Thoughts Needed

[TwoH]

As I try to wrap myself around this I am thinking something that I’m curious if you agree with it.

Anticoagulants help reduce the risk of clots and/or clots that are there. But do they also just ensure that your blood is normal? For me, I’m not sure at this point about clots but I have seen the effects of this disease in my brain. Would thinning my blood as opposed to just aspirin help?

I just wonder if not going beyond aspirin/plaquenil is allowing my blood to be too thick and then causing all of my speaking/thinking problems.

Do Drs just not consider the issues in the brain as a strong enough reason to anticoagulate?

Im going to send a message to my Rheumatologist on this but I thought I’d ask you all too.

[MaryF Administrator]

If I were in your position I would ask my main consultant for Hughes Syndrome/APS for a Heparin trial, most are reluctant to prescribe without a clotting incident, however some do get to have a trial in your position. I am sure some on here will answer you if they have had success with this. It is important to record your symptoms in case you get a sudden appointment, so you don't leave anything out. MaryF

[TwoH in reply to MaryF]

Thank you Mary. I think this wait to see my neurologist has me anxious. She is a published APS expert and I have great hopes for this visit. But it is still two months away and I am feeling out of sorts right now. My rheumatologist has recommended high does prednisone to help reduce my inflammation.

I was concerned that my second LA test if negative would put the brakes on for Dr's who do not fully understand the disease so I think that may be where I am right now.

[KellyInTexas Administrator in reply to TwoH]

Who is your Rheumatoligist, again?

[TwoH in reply to KellyInTexas]

Dr. Jane Ayala

[veganworld]

Hi

I was seen at St Thomas's for APS and had brain scans blood tests etc. At first the doctors there wanted to put me on aspirin. When mr brain scan results came back they were looked at by prof Hughes himself. He decided I should be on warfarin. Had already had clot on lung, memory probs, strong family history of auto immune/epilepsy and all the rest of it. There was a debate between them all and different opinions re treatment but I decided to go on Warfarin and listen to Prof Graham Hughes. I have been okay since, twenty years on and most of the time can function well unless my warfarin dips for whatever reason. Then I get fuzzy brain, memory loss headaches etc.That's how I know the warfarin works for me. I literally cannot function right without it. It may be worth your while if it is at all possible to try to see Prof Hughes privately to get things rollin. I don't test positive for APS in my bloods.

Kaz

[TwoH in reply to veganworld]

Thank you Kaz! I feel like you were just talking about me other than the lung clot.

I just find it interesting that a Dr can check off the list of obvious manifestations with clear indications that a stroke could occur but will not do anything more than aspirin because the second test was not positive. The logic that the impacts of this are far reaching would make me expect more. Unless I have microclots in my brain, the thickening itself caused this damage? I do know I had at least one clot in my ear.

Things have to make sense to me so I tend to talk it out. I just may have to wait for the neurologist to really feel comfortable.

[veganworld in reply to TwoH]

Hi

You will find it difficult to get on warfarin without a clotting episode. They tried to take me off warfarin last year even though I have brain lesions, had a previous clot and have been on warfarin for twenty years because its all about the risk of bleeding rather than the risk of clotting. I did use a herbal remedy that naturally thins the blood and it made a huge difference to me and I need to look it up to remember which one it was. It was from Holland and Barrett. Its the next best thing and got me through and improved everything. I will let you know what it was shortly.

Might have to go into to the store to be sure but I think it was ginkgo biloba and q enzyme 10 or something. I feel Aspirin may be better though. Never tried that. There is stuff on the internet that says that Ginko blloba can cause strokes. Aspirin is safe.

There are lots of things on the net regarding foods that thin the blood if you google it all. If you can thin your blood you will improve that muggy feeling. Only Prof Hughes will stick his neck out and put you on warfarin without a clotting incidence nowadays i would imagine. Being on warfarin does come with various risks so do try other ways if you can.

Kaz

[TwoH in reply to veganworld]

My rheumatologist has mentioned some other blood thinners that would be added before getting to Warfarin but I think because my second test was negative she is sticking with aspirin.

Sigh.... but your response was helpful! It seems that there is a hesitancy to add something where side effects can have serious results. I’m hopeful that we can find something for me.

[veganworld in reply to TwoH]

I do worry when we travel on the roads in case of an accident and being on warfarin. For Aps your blood has to be seriously thin. People on warfarin have a ratio of around 2 normal not being on warfarin is 1. You have to be between 3 and 4. Its a lot of warfarin putting in your body and there is a risk as I say. If you can find away of thinning your blood using a different method I would definitely give it some consideration.

Glad to be helpful in any way. Its good to run your thoughts by people on the forum you will get honest answers and opinions and it makes it helps with your decisions going forward.

Best wishes

Kaz x

[Tofino5]

Hi TwoH, this is exactly what I wondered about with my last post about new eye/vision problems. Is my blood too thick and causing these problems? You stated it very well, and I don't know the answer. I just wanted to let you know you aren't the only one wondering about this.

Anita in CO

[TwoH in reply to Tofino5]

Thanks! I think those on here who have been in this battle for a long time can attest to the strides that have been made in education and treatment. Those who are newer may be struggling with the fact that there doesn’t seem to be as much known about this across the medical field. Similar to the understanding of Lupus.

I hope you find some answers too!

[TwoH in reply to Tofino5]

Thanks! I think those on here who have been in this battle for a long time can attest to the strides that have been made in education and treatment. Those who are newer may be struggling with the fact that there doesn’t seem to be as much known about this across the medical field. Similar to the understanding of Lupus.

I hope you find some answers too!

[Greenmil3]

I have Cerebral APS and am hoping not to continue my decline having been on Warfarin for almost two years so far but symptoms still continue to get worse but think my INR needs to increase but it has slightly slowed the decline. Good luck with the treatment

[Lure2 in reply to Greenmil3]

Yes, if we do not have our INR in range we will not get better. It is a bit individual how high INR we need, but neurolgical symptoms often need an INR of 3.5 - 4.0 and also to be stable. As I understand you selftest but remember that there is usually a big difference between selftest and vein-blood (taken at a lab). Most often the vein-blood is lower so I hope you have done some parallelltesting to find out if you belongs to that categorie. Important and also be stable!

It is really a shame that so many of APS-sufferers go around with too low INR and do not know how to get it stable and at the correct level.

[TwoH]

It sounds like, from these responses, that Dr's are concerned with clots and treatment may be geared toward that with heavier treatment for some and aspirin for others. It doesn't sound like most Dr's lean toward treatment of cerebral issues as much.

I have an appointment tomorrow with my rheumatologist to discuss. I'm hoping she will discuss some of the other options for blood that are not Warfarin but which might help me. We will try prednisone which I really hate but right now, this is becoming a huge issue for me.

[Wittycjt in reply to TwoH]

How/what happened at your appt?

[TwoH in reply to Wittycjt]

Thanks for asking! She changed me to CellCept since this is stronger for CNS Lupus and I’m taking high dose prednisone for 7 days. She wants to wait for the neurologist to determine what else to do i.e. APS. They work closely together and I see her two days after my neurologist appointment.

[Wittycjt in reply to TwoH]

Good luck