I am close to a breaking point...think I may have reached it today. Ugh.
I am waiting to switch from coumadin to Lovenox injections because I am in supposed "coumadin failure". I am waiting because the expense of Lovenox is ridiculously high and I have no insurance.
Whether or not I am in coumadin failure or my INR is not allowed to be kept high enough...the fact remains that for whatever reason I am NOT theraputic and having all kinds of problems.
I learned last week that I have to have a breast biopsy. (as if I dont have enough going on) So it was scheduled for this Wednesday. Doc told me to hold my coumadin because I had to be between 2 and 3 to start the bridging of Lovenox for the biopsy. This was last Wednesday. So I didnt take it...went back Friday for INR check and it was 1.7. I had told them my tongue went numb and my face was numb and tingling...felt atrocious...could not even hold my head up due to the fatigue and headace.
So the doc comes back and said...we have a problem with you having the biopsy next Wednesday because of bleeding risk...blah blah blah.
SO...we have to start you back on coumadin now. I said WHAT? I didnt take it for two days to bridge to lovenox...i feel like i am dying and having these weird symptoms....no. I said I am not leaving here like this. So they gave me enough Lovenox injections to get through this past weekend and I went back this morning for an INR check.
I have felt so much better the past two days...the brain fog has lifted....my balance is sooo much better...on and on.
SO...my INR is 2.0 !!! I took 8 mg Friday, Sat. and Sunday.
They said.....OH....it is 2...you are THERAPUTIC!
I just sat there and cried.
I told her (the nurse who does the INR check) that I am just not comfortable with that INR being so low. She says that she went and talked to the doctor and between 2 and 3 is theraputic. THen she says and Dr. _____ doesnt even know if coumadin works anyway. !!!!!!!!!!!!!!!!!!!
I left there in tears...she said we will see you in a week for another INR check. They didnt up my coumadin. I told her that if something happens to me because my INR is too low...or because I dont have Lovenox and you all know that I need it....then who pays the price ...ME! That is a price that is AVOIDABLE and they dont give a hoot either way.
I am soooooooooo tired of this. I am making an appointment somewhere to talk to a psychologist or someone because this is alll way too much to deal with right now.
I hate that doctors are looking at this RANGE of 2-3 and taking it completely literally without taking the patient into consideration. I hate it.
Today I hate this disease....
Written by
pumpkincake
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I have been on the phone with Sanofi..maker of Lovenox...trying to get my application looked at sooner. I have been hung up on once...cut off once and am now on hold for 47 minutes. I feel crazed right now.
Hi Pumpkin, don't despair, I know it's hard, and when feeling so rough it is even harder, but no disease or nurse or doctor is worth you feeling so bad, and I also know how hard it is to be positive when feeling sooooo ill. Keep strong, do you have a hematologist or rhemy doc you can call tomorrow? to chat things through - If not could you try going back to your GP to talk things through and tell him/her just how desperate you feel?
We are here for you to vent and shout and support the best we can - I send you warming hugs and a smile in an attempt to ease your suffering
Hi how horrible for you,, no wonder you are so fed up, guess you are not in England.
Coumadin ( Warfarin) and (Lovenox Heparin /clexane) Don't work in the same way.
You need to have a second opinion, are you under the Haematology department or Rheumatology, is their someone at your Doctors surgery that is better informed about Hughes syndrome.
Hope all goes well for your operation, will be thinking about you please keep us informed
Hi there, I am so sorry you are having such a dreadful time. I hope that papers and books written, attached to this site via Hughes Syndrome Foundation, may be able to perhaps educate those involved in your care. Please if you can get somebody close to you to help with phone calls and hang on the phone for you, at least to take the pressure off that bit. Keep us informed and don't give up! Mary F x
I'm so sorry that you are having all these problems with the medics.
In my experience and from what Prof Hughes has told me APS patients generally need an INR of 3.5 to 4.0 or evven 4.5 to be 'Theraputic'. As you know from our recent discussions I am converting from Warfarin to Fragmin (Heparin) and I have now done that. To convert you need to take you Warfarin in the evening, say 6.00pm and then start the Heparin the next morning, with a fully 'theraputic' dose calculated on your body weight, and that's it you can stop Warfarin but you must have a 'theraputic' dose of Heparin every morning from then on. You must not stop Warfarin days before starting Heparin or you will be at huge risk of clotting etc.
If you need to onvert back onto Warfarin from Heparin you have to start Warfarin and keep taking the Heparin too until your INR is in the 'theraputic' range and then you can stop Heparin but not before.
