Heparin trial

[Elfie1]

Hi everybody, bee to see my rheumatologist, acl.Antibodies running very high so the prof. Wants me in hospital within the next week. He is stopping the aspirin and starting heparin and cyclophosphamide. I'm a bit scared, has anyone else been on this? Grateful for your reply Thanks Elfie.

[Lure2]

Hi, If you have only been on Aspirin before it is pehaps time to go to something else. Haparin I have heard of is often used. I am on warfarin after Aspirin.

I have Lupus Anticoagulant and all the other antibodies (Cardiolipinantibodies, Beta2Glycoprotein1).

I have had them in high titres since 2002. Always positive. I am so used to that and I have not been thinking of it. I do not think you must be worried because of this. We are all individuals and different. It is good that your doctor reacts on this, I think he is doing the right thing, Aspirin is often not enough for APS.

Best wishes from Kerstin in Stockholm

[Elfie1 in reply to Lure2]

Hi kerstin. Thanks for your reply I 'm glad the docs. Are doing something because I certainly don't feel good lately. He said if the cyclophosphamide doesn't work he will try rituximab. Best wishes elfie

[Lure2 in reply to Elfie1]

Good luck!

Kerstin

[loretta1106 in reply to Lure2]

Hi Kerstin. What is considered high for APS. I had 70,000+ after March stroke and 2 months later it went into the 50,000 range. Does that sound right. I'm seeing my rheumatologist on Monday and want to know what I should be asking her.

Have a great day.

[Lure2 in reply to loretta1106]

Hi Loretta,

First of all we have at least 4 different antibodies with different ranges. I do not know what type of antibody or antibodies you have Loretta. Then i think we can not compare our rates here in Sweden with yours in the US. It is not like with the INR. That is about the same range.

I have had very high antibodies from the beginning. I have not thought much about it and the doctors have not spoken of it. I have chequed at least twice a year since 2002. It can differ sometimes though. But asways high and positive.

What can be interesting to know is what sort of antibody or antibodies you have.

What is important is if your INR is in range and that you feel good with your warfarin.

It is important to cheque the INR often so you know when you get too high or too low as soon as possible

Best wishes to you from Kerstin

[Ozchick]

I had Heparin for a year after 6 months of unstable INR's and was all going great until I developed a 15cm clot in my groin

[Good4u]

Hi, I undertook about 3 - 4 months of cyclosphomide infusions to treat my vasculitis which I also had with APS. I was on aspirin at the time to treat APS but still had a TIA. I then commenced warfarin February 2012 and not had a problem since with my APS. I have never heard of cyclosphomide treating APS. It is a highly toxic drug with as a side effect increases your risk for cancer. It affected my nervous system whilst on it & I fumbled things. After cyclosphomide infusions I was put on mycrophenolate to keep my immune system "suppressed" . I finished the mycrophenolate in July. I've also been on plaqnil & prednisone and stopped/weaned off all those. My advice is really weigh up all options & making changes to your diet has massive impacts on your immune system. Gluten, dairy & sugar create inflammation which triggers your immune system to be over active. That's my two bits. I wish you all the best which ever way you go. Carmen from perth australia

[Lure2]

Hi Elfie, I agree with APsnotFab who is very experienced in APS. You must have a Specialist of APS. No doctor have ever taken any special notice of my high antibodies.

[MrsBL]

Hi Elfie

I have Primary APS with no other illness. I had a lot of major clotting episodes and they were getting closer together. I was put on Psyclophosphimide and them onto Rituximab, one on Mychophenalate permanently. These treatments were used to re-set my immune system in order to get the APS to stop telling my blood to produce clotting episodes. Obviously this was the simplified explanation which my consultant gave to me. Anyway, it has worked so far. Please let me know if I can help by answering any questions you have.

[Good4u]

Hi Elfie, I will add that the cyclosphomide & mycrophenolate put my vasculitis into remission. I believe these drugs "reboot" the immune system. I tested my APS antibodies about 6 months ago & they were negative for the first time ever! I retest again in about 3 weeks with warfarin being the only drug I'm on this time. Will be interesting to see results. We are all unique & need to find what works best for our bodies.

[GinaD]

I remember my deep concerns when I was first prescribed meds for my APS. I can totally relate. But hold this thought: the possible -( probable?) results of not treating can far exceed the possible side effects of treatment.

Please let us know how things go with you. I'll be sending positive thoughts from the States.

Gina

[Elfie1]

Hi Apsnotfab,they r admitting me becausei don't live in leeds and my mother is also in hosp. so i 've been driving to and fro and i also need a head scan .and yes prof . Emery is a Aps . Specialist.I'm still a bit aprehensive though .will i loose any hair with the cyclo.?

[Elfie1]

Gosh Aosnotfab. You're scaring me a little now, the prof seemed to go by my symptoms of severe migraines and my high titres of acl. Antibodies. Should I be questioning this? I admit I'm not an expert on this subject, so I suppose I put my trust in him.I'm not sure what my inr is since I've only ever been on Aspirin. Elfie