Question; Does being on Coumadin INR range 2.0-3.0 mean I cannot get any new tattoos ?

[bexter0021]

[Manofmendip]

Do have APS/Hughes Syndrome?

[bexter0021]

Sorry, Yes I have Primary APS

[Lure2]

I have noticed that your Neurologist found that you symptoms had to do with your APS. Therefor it was better for you to rely on the Neurologist this time. We have often found that Neurologists do not understand APS so well.

What did happen? Obviously you did not listen to your Neurologist that thought you ought to have an INR between 3.0 - 4.0 and that your symptoms had to do with your APS.You are now on an INR between 2.0 - 3.0

I do hope you now got an APS-doctor that understands what APS means. If not get one at once!.

What about your taatoos (I do not know what it is but I can gúess. I am from Sweden. ) If I were you I would not even think about that.

Could you please tell us what has happened with your APS-doctor? Is it the Neurologist? .

So please tell me. A therapeutic range between 2.0 - 3.0 is very low. Especially on the lower side.

Please come back to me. Kerstin in Stockholm

[bexter0021]

I had two TIAs in 2004 that they decided were from the stress of my pregnancy. Then in March 2013 I started having dizziness, imbalance, exhaustion, palpitations and tremors.went to ER 4 times for falling/ passing out and checked out fine by them all times. went to Hematologist who said yes you're positive or APS but your fine, see you in 3 years. Went to Hematologist who said yes you have APS and possibly Rheumatic Fever test is not definitive but you're too old to put on low dose antibiotics for life anyways (I was 39), went to Neuro who did MRI and said the others were idiots, he knew nothing about APS but researched it and said ALL my symptoms were a result of it. started me on Clonazapam, Amitriptyline and reffered me to my GP for coumadin........GP also knew nothing about APS but called Coumadin clinic down state. ( I live in a very rural area of upper Michigan. Clinic told them to get me to a therapeutic does of 2.0-3.0. Still have ALL symptoms except tremors and palpitations are controlled by clonazapam (switching to Neurontin this week) and now I have joint pain, numbness in extremities and periods that last 17-21 days with a few day break in between (from the coumadin I'm guessing) Unfortunately the closest APS "specialist" is 11 hrs from here so I'm being monitored by GP once a month and Neuro every three months.......

[Salty in reply to bexter0021]

Bexter, your symptoms sound suspicious for postural orthostatic tachycardia syndrome (pots) which can occur due to APS. You can screen yourself for this by checking your heart rate laying and then standing after 1, 3, 5, 10 mins. If your HR increases by more than 30 points from laying to standing at any point, you likely have pots.

[Lure2]

Nice to hear from you..........How often do they cheques your INR? Is it stable? Is it round 3.0 or 2.0? Do the clinic cheque in vein at the lab or in finger? Probably they do not know what APS is. You ought to have an APS-doctor. Go to that APS specialist!

When you have APS two things are important. 1). A diagnose. 2). An APS-doctor.

When you have found an APS-doctor you can ask for the taatoos.

Best wishes from Kerstin

[bexter0021 in reply to Lure2]

they only check once a month and I stay between 2.1-2.2

[Lure2 in reply to bexter0021]

That was what I thought. You are practically not anticoagulated! Please see that doctor 11 miles away.

Look at the Charity web site for more information. Good books also to read.

Please let us hear how you are getting on!.

Kerstin .

[bexter0021 in reply to Lure2]

I would but he is 11 hours away not miles

[Lure2]

I can understand that you think that the periods are longer etc because of too thin and much blood. I can tell you that we have so very thick blood so when we are well anticoagulated (we must be that) we just are like other "normal" people.It is difficult for the doctors to understand this. Of course we are different. Some of us have perhaps thicker blood.

I can tell you that I fell the other day and had some sores at my hand and right knee and also a distortion in my left foot. No extra blood at all on the contrary. I had just examined my INR in the vein at the hospital and it was 3.2 that moment.

I wanted to tell you that.

[Jomack]

Hi bexter0021, I too have very very heavey periods that last forever so my GP has put me on the mini pill! No periods at all now!! Jo :0)

[bexter0021 in reply to Jomack]

I was told no birth control pills due to risk of stroke......looking into getting an ablation done. Have an appt. in July.

[Jomack in reply to bexter0021]

Hi ya, I'm on the mini pill not the normal one. You can take the mini pill. But each doctor/consultant is different. It's been fine for me. Ask again. Good luck Jo :0)

[Offcut]

Tattoo's have been known to cause heart problem because the ink getting into the bloodstream of normal peoples blood. The fact that your blood is so much thinner can only increase that possibility. I have been on Warfarin since 1992 and have been told not to have tattoo's

Be Well

[MaryF Administrator]

You MUST, get full advice from the medical team who look after you regarding this issue. MaryF

[Manofmendip in reply to MaryF]

I agree with my colleague Mary.

Dave

[donnabrain]

Gosh, I didn,t even give this a thought, got a tattoo done four years ago, am only on aspirin though

[GinaD]

Ditto what others here have said regarding an APS doctor. If you join the practise of a doctor who is familiar with APS you may have to drive to see him/her twice a year. The rest of the year your specialist will talk with your local docs.

