I want to cry

It really helps me to vent all of these things to you all...as you know how all of this feels. I am crying. Went to the doc today after a month of not walking right...using a walker, falls, temporary loss of vision in one eye, fingers numb and splotches suddenly appearing on my calf (dont know what this is) and headaches. My INR was 2.5 a week ago when I couldnt see. Today they said it was theraputic last week...and didnt check it today. WELL....this isnt theraputic...if it was theraputic I wouldnt be experiencing all of this!!!!

So he had talked about Lovenox and switching to that completely. After very expert sound advice I told him I would like my INR at 3.8 to 4 to see if the symptoms abate. He said that I have had these same symptoms at INR of 3 and he feels anything over that wont help and is afraid of the bleeding risk.

I will take that risk to see if this helps.

So now they have me listed as Coumadin Failure. Well I dont know if Coumadin has failed me....I dont think I have enough of it!

In the US self monitoring isnt commonplace and my doc wont allow it.

So I will start injections in a couple of weeks as I am getting assitance with the cost since it is very high. (another reason I would like to try a higher INR..coumadin is very reasonably priced).

I just want to go to a far away beach and get a comfy chair, and umbrella and a cabana boy to get me cute little drinks with fruit in them and never leave!!!!!!!!!!!

28 Replies

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  • Oh dear it does sound a tad frustrating...I hope the next two weeks improve things and that you do get as fars as the beach and comfy chair and of course the waiter. I hope others on here can advice a bit more, me not being on anything other than aspirin, it is not my forte, other than to say getting the INR right against medical opinions is at times hard. Mary F x

  • Mary....that beach far away sounds good doesnt it? One can dream..cant we? :)

  • Hi Pumpkin

    I am really sorry to hear what you are going through, your best bet is to take copies of all the material saying that Prof Hughes Suggestes an INR of 3.5 also as mary said take aspirin and i would also suggest seeing another doc if you speak to apshealinghands.org/ they may give you other docs and info to bombard your doc to at least try.

    This is one of the annoying issues when the docs do not listen!!!

    Please do let us k now how it goes and you know we are all here for you

    Paddy

  • THanks Mary and Paddy...

    I took an email from Professor Hughes about the INR and he dismissed it saying that there are various studies that show a higher INR does not work. I may have to...as much as I totally dread doing it...get a new doctor. THanks for the link. I did contact Dr. Erkan from New York as I found him though the APS Action website. He seems to be very good but it is an 8 hour drive. I am hoping to find somone closer...but right now I am befuddled honestly.

    I just want to do something about all of this....the lack of knowledge is overwhelming at times. I just dont understand it.

    Thanks again....

  • Pumpkin

    Some times the best thing we can do is work with the charities and promote the issues and fight the lack of undersatnding and we will help where we can to change that and provide the information and support

    Paddy

  • Paddy,

    I am wondering how my energy can be put to work here in the states. Hmmmm... any thoughts please send them my way!

    Beverly

  • Pumpkin,

    I know all APS cahrities are looking for help and support this one in america is very good and has worked with HSF here in the UK may be worth talking to them about what help they need and maybe starting up a local support group in your area use forums like thesas a means to speak and meet apshealinghands.org/

    let us know how you get on

    Paddy

  • Pumpkin,

    Where are you located in the US? Maybe I can help you? Also, there are some places where you apply direct to the manufacturer to get Lovenox for free or greatly reduced cost. I will have to look up the links but its posted on the right hand side of my blog at lifewithaps.blogspot.com

    I am in the UK at the moment and nearly 1am now so will try to remember to look up stuff for you in the morning.

    I hope we can find a doc who will listen that is closer to you or somehow help you get to one further away that will!

    Feel free to PM me if you like.

    Try to keep your chin up, and lets try to find a solution. I know its probably not a comfort, but many people have been or are going through similar with ignorant doctors.

    -Kristina

  • THis is so funny Kristina...I ran across your blog while I was looking for information about Lovenox a few days ago! I did put in an application for assistance with the Lovenox today. It will take 10 days or so to go through.

    Later today I am going to read through your page too. That is awesome that you have blogged everything. It is helpful to everyone I am sure.

    It is good to know I am not alone...and I know this...but I wish I were alone...so no one would have to deal with this!!!

    Thanks Kristina :)

  • Im another cumadin/ warfrin 'failure also and like you wonder who failed who but i have to say after approx 3 weeks on the injections I am starting to feel better, partly I think its uncertantiy is gone, (as much as it can be with APLS ) but i am definetly seeing an improvent in my symptons though not all but that would be a miricle (one day maybe) I hope you start to feel better soon, I have had a full 12 months trying to get my INR steady which i know is only a short time compared to some on here but i can only say persevere and hopefully you will feel better soon.