I am still suffering from my 'funny turns', (sense of being pushed, ringing in the ears, numb tongue, shaky legs etc), even having converted over Easter to Heparin, and I am at a loss as to what to do next. The strange thing is that I never seem to get a 'funny turn' during exercise. If I feel well enough to go cycling, as I did on Sunday,, I'm fine during the ride but I have a 'funny turn' a couple of hours afterwards, crazy.
I'm so sorry you're going through this. I sympathize with your doctor communication problem. I wonder if anyone has compiled a data base of the percentage Hughes patients who actually have bled out, or had major bleeding events while on anti-coagulation therapy? as opposed to percent of Hughes patients who continue to have clotting events despite "treatment?" I just have a hunch that such data may change doctors comfort level with higher INRs.
Experts: Correct the following if my understanding or explanation is too over-simplified: Once again, yesterday, I had to explain to a (very personable, nice and clever)doc that "yes, 3.0 does sound a bit thin, but remember -- when the blood is in a test tube and tests as 'thin,' the blood is, after all, in a test tube. When the blood is inside me, surrounded by my insane immune system and the various antigens my immune system insanely hates, then that "too thin" blood (according to the test tube) actually behaves more normally. It's called 'Sticky Blood Syndrome' for a reason." "Oh," he replied, "that makes sense when you put it that way."
hi Cake - my target range 2.5 to 3.5, at the start of all this in 2009 , i was at 2.1 it was awful the problems i was having. it took a year to get them to increase it.i feel much better now.it seems to me over there they keep you guys higher than they do here. i have dicussed the higher targets with my rheumy ( he is by far the most up to date of any of my doc s so far ]. he said the patient comfort zone will dictate where they should be.although . has dropped my max. to 4.0 before he will intervene. my blood is drawn at hosp. here ,my rheumy is in dartmouth 80 miles away , they do my blood every 3 days at hosp here. hosp here consults if any problem to rheumy. i have been as high as 6.7 - this lands me in e.r. every time, lovenox next couple of days. i have a.p.s. and 3 other blood disorders to boot. i think he is rite that every patient is different and has to be treated that way. and until our doc s grasp this , we will suffer for it !!. hang in there buddy with hopes this gets taken care of for you. let us know . -------- jet
It takes 4-5 dayf or me. I have been trying to build mine since last Tuesday, I have just acheaved a therapeutic level for me of 3.0.
Have you asked to be referred to St T's, if you have and are already going call the APS nurse or consultantsup and ask them to write to your GP and Blood clinic in the end that is what i did otherwise i would still be on a target range of 1.9 Utter idiots really they are!!
You know we are all here for you and i agree speaking to a professional may help as well as we all need a shoulder to cry or a wall to hit. if you want to talk email me happy as we all are to listen.
I live in the states. I called Professor Hughes office about an appointment. Of course my biggest obstacle is getting to London. Now, unfortunately I dont believe that my current primary care physician will even listen to anyone. I took a recommendation from Professor Hughes to my doctor and it was disregarded. They claim that studies show an INR of 2-3 is adequate and theraputic. The Professor explained that many people with my symptoms have success with an INR of 3.8-4. They wont allow it...and I dont do self co-ag checks here either.
I have been on the computer and phone all day trying to find a specialist in my area that I can turn to. I will get back at it tomorrow as I literally spent 7 hours searching and documenting.
THanks everyone...I dont mean to sound so negative. I am trying to see the forest through the trees right now and just cant. Not being able to get these injections is like playing Russian Roulette with my life. My doc wont allow a higher INR and I am just feeling terrible...with all these symptoms.
I actually told my sister today...that if something happens to me through all this that I have a file for her to take to a lawyer. Not what I have the file for now...just to keep track of things for myself.
None of us want what we go through to be pushed aside...we all have this story to tell. These are the stories that change lives...ours and possibly others that will come after us. Thanks again for the kind words and thoughts. I appreciate you all !!!
I am sorry you are having such a hard time. I have been somewhat in your shoes. I was on lovenox injections for almost a month. My levels would not get right. I was talking to my doctor, because people with Hughes feel better when their levels are higher like a 4. I told her I wanted to be higher. She told me it was too high. The problem with Hughes is that many doctors dont understand the disease. I know it's frustrating, but things will get better. The migraines and extreme fatigue were making daily life miserable.Once your levels get straight, u will be a lil better. It just takes some time. Hope everything works out for you.
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