RE: HCQ Exeperiences - Patrice

[Guest guest]

Hi ……..I became acutely

ill 4 years ago. By acute, I mean literally, I was absolutely fine one

day & unable to walk the next & this was at the ripe age of 41.

Getting out of bed & getting dressed caused extreme pain. I knew I

wasn’t dealing with the achiness of the regular flu. Every single

joint in my body was about 10X it’s normal size and with every movement,

there was so much crepitus, it could be heard across the room. I

was in BAD shape. At first they thought I had parvo virus & then my

ANA came back 1:320, a week later 1:640 and a week later too high to read. I

was literally bed bound for nearly 5-6 months. Of course, mainstream’s

answer was steroids and lots of them to the point where I was nearly induced

into a psychotic state. I had no presence of mind how to advocate for

myself. The only thing I knew to do was go to Mayo Clinic. I do

give Mayo credit for diagnosing my Prednisone induced psychosis. THey

also started me on a loading dose of HCQ at 800 mg per day. HCQ

takes a very long time to reach therapeutic levels (some literature suggests up

to 18 months) that they wanted to get me therapeutic as fast as possible.

I did have baseline vision testing (as HCQ RARELY causes retinal toxicity)

& all vision tests since then have been absolutely normal. In fact,

it’s hard to find an Opthamologist less than 60 years old that has ever

seen HCQ retinal associated toxicity b/c of them using hydroxycloroquine vs.

cloroquine (much more likely to cause problems).

Within several weeks, the pain became much

more bearable. And with each passing month, it just got better and

better. I eventually weaned from steroids all together without difficulty.

Subsequent follow ups at Mayo have always been met with the advice of “whatever

you do, don’t go off of the HCQ.” They claim that people

start to feel so much better with the HCQ that they think they don’t need

it anymore. Going off of it eventually throws them in the flare of their

life. HCQ is considered an acceptable DMARD by the Rheumatologic people

& they dish it out like candy. Ironically, they know it works, but I’m

not sure many of them are scientifically curious enough to figure out

why. They literally stumbled upon it by accident by military personnel

reporting improvement in their rheumatologic conditions while on it. It

also helps with energy.

I was officially diagnosed with Mixed

Connective Tissue disease at Mayo Clinic as evidenced by a very high ANA titer

and an extractable nuclear antigen called anti RNP that is very specific for

MCTD. MCTD was once thought of as a disease you got diagnosed with when

something rheumatic was going on, but the doctors don’t know what.

Now, they realize it is it’s own disease entity with very hallmark

features. Mine are joint pain (although well controlled with HCQ), Raynauds

(not well controlled) & unfortunately most people do develop complications

of esophageal dysmotility issues and pulmonary fibrosis. It’s

sometimes referred to as lupus/scleroderma overlap syndrome.

While in my heart I feel like I’m

accurately diagnosed, I am also working with a very progressive Infectious Dz. Dr.

who is exploring every angle with me. My IGENEX test came back very

strikingly positive with many positive bands strongly positive. However,

it is my understanding that some of the rheumatological antibodies can cross

react with these bands causing false positives. Barb, I’d be

interested in your take on this.

So, I am hitting this with a freight train

by taking HCQ, Diflucan 200mg daily, Minocin 200 mg. daily AND Vantin twice

daily. I figure if I’m going to herx, I might as well go full

throttle ahead. So far, no herx. None to speak of anyway.

Sometimes it’s hard to distinguish the disease from a “herx.”

My ID Dr.

is one of the ones experimenting with the Diflucan tx. for Lyme. Even

though I’m not convinced I have Lyme, I figure that there probably is

some sort of pathogen responsible for my illness & so I might benefit

regardless of whether we’re targeting the right pathogen or not. I’m

about day 32 or 33 into the Diflucan. My ID Dr. wants at least 2 months,

probably more.

It’s all a crap shoot I guess.

I agree with Barb that you certainly

should be working with a Dr. if you’re going to consider HCQ, but the way

the Rheumatologists dispense it like candy, there’s enough data out there

to substantiate that it’s pretty safe and effective therapy. I don’t

ever intend on stopping it.

From: Schaafsma

[mailto:compucruz@...]

Sent: Tuesday, March 22, 2005 4:59

PM

infections

Subject:

[infections] HCQ Exeperiences - Patrice

Thanks for that feedback, Patrice! When you get a

chance, maybe you

can tell us a little more specifically about how

its been helpful.

It would be great to hear from anyone on the list

who's used this,

with good, bad or indifferent results.

Barb's posted quite a bit here, and in the first I

& I, about HCQ

potentiating antibiotics and now, more recently,

Diflucan as well.

I'm also interested in therapeutic effects of HCQ

on inflammatory

immune responses - it's a potent immune modulator

and seems to help

some patients in this respect as well.

Cheers,

>

> I can't do it quickly- as other than my

initial stint with Doxy,

> it was combined with almost every thing I

took (or was in my

tissues

> from preloading).

> Barb

>

>

>

>

> Barb, what is your opinion on how related HCQ

is to quinolone

antibiotics? I

> am still really scared of HCQ, even though I

let my son go on it

with

> Zithromax. I would like to do something

similar myself, however I

am one of

> the ones who reacted badly to Samento in the

tendons. I have never

taken a

> fluoroquinolone antibiotic, and probably

never will. My son's LLMD

and our

> pharmacist told us that HCQ is quite

different from the quinolone

> antibiotics and doesn't have the same side

effects, but I'm still

worried

> and watching my son carefully (making him

nervous with

inquisitions about

> his reactions!).

>

> - Kate D.