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Does your INR level affect the way you feel?
I have had APLS for several years, picked up after several miscarriages so was on aspirin and heparin for my last pregnancy and for 6 weeks after. After that just aspirin, plaquenil and other bits and pieces. I had a TIA just after Christmas so they thought maybe I should be on warfarin long term.
I have had APLS for several years, picked up after several miscarriages so was on aspirin and heparin for my last pregnancy and for 6 weeks after. After that just aspirin, plaquenil and other bits and pieces. I had a TIA just after Christmas so they thought maybe I should be on warfarin long term.
tassie
in
Hughes Syndrome APS Forum
12 years ago
Antibiotics
For clarification the antibiotics I canot take are, Penicilan, eurthromicin, doxicyclin, tetracyclin,
septrin
and ampercilin.
For clarification the antibiotics I canot take are, Penicilan, eurthromicin, doxicyclin, tetracyclin,
septrin
and ampercilin.
margaretjo
in
Hughes Syndrome APS Forum
12 years ago
INRS up and down, weekly tests since April!
Well I am just about fed up of having to attend the Haem every week, I know that they have to keep an eye on me, but I feel that nothing is in control here. I do not know whether anyone else has been prescribed 0.5mg, but I have not used these since starting Warfarin, all that happens is either 4mg
Well I am just about fed up of having to attend the Haem every week, I know that they have to keep an eye on me, but I feel that nothing is in control here. I do not know whether anyone else has been prescribed 0.5mg, but I have not used these since starting Warfarin, all that happens is either 4mg
daisy11
in
Hughes Syndrome APS Forum
12 years ago
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Suffering at the moment!!
Does anybody else get these episodes where everything hurts, and you cant sleep with restless legs and muscle pain, am not too sure if its the raynauds or the aps, but my eye is hurting again,my left side aches and i get throbbing in my muscles and the jolting/twitching in the muscles wakes me up - then
Does anybody else get these episodes where everything hurts, and you cant sleep with restless legs and muscle pain, am not too sure if its the raynauds or the aps, but my eye is hurting again,my left side aches and i get throbbing in my muscles and the jolting/twitching in the muscles wakes me up - then
emmaj
in
Hughes Syndrome APS Forum
12 years ago
Multiple DVT/Stroke Survivor
Hi everyone, Sheila here saying hello! I'm new to this HealthUnlocked forum but not to APLSUK. That forum was one of my first and best sources for information about APS. I'm positive for three antibodies and have survived four DVT's, along with a stroke in my retinal artery which cost me the lower half
Hi everyone, Sheila here saying hello! I'm new to this HealthUnlocked forum but not to APLSUK. That forum was one of my first and best sources for information about APS. I'm positive for three antibodies and have survived four DVT's, along with a stroke in my retinal artery which cost me the lower half
SheilaSparkles
in
Hughes Syndrome APS Forum
13 years ago
My blog
Hi everybody, my name is Stella. I have been following the community blog for some weeks now and feel it's about time I contributed. I am 57 years old and was diagnosed with Hughes nine years ago, although looking back at my medical history it's obvious I've had it since I was about 20 but of course
Hi everybody, my name is Stella. I have been following the community blog for some weeks now and feel it's about time I contributed. I am 57 years old and was diagnosed with Hughes nine years ago, although looking back at my medical history it's obvious I've had it since I was about 20 but of course
Stella
in
Hughes Syndrome APS Forum
13 years ago
Pregnancy related APS
I am a newbe to the site but very glad to have found it. Having had 6 pregnancies and only 1 baby i was diagnosed with APS but only in pregnancy ( which i now question). I have been recommended to take low dose asprin and then heparin once pregnant. The nurse consultant seemed a little vague and referred
I am a newbe to the site but very glad to have found it. Having had 6 pregnancies and only 1 baby i was diagnosed with APS but only in pregnancy ( which i now question). I have been recommended to take low dose asprin and then heparin once pregnant. The nurse consultant seemed a little vague and referred