There are 2 issues that us APS patients have: First is diagnosis. Second is adequate treatment. APS is an autoimmune disease --a systemic autoimmune disease; which means that the symptoms can effect any and all systems in the body. Headache? The GP will look for sinus or neural problems. Stomach bleeding? The gastroentreologiist will look at diet and PPI meds. Heart issues? The cardiologist will look at statins and heart rate meds. Pregnancy problems? The OB/GYN will look at stress and diet. Joint pain? The orthopedist will note the everybody-has-it age related joint thinning and urge major surgery.

But, if your symptoms are caused by APS it is quite likely that none of these doctors will follow the right diagnostic track.

But even with a diagnosis this symptom blur continues. Not much is known about APS --- the syndrome (its not a "disease" because we don't understand how it starts) has only been recognized since the mid 80s. But clots can occur anywhere. But only clots of a certain size and in a certain location can be measured. Which does not mean that we patients can't feel such micro clots. But we usually can never convince non APS doctors that our feelings are real and not the result of too much worrying and nerves. if the doc can't measure it, he can't believe it's real.

So, if you go to a doctor with this bizarre relationship between a lower INR and joint pain a doctor who is not experienced with APS might think that you're just "nervous" because there is no measurable sign of a clot. But a doctor who is experienced with APS will have heard these complaints before and will connect your symptom dots to recommend different blood or immune therapies which might work.

People do not inherit specific autoimmune diseases; but they do have a genetic pre-disposition to get some autoimmune disease. We don't understand how all of these immune system errors get started. But demographic data does identify some triggers: high latitude (Vitamin D deficiency?), diet (undiagnosed gluten sensitivity) being female, and the number of diseases and CHEMICALS one is exposed to. So -- I was thinking about a tattoo some years ago. But then I was diagnosed with APS and I made the decision then to avoid as many chemicals as is practical in modern life. I clean house with vinegar, I try to cook as much as possible from my garden and pay extra money for hormone free meats. And I decided not to get a tattoo. The doctor who diagnosed me with APS warned me that raw data suggests that tattoos increase one's risk of acquiring APS or lupus.

So my decision on the tattoo was.... nah. Not worth the risk.

You have a whole life ahead of you. Many, if not most of us on this site lead normal lives. We hike, we ski, we work, we travel, we raise families. But this is a life long disease. As yet we do not know how to correct that immune system error. But this disease can be managed. The sooner a new coagulation issue is spotted and treated, the better. Which is why having an APS specialist that you see--even if only once or twice a year--is crucial. "Pain in the hip which is worse when your numbers are under 2? Well. Let's up the warfarin. Or try a different anticoagulant. Or plaquanel. If a small bone clotting issue is causing the OA we don't want things to get out of hand and lead to hip replacement surgery, now do we?"( written by the woman who had stopped seeing her 5 hours distant APS specialist just as the hip pain increased. I had to have my hip replaced at age 58.

Could more aggressive blood or autoimmune treatment have saved my hip and saved me from years of pain? Or are the orthopedists right and my joint thinning at such a young age had nothing to do with blood flow? I don't know. But I wish I had kept that distant APS doctor just in case it might have.

[Lure2 in reply to GinaD]

I do agree to this excellent "reply" Well said indeed!

Kerstin

[bexter0021]

Thanks for all the replies. Gives me a LOT to think about :l

[CaliforniaGail]

Yes, good replies. I'm forwarding it to my 27 year old tattoo loving daughter who hasn't been APS tested yet (nor has any troubling symptoms at the moment) but I'll point out it runs in our family so maybe it might slow her down getting more tattoos! She's up to 4 or so now and wants more, sigh.

And a note to Kerstin about a 2.0-3.0 INR "being very low".

Bexter is in Michigan, and here in the USA that is the normal range protocol.

I argued to make mine 2.5-3.5 and received reasonable feed back from my GP and the Coumadin Clinic saying No. I had hoped to feel better with a higher INR which is mentioned here so often, but I couldn't really say I felt better the times I did test higher (but know we all react differently.) The rheumatologist put me on Plaquenil and since then I've felt fairly good, so 2-3 works for me. Over 4 years without clots.

I have stayed in range while eating a good deal of cinnamon, garlic and ginger (and red wine) which are natural thinners, so perhaps that helped with the warfarin to be clot free. Probably luck too.

[Lure2 in reply to CaliforniaGail]

Hi, It can be the normal range protocol here also. But to cheques the INR only every month and to be on 2.1 - 2.2 should be too low for must of us. I selftest and notice how important it is to be in range. My doctor has suggested 2.5 - 3.5. I try to be at 3.5 to feel "safe".

But as you say we are all different.

Best wishes to you from Kerstin in Stockholm

[Suzypawz]

I have tattoos & I still have them done now, my inr range with warfarin is around 2.8-3.5.

It depends on the individual plus we're prone to infections more, some will advise you no....but it's up to oneself to make the decision