Question:
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..
Response:
<ruby…@webtv.net> wrote in message
<snip> I’m a Lupie..whose not aware of what the INR rate means.. </snip> RE: PT and INR Formally known as: Prothrombin Time and International Normalized Ratio Why is it done? To check how well blood-thinning medications (anti-coagulants) are working to prevent blood clots; to help detect and diagnose a bleeding disorder. When does your doctor ask for it? If you are taking an anti-coagulant drug or if your doctor suspects that you may have a bleeding disorder. HTH you out some! ALSO: <ruby…@webtv.net> wrote in message
<snip> My family are all out of states(in different states.. and… well, I’m depressing myself just writing this.. </snip> Don’t feel bad Ruby…. we are all feeling a lot of stress at this time of year… I think it is the pressures we feel about trying to be like all the ‘healthy’ relatives and friends we see shopping, entertaining, baking, cleaning and doing all the other holiday activities, never mind having ‘fun’ and enjoying themselves through visits and get togethers with each other! (I too, can feel left out and even alone even when in a group situation!) It makes it so hard when you are sick chronically and can’t commit to dates or engagements ahead of time…. also spontaneity is out of the question cause it doesn’t always work…. so you live day by day and at times hour by hour…. I find holidays very difficult cause all year I am thinking that the rest of the family members get it and then when it comes down to the crunch? well, nope they sure do not understand the full implication of living with an illness or in my husband’s case, living with a chronically ill wife. Life is so much different for all of us than for our extended families and we just have to do what we can and try to forget about being like everyone else. Just know that we, the members of this group and other lupus patients, DO understand and that we are here as sounding boards whenever you need to rant or cry about things that upset you…. questions can be answered and problems can be listened to and at times solved here as well. Good luck to you, and happy holiday wishes to your household from mine! hugs from Shelagh
Response:
In article <EdFwd.510061$Pl.310850@pd7tw1no>, Shelagh <n…@myob.bc.ca> wrote [ > to help detect and diagnose a bleeding disorder.
I haven't heard lupus described in such mild terms for some time... -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
Response:
On Thu, 16 Dec 2004 05:51:52 +0000, Michael Roeper wrote (in article <Yn9wd.268332$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. – Hide quoted text — Show quoted text ->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" <herbwormw…@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.
Response:
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" <herbwormw…@lycos.co.uk> wrote in message
news:0001HW.BDE773B4000D830EF02845B0@News.Individual.NET… – Hide quoted text — Show quoted text -> 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" <herbwormw…@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.
Response:
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
Response:
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" <herbwormw…@lycos.co.uk> wrote in message
news:0001HW.BDE472A0006648E9F02845B0@News.Individual.NET… – Hide quoted text — Show quoted text -> 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.
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