Rbpw
in
Hughes Syndrome APS Forum
13 years ago
Confused and worried
I was diagnosed with APS after having 3 miscarriages and raised Igm levels of 21. Apart from the miscarriages I feel fine, so Dr Khamashta said I have pregnancy/obstetric only APS and advised I take 75mg aspirin daily. I'm worried because I've been reading about some of the awful symptoms some of
I was diagnosed with APS after having 3 miscarriages and raised Igm levels of 21. Apart from the miscarriages I feel fine, so Dr Khamashta said I have pregnancy/obstetric only APS and advised I take 75mg aspirin daily. I'm worried because I've been reading about some of the awful symptoms some of
HWickers
in
Hughes Syndrome APS Forum
13 years ago
LOW INR - ON WARFARIN AND CLOPIDIGREL - FUNNY TURNS, FACE FEELS WARM
Hello Well I have had LUpus and APS along with ITP since approx 27 years ago, and until March this year I have been on Aspirin, although I suffered from headaches, nothing major. However, unfortunately had to have spleen out due to Gastric Varices to off load portal vein pressure. I was on low heparin
Hello Well I have had LUpus and APS along with ITP since approx 27 years ago, and until March this year I have been on Aspirin, although I suffered from headaches, nothing major. However, unfortunately had to have spleen out due to Gastric Varices to off load portal vein pressure. I was on low heparin
daisy11
in
Hughes Syndrome APS Forum
13 years ago
HIGH INR - nosebleeds, dizziness,
Hello, well my INRS are all over the place, when my INRS go down I have funny turns i.e. pins/needles, funny head - pressure, dizziness and numbness, and then when I have high INRS the same thing, when they were going up last week, I felt a weight lifted off my shoulders. and today bleeding nose, dizziness
Hello, well my INRS are all over the place, when my INRS go down I have funny turns i.e. pins/needles, funny head - pressure, dizziness and numbness, and then when I have high INRS the same thing, when they were going up last week, I felt a weight lifted off my shoulders. and today bleeding nose, dizziness
daisy11
in
Hughes Syndrome APS Forum
13 years ago
Switching from Tinzaparin to Fondaparinux
Hi all, I've been happily (well relatively happily!) injecting LMW heparin in the form of Tinzaparin twice daily for 10 years. Saw Prof Beverly Hunt last week who is keen for me to switch to Fondaparinux as it doesn't lead to bone-loss (I'm already osteopenic) Is anyone else on it - I understand it's
Hi all, I've been happily (well relatively happily!) injecting LMW heparin in the form of Tinzaparin twice daily for 10 years. Saw Prof Beverly Hunt last week who is keen for me to switch to Fondaparinux as it doesn't lead to bone-loss (I'm already osteopenic) Is anyone else on it - I understand it's
Womanfriday
in
Hughes Syndrome APS Forum
13 years ago
Constant back and leg pain - a symptom of APS?
Hi everyone I havent posted much on the site but do read with interest posts from others. I have Factor V Leiden and Protein S deficiency and have had numerous episodes of DVT and PE. All under control now, or atleast as much as possible. My INR fluctuates and is difficult to manage and
Hi everyone I havent posted much on the site but do read with interest posts from others. I have Factor V Leiden and Protein S deficiency and have had numerous episodes of DVT and PE. All under control now, or atleast as much as possible. My INR fluctuates and is difficult to manage and
Karen_Probyn
in
Hughes Syndrome APS Forum
13 years ago
Professor Hughes' blog October 2011
- October 2011 A lovely autumn – still dry in the South East. It’s hard to believe that the London Lupus Centre has been going for five years! We estimate that we have now seen lupus and Hughes syndrome patients from 72 countries! Working here at London Bridge Hospital is a treat – overlooking
- October 2011 A lovely autumn – still dry in the South East. It’s hard to believe that the London Lupus Centre has been going for five years! We estimate that we have now seen lupus and Hughes syndrome patients from 72 countries! Working here at London Bridge Hospital is a treat – overlooking
Hidden
in
Hughes Syndrome APS Forum
12 years ago
Anaemia or not. Seen a haematologist today.
