Confused and worried

I was diagnosed with APS after having 3 miscarriages and raised Igm levels of 21. Apart from the miscarriages I feel fine, so Dr Khamashta said I have pregnancy/obstetric only APS and advised I take 75mg aspirin daily.

I'm worried because I've been reading about some of the awful symptoms some of you have with APS, will I go on to develop these too??? Can you have APS with no symptoms??

My Igm levels aren't too bad at the moment at 21, do these levels go up and down daily or stay the same for a while? Should I get the levels checked regularly, is it when these Igm levels go up that you get more symptoms??

I'm trying just to take my aspirin and not think too much about it, but it's hard. I keep wondering what my chances are of having a stroke?

I recently went on a long haul flight and was advised to inject with heparin as a precaution.

I'm new to this site, sorry about all the questions just hoping someone might be able to help.

Anyone know of any support groups in Berkshire?

Thanks HWickers

12 Replies

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  • Hi HWickers,

    I have to admit, I've been having the same thoughts as you in terms of 'confused and worried'!!

    My little story is that I went on a long haul flight in January 2010 and developed mega leg pains, I flew home again and found out it was a DVT. Three months later, APS was diagnosed and I was put on lifetime 75mg Aspirin a day. 12 months after that, my doctor at St. Thomas's hospital told me it would be best to be on Warfarin treatment for life instead of Aspirin to give me the best protection. I started Warfarin last Wednesday and shortly going to moving on to self-testing in the next couple of weeks.

    In terms of symptoms, I have absolutely none. I have a hectic home life with a wife and 4 kids, work full time in busy job and all in all feel no different than I did before the DVT!

    I am also concerned that all of a sudden my joints will hurt or my memory will fade on some days but I also do wonder if it's possible that maybe neither of these symptoms (or others) will come to me until much later or never...I just don't know, does anyone know?! But what I do know is that I'm not going to dwell on it, what will be will be and I'll deal with it when it happens. I'm going to make the most of everything I can do now, enjoy my kids and family and work as is feasible to enhance my career...

    Take care,

    Stuart.

  • As another on here who has had a long path to diagnosis... clots in legs when pregnant with my first child... but strong family history... I have had other symptoms, but have blurring of conditions due to another two things. However what I seem to see from various people on here and also in my family, the disease can affect people more deeply than other and in different ways. I live life to the absolute full, things do make me very unwell, however I am sure to a certain extent my attention to diet and exercise over the years have more than helped all my conditions. I think some people appear to have worse fatigue than others, mine certainly wipes me out periodically, however I have a sister who has had clots in legs and lungs and has tons of energy and takes no notice of it other than asprin, I too prefer not to dwell, there is a great saying 'get out of your mind an into your body'..if possible of course. When my hips ar inflamed or knees etc, I will still sit in the sun outside and lift dumbells.. However I do take the disease seriously. Mx

  • Hi Hwickers

    welcome to the site hon, glad you found us. So sorry to hear of your losses, lots of us have been through them too so we understand.

    I understand your concerns, but not everyone who has Aps get any other symptoms. Quite a few of us have other diagnos as well. There are no guarantees and i'm no expert just a patient like the rest on here, but you may not get any other symptoms.

    All i can say is try not to worry, learn as much as you can cope with, Hughes syndrome foundation site is a great site for info and support.

    It is scary when first diagnosed, but you not alone. If we can help we will.

    I dont know what the chances of having a stroke are, but aspirin will help protect against clots, clexane for flights is great too.

    Is your gp supportive, maybe see a haematologist or rheumatologist if you concerned hon. If I've learnt anything from this is keep pushing till you get answers you need.

    Even those of us with lots of symptoms, can cope with the right meds.

    I hope you keep well. Take good care of yourself. Lovely to meet you.

