Sticky Blood-Hughes Syndrome Support
8,148 members8,378 posts

YET AGAIN INR UP OR DOWN I CANNOT COPE

Yet again INR finger test >8

It’s been another bank holiday weekend here in the UK, got tested at GP Surgery just before the weekend,INR was 1.0. ( far to low, target 3.5) Dosed on warfarin 2mg , one night,then, 3mg for 3 nights. Went back today, INR >8. GP surgery actually had no vitamin K!

I had to get someone to drive me to get it administered at another surgery. the GP Nurse practitioner wanted to put 2.5 ml on my tongue. I have pancreas disfunction. Every time I have to take the vitamin k, it goes straight through me, within minutes, diarrhoea. So I asked for water with it.

The nurse practitioner was rude,again, and actually accused me of over dosing my warfarin. My husband checks the dose, so do I each night, together.

Last week, injections, too low.??.

Now too high.??

I yet again have headaches, nose bleeds. Last time it was like this, when they took a vain blood sample, at 4.pm I was admitted to hospital, via NHS PHONE CALL at 10pm. Only to be sent home at 02.00hrs.

NO vain sample taken today, as blood collection already gone from GP surgery. Got to go back tomorrow. It was after 4pm, so I couldn’t even get my blood test done at the hospital.

I feel ill, my husband is fed up with this, been going on months. He says I’m alway “moaning” I’ll, tired, snapping, sleepy.confused, I forget what I am saying, or where I am? I feel like my head will explode with pressure.

It’s been 25 hot here, I’m wearing a fleece. I’m dizzy, I cannot think straight, my vision is blurred. Yes I’m short tempered. Saw a haematologist, 3 weeks ago he was trying to find me an alternative to warfarin, because of my pancreas. But nothing as yet.

I’m the lady who broke her humerus, doctor would not do the plate and pinning operation, because of my blood. So now my whole arm and shoulder is out of place and soooooo painful, still on morphine for pain. Still lost a years wages,Please reply. Got to go, husband stress as he is angry at me, MOANING. And a very bad nose bleed 4 times today everywhere

16 Replies
oldestnewest

Do you have an APS specialist? If not get one ASAP. It makes such a difference when you have a doctor that actually understands our illness. The discovery road is long and full of pitfalls but with a doctor who understands (and maybe the nurse as well!) you can level out the highs and lows. I could never keep a stable INR with Warfarin and changed to Clexane. Can you doctor prescribe this rather than Warfarin? Much easier than constant blood tests and dosage changes.

Reply

No I do not have a APS specialist, Rheumatologist once a year, I made an emergency appointment with him, and he basically got annoyed and sent me to the haematologist! They give me, “fragmin” (deltepatin) injections to use when INR <3. Sorry I have no medical training, I had to look up “clexane”

I do believe this is another injection? “Lovnox?” An alternative injection ?

I have already had a stroke and a DVT, IN the last year. Also could I please ask, when you were on the warfarin, did you pool in sweat at night, smell “spicy” as my husband says, on top of this. I am on HRT, so I don’t think I should be getting female menapause symptoms? ( had to have an emergency hysterectomy at 29, due to bleeding, not diagnosed then!)

Reply

I tend to agree with Ozchick, it’s time to change frim warfarin. I was like that and then found out I was allergic which pushed me to change and I’m so glad I did. I’m sure that your arm meds are playing a part in this.

I changed to LMWH and have not looked back. Go and see your GP and insist that you are allowed a trial. Is there any reason why your pancreas problem precludes LMWH?

So sorry you are going through this.

Reply

Sorry no medical training what does “ LMWH” mean?

I have to take, Creon 25000 tablets, before I eat anything and then Colesevlam 625mg after eating. Other wise I have un- crontroled diareah. I cannot eat a thing, nothing without these meds for the pancreas. Honestly if I just stuck a sweet in my mouth without these, I would be very very ill with bile acid diareah.For years I was fobbed off with the IBS excuse from the doctors!

So I don’t know if it’s the pancreas itself with the APs? Or the drugs I am on interfering with injections. I do believe, myself that I may be having a reaction to “fragmin” and “warfarin”

I cannot get a GP Appointment. Tried 4 telephone appointments with GP. GP failed to phone on every occasion. Nurses dose me with warfarin and ask what my condition is on the way out of the door.

Reply

LMWH = Low Molecular Weight Heparin: ( Fragmin, Lovenox, Clexane, etcetera.) in other words, the injections instead of the warfarin. If you can’t keep your INR at a stable range ( which right now you cannot) then your Hematologist might find switching you to the higher intensity of fragmin a great choice. Other medications do not tend to interfere quite as readily with it.

