Herx or drug alergy

[Guest guest]

Dear JH,

I, too, gained almost complete relief of my joint symptoms after only three

weeks

on minocycline. (I was diagnosed with sero-positive RA after a year of joint

swelling and pain.) The mino caused increased swelling and pain for about ten

days, then the symptoms nearly disappeared altogether. After three weeks

I began to be ill with a swollen throat, esophageal reflux, fever (100 dgs.),

swollen forearm muscles, and some chest pain when I took a deep breath.

Rheumotology wouldn't see me at Kaiser and two different internal medicine

doctors hadn't a clue. One gave me acid blockers, and the other said it was

flu and told me to drink a lot of water. I called the second doctor again

because

I had by then been sick for more than three weeks, and still he said, " Drink

more

water--you'll be fine. " Two days later my fingernails had blue stripes on

them

and I couldn't even keep my balance. Now they thought it was blood poisoning

and put me in the hospital on antibiotic IV's. They were never able to

culture bacteria, so they tentatively are saying it is vasculitis. They

think it was probably not a minocycline reaction. I suffered a stroke as

part of this episode

and lost part of the vision in my left eye. The balance is getting better,

but my legs are weak. I was on 100 mgs of mino for the two weeks before this

happened.

(I had reduced it from 200 when symptoms started.) Now my rheumotologist

wants me on methotrexate, instead of minocycline--he says not because it is

likely that it was a minocycline reaction, but because the minocycline failed

to

prevent the symptoms and the stroke. (This is assuming that it was some kind

of vasulitis that caused it all.) I am beginning to get a little of the

arthritis swelling back, which I had gotten used to being free of after two

months without

it. I don't know what to think or what to do either. I am on predniisone 10

mgs.

for now, but have to switch to something else and wean off the pred.

I wonder if any of my symptoms sound like yours. Are you running a

temperature? You may want to switch to doxycycline because reactions are less

common with it.

This letter may raise more questions than it answers, but my experience is

relevant to your inquiry, so I'm just laying out what happened. Take

care--don't push it to far, okay?

Ann Hartley

[Guest guest]

,

Glad to hear you're still feeling better, that was pretty scary the

other day. My bet is that you did have some kind of a herx,

particularly since you hurt in new areas -- pretty common for a herx.

Also, increased fatigue and depression are pretty common with a herx, as

are sleep problems. I was pretty concerned, though, about the shortness

of breath you were experiencing so I think a few opinions for the rest

of this learned bunch (particularly Ethel and if they're

listening) would be beneficial and I'd definitely ease into taking mino

if you try it again. Starting slow and gradually increasing your dosage

is a better way of avoiding the nasty side effects and seeing just how

much your particular system can tolerate. And if you just can't

tolerate mino, there are other antibiotics that work so you'll still

have options. Hope you keep feeling better.

Hugs,

a Peden

jhall@... wrote:

>

> ...When I went to see him about the other pain, he suggested that we

> treat both with the same, using 100mg minocycline, twice daily. I

> started this last Friday, and began to feel worse over the weekend

> and by Monday was really sick. I cannot really describe how I felt,

> but was ready to call 911 by mid afternoon Monday but held off until

> my wife helped me to the Dr (thanks in part to support from a).

> He said it was a drug reaction and switched me to septra. After a

> session of feeling pressure on my chest, and getting some heart

> palpitations, the symptoms eased and by the next day I was well on my

> way to recovery. Now when I look back, I think what I felt was

> extreme symptoms of the fatigue (physical and mental) that I have on

> a lesser scale day to day. There was a lot of emotional termoil as

> well. There was no flare of the joint pain, however there was

> considerable pain in other pressure points like ribs, that kept me

> extremely uncomfortable. I went almost completely without sleep.

>

> What I need to know was whether I was experiencing a reaction to the

> drug itself, or if it was a massive Herx...

[Guest guest]

a's got it right here . You need to start minocycline at only about

50mg on Monday Wednesday and Friday and see if you tolerate that dose. The 200mg

of minocycline per day was far too high a dose, too soon. Some people can

tolerate

it but others react the way you did.

Chris.

>,

>Glad to hear you're still feeling better, that was pretty scary the

>other day. My bet is that you did have some kind of a herx,

>particularly since you hurt in new areas -- pretty common for a herx.

>Also, increased fatigue and depression are pretty common with a herx, as

>are sleep problems. I was pretty concerned, though, about the shortness

>of breath you were experiencing so I think a few opinions for the rest

>of this learned bunch (particularly Ethel and if they're

>listening) would be beneficial and I'd definitely ease into taking mino

>if you try it again. Starting slow and gradually increasing your dosage

>is a better way of avoiding the nasty side effects and seeing just how

>much your particular system can tolerate. And if you just can't

>tolerate mino, there are other antibiotics that work so you'll still

>have options. Hope you keep feeling better.