    Gentle hugs jessielou x x x x x :-) :-) :-)

  • i had raised anticardiolipin antibodies in all of my 5 pregnancies and they told me it would only affect me in pregnancy and for 6wks after so i think for some people this can happen. Mine always dissapeared after this period, keep taking the clexane and asirin through any pregnancies and for 6 wks after. i chose to stay on aspirin for my own sake because i think its a wonder drug and lots of people should be on it. Maybe you could ask your gp to refer you to rheumotology and explain your concerns. And if anything starts to change your already in the system and you'll get an appointment and its also important that its flagged on your records as a possibility but dont live your life by it hun. I dont understand blood levels to be honest but ive been diagnosed on a clinical evidence rather than blood although one of my immunoglobins were elevated recently. Stick with us and just see if any symptoms however menial are similar in the future to any of ours,but you'll probably be one of the lucky ones! Unfortunately its such a no specific illness that no two aps' are the same so its a bit of a fight to be diagnosed so id get in the system outside pg too. Same as everyon else has said really - i wish you the best x

  • Hello Well I have had APS/Lupus for a number of years but it is only recent that I am getting worried, unfortunately for me I had a TIA in April and then I was put on Clopidrel and later Warfarin. I was put on Aspirin many years ago and it was stopped just before a operation in March and was told not to go on it, but I kept relaying my fears especially so, because my Mum had a bad stroke etc, but my fears were not taken serious enough, and unfortunately I had this mini stroke, and I am now pursuing my fears to the Haematologists. I use to live in London many years ago where I was diagnosed, and use to go to St Thomas and they were brilliant, especially Prof Cranston, and then moved to Devon, where I have lost faith. Anyhow, after reading your positive comments, I am going to get my head together and get on with life. My INR levels have dropped and so my warfarin has increased and then have to go back to Drs Friday to have test. My levels should be between 2-3 and they are currently 1.4 - that is why I am getting pins and needles, numbness etc and headaches, they were not bad yesterday, so just hope they are increasing. Only wish there was some other drug as tend to bleed when I have more warfarin which Drs are well aware of.

    It is good to know that there are people out there who have APS and understand the fears etc.

    Many thanks

  • As a newly dx person with both Hughes and sjogrens I have for years had many symptoms with other conditions which I now know cross over with these. So its difficult to know whats what. It was only after my stroke that APS was discovered but even then it was ruled out initially by my consultant as the tests had come back negative. I had never heard of "sticky blood" but cross frustrated and unable to accept that they were not able to tell me why someone of my age should have a stroke I decided to do my own research. I stumbled upon Prof Hughes Blog one day and reading his case histories made me realise that Hughes was what I had been suffering from for years. I had every symptom that was mentioned so knew I had to see him. There was a long wait but despite the negative blood tests he said there was no doubt about the dx and also dx the sjogrens. Everything just made so much sense after that.

    What I can say from whats he has told me is that if you have not had any thrombotic events at all, the condition can be managed with aspirin. Once you have had an event of any kind then you should be on Heparin or warfarin as the aspirin alone is not enough to prevent clots. He also said that it was a good idea to have a heparin injection when you fly (probably not if its just a quick pop across the channel etc).

    Like most people here I am still learning and have questions etc but now I know what is going on with my body and and doing something about it I am getting on with life, working to get over my stroke and raise awareness for these awful conditions. I am far more positive now then I was six months ago when I had no cause for my stroke and feel that worry will not do me any good. I just deal with whatever happens when it does.

    Dr Khamashta is about as good a doctor as you can get on APS so any advise he gives will be he best you can get. Prof Hughes personally told me to have my daughter see him and I trusted that judgement. We see him next week at St Tommys and I will ask him about any likelihood of a stroke just taking aspirin, however I am already pretty sure what his answer will be.

    I know its hard but try and put APS at the back of your mind and live your life, actually you are one of the lucky ones I think in as much as you have been dx early which could very well save your life for later in life. So be positive and think of the aspirin as a little pacman gobbling up all those little things in your blood as it runs through your arteries and veins! Thats what I do and I find it quite funny!!

