Sticky Blood-Hughes Syndrome Support
8,329 members8,507 posts

Still scared

I am still scared!! My rheum told me that the borderline positive is nothing to worry about.. But she also told me that people with APS live for 100 years just on asprin.. After reading this doesn't seem all that true.. I started myself on asprin because I am so scared something is going to happen.. What should I watch for?? Is the asprin going to protect me enough ?

5 Replies

Everybody is different and need different levels of treatment. Only a doctor can tell you for sure. If treated properly theres usually no problems, it is always possible something could happen even when in theraputic range but I think the stories you've read are in the minority.


Holly you should listen to your Doctor and also talk to them about your anxiety which clearly needs to be treated too. If you continue to worry like this it won't matter what treatment you are on so please go speak to your GP and at the same time discuss the appropriate level of Aspirin too.


Holly so if I get this totally wrong but what age are you? Som of what you describe is common at the onset of peri menopause especially anxiety and panic plus bad migraines where not suffered before.

If your rheum is unconcerned you really need to listen to them at this point.

Now you have read up about APS you can be vigilant and keep yourself safe. Should however discuss your anxiety with your GP as in this uncontrolled state it will make you feel worse. He will also be able to look into the benefits to you of aspirin at this time.


Holly: I noticed you said you put yourself on aspirin. Aspirin CAN HAVE ILL EFFECT if you are not treating a symptom. It can cause diminished hearing or total loss of hearing, It is linked with macular degeneration, it can cause ulcers, and many other unexpected symptoms . (google it!) If your doctor put you on aspirin it is highly important you take it every day. My APS is managed on one 325 aspirin./day. I was sick all my life. I was just diagnosed in 2010 with APS. I did not take an aspirin until diagnosed for that illness (I have multidiagnoses). I am doing pretty well at 60. Turning 60 was harder than managing this disease. Sometimes it behaves, sometimes it reaks havoc with all my other diagnoses and we don't know what symptom is coming from where or which disease.

For the most part if APS were put on a scale of 1-10, I would probably be a 5 now. But MOST of the people on this site have many more complications than I because APS is active in them to a higher degree. I am fully aware this fickle disease could turn on a dime and become much more serious than it is. The facts, however, are that it is completely managable right NOW. That's all I can worry about is NOW. Because I may not have to worry about something that may never be. So worry about what you have to. When it's time to worry your body will let you know.

Also, I agree with all the patients above and I think you should get a therapist to help you through this. Your fear problem is as serious, if not more serious, than the degree your doctor thinks your disease is at. The MD could have done a better job of settling you with it though. This is the type of situation that therapists are for and believe me, they can certainly work wonders if you get a good one that you interact well with. You never know until you try. You may find a therapist can be a large aide with other matters in your life. They are also great finders of free resources. Handy people to have around you and you always know someone is there, for YOU, and no one else has to know.

Frankly, I think it would be wonderful if this site had a volunteer pro-bono therapist to donate when necessary. Many people could use it occasionally and mostly..... you won't need to be scared. Do your reading on APS and aspirin. Education is a wicked weapon.

Smiles, hugs and a ho-ho-ho,



Hi, I can understand your fear, were all more feared of what we dont know, but to know means you can face and fight and be better prepared so knowing is a good thing,and try to take comfort in that but dont let it take over your life. Many people have this and never have anything bad happen to them. Keep yourself well,and try to keep healthy and avoid triggers. Were all here so youre not alone,and you can ask anything on here that you may not want to ask other people or talk about outside of this group,or show your fear to friends and family, this is what support groups are for. Plenty of people on here are very willing to give a gentle kick up the bum if your down and need that,and plenty more to give advice if thats what you want. Try to look at the positives,you know and are in the best place,and dont read the posts that may upset you,or delve in to the murky world of the internet unless its a trusted site. Do you think counselling may help you come to terms better and look at things in a better way instead of panic? Like any illness you go through all sorts of stages of emotion as you come to terms with it, but realistically if you spend too long a period in any one state then please seek help and enjoy lifexx


You may also like...