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Sticky Blood-Hughes Syndrome Support
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What do you prefer Heparin injections or Warfarin?

For those of you that have done the Heparin Injections and then swapped onto Warfarin, which of the two regimens do you prefer? The Injections are not exactly pleasant to do but the warfarin with the INR battle is also not great either.

Be really interested to know which people prefer if given a choice.

The other thing that is just niggling away at the back of my mind is that when you take Heparin inj it would seem to me that you have a less likely chance of getting a clot where as on warfarin if your INR drops too far you could be in trouble. Am I getting this wrong?

I am due to start the twitch over onto Warfarin tomorrow with my first visit to my local Hospitals anticoagulation clinic. I am really quite apprehensive about it.

19 Replies

Heparin any day - can eat and drink what I like, no worries re INR when on a settled dose and can make up wonderful stories about the bruises when asked e.g. blood -sucking leeches in the depths of Surrey LOL!


I would like to be on heparin if I had a choice but due to the difference in cost between injections and warfarin I think the only time that people will be able to switch to heparin is for medical need.

Why not set up a poll?


I have asked aboutthe Heparin injections, only a couple of weeks ago, as now on Warfarin, and since then my body seems to be suffering from pins and needles etc if my INR is now, whereas the Heparin so easy to use. However, I was on low dose hep when I had the TIA in April, so do not know why the consultants considered Warfarin, so must ask. The consultant when I asked said he would talk to another consultant before descision, but he is also referring me to St Thomas.



I think I'de probably like to try heparin injections at least for a while. A break from the constant up and down with the inr!!! If it would stay high end of range would be ok, but it doesn't. Plus having done loads of research, found an article written by an md that suggests patients with lupus anticoagulant positive aps do not always get correct readings on blood tests for inr!! I am positive aps with la, doc is doing comparison venous sampling only after i showed him article.

Peace of mind of heparin injection.

Take care gentle hugs sheena xxxxx jessielou xxxxx :-) :-) :-)


I was taking warfarin for years with unstable INR then I found out I should be getting the injections to stop me having problems when my INR went low.

So now my INR range is kept higher and if it goes low I get the injections as well as the warfarin.

I find the injections very painful and the bruises really hurt when they start to overlap each other.

I prefer the warfarin for ease of use but I prefer the injections when I know my INR is low because I feel safer having them too if my INR is low. As soon as I get a reading back in my range I go off the injections. It usually takes only a few days to get my range back. I had a whole week of injections when we had the double bank holidays earlier this year as the INR clinic was shut. I could hardly bend down due to the pain from the bruises.


I take warfarin. I don't like having to go for the blood checks but there's a certain comfort in knowing exactly where I stand. Because of residual damage from a stroke, I have limited motor movement in my right (dominant) hand. I would not want to have to give myself shots.


I get the injections from nurses when I need them, they are all so kind.

Anyone with eyesight problems or impaired dexterity would not be expected to self inject.

As for whether one can have a clot when on heparin, I don't think any treatment will guarantee to be 100% effective, also my consultant did explain that they calculate the exact dose of the injection we should need.

I was initially given to understand it was calculated on body weight but she said there's more to it than that. Also the harmful antibodies don't just cause clots, they damage cells in other ways too.


I was on a trial of heparin for three months and it was wonderful. Then I went on to warfarin as a self tester. I would probably say that I preferred heparin, but was told that you are at risk of osteoporosis and because I have steroids from time to time don't want to take the risk.



I was on warfarin for about 12 years from the age of 24 and to be honest never felt quite 'normal' and along with the weekly blood tests which whilst nearly always in the early morning made it quite a pain when I work from 9am - 5.30pm on the odd occasion there was a blip or my blood didn't behave I was given heparin injections, then at the end of last year I was switched to heparin (80mg daily) I feel like I've had my life back and despite having a stomach with constant lumps and slight grey tinge to it (and have now moved to the arms for variety) I couldn't be happier, I can eat what I like (no more monitoring the greens) and no longer worry too much if I've had a glass of wine too many. I take plaquinel and aspirin as well and Professor Hunt said that just perhaps the warfarin and I weren't a match made in heaven. As long as my bone density scans remain unchanged I'm hoping to stick with the injections!



Hi I am on Warfarin 120mg for life and was under the impression that greens, garlic, st johns wort, cranberry, alcohol etc should still be restricted or not at all because Heparin is still an anticoagulant. I also do not have bone density scans - am i suppost to have those scans ?? Nobody has mentioned this - only put on Calcium and Vit D because of the high risk of Osteoporosis. I suppose we all react differently to the Anticoagulants but to be honest i have not felt right or 'withit' since i was put on medication for APS. I am hoping one day that all the pain etc will disappear and no more medication but its reality we have to face !! I shall never forget the consultant saying that when you are on anticoagulation you will be fine and lead a normal life. I am still waiting for that day !!!!


Its a real mixed bag isn't it and proves so much how we are all so different. I had my first experience of the anticoagulation clinic this morning which took two hours!! Most of that was spent waiting for my script from the pharmacy.

The real bummer was being told they wont let me use a coagucheck machine so I can monitor my own INR eventually. The thought of going through what I did today is very miserable.

I dont find the injections that bad as long as you do them really sloooowly!!! Also dont have anything too tight around your waist afterwards. Having done that I have avoided bruises. Neither are really great but staying alive is the objective!!!

I have taken up travelnuts suggestion and put in the idea of a poll on this. It would be interesting to know if costs are preventing those who would prefer the injection route from having them. I asked today why I could not stay on Heparin and was told they have long term implications but they did not say what they were. Perhaps they were to the PCT's bottom line ha!


