Lupus Support - hughes syndrome ake antiphospholipid syndrome and dental work

Author

hughes syndrome ake antiphospholipid syndrome and dental work

herbwormwood

2004-12-16, 9:24 am

Hi,
I have regular dental work to treat gum problems and my dentists are
insisting my INR must be lower than 2.5 for them to treat me.
My consultant rheumatogist says my INR should be between 3 and 4.5 for me to
not have clots in my brain, I have antiphospholipid syndrome and lupus and
many CNS impairments through the years I was not having treatment for it. My
current treatment for the clots is warfarin and aspirin, it works well for
me when my INR is as it should be. My INR goes up and dpwn and usually I have
it tested weekly. Last dental work put tit down to 1.3.
Anyone have similar problems or advice on this please? I feel alone as no one
seems to realise there is a problem except me.

2004-12-16, 9:24 am

herbwormwood wrote:

> Last dental work put tit down to 1.3.

What else happened at or around that time? Were you prescribed antibiotics
before or after the dental work?
Many of us get antibiotics in the meat we eat.

Here's more to consider
http://www.fvleiden.org/ask/27.html
J

Michael Roeper

2004-12-16, 9:24 am

I've got Lupus and really high-titer antiphospholipid syndrome too. My
projected INR is 3.5 to 4.5 as I can throw clots at an INR of 2.0. When I
need any kind of surgery I wean off Coumadin for 2 to3 days while taking
Lovenox injections. They're expensive (about 70 bucks each, 2X a day) but I
have tons of em stored up from when I had insurance and they can
successfully operate on me with Lovenox in my system after the COumaden had
gone away. I then do the opposite after surgery, taking Lovenox injections
until my INR get's back up there with Coumaden. When my INR gets"unstable,"
it takes about 6 weeks of weekly testing (or even more often) till I get
stable again. My IGG titers are really, really high (over 300)

"herbwormwood" <herbwormwood@lycos.co.uk> wrote in message
news:0001HW.BDE472A0006648E9F02845B0@News.Individual.NET...
> Hi,
> I have regular dental work to treat gum problems and my dentists are
> insisting my INR must be lower than 2.5 for them to treat me.
> My consultant rheumatogist says my INR should be between 3 and 4.5 for me
to
> not have clots in my brain, I have antiphospholipid syndrome and lupus and
> many CNS impairments through the years I was not having treatment for it.
My
> current treatment for the clots is warfarin and aspirin, it works well
for
> me when my INR is as it should be. My INR goes up and dpwn and usually I
have
> it tested weekly. Last dental work put tit down to 1.3.
> Anyone have similar problems or advice on this please? I feel alone as no
one
> seems to realise there is a problem except me.
>
>

herbwormwood

2004-12-16, 11:10 am

On Tue, 14 Dec 2004 11:02:15 +0000, J wrote
(in article <41BEC837.225A1756@execulink.com> ):

> herbwormwood wrote:
>
>
> What else happened at or around that time? Were you prescribed antibiotics
> before or after the dental work?
> Many of us get antibiotics in the meat we eat.
>
> Here's more to consider
> http://www.fvleiden.org/ask/27.html
> J
>
>

I was told to stop warfarin for 2 days. Thats why it went down to 1.3.
Stopping warfarin is the issue I am upset about.
I don't eat any meat.

herbwormwood

2004-12-16, 7:11 pm

On Thu, 16 Dec 2004 05:51:52 +0000, Michael Roeper wrote
(in article <Yn9wd.268332$R05.68875@attbi_s53> ):
Sorry Micheal I don't understand all of your post, I assume it means you get
clots very easily?
Al I know is I have antiphospholipid syndrome and CNS lupus, and I need a lot
of warfarin (coumadin) to have an effect on my INR.
I am similar in that my INR will take weeks of testing and dose fiddling
before it stabilises. I was on a theraputic range of 2 to 3 at first but I
was still getting neurological symptoms, cognitive problems and fit like
attacks, which is why I now have range 3 to 4.5 and also aspirin. I undersand
the aspirin stops the platelets sticking together too?
I am planning to request some other sort of heparin style treatment before my
next dental work in March, but I have to see the doc first. Our NHS pays for
treatment here in UK but they will only pay if they are convinced it is
necessary so I may have to do some pushing.