  • So happy for you that your symptoms are improving. What injections are you using??? ALways good to know what works for someone else! I have been on Coumadin for 12 years and i had one stroke while on it 8 years ago but nothing since. THen all of these odd symtoms started in July last year.

    My doctor says it isnt made for long term use so I am not sure how to take that...because this will be forever.

    Let me know how you get along...

    Take care!

  • Hi Pumpkin

    Are you still going to try to get an appointment to see Prof Hughes?

    I think I sent you all the contact details a few days ago.

    I agree with you that a trial period with an INR around 4.0, together with 75mg of Aspirin would be worth trying. A lot of us on here only feel tollerably well with that level of INR and we feel dreadful on lower INRs.

    As you know, I am going to trial Fragmin shots instead of Warfarin soon, as agreed with Prof Hughes.

    Best wishes.

    Dave

  • I called about coming to see Professor Hughes. He is scheduling into August and I am going to get back to them next week when I make a final decision.

    My problem now Dave is that my doctor here does not agree with his recommendations thus far, so if I do see Professor Hughes I will have to find a doctor here in my area who will follow his recommnedations.

    I am going to be doing alot of reading and research about the long term use of Lovenox and the differences with Fragmin starting this evening.

    I did tell my doctor that I feel terrible with an INR below 3 for sure and most of the time below 3.4...and much better at 4. I have been that high only twice when I got my INR checked and felt good...and they decreased it. It takes 10 mg daily to get my INR to 3...and I was reading with Coumadin failure that some patients take up to 15 mg a day and fail. I think there was alot of room to try higher...but I dont have a choice unless I change doctors. I may have to do that.

    Have a great day Dave,

    Beverly

  • Pumpkin,

    I totally relate. I was wondering if I was doing a bad thing when I switched from the Cinn. Oh doc who diagnosed me and wanted my INR between 2.5 and 3.5 to the local heme who wants it "as low as possible without showing symptoms. Don't you agree?"

    Sure. Problem is -- what I suspect are symptoms he thinks are "unrelated to APLS."

    So here I sit with an INR of 3.1 (Lions and Tigers and Bears! Oh my!) This is up from the 2.1 he wants so he reduced the coumadin so I can get 'back down' to the level he wants.

    Except -- I was wondering why last week the pain in the hip was reduced and I was walking much better. Th

    is week my coumadin is reduced and now the pain and awkward gait have returned. Coincidence? Doubtless my rheumy and the local heme would see them as "unrelated."

    The temptation to fudge and slip in an extra 2.5 mgs is quite high -- except I have these naive hopes that someday, somehow, my rheumy and my heme will get on board with my observations.

    For what its worth -- I totally relate and send sympathetic thoughts your way.

    I think maybe I'll have some ginger with the sushi I plan for tonight's carry- out. (Pssst. Don't tell me that ginger helps thin the blood. I know noth... thing. I know noth.... thing." )

    GIna

  • Hi Gina,

    I see your dilema on that one. You had a doctor who was a bit more liberal with your INR then to one who says lets go as LOW as we can go! The thing is...and I dont know if this is what you are dealing with, is that with all of these symptoms, the doctor is trying to find some "other" reason for them other than looking at APS/Hughes.

    It seems like the "classic" symptoms of is what the doctors lump into APS.

    •Blood clots in veins, particularly deep vein thrombosis (DVT)

    •Blood clots that go to the lungs (pulmonary embolism)

    •Blood clots in arteries

    •Miscarriages

    •Pre-eclampsia

    •Heart attacks, angina

    •Strokes

    •Brief stroke-like episodes called transient ischemic attacks (TIAs), for example, loss of vision

    •Decreased levels of platelets (small blood cells involved in blood clotting)

    •Heart valve problem

    •Persistent or transient blotchy, lacy bluish rash (livedo reticularis)

    •Skin ulcers, most commonly on the legs or feet

    •“Catastrophic” APS – a very rare, life-threatening syndrome in which clots form in small blood vessels of multiple organs (such as heart, lungs, brain, kidneys)

    The other possible symptoms seem to be lost in the confusion of "this has to be something else" syndrome!!!!!

    •Problems with thinking clearly (loss of concentration, difficulty with reading comprehension and performing calculations, memory loss)

    •Neurological problems similar to multiple sclerosis.

    •Migraine headaches, sometimes with visual disturbances

    •Other neurological symptoms including episodes of partial or total vision loss, dizziness, vertigo, loss of balance, seizures, and other abnormal movements

    I have been tempted like you to fudge a little and take more Coumadin but I dont self check my INR at home (doc wont allow it), so it has made me a bit nervous. I have taken a baby aspirin at times when I feel really bad symptoms...it has helped but shot my INR too high and then the doc decreases the Coumadin !!!....a big ole nasty circle1

    I am nervous about going completely on Lovenox...wonder if my headaches will get worse. eh...time will tell.

