosed with cea a little over a year ago and have been

> taking minocycline. I must say, the results on my skin were great!

> Totally clear - it felt so good to reclaim my skin.

>

> When I started on the minocycline, I initially took it 3 times a

day

> but throughout the year I have tapered it down to one dose every

> couple of weeks, which has worked well.

>

> Four months ago I became very ill and the illness has come and gone

> in waves since then. I initially thought it was just a bug that I

> couldn't get rid of. Every other week I would get this strange

fever -

> just the fever, no sore throat or sinus problems. After a couple

of

> days, or a week I would feel almost normal but never quite right.

>

> After about a month and a half of this on and off fever, I started

to

> get joint pain mostly in my hands and my feet. This started to ring

> bells for me because I had been diagnosed with Reiter's Syndrome

> in '96 and one of the symptoms of this was arthritis.

>

> I made an appointment with a Rheumatologist about the

> arthritis/Reiter's. He had me do a bunch of tests including a liver

> panel. The tests came back that I had some high AST and ALT levels

> (not sure exactly what those are), which were a signal of some sort

> of liver damage.

>

> I went back and had a Hepatitis work up, and thankfully I did not

> have any of the Hepatitis A, B, or C. My rheumatologist thought

> perhaps from my high cholesterol (314) that I might have fatty

liver

> and suggested a low-fat diet and lose some weight (sure, no

> problem ) and come back in three months to check my liver again.

>

> Well, the last time I had the fever/joint/fatigue (did I mention

the

> fatigue - that is reeeeeally bad as well) I noticed that I had

taken

> my minocycline on a Friday night, then when I woke I the following

> morning I had all my weird symptoms (fever, etc.) which I thought

> were connected to Reiter's.

>

> Now, last Thursday night again I took my minocycline and Friday

> morning I was in a lot of pain with the whole fever, etc. Something

> finally made me check on minocycline over the Internet.

>

> After doing some searching I've found several articles documenting

> cases where minocycline can actually induce Lupus-like symptoms as

> well as hepatitis.

>

> Sorry for the long-winded explanation. I don't believe that these

> symptoms are common for most patients using minocycline, but

> apparently they do exist.

>

> My question to everyone is if you have been on minocycline did you

> ever experience similar symptoms? The lupus-like symptoms I've

> experienced include:

>

> - joint pain (hands and feet)

> - myalgias which are muscle pain/aches (specifically my muscles

> located between my elbow and shoulder)

> - fatigue

> - fever

> - headache

> - cold hands/feet (my feet have always been cold, but not THIS

cold.

> Also my hands were so cold Sunday night that my fingers were

actually

> purple.)

>

> If anyone can give me some more info on this possible

> minocycline/lupus/hepatits connection I would appreciate it.

>

> Here are the websites I have seen discuss the issue:

>

> http://www.nanay.com/MEDICAL%20NEWS/English%20Edition/March-April%

> 202001/Minocycline%20and%20Lupus.htm

>

> http://www.infotech.demon.co.uk/Mino.htm

>

> http://www.uklupus.co.uk/mino.html

>

> One study: http://archinte.ama-

> assn.org/issues/v159n5/abs/ioi80305.html

>

>

> Any other sources of info would be greatly appreciated!!!

>

> Also, what alternatives exist to minocycline in treating cea? I

> hate to give up minocycline because it has worked so well with my

> cea, but considering the liver damage I don't think I have much

> of a choice.

>

> Thanks to everyone in advance,

> Aimee