Low INR & Symptoms

[WendyWoo50]

My INR has dropped to 2.3 and I feel dreadful. In fact I have done for some months.

In September I was transferred from hospital monitoring to monitoring at my pharmacy. Since then my INR has been below 3.

I have Lupus, Sjogrens Syndrome and Fibromyalgia as well as Hughes but have been particularly ill since INR dropped.

My legs hurt deep in the muscles and I'm finding it difficult to walk at all. My legs give way without warning and I keep falling. I've had a battery of tests from MRI & X-Ray's to nerve & muscle tests. All inconclusive.

I have started to suffer from headaches again and over the last 2-weeks the most horrendous constant one ever. Today I couldn't remember my own phone number or PIN number. I'm also having chest pains. And blurred vision as well as fatigue, I'm exhausted once showered I need a sleep. I need to sleep on and off all day and it's all taking my life away.

I'm now taking 19mg of Warfarin 5 days a week and 18mg twice a week.

A bit of history: I suffered a headache to some degree every single day from 1978 (aged 11) until diagnosed and treated with aspirin about 4 years ago (2012) After 2 years the headaches returned and after a suspected blood clot on my brain 18 months ago I was put on Warfarin and once the INR hit 3 the headaches vanished!

I need support and to know whether these symptoms are connected to low INR?

[Ozchick]

What was your INR before you changed testing locations? If it's consistently low then you won't be properly anticoagulated. The Warfarin dose should be adjusted to INR. Some people will reach 3.5 on 6mg so dosage is dependent on test results. Most people on here start to get migraines when INR drops below 3. I think you need someone to check on you- do you have an APS speciaist?

If you read Prof Hughes blog you may well fall in to the category of "treatment falures"

[Wittycjt]

See Prof Hughes response to Nov question of the month, this should help you! It's up on the upper rat hand corner. Click on it. Let me know?

[Fra22-57]

Haven't the pharmacy been highering your dose of warfarin INR gone lower

[WendyWoo50 in reply to Fra22-57]

Yes they do by like 3mg a week. They r scared if it goes above 3.

[MaryF Administrator]

Clearly you need a specialist with full knowledge of Hughes Syndrome/APS monitoring you, please remind me where you are located? Also when did you last have blood tests done for B12, D, iron and Thyroid as I am suspicious about some of those levels? Mary F

[WendyWoo50 in reply to MaryF]

I'm on south east coast of England. I have a range of bloods monthly inc full blood count but not B12

The Thrombocilic clinic specialist does not believe in seri-negative (my last tests have been negative) they agreed to warfarin but don't like it when it gets near 3.

I see a rheumatologist she is very good.

[Lure2]

I agree with all the others here.

Read what prof Hughes says (there you have the answer) and read also "Sticky Blood Explained" by Kay Thackray.

You need a Doctor, specialized in autoimmun illnesses, usually a Rheumatologist.

As you have at least 3 autoimmun illnesses diagnosed someone should be responsible for your anticoagulation.

Best wishes from Kerstin in Stockholm

[SoulRebel-APS]

They are all symptoms that Iam either having or have had. Getting your INR up will help. I learned that from the others on this site we need an INR of 3.5/4.5. When u get it up u do feel better. I still have the deep leg pain and my legs like to give out when im walking. Just out of the blue im walking and suddenly im falling. Which is dangerous for people on warfarin with the higher INR. Just be sure to grab anything u can to slow ur fall & catch urself enough that u DON'T HIT UR HEAD. U might want to watch what ur eating and remember dark leafy green and broccoli have vitamin K which will ccounteract ur warfarin. So keep an eye on ur vitamin K intake. I hope this helps. Good luck! I am sure u will get plenty of good advise here.

Im sorry you are having such problems.

[WendyWoo50 in reply to SoulRebel-APS]

Thank u for the good advice. I will be taking ur suggestions. It's just nice to be understood thank u so much.

[SoulRebel-APS in reply to WendyWoo50]

I agree. Finally i have people to talk to about APS especially because if ubdont have it, really do not undertand it.

[GinaD in reply to SoulRebel-APS]

Have you tried walking with a cane or a hiking stick which has a pavement friendly end cap on it? It won't stop a fall, but it might help you stabilize on your way down. Also, dating back to 2000 before I was diagnosed I gave up on traditional purses and satchels and now carry a purse-like backpack. It helped my balance tremendously. I still prefer backpacks to other purses – the only problem is that at least here in the states, it's assumed by many that if you have a backpack it must be because you're a law breaker . So, I try to use backpacks that are pink/purple/decorated with a lot of flowers -- anything that will challenge their preconceived notion.

[WendyWoo50 in reply to GinaD]

Thank you. I use a tri-pronged stick in doors and a crutch or mobility scooter outdoors. ;as well as falls I have a lot of pain in my legs and hips too)

[SoulRebel-APS]

Something I forgot to mention. If I start getting the APS Headaches then I know my INR is two low! (I call the APS Headaches because they are different and much more intense then a regular headache, at least mine are)

[WendyWoo50 in reply to SoulRebel-APS]

Exactly how I am - but they don't believe me here!