    Sorry you understand all this...I hate that anyone feels this way.

    Thanks for the encouraging words Gina,

    Have a wonderful day!

    Beverly

  • Awww, Pumpkin I know what you are feeling. My new rheumy, who i have only seen once has reduced my INR from 3-4 back to 2-3, believing that I did not experience clotting while at 2-3. I have felt worse since and never related it to INR. With me it is so hard to determine what is taking place as I also have MS and Fibro. You all mention pain, is this related to APS, as my rheumy says there is no pain with APS. DIs he advising right. Please do take care! Pray your issues are resolved...

  • Hi ....I replied below ~~~ oops.

  • My APS causes me chronic pain, in fact it is pretty much constant. So your rheumy has it wring I'm afraid! Take care

  • Hi...

    isnt it frustrating not knowing which is right and which is the best way to go?

    Here is what has been happening with me, they have all but ruled out MS although I have not had a lumbar puncture and they talked about doing that.

    Since last July so many different symptoms that are not "commonly" related to APS. I think APS has become somewhat stereo typed in a sydrome with pregnancy losses, migraines and clotting/strokes. As important and crucial as that all is...there are a myriad of other symptoms related to APS that many doctors do not want to recognize or just havent enough knowledge that it could be APS related.

    I am sure you have read Professor Hughes blogs, but in case you havent it is an eye opening experience personally. The confusion and mix of MS and APS is staggering! I wonder if it will one day show that the two are the same with a different variant somewhere. My doctor told me how "rare" and "odd" it would be for me to have both APS and MS. I asked him why...his reply that APS was rare and a mix of both is certainly rare. WELL....actually APS isnt as rare as they want to believe and this is being shown more and more.

    But, there is a part of APS that "mimics" MS symptoms. MRI findings seem to apprear virtually the same in APS as in MS as well. THere is a fine line I guess.

    Pain in itself is not listed as a symtom of APS but...that does not mean it isnt in my personal opinion. Many people seem to have issues with pain. I have muscle and joint pain mostly when fatigue sets in.

    I wondered this for the longest..... if there is lack of blood flow throughout the body, wouldnt it make sense that muscles would lack this as well and esp when fatigued. I believe they are finding that the lack of blood flow may be affecting bones as well. Lack of blood flow to the brain...to organs...what is left...muscles and bones.

    Sorry I went on and on...get me started on this and I get fired up!

    I wish you luck...and if you ever need to talk you can always message me.

    Beverly

  • Thank you so much, you have gone on and on, what you have said is so very helpful. I was diagnosed with MS in 1986, with spinal, relapsing/remitting, and APS in 2003. Just went through some more MRI's sort of to confirm MS. What you have said makes so much sence. I have not read Dr Hughes' blogs, but will do that. Thank you again. It would be so nice to talk, so I will take you up on that. The best to you, Beverly.

    Barb

  • Hi

    How easy is it to change your Doctor. Is it a Hospital Doctor you see or Gp.?

    I would try and get a second opinion if I were you.

    Clexane is the same anticoagulant given by injection It doesn't really hurt and the benefit are well worth it.

    Good luck

    Love Karen xx

    .

  • Thanks pumpkincake,

    Nearly all of what I then thought was APS cleared up when I was put on coumadin. The chronic brain fog issues went away (like the snap of a finger) when I went gluten-free. But these hip "arthritis(?)" flares have persisted -- in fact, they only began after I went on warfarin -- actually after I switched hemes to the one who prefers the lowest possible number.

    My excellent PT is pretty sure the degeneration in the hip is due to a horrid gait pattern. He is probably right. In which case there is a limit to how much I will get back without hip replacement surgery -- and, as you know, as an APS patient I must kick that can as far down the road as I can.

    But as the person who lives in here (who, due to life story may be predisposed to think this way) I believe that there is something inflammatory/autoimmune going on and if this "something" were to be identified and treated, maybe I'd get a few more years -- or decades-- out of that can.

    My flares have (until this most recent one which has persisted for 14 months) always begun @ Dec or Jan and persisted until spring . I have attributed this to wearing heavy boots which encourages the bad gait pattern. My rheumy attributes this to the "storm front" hypothesis that bad weather exacerbates arthritis. And indeed, I will agree that a front which involves a rapid barometric change can make a flare worse. Also, this flare was accompanied by fatigue, fuzzy brain and weight loss -- as in 15 lbs. (NO! I was NOT eating less! And I was doing less.)

    AND, my flares have always before been managed with exercise/PT and Alleve. THIS time I was scared and ordered into not taking Alleve and awaiting the approved NSAID script from my rheumy. Except that approved script, for Salsalate, did not appear until December.

    The salsalate kicked in slowly, the intense "gotcha" inflammatory pain lessened and I returned to PT -- where my therapist found that in 1 year my muscles had turned to mush and I had nothing there to stabalize the pelvis.