>Hugs,

>a Peden

>

>jhall@... wrote:

>>

>> ...When I went to see him about the other pain, he suggested that we

>> treat both with the same, using 100mg minocycline, twice daily. I

>> started this last Friday, and began to feel worse over the weekend

>> and by Monday was really sick. I cannot really describe how I felt,

>> but was ready to call 911 by mid afternoon Monday but held off until

>> my wife helped me to the Dr (thanks in part to support from a).

>> He said it was a drug reaction and switched me to septra. After a

>> session of feeling pressure on my chest, and getting some heart

>> palpitations, the symptoms eased and by the next day I was well on my

>> way to recovery. Now when I look back, I think what I felt was

>> extreme symptoms of the fatigue (physical and mental) that I have on

>> a lesser scale day to day. There was a lot of emotional termoil as

>> well. There was no flare of the joint pain, however there was

>> considerable pain in other pressure points like ribs, that kept me

>> extremely uncomfortable. I went almost completely without sleep.

>>

>> What I need to know was whether I was experiencing a reaction to the

>> drug itself, or if it was a massive Herx...

>

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>

[Guest guest]

Just so you know, ended up taking such a high dose right off the

bat because his doctor prescribed it to deal with another infection,

hence the high dose and the dilemma because of the subsequent reaction.

Had he just been starting the AP without another infection requiring

treatment, I would have just suggested trying a reduced dose but didn't

feel I should suggest this when another infection needed treating. I'm

just glad he's doing better using a different antibiotic to treat his

infection and I'm also glad you agree that he should then try the mino

again but ease into it this time. It always makes me feel more

confident when I have your second opinion. :}

Hugs,

a Peden

Adlard wrote:

>

> a's got it right here . You need to start minocycline at only about

> 50mg on Monday Wednesday and Friday and see if you tolerate that dose. The

200mg

> of minocycline per day was far too high a dose, too soon. Some people can

tolerate

> it but others react the way you did.

>

> Chris.

>

[Guest guest]

Here's a letter Ann meant to send to the group:

Thanks, Gloria.

No, my blood pressure has always been too low, if anything. On the way

to

the hospital it was 85/59. Also my cholesterol readings are very good.

There

are no apparent risk factors for stroke. This is all very is very

mysterious. My rheumotologist has scheduled a meeting for me with all

five

rheumotologists in the department on May l0th. He wonders if they will

see

something that he has overlooked. Actually the blood testing, except for

attempts at culturing bacteria, have been very incomplete. (my opinion

from

what I have read on vasculitis-related internet sites) When this illness

began, I was taking grapefruit seed

extract, along with the minocycline. said he had also taken

grapefruit

seed extract, but earlier. I think people should avoid combining them,

at

the very least. I will refuse to go on methotrexate without more blood

tests

for lupus, vasculitis or antiphospholipid antibodies. I don't want to be

on

it just in case

I have something that they could possibly rule out with more blood

testing.

They have performed two echocardiograms and an MRI. The latter showed

the

brain lesion which affected my balance and probably accounts for the

weakness

in my legs. The eye damage is permanent, according to their

ophthalmologist.

It makes it hard to do crossword puzzles, mostly, or to read small print.

Still, I'm okay at the moment and back to mowing the lawn and putting new

roses in the garden. I transport the grandchildren to and from school

take

care of them

until a parent shows up to get them. I just want to out of limbo

regarding

diagnosis and treatment of everything. Actually, I would even like to

try

the minocycline again, carefully at a low dose. I can let be a

test-case first!

I know you are in similar limbo. I hope you can get yourself on a new

treatment regimen soon--maybe clindy and zithromax? I've been toying

with

the idea of a trip to California for better care after I make the switch

from

Kaiser to Blue Cross,

which I plan to do in October.

I was glad to note that you are reluctant to experiment with any

concoctions

you

don't know everything about, even teas. That way if you have problems,

you'll

have an easier time figuring out the cause.

Ann

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[Guest guest]

Well, I'm just not having any luck getting my update to post as part

of the thread, so here it is as a new posting. I tried 50mg of

minocycline on Friday and was no better or worse than any other day.

Will try MWF at that dose. Followup appointment this Monday. JH.

[Guest guest]

Dear JH (Is it ?)

I appreciate your keeping us posted on your retrial of the minocycline. You

probably were " Herxing " badly, but a Herx can be serious trouble if it is too

bad, or so I have read in my researching of the Herxheimer effect. I suspect

that you will probably be fine on a lower dose. I hope you have given

yourself enough time to completely recover from the last episode. Have you

looked up Herxheimer and

read in detail about it on various websites? I really hope this works out

without any horribly severe illness.

Ann