Because you have had a stroke, it is possible, with the guidance and under the very watchful eye of an APS knowledgeable Hematologist, to add a little bit of an anti platelet like jr. aspirin or low dose clopidogrel. There is less risk of a bleed with LMWH and a little bit of an anti platelet than warfarin and a little bit of an anti platelet.

Reply

The answer to your first question LMWH-Low Molecular weight Heparin. Clexane is one of these. I'm sorry you are having such a hard time but if you get to the 'right' doctor it will make your life so much easier. A Rheumy once a year doesn't cut it for looking after you. If you say where you are from, someone on here may be able to help you with a name to see a Specialist.

There are ways and means of keeping you blood 'thin' in hospital if you need surgery, without putting you in a spin expecting bleeds and strokes! No one on here is medically trained but there is good info on here if you have the strength right now to trawl through. The main problem is that nearly everyone has different symptoms and cures to find what is best for them. eg. I was fine on Clexane for a year-then had a huge clot. The Haematologist at the hospital changed me to Rivaroxaban (Xarelto) and low dose (100mg) Aspirin and this has suited me really well for the past few years. Again, not recommended for everyone with APS.

Click on GHIC for Prof Hughes website and click the 'Hughes Syndrome' tab and scroll down. The more you educate yourself the better equipped you will be to stand your ground with doctors that know nothing about APS.

1 like
Reply

Hi,

Try to find a Specialist of autoimmun illnesses!!! Few Hematologists and Rheumatologists kow about our illness so you have to look for the right one who has had patients like us before and knows how we must be propperly anticoagulated.

I totally agree with what the others have told you.

Kerstin in Stockholm

1 like
Reply

Hi, you and your GP need a specialist who fully can work with the two of you, we have a list under pinned posts, on this forum, also some listed on our actual charity website. Not everybody can stabilise their INR, so often alongside on on it's own a new medication is prescribed. A specialist of the list will have seen problems like yours before so this would be a better option. Best of luck sorry life is so difficult currently. MaryF

Reply

Thank you for your brilliant support. I would like to thank everyone who has replied, but I feel brain fog, I’ll, mixed up, stressed. To be honest, very ill.

I just don’t know how to cope. I got my INR blood test back this evening from a vein 11.00am sample. Got the results 17.30. It was > 11 I had to chase and and phone around to get that result.

Given vitamin k, again 2 times within 24 hours.( 5+ times within 3 months)

Due to my pancreas problems, the vitamin K it went “straight through me, straight on the toilet. I am saying that. Not the doctor, but if anyone knows if the vitamin K has oils in it, fats, please let me know ASAP

I feel so ill. My husband says I’m moaning. And moaning, moaning.

I have a pre - arranged annual appointment with the stoke clinic tomorrow. Trying to attend this, but I cannot drive, due to the broken humerus problem. So a long journey on the bus.

I am fed up of plugging my nose, with a home adapted tampon. Dressing,

Or blood every where from other stupid parts off my body, headaches screaming, head pounding.

Reply

You only mention an oral VitK. Can you ask for an injection instead? Bypass the gastric, perhaps.

1 like
Reply

There is also a spray that is pumped onto the roof of the mouth. Approximately one spray will bring the INR down one full numeric value. ( if I understood my Hematologist correctly.) that might also upset the tummy.

Reply

I will also add , that you do need to make sure your doctors are aware are which HRT your are being given is safe. ( another important reason you must see a specialist who knows APS specialty.)

Estrogen specifically will place all women in a more coaguable state, so a woman with APS will be particularly clotty when on HRT, or contraceptives.

Reply

A thought! ( but since Im an English major, this thought might be bunk.) If estrogen effects INR, then could predictable, fluctuating hormones as part of female pre- menopausal cycles provide some rational for fluctuating INRs?

Reply

I’ve not heard of it, but given migraines accompany the onset of periods , it’s a possibility I suppose.

Reply

Ditto previous comments. You must see a specialist who has experience treating sticky Blood! A feather to keep in you negotiating-with- be autocrats quiver: Consults with an appropriate specialist is cheaper than numerous emergency hospital visits. Good luck. And use this forum to share and vent. Thats what we’re here for.

Reply

So sorry you are experiencing this. This diagnosis is difficult as it is, initially, but I feel for you as you say you have been “snappish” who wouldn’t be with all you are experiencing. Please continue to ring up specialists until you find one to treat you... I understand you’re frustration but please keep at it. It will be so much better when you are finally receiving proper treatment., Cindy

Reply

You may also like...