I have tried the injections in my thigh-oh my god it did hurt so gave it another go in the thigh the next time and I am not going there again. It Hurt and the bruise my god was enormous !! So back to the stomach to add to the others !!!! The only implications with Heparin is High risk of Osteoporosis as far as I know but nobody had told me otherwise. I feel that I have not been told everything - Let me know if you know any implications that I should know about because these medications scare me. I need to know as i am on it for life !!! Cheers x


I have been on Warfarin for 6 years and self-monitoring and self- medicating for 5 years with a Coaguchek XS machine so I don't have to attend anti-coagulant clinics any more. I can keep a close eye on my INR and make fine adjustments of the Warfarin doses to keep my INR within range pretty successfully. I wonder why they told you that a machine is no good for you? The Hughes team at St. Thomas' is very supportive and encouraging for APS patients on Warfarin to self-manage, if it is appropriate.

On occasions, it has been necessary to give myself Heparin injections when my INR has dropped and although they offer protection against clots, I find them inconvenient to administer if I'm out and after a week or so I begin to hate doing them! I look like a purple-people eater!!!

Good luck!


I will eventually be put under Tommy's but for the moment because I am under my GP they dont do any warfarin checks and send patients to the Hospital...hence this problem. I think I will get a coagucheck anyway because for my own piece of mind I want to know my INR is good (and I dont want to miss the offer thats on at the mo).

When I called the Coagucheck people they did tell me though that for people with Hughes that venus blood checks was better and it is one of the conditions that they do tell you that when you enquire about buying a machine. This is the reason my hospital will not let me use one and do my own monitoring. I am going to hope for a half way house perhaps. They are calling me back tomorrow with more info and I will let you know.

Just done my injection and swallowed my pills - my house looks like a bloody chemists shop!! LOL


As if they knew we were discussing this topic, Medscape have conveniently released a trial result right on cue. It makes interesting reading.


If anyone has trouble accessing it I will copy and paste the article.

1 like

you do have to be a registered member of medscape to read any of the articles xx


Thanks for letting me know Hazel. I will copy and paste on here for you. Be back soon with it!


Here is the article, sorry its taken so long!

From Medscape Rheumatology

A Warfarin Alternative in Antiphospholipid Syndrome

Kevin Deane, MD

Authors and Disclosures

Posted: 09/30/2011

Efficacy and Safety of Long-term Low Molecular Weight Heparin in Patients With Antiphospholipid Syndrome

Vargas-Hitos JA, Ateka-Barrutia O, Sangle S, Khamashta MA

Ann Rheum Dis. 2011;70:1652-1654


Occasionally patients with the antiphospholipid antibody syndrome (APS) do not respond to warfarin therapy, either due to a new clot even with presumed adequate warfarin therapy or to inability to tolerate warfarin due to conditions such as pregnancy. In these cases, low-molecular-weight heparin (LMWH) may be an alternative, but there are limited data regarding the efficacy and safety of long-term LMHW use in patients with APS. Therefore, Vargas-Hitos and colleagues investigated these issues in patients undergoing long-term therapy with LMWH for APS.

Study Summary

The authors performed a retrospective chart review of 23 patients with APS who were treated with at least 1 year of LMWH (43% patients had primary APS, 57% secondary). The authors evaluated the efficacy of LMWH in terms of recurrent clots and adverse outcomes, including bleeding, heparin-related thrombocytopenia, and osteoporosis.

The patients were 96% female, 96% white, and were a mean age of 42 years. They had a mixture of findings associated with APS, including venous and arterial clots (56%), pregnancy morbidity (26%), and central nervous system disease (17%) that included headache, seizures, or peripheral symptoms with abnormalities on brain MRI (high-intensity lesions). The most common reasons for a switch from warfarin to LMWH were clot in spite of adequate INR on warfarin (39%), followed by no improvement in neurologic disease, bleeding, and patient preference. Enoxaparin was used in 69% of patients and dalteparin and tinzaparin were used in the remainder; the median duration of LMWH use was 36 months.

After switching to LMWH, of the 23 patients, 20 had no recurrent thromboses, although it is not clear whether the other 3 patients had recurrent clot or just failed to have improvement in other clinical features presumed to be due to APS. Of the patients with neurologic symptoms, several had improvement of these symptoms while taking LMWH, although the specific numbers that improved are difficult to ascertain from the paper. In terms of side effects, 23% of the patients had osteoporosis, although all were also taking long-term corticosteroids. There were no reported episodes of major bleeding (defined as need for transfusion, drop in hemoglobin of >2 g/dL or bleeding at a critical site (eg, intracranial), or heparin-related thrombocytopenia.

The authors concluded that LMWH may be a safe and effective alternative to warfarin for patients with APS.


This is a small study but it still represents one of the largest series of patients with APS treated with long-term LMWH, and a reasonable take-home point is that LMWH may be an alternative in patients with APS who do not respond to or are otherwise unable to take warfarin. It is not entirely clear what the central nervous system disease in these patients represented because there may be overlap between multiple sclerosis (MS) and APS serologies, and multiple sclerosis may be related to abnormal central nervous system venous outflow which may be improved by anticoagulation.[1-3] Further prospective, controlled studies are necessary to determine the optimal use of long-term use of LMWH in APS, including what specific agent (enoxaparin vs others) is best and what role anticoagulation with any agent -- and in particular, LMWH -- should play in patients with central nervous system disease that is not clearly thrombotic or related to elevated antiphospholipid antibodies.


Following this thread with great interest and this warfarin vs heparin question is exactly what I am querying also...although I have not been diagnosed as yet but it is very interesting to read xx


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