Thought I had better update everyone since I haven't posted in such a long time. I recently had a knee replacement of a knee replacement. This surgery was on March 6, 2015. The surgery went great, but wow...the pain I am having since is almost unbearable!! I was in the hospital from the day of surgery until Wednesday, March 11, on that day I was transferred to a rehab center to get the pain under control and for some intense inpatient physical therapy to help get the leg stronger. When I was in the hospital, the surgeon had me taking a 325mg aspirin twice a day as a blood thinner due to my history of having the APS antibodies in my blood, I was a little bit leery about only taking this. When I got to the rehab, my family doctor came to see me and he was horrified to see that. He immediately took me off the aspirin and put me on Lovinox shots twice a day, that made me feel a whole lot better. The shots continued for the 8 days I was in the rehab, when my doctor released me yesterday, he said as long as I agreed to walk as much as possible each day and continue with my outpatient physical therapy, I didn't have to continue with the shots. Does anyone else think he should have continued them for a while longer? I think he should have for at least a couple more weeks.
Haven't posted in quite awhile - Hughes Syndrome A...
Haven't posted in quite awhile
Hi Becca
I hope you are soon feeling better.
In respect of the Heparin shots, what are you normally taking as anticoagulation for you APS?
Dave
Thank you Dave. I am really feeling much better than right after surgery for sure. I mean there is a lot of pain don't get me wrong, but but it is better.
I am not normally on anything as an anticoagulant because I am not diagnosed as having full blown APS just as having the antibodies in my blood, so they just put me on something after I have surgery as a precaution. They also had me wearing the TED hose after surgery too, but discontinued them when I went back to see my surgeon after my 2 week check up.
Becca.
Depending on the level of those antibodies, i.e. if they are higher than the normal range and have been so in two tests 12 weeks apart then you have APS. Indeed, many on here are diagnosed on symptoms only, without testing positive, i.e. they are seronegative but have APS because they have all the symptoms and those symptoms cannot be caused by anything else; a Sherlock Holmes type of diagnosis really.
Dave
I am not sure what my levels were, I can't remember right off hand. I was supposed to have an appointment with the hematologist the end of April, but I got a letter telling me that he has left the practice and I would be seeing someone else. And then I got a letter from the hospital that runs the clinic where I see the doctors at and they closed the clinic due to "staffing" problems and said I would have to go to one of the other offices to be seen. I have not called to make an appointment as if yet. I think I am going to just call around and find a new one that just deals with APS patients so I can find out for sure one way or another if I have it or not and if I do, what I should or shouldn't be taking.
Hi Becca,
Good that the surgery of the knee is over now. I hope you are on Baby-Aspirin at least.
Have you now an APS-Specialist to go to? i know you had someone who knew APS but is she still with you or do you have to try to find someone new who understands this illness. I hope you will find a nice APS-doctor as there are such persons.
2 years ago you had positive antibodies twice and after that you have had Lupus Anticoagulant. So you have APS.
You have had so many difficulties lately and you deserve something positive now.
At least you know a lot of this illness now so you will have easier to discuss with a Specialist.
Write down everything that has happened to you the last years. Take copies of everything also. I think you write very good.
Hