I apologise but this is likely to be a long post!. I finally got a diagnosis of aps earlier this year, at my last rheumatologist appt in Dec (before 2nd test results), I was told warfarin would be prescribed if aps confirmed which it subsequently was. So I prepared myself, researched warfarin, asked on this site about alternatives etc. I went to my next appt on Tuesday this week happy that I might actually be feeling better soon.....and was stunned to be told that I wasn't considered a clotting risk as I hadn't presented any clots so far and wouldn't be prescribed anticoagulant but recommendation of flight socks if I was taking a long flight!. I am also suffering from excruciating leg pain and other symptoms which seems to point to vit d deficiency. The rheumy obviously suspected this as she examined shins for fractures etc but didn't order a blood test or any vit d tablets, injections or anything else for that matter but has asked for mri scan of my spine for nerve damage and next appt 4 months. Now seriously despondent!
Back to square one.: I apologise but... - Hughes Syndrome A...
Back to square one.
I'm sorry you had a disappointing visit.
I usually come away from rheumatologist appointments feeling quite let down and angry. It is really hard to find a good specialist!
Quite often we need to research what we need and then stand our ground with what testing we need and medication we need.
The specialist is likely following normal procedure in not prescribing warfarin straight up but there are other medications that might help you feel better. Has the doctor prescribed any medication for you?
If not perhaps ask next time about plaquenil and aspirin. If you find you aren't coping or feel worse see if you can get another appointment sooner or perhaps seek a second opinion.
I would have thought the your specialist would have done a full blood screen including vit d levels. If not perhaps see if your GP will authorise some further testing.
Getting good treatment is not an easy journey so I wish you all the best.
Yes my immunologists. Take same approach about warfarin. You sound very similar to me. I have had Lupus and APS long time now. I am fit and healthier than most but yes have lots of the usual symptoms luckily all under control, I think. The clot side of it is very worrying. I take aspirin tried plaquinil but it caused my middle vision to distort and my muscles to twist. I take Vit d. High amounts of Vit C. All the Vit B (good quality). I do have Mitral valve prolapse and have been feeling my body under high pressure pulse high. So I now take 1 full telmisartan daily. I now have a high fat diet no sugar no carbs. now lots of symptoms stopped. Was feeling tired with diet and realised I need more salt. I would say things are great again. Work well with local doc she is learning like me she does a lot of research for me.
Many specialists, who admit they have no real answers. Get the mri’s done. They found lots of damage on my Mylin Sheath but nothing on the spine MRI. Also found MS like issue in the spinal fluid. I do have numbness tingling and lots of tinnitus. Used to have joint panes. Farmer recommended 1/2 tsp gelatin daily ( as he did for cows) all joint pains ceased and no more gelatin.
What I am trying to say is test what you can, keep an open mind, try suggestions. Look at your diet. Learn as you go to get it working for you. If your specialists won’t allow warfarin thennot a lot you can do. Like you mine will wait till a serious clot happens. My immunologists say my clotting is micro. warfarin will not be effective???? Who am you to argue. I lead an active healthy life with aggravating weird healthissues that pop up, to test me.......
Keep on. This site and keep learning. Good luck to you
Hi again!
I looked at that beautiful photo of you and the ocean (?) behind you some time ago.
I know you have no Specialist and only take Aspirin but still have symptoms. I also have microclots but triplepositive with high titres and need anticoagulation with Warfarin.
They can not say you have microclots and do not need anticoagulation!
I wish you could ask your Doctor for a trial of LMW Heparin and see if you feel better.
You know that I would now tell you to get a Specialist for your APS, SLE and MS (?) but I wonder if you should take that advice? Not sure.
Take good care!
Kerstin in Stockholm
This answer today was meant for Linda Morrell.
Kerstin in Stockholm
Good morning. I do listen and I do understand and sometimes we are caught between a rock and a hard place. I respect all the advise given as I know you have all been there and don't want us to make the same mistakes.