>I I've got Lupus and really high-titer antiphospholipid syndrome too. My
> projected INR is 3.5 to 4.5 as I can throw clots at an INR of 2.0. When I
> need any kind of surgery I wean off Coumadin for 2 to3 days while taking
> Lovenox injections. They're expensive (about 70 bucks each, 2X a day) but I
> have tons of em stored up from when I had insurance and they can
> successfully operate on me with Lovenox in my system after the COumaden had
> gone away. I then do the opposite after surgery, taking Lovenox injections
> until my INR get's back up there with Coumaden. When my INR gets"unstable,"
> it takes about 6 weeks of weekly testing (or even more often) till I get
> stable again. My IGG titers are really, really high (over 300)
>
> "herbwormwood" <herbwormwood@lycos.co.uk> wrote in message
> news:0001HW.BDE472A0006648E9F02845B0@News.Individual.NET...
> to
> My
> for
> have
> one
>
>

Michael Roeper

2004-12-16, 7:11 pm

I don't know what part of my post you didn't understand.....Lovenox is
called "low weight" heparin. Kinda like "light beer," I would imagine.

Your situation sounds identical to mine.

"herbwormwood" <herbwormwood@lycos.co.uk> wrote in message
news:0001HW.BDE773B4000D830EF02845B0@News.Individual.NET...
> On Thu, 16 Dec 2004 05:51:52 +0000, Michael Roeper wrote
> (in article <Yn9wd.268332$R05.68875@attbi_s53> ):
> Sorry Micheal I don't understand all of your post, I assume it means you
get
> clots very easily?
> Al I know is I have antiphospholipid syndrome and CNS lupus, and I need a
lot
> of warfarin (coumadin) to have an effect on my INR.
> I am similar in that my INR will take weeks of testing and dose fiddling
> before it stabilises. I was on a theraputic range of 2 to 3 at first but I
> was still getting neurological symptoms, cognitive problems and fit like
> attacks, which is why I now have range 3 to 4.5 and also aspirin. I
undersand
> the aspirin stops the platelets sticking together too?
> I am planning to request some other sort of heparin style treatment before
my
> next dental work in March, but I have to see the doc first. Our NHS pays
for
> treatment here in UK but they will only pay if they are convinced it is
> necessary so I may have to do some pushing.
>
>
>
>
I[vbcol=seagreen]
but I[vbcol=seagreen]
had[vbcol=seagreen]
injections[vbcol=seagreen]
gets"unstable,"[vbcol=seagreen]
me[vbcol=seagreen]
and[vbcol=seagreen]
it.[vbcol=seagreen]
I[vbcol=seagreen]
no[vbcol=seagreen]
>
>

ruby2sd@webtv.net

2004-12-17, 2:08 am

I'm a Lupie..whose not aware of what the INR rate means..
Am in a huge flare-up now.(since long-postponed Root-Canal work 6 wks.
ago.) and wonderig whether it was idiotic to have gone since I'd not
been in a bad flare-up for a year..and hadn't been able to get to a
Rheumatologist bcs of trying to avoid knee-replacement so stayed home to
not stress my knee...
Have been taking antibiotics 4 days a week.. bcs of Chronic Lyme
Disease, Fibro and the tooth infection..
Now find I can't tolerate Darvocet, anmore so just take Motin for the
pain, but jut the day-to-day existing(waiting for food
deliveries,repairmen) etc.. seems to prevent me from tracking down A
Rheumy who will actually see me on a regular basis.. The one I had years
ago left me on Prednisone for 3 yrs.. others have said " Well, you,ve
had Lupus a long time.. so not much we can do." or they don't like my
insurance..

I'm about to give up.. have to take care of my dog's needs and keeping
the house and bills paid is just about doing me in..

Any ideas? I called the Lupus support group in my area (next county) for
a ride to a mtg.. and there isn't any...

Thanks for any suggestions..and believe me, I've tried help from church,
Seniors and civic groups..

My family are all out of states(in different states.. and... well, I'm
depressing myself just writing this..

r..

herbwormwood

2004-12-17, 11:09 am

On Thu, 16 Dec 2004 22:09:49 +0000, Michael Roeper wrote
(in article <NInwd.205632$V41.140493@attbi_s52> ):

> I don't know what part of my post you didn't understand.....Lovenox is
> called "low weight" heparin. Kinda like "light beer," I would imagine.

that clears that one up.
What do you mean by "throw clots"?
"What do you mean by "IGG titers" and how do you find this out?
I have not looked very deeply into the test results. They told me I had APLS
in 1995 and thats all I know really. Have read loads on lupis since I was
diagnosed many years back, I have not read so much on APLS but I am on the
yahoo group and learned a fair bit there, plus from one or 2 leaflets
publihed by UK charities.
I am supposed to talk to to a dr on the phone later today about the dental
work.

>
> Your situation sounds identical to mine.
>
> "herbwormwood" <herbwormwood@lycos.co.uk> wrote in message
> news:0001HW.BDE773B4000D830EF02845B0@News.Individual.NET...
> get
> lot
> undersand
> my
> for
> I
> but I
> had
> injections
> gets"unstable,"
> me
> and
> it.
> I
> no
>
>