Basically went to see haemo today because I wanted to alter from warfarin back to heparin and the GP said he was out of his depth. His words. Well, never seen one before because I was diagnosed by a prof Hughes.. She did not like my idea but that is fine because I thought that would be the case but
Basically went to see haemo today because I wanted to alter from warfarin back to heparin and the GP said he was out of his depth. His words. Well, never seen one before because I was diagnosed by a prof Hughes.. She did not like my idea but that is fine because I thought that would be the case but
Jade
in
Hughes Syndrome APS Forum
12 years ago
Paleo Diet
Not sure how the rest of folks on this site are treating their APS, but on a lot of other sites I see a heavy bias towards medication. People take one thing for pain, another for GERD, something else for neurological issues, and of course, Coumadin and/or Heparin. Now I am not against medicine.
Not sure how the rest of folks on this site are treating their APS, but on a lot of other sites I see a heavy bias towards medication. People take one thing for pain, another for GERD, something else for neurological issues, and of course, Coumadin and/or Heparin. Now I am not against medicine.
TheKid
in
Hughes Syndrome APS Forum
12 years ago
Can someone help me with symptoms? Is is possible to be on Heparin and Warfarin and still experience awful symptoms? Help please.
I suffered a massive DVT in 2003 that almost killed me. Had another in 2009. Finally diagnosed with APS in 2010. Have been on Coumadin, but now realize I was experiencing symptoms all along that may be related to APS. I am wondering if others have had the problems I'm having. In the last week my INR
I suffered a massive DVT in 2003 that almost killed me. Had another in 2009. Finally diagnosed with APS in 2010. Have been on Coumadin, but now realize I was experiencing symptoms all along that may be related to APS. I am wondering if others have had the problems I'm having. In the last week my INR
TheKid
in
Hughes Syndrome APS Forum
12 years ago
package insert contains a warning of the inaccuracy of the machine for patients with Antiphospholipid Antibody Syndrome
see attached file page 2 !!!!!!!!!!!!!!!!!!!!!!!! Tests This is a CLIA waived system. These test strips are to be used with the CoaguChek System. Intended Use For quantitative prothrombin time (PT) testing in fresh capillary or venous whole blood with the CoaguChek System by professional healthcare
see attached file page 2 !!!!!!!!!!!!!!!!!!!!!!!! Tests This is a CLIA waived system. These test strips are to be used with the CoaguChek System. Intended Use For quantitative prothrombin time (PT) testing in fresh capillary or venous whole blood with the CoaguChek System by professional healthcare
Hidden
in
Hughes Syndrome APS Forum
12 years ago
Not the whole truth because I've forgotten most of it!
Okay this is me today, 46, fat, I may have already done one of these and forgotten that I've done it. I have APS, I also have a whole raft of other things that get in the way of my APS when it comes to diagnosis or chosing a doctor, at one point I was seen by a different consultant on each day of the
Okay this is me today, 46, fat, I may have already done one of these and forgotten that I've done it. I have APS, I also have a whole raft of other things that get in the way of my APS when it comes to diagnosis or chosing a doctor, at one point I was seen by a different consultant on each day of the
SharontheSheep
in
Hughes Syndrome APS Forum
13 years ago
My own experiences, treatment regime and results (this is a long one)
Having had virtually all the symptoms for APS and with nightly injections of Heparin relieving the symptoms you would have thought that I would have been diagnosed with APS by the experts! But no. My anti-cardiolipin test came back at 35 which is 31 over the limit for a positive, however because this
Having had virtually all the symptoms for APS and with nightly injections of Heparin relieving the symptoms you would have thought that I would have been diagnosed with APS by the experts! But no. My anti-cardiolipin test came back at 35 which is 31 over the limit for a positive, however because this
Hidden
in
Hughes Syndrome APS Forum
13 years ago
Negative Anticardiolipin but told I have APS
I had elevated anticardiolipin and whatever other test shows positive for APS. On my second set of tests the anticardiolipin were normal but the other test went from 26 to 34. I miscarried at 15 weeks after a completely normal pregnancy until then. I get migranes, tingling, cold in my right arm, fatigue
I had elevated anticardiolipin and whatever other test shows positive for APS. On my second set of tests the anticardiolipin were normal but the other test went from 26 to 34. I miscarried at 15 weeks after a completely normal pregnancy until then. I get migranes, tingling, cold in my right arm, fatigue
Texasgal
in
Hughes Syndrome APS Forum
13 years ago
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