Most people seem to be on warfarin, but I refused because of collapsing several times with strokes, and I thought if my blood was too thin

[pluto5]

and I collapsed I might have a brain bleed.

I am on Persantin (Dipyridamole) which is for stroke prevention because I have had several full strokes.

Is anyone else on that? I do have APS.

[Manofmendip]

Hello

You might ask about going on Fragmin, which is given by injection once daily, it is less dangerous, so I'm told, than Warfarin. I was on Warfarin for 9 years but am now on Fragmin and would never go back.

Dave

[pluto5 in reply to Manofmendip]

Dear Dave

Thankyou for your reply but I think I will stay on Persantin, because I can just take it (with all the other pills), I don't think I would want daily injections.

Nice of you to suggest the alternative. I haven't heard of that.

Regards

Par

[Lure2 in reply to pluto5]

Hi Pluto5,

If you are not feeling well (You are diagnozed APS also) on your anticoagulating drug please talk to your APS-doctor about it. You can together find something that will suit you. I know how important it is to be well anticoagulated.

If you can not talk to your doctor or if he will not listen to you or he does not know APS try to find another doctor .

I am a bit worried about you. Hope you do not mind. I know for I have also had to fight to feel better. Best wishes to you from Kerstin

[Mikki54 in reply to Manofmendip]

Hello Dave, I am newly diagnosed and 61 years old. Why do you prefer the Fragmin vs Warfarin?

[Manofmendip in reply to Mikki54]

Mikki

For me:

1. it gives a more consistent anticoagulation, so I feel much better on it;

2. after 7 years Warfarin stopped controlling my symptoms for some reason; and

3. Fragmin is a daily 'fit and forget' item, a quick injection, then no blood tests and no issues with what food or drink I can take.

Best wishes.

Dave

[Mikki54 in reply to Manofmendip]

Thank you, Dave. I've just been diagnosed and I'll confess I'm on an unpleasant learning curve. Obviously, no one wants this condition. I will definitely look into Fragmin. The prospect of living on warfarin has me depressed. I am planning on tightening up my diet so it is an anti inflammatory as possible which should help with my overall health. I am slowly coming to terms with the fact that I may never get off a blood thinner. Certainly, worse things can and do happen to people...  Many thanks for your time, Mikki

[Manofmendip in reply to Mikki54]

Good luck and best wishes. Dave

[Hidden in reply to Manofmendip]

Hi, Dave.  I've been on this blog for some time.  You, Mary, and Kerstin have been my rocks!  I was just wondering-if warfarin continued without trouble, would you have stayed?  I seem to be fine on it, only APS, though, no SLE, MS, sjogrens, or any of that. Although, I feel it makes my crabby, I'm really only worried about my number (which my hematologist raised to 2.5-3.5).  

Regards, Mary Anne from Chicago

[Manofmendip]

Hi

I find Fragmin much easier than Warfarin, as it doesn't require blood tests or care with diets. It's a 'fit and forget' option.

Dave

[loretta1106 in reply to Manofmendip]

Is Fragmin available in generic? Thanks Dave.

[Manofmendip in reply to loretta1106]

Hi Loretta

I don't think Fragmin is available as a generic.

Dave

[loretta1106 in reply to Manofmendip]

I just looked up the price Dave and here in the US, it's about $3,000 a month--wow--my insurance would not consider paying part of that for sure. Oh well, will stick with Warfarin for now.

[Hidden]

I agree with Kerstin.

Collapsing with strokes..did you have MRI? x

[Sal0712]

Hi there. Four years ago I had three blood clots and a bleed on the brain and was given six hrs to live. Obviously I fought hard and am still here today. Although I have never had a full blown stroke, I do at times have some stroke like symptoms. I am on warfarin and wouldn't be without it. I would rather my blood be a bit thinner, and know that I am at less risk of having a clot leading to stroke, or any other complication caused by clots. If you really don't like the thought of taking warfarin, you could discuss with your GP about taking a daily aspirin to limit your chances of having a clot causing a stoke in the future!!