Long term Clexane or any form of heparin

[Joncostarica]

Hi guys ,

On july 25th of last year i was diagnosed with several small blood clots in my lungs . I have no blood disorders or genetic conditions. After a deep ultrasound of my legs they could never find where the clot came from or the cause . I am 32 dont smoke , dont drink not overweight so mine was " idiopathic " . The only PROBABLE cause is a long flight i did 6 weeks earlier .

Anyways after 4 days of clexane i was started on Xarelto that gave me terrible side effects.. refused to try warfarin due to the INR nightmare so ive been with 2 shots of clexane daily x 60mg every 12 hours. Dont really mind the shots and bruising as long as i know im covered. The doc may want to put me on 40 mg once daily as a prophylactic dose very long term. Anyone here been in this boat?

Thanks all for reading

J

[Manofmendip]

Hi

I am on 15,000IU of Fragmin daily and I would never, willingly, go back on Warfarin.

Dave

[Joncostarica in reply to Manofmendip]

Hi there thanks for your input what is the diff between fragmin and clexane ? Does it have an anditote ?

Ty for your support

[Manofmendip in reply to Joncostarica]

They are both Low Molecular Weight Heparins. I don't know about antidotes, as I am not medically trained, sorry.

I see that my colleague has answered you too.

Dave

[Joncostarica in reply to Manofmendip]

Awesome ty im thinking of moving back to Cali . How has your exp been with Fragmin ? Any mayor bleeds or complications ? I would much rather poke myself once than twice for the next 10 years lol

[Manofmendip in reply to Joncostarica]

Hi

No bleeds and feeling much better than on Warfarin. I've been on Fragmin over 7 years now.

[Joncostarica]

Hello thank you for your kind reply I must admit I am a little bit of shock from what you just wrote me I have had over the years several balance issues chronic migraines and cognitive issues as well there's fibromyalgia in my family. I did a full blood panel for blood disorders all negative I don't think it included the Hughes test.

[MaryF Administrator in reply to Joncostarica]

Hi having read through this and the replies, you appear to be a classic case, and it is important that a) you have all 3 blood tests done, (do them at the hospital as the samples taken are time sensitive). I enclose the blood tests you need here, also get a B12 test done, plus vit D and also Iron, and please get your thyroid checked out, although I will say that the NHS only does the TSH test which in my opinion is not fit for purpose.

I do extensive and private thyroid testing, which showed up mine more accurately, most people I have met who have so called Fibro if they go and do more extensive thyroid testing, plus the D, B12 and Iron these levels are often all wrong. The trio of disease often described by Professor Hughes himself is Hughes Syndrome/APS, Sjogrens and a Thyroid problem.

Blood tests: londonlupuscentre.co.uk/hug...

MaryF

[jetjetjet]

Hi jon - I am an APS triple positive , Primary Male in my early 60's { as APS not Fab made mention of } I am on warfarin as i have 25 Dia. medical problems and most directly related to my APS. My INR's are very unstable and have always have been. I test every three days , not so much as to change my warfarin as to make sure i am not plummeting or sky rocketing out of sight.My concern is being to low as i am a clotter -2009 i had clots in both lungs and left leg , groin , neck , in under left arm. My hemo is a good DR. and listens to me and what research i a have done. I can be 2.4 on Tues. and then a 9.1 on Friday. I us only the Enox for bridging purposes only, for surgeries ETC. We all are different ,and react different to these meds.So for me teh battle with Warfarin is where i will stay , most the new oral's are not tested for us especially some one like myself.This is my situation and my opinion. I have discussed with my Hemo and she agree's with me as to the not having anything as strong as the warfarin for me the clotting DVT problems i have and still do get in left leg are a concern and at some point we may have to do something else and by then lets hope there are more proven choices out there . we are all different and we need to do what works for us as an individual's .Well this is my 2 cents worth Ha ha . If i can be of more help or any questions you may have please get back to me .

[Joncostarica]

Thank you again for your reply unfortunately I don't know if I could find a doctor that could help me trip in Costa Rica I will have to do some research on it .

[Wittycjt in reply to Joncostarica]

Well at least you can start by having the above mention tests done. Then be sure to get copies of all results for your own personal records. Best of wishes. Cindy in NJ

[MaryF Administrator in reply to Joncostarica]

On this paper is a list of doctors in Latin America at the top, may be useful for contacts: link.springer.com/article/1...

MaryF

[SueLovett]

Hi I have been on Cleaner for nearly nine years with no obvious side effects except bruising. There is a drug that can reverse the effects hope this puts your mind at rest. Hope you get the appropriate care soon.

[Wittycjt]

Cleaner? Do you mean lmwh? Warfarin?

[KellyInTexas Administrator in reply to Wittycjt]

Probably an auto correct from clexane, Cindy

Although liquid draino might clean out these clots in the veins... nothing else is working on mine!

[Wittycjt]

Thanks Kelly

[Rosiek90]

Hi joncostarica,

I have been injecting clexane (heparin) for the lost 7.5 years. I was diagnosed at 19 after stroke. Symptoms started when I was just 8.

I'm 27 now.

I swear by heparin, however when taken daily it can become hard. Due to bruising and scaring.

Good luck!

Rx

[Joncostarica in reply to Rosiek90]

Hi Rosie ,

Ty for your reply what dosage are you on ?

[Rosiek90 in reply to Joncostarica]

I'm in 80mg daily. Which feels better than 60 twice daily - which I was in before. What about you? How are hit funding it? Rc