[SoulRebel-APS in reply to WendyWoo50]

That can be the worst problem with APS, gettng dr.s to believe you. If urs don't, then try a newone its not unusual to go thru many drs before finding that one special dr that listens and take the time necessary to figure out what the best treatment is. Keep looking and u will find one! Good luck

[Peecue]

I had a problem with Haematologist in my town wouldn't allow INR to be higher than 2-3 so got referred to Prof Hunt, who has organised that I am 3-4. And now I am organised by her my home town haems can't change anything cause I won't let them, just say I will see what London tell me next time I see them. I got the second chance to see a different DR through my GP (it's your choice where they can now send you and even if it's out of town, that's why it's called choose and book)

Good luck get the right people because although mine is recommended in the list I'm sorry to say they refused me the correct treatment.

[WendyWoo50 in reply to Peecue]

I totally understand everything u have said and I do get why they don't like our blood too thin but I just can't go on like this anymore. For two weeks (over Christmas and new year as well) I've had the most horrendous headache. Everyone must be sick of me saying please be quiet.

I'm in so much constant pain and disablement that I often feel suisidal. I just want a chance at life. There's so much I could say here but it won't help. But I thank u for taking the time to talk to me X

[Peecue in reply to WendyWoo50]

So sorry you are feeling that bad, any chance of taking Prof Hughes December blog to your Dr? It may help?

[WendyWoo50 in reply to Peecue]

I intend to get the info from here in order and send to those looking after me.

I'm trying to raise funds to actually go and see Prof. Hughes himself. I can afford the consultations but the blood tests he will insist upon are so expensive. I believe £1000

[Peecue in reply to WendyWoo50]

Can you get your GP to refer you to St Thomas Hospital to the Thombophilia clinic? That's were. I go and it's NHS and yes my Prof firmly believe in sero-negative APS

[WendyWoo50 in reply to Peecue]

I used to see Prof D'Cruz for Lupus & Sjogrens at London Bridge and transferred to St Thomas when my health insurance ran out.

Then I found an excellent rheumatologist locally, as I was so ill travel 60+ miles each way was too much for me.

Then I was diagnosed with Hughes too. She understands that but trusts I'm being looked after by the anti-coag team. It's them who have an issue with high INR and sero-negative.

I will discuss it at length at my next appointment. If I don't get anywhere I will go back to St. Thomas'

Thank-you 💋

[WendyWoo50]

Thank u so much.

Receiving my results I c that over the 19 months I've been on Warfarin I've never been stable. Never constantly 3 or over. Never had the benefit of proper treatment.

I have a good rheumatologist who is on the list for APS.

The consultant who specifically looks after my anticoagulant does not believe in deep-negative APS. I see her once a year and have to feel grateful she agrees to keep me on warfarin and extatic that she keeps my target 2.5-3.5.

I am making my project this year to research and inform those caring for me. It is my last attempt. I have no life now and often feel suisidal. I don't want to die. I want to live. But I can't live in this pain and level of disablement much longer.

Thank u for ur support and information 💋

[Lure2 in reply to WendyWoo50]

Could you show her what prof Huges says about INR?

Otherwise, as oral drugs are probably out of the question as you need an INR over 3 at least, ask for a trial of LMW Heparin.

Probably you need something more for your severe headaches and there is where the Specialist comes in; you need a Specialist to look at your different symptoms and autoimmun illnesses diagnosed.

Perhaps a higher INR or LMW Heparin will help with the headaches but to find the perpect drugs you need a Specialist!

Kerstin

[WendyWoo50 in reply to Lure2]

I have been reading and printing blogs and info from here and read Prof. Hughes. book. It's now a case of getting the info in order and sending it out to those who care for me.

I don't want to offend them. I know they feel they are doing their best for me but I have to get them to actually understand that it's not working. I feel like I'm slowly dying 😞 I can see what's left of my life ebbing away.

I don't have much fight left in me and don't really know where to start but know it's my last chance.

[Lure2 in reply to WendyWoo50]

You sounds very wise and you also no doubt know a lot of APS.

I am so glad that you take another fight with your illness.

Good Luck and please keep us all informed of your progress as we learn from eachother and also care for eachother and we are here.

Kerstin

[WendyWoo50 in reply to Lure2]

Thank you. I will.

To us it seems so easy. Medicate - stabilise - monitor - regain good health.!

I want to scream - listen to what my body is saying!!!

[Lure2 in reply to WendyWoo50]

I have re-read your post and I understand that you just have to get a higher INR - now!

Kerstin

[mattsmom94]

Are you taking a stomach medication such as Prilosec?

[WendyWoo50 in reply to mattsmom94]

I take about 30 meds including steroids and Nexium

[WendyWoo50 in reply to WendyWoo50]

Oops 20 meds not 30 typo