  • my rheumotologist says this doesnt affect our children - should i get them tested do you think

  • my daughter was diagnosed at aged 5 with Lupus and Antiphos - just like myself, my mother and her two sisters. My daughter has aspirin each day 75mg and it is good to know that she is on this. #Also she is on many other drugs for Lupus and she is on Hydroychloroquine Sulphate which also acts on the blood clotting. ~She is 16 years old and she has superb Rheumatologist (the same consultant as myself) so she understands what our family are about. However, I find that the Haematologists are not very knowledgeable, if they are, why wasnt I told to go on Aspirin again after my operation as shortly afterwards i suffered fro m TIA.

    I am writing everything down and each time I go to see the consultants, I have my list.

    I would keep going on at them to get your children tested - it says that young children have it.

    thanks

  • Hi HWickers i am glad you have joined the group and hope you get the support and help you want . I am sorry to hear about your 3 miscarriages and am glad you have seen Dr Khamashta as he is a very good Doc as is all of them at St Toms

    Please do not worry about all the information you have been reading about some of the awful symptom speople with APS,have. Most of these articles and information is for awarness so people with those symptoms can ask there doctor about them and also so doc get an idea that its not just a blood test but they have to take symptoms into consideration as well. Regarding you developing more symptoms this is a unanswerable question as some people do some don't but being on blood thinners do seam to slow or stop symptoms when people take it sorry not being helpful but if you have no symptoms as such it could be fine ist also seams that symptoms come on more with pregnancy some times and also when very stressful events actions happen but this is just what i have seen and yes you can have people who have aps with no symptoms it really just depends.

    Regarding your chances of stroke is the same as anyone else with APS but as long as you are on blood thinner you have a 90% chance that you are not going to but i am sorry to say there is always a risk but on thinners this is drasticly reduced.

    Taking heparin when flying is always a good option as when you fly your chances for clotting are higher so YES YES YES or asperin etc.

    Regarding a Support group in Berkshire there is the Leader is Keith Diamond for HSF if you speak to Kate @ the Hughes Foundation she will give you his details

    Hope this helps

    Paddy

  • Hi, I'm sure you are concerned about your future, we all are really! we all may have different levels of Aps though, as we're not all the same with it.

    Some may have Lupus, Menieres, Dvts, strokes, Loss of limbs, clots, miscarriages ....the list goes on,

    It doesn't mean you too will have all these, I feel I may be one of the lucky ones as I havn't had most of the above.....no it isn't easy with the symptoms I do have....but I remember every day that I am still lucky compared to some

    As long as you have been diagnosed with APS you now should have a doc' keeping an eye on you now, if you develope/have symptoms of anything that may worry you contact your doc' or ask us on here & we will advise you the best of our knowledge

    Don't worry too much, thats the worst thing for you, but as long as you're on blood thinners you have less chance of clots/strokes etc,

    I'm going to be doing meetings in Staffordshire if you are able to come & join us ? I have just done a post with more details about it on here, so if you are able to , it would be lovely to see you too.

    Take care, we are here if you need us xx

  • Don't take the comments too personally. We all have similar symptoms but this does not mean you will have them too. Some of us improve some don't. We are all worried as we do not know what our future will be. Just be guided by your GP/Consultant. We all have different levels of this nasty disease. Just look after yourself, eat properly and listen to your body. Try and avoid stress that can lead to other problems. If you are not sure of anything no matter how small or big just ask - I think I ask silly questions but everybody on this site is in it together and we all want to help one another-I am so glad i found this site - its very comforting and supportive . Good luck and take care!

  • Hi there

    We all use this forum to voice our worries and find someone who will say "ohh that happens to me" so sometimes it will read like you will get a million things wrong with you now that you have been dx with APS. Alternatively you can read it and think "thank god that hasn't happened to me". We are all unique and whilst there are similarities in people, one of the reasons some of us can have APS and a negative blood test and some of us have it and strong positve tests is because of the differences.

    Keep strong and positive

    Love Sharon

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