    So here I am. Wondering after reading these posts if the variable is Vitamin D? Maybe? My INR has usually dipped during the winter months -- from @ 2.8 down to 2.1; then in the summer it would rise. My heme, of course, noting I was "symptom free" on the lower INR has made that my new goal.

    I know as someone who may also have lupus (in remission) I am supposed to avoid sunlight, but a teeny tiny bit (it doesn't take much at all to get your VD) may be what it takes to get this pelvis under control. At my latitude and time of year -- we're talking, basically, a lunch on my patio while wearing shorts and short sleeves (projected high today of 80.) I'm going for it.

  • Reading these posts what seems to be coming through is a consensus that heparin (of the low weight kind) seems to have a better result in controlling APS symptoms. Is it just me?.....

    I know that warfarin has always been the choice treatment but with the constant swinging of the INR I have to wonder, - if there is no stability how can there be any real chance of proper symptom control?

    I was dx with APS last year and had a go on warfarin after a successful heparin trial. Warfarin was awful apart from showing signs of being allergic my INR was never stable and my symptoms were all over the place. On Heparin you have a constant dose, your body knows where it is and after a while it settles down. Heparin works differently to warfarin and I can't help wondering if perhaps some of us at least are much better suited to it and should not be forcing ourselves to take a drug which obviously is fighting our system.

    I personally have no problems injecting and would never face going back to warfarin. The consent uncertainty of not knowing if you are in range, the symptoms when you are not and the worry is all too much trouble. There are no long term risks with the LW heparins and for me I would much rather balance any small risk that there might be against a much bigger risk of an unstable INR.

    Just my opinion........

  • My doctor did say that the risks were osteoporosis and a possible worse problem with clotting..have you heard this from your doctor?

  • My Doctor is Prof Hughes and Prof Khamashta, they did a study to compare LW heparin with warfarin and there was no additional risks. There is also not the risk for Osteoporosis that there is with non LW Heparin. I think a lot of Doctors don't understand that.

    As for an increased risk of clotting I have not heard that or been advised of it and personally I think that if you have an unstable INR which is constantly crashing you are more at risk than being stable on heparin injections, but that is my opinion.

    I don't think I would be advised to be on Heparin if there was any long term risk and I trust the advice I am given. Anyway long term its not going to be for life Im sure because an oral heparin will come along. Trials have started and so its reasonable to assume that it will happen. As I say I feel more relaxed on injections than worrying about an INR. Perhaps if I had been allowed to self test and had not reacted to the warfarin my attitude may have been different.

    Being less stressed about things must also be better for the condition as a whole. Everyone has to make the decision they feel most comfortable with but I can say that Heparin is not something that I personally feel concerned about.

  • Hi, All.

    My daughter has been on Coumadin for about 16 yrs and until fairly recently has had stable INR's of between 2.5 - 3.

    This was until she had a clot in her lung and since then (approx. 2 yrs ago) her INR's have been all over the place and it seems that her warfarin is no longer able to stabilise her condition.

    We will see a specialist soon and maybe we can get it sorted.

    I agree that being less stressed about things helps but it's hard for her when she's having so much pain constantly.

    One marvels at the bodies ability to cope with these issues, and I admire her for her (and yours) bravery as you face these things.

    Osteoporosis has been talked about (with her GP) and he considers it to be a concern for her later well being however I am thinking that it would be worth her taking preventative measures if they don't upset the balance of her current medicinal regimen.

    Maybe the specialist can advise on this when we see him later this month.

    Her GP also said that LW Heparin is very expensive in Australia, as it is not covered under the Public Benefits Scheme for medications as Warfarin is.

    This may change in the future and we live in hope.

    Thanks,

    Wayne L

  • Hi Wayne...

    Warfarin has stopped working for me...they call it "coumadin failure". I have taken it for 12 years..since my first stroke. I am about to begin Lovenox which is a LW heparin...and you are right...it is very expensive. I dont know about Australia, but here in the states you can get assistance with the pharm company who manufactures Lovenox. Here is the application although I dont know if it is at all applicable to your daughter, but if you call Sanofi...they may be able to tell you if they can assist with the cost.

    rxresource.org/resources/20...

    Tel: 800-981-2491 in the states

    I wish your daughter the best .... hang in there...and your daughter is lucky to have such a caring father!

    Beverly

  • I am in the US and fortunately my MD never even blinked before he said yes to home monitoring. It has improved my quality of life tremendously. Generally, in the US, a coumadin failure would mean that you still had documentable clots regardless of your theraputic level. The fact that you are still symptomatic is not generally a failure in the eyes of our American phycisicans. I do very well at 3.5 and begin to feel bad at 2.8 but very sick much less than that. The cost is a huge factor to me as well. I would stick to my guns and let him know that you are in charge of your destiny.

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