I like many APS sufferers. have no specialist at hand that can give 100% answer to the type of treatment. I have had rheumatologists who missed the problem with the lesions, still have neurologist, I will see him in few months he would not recommend I take warfarin, but if some other specialist did then so be it, he would not take it HIMSELF for my condition. The best so far has been the Physician who first diagnosed years and years ago now long gone and my new immunologist, who gives me time and understanding. is remedy plaquinil gave to many issues, I am on Aspirin for ever and have had bad episodes on Plavix and Plaquinil. I am due to see my heart specialist soon so it will be interesting to see his opinion. I have not researched heparin ( always thought it was another anti malaria type drug like Plaquinil),
Plaquinil not going there again.......
At present things ticking away OK but as we all know they can change so quick.
I will do some research on Heparin and ask the specialists their take on it.
Thank you for your help and guidance. one day no doubt I will be saying like you warfarin is the answer but not willing to kick and scream to get doctors to put me on just it yet. Fingers crossed the researchers start coming up with real solid answers and cures. Lets all hang on as best we can till then.
If I was still living in the UK. I would go to London. but not expected over there for a 18 months or so......
Linda
I know I am nagging .........and I have forgotten where you live (not in England I understand) ..........but we do need a Doctor who has had patients before us with APS and knows this illness and how to best treat it.
HS/APS is a rare illness that so few Doctors have heard of. Doctors usually do not like a situation when they do not know how to act.
Also autoimmun illnesses go "hand in hand" often (SLE, Sjögrens, Thyroidea) and others also. Therefor it is a must to have a Doctor specialized in autoimmun illnesses.
It may be difficult to ask those Doctors you see today about their opinion as they do not know this tricky illness that attacks our body. They all have different answers.
Warfarin and LMWHeparin (Fragmin) are the two drugs for anticoagulation that are ok for us with both venus and arterial clots (even micro-clots).
It is common in England to make a trial of Heparin to see how we react on it and feel better. Then we need anticoagulation.
Kerstin in Stockholm
It sounds horrible. Could that Rheumatologist take the responsibility if you get a stroke or heartattack? Does she think you are going to have a stroke before she acts. I know that APsnotFab has adventured this.
You have got a diagnose and now the Rheumatologist wants you to wait for a stroke!!! I wish I could help you but I hope someone else on here can give you a perfect answer how you shall cope with this. I wonder if she is an APS-doctor??
My very best wishes to you from Kerstin in Stockholm
Can you possibly make an appointment to see another specialist for a review or see the one that has told you no to the treatment of medication & explain that if you have been diagnosed with APS that maybe they could contact St. Thomas themselves to ask for advice before the conclusion of no medication?
If you have APS you really need to be on the correct medication, I was told I was being taken off warfarin about 6 years after already taking it! because no one knows if I actually had a small stroke in the beginning or not? just many symptoms which led them to the diagnosis.... I told them they were not playing Russian roulette with my life & waiting for me to have a clot before they put me onto warfarin again!!..... they agreed as I stuck to my guns.....so many more need to do the same....even if you havn't had an episode you still really need medication....I wish you all the luck in getting what you want/need.....don't give up, you are in your rights to ask for second opinions/medication or for them to do more research & get back to you, Sue
I have also been technically diagnosed with APS, but my hematologist has decided not to put me back on warfarin. My clot happened at the same time I broke my ankle in a fall and had just come off estrogen for a mock cycle in IVF. I had been on warfarin for 6 months and have been off since feb. but have not suffered an "unprovoked" clot since. Your doctor is likely being very cautious before sentencing you to a life on thinners. Trust me, warfarin is no picnic. It can be a life saver, but I myself am glad my Dr. Did not rush to put me on it for life. It made me sluggish, foggy and gave terrible headaches. I will be on lovenox for pregnancy if my egg donation works out and could very likely clot in the future...or I might not! I would just suggest that you make sure all options are explored before getting on warfarin for good. APS is such a tough disease... Symptoms can vary so significantly in one patient to another. It is important you find a knowledgeable provider. I had better luck with hematologists.
I do not think that the warfarin made you sluggish, foggy and gave you terrible headaches.
More likely you were not enough anticoagulated. You were under your therapeutic range probably.
Best wishes from Kerstin in Stockholm
Actually I was kept at a higher INR but always maintained a therapeutic range...and was taking a relatively high dose of the warfarin most of the time. When I was switched to the lovenox the sluggishness and foggy feeling dissipated. Some folks don't do as well on warfarin.
Yes I think the doctors are cautious and wait until 100% signs warfarin is the only answer because of its severity. I am quite active and found more salt and vit B stopped the bit of lethargy I had. Been reading about serrapeptase friend with heart valve issues is doing great after he reckons his statins caused lots of his issues. Serrapeptase sounds like another blood thinner and also does something to the anti platelets ( so it says) problems with the platelets I believe is the base of my issues. I will try and learn more and more, I tend not to rush in to taking new meds. when I am stable and coping well......
Good luck with all your IVF.
That's true...there are other thinners out there, but many would agree that they prefer to be safe & be on something than left just to chance that they may be ok for a month...a year...or 10 years?!
I myself in my opinion would not / will not leave it to chance! I know I'm at risk everyday when I'm out on the motorbike more than the average person because of the thinners....but the consequence of a clot when not being on a thinner does not appeal to me.....everyone has their opinion....but sometimes the gps need more info' from the right source before making decisions which can go one way or another....
Oh, believe me I don't want to be on warfarin it was the dismissive attitude I can't believe. I have been taking 2 - 75mg aspirin a day for about two years, but I put myself on that and the comment from the rheumatologist was "take it, don't take it, makes no difference". I would like to know how it has been deduced that I don't present a clotting risk? Surely all aps patients are a clotting risk just by the nature of the condition!
Is there any way you could self refer to London Bridge taking all your recent test results with you, as clearly you are needing some crucial support. MaryF
I'm getting desperate, I thought hooray got a diagnosis, things can only get better...how wrong can one be! I think London Bridge is looking like my only option to be honest. I will look into it first thing Monday. Are aps sufferers more likely to suffer Vitamin D deficiency, I have seen quit a few on this forum saying that they have it.
I do feel for you, I hope you can get to see a specialist soon & get the support & advice needed either way.....not all APS people have vit. D deficiency, I havn't......we are all different in the additional added conditions. you really need to talk to someone with proper knowledge of this condition....we all have our own opinions on how we manage it / medication etc......but you need to speak to an expert, take care, Sue
I was prescribed 320mg Aspirin and 100mg Plaquenil 2x day 4 years ago......My blood is tested every 90 days and so
far I am testing within the "normal" range.....Aspirin can't hurt
Next month i will cheque my antibodies again at the Rheumatologist. Now I am on a relative high amount of vit D and Calcium (together in a tablet). Last time I had very high antibodies. We will see.now ..........- I was operated for Hyperparatyreoidos with high PTH and high Calcium. My doctor is going to do a new control of osteoporosis.
Thank you APsnotFab.
Kerstin
Hi, thanks for that, although it does make my worry slightly more!. Can I ask what symptoms you get with vitamin d deficiency? I started taking vit d tablets myself but they don't seem to be doing any good at all.
I have a very "light" vit D deficiency. But I have learnt it is good to not be low in Vit D and when I asked my Rheumatologist she did prescribe vit D with Calcium. I have had it half a year and we will see if the amounts of antibodies (have all 3 antibodies in high titres) have been reduced perhaps. See her in July.
I can also tell you that I do not "feel" if my antibodies are mediumhigh or high. I have had them for 12 years and been tested at least twice a year. I do not worry at all about antibodies. INR is so more important!!.
APS is a blood-disorder and Warfarin is doing its job to thin the blood with practically no sideeffects at all. Only the risk for a bleed but there is an antidote for that; K-vit.
I do not feel better at all when I take D-vitamin.How do you feel when you are low in D-vit?
If I am in range with my Warfarin and live my life with healty food (CONSTANTY) exercise and enough sleep , take the drugs at the same time and eat at the same time (at least most days), make notes, then I am fine.
I did not know that my D-vit was a bit low. How about you? How do you notice?
The most important thing with APS is to be enough anticoagulated and keep in range.
Best wishes from Kerstin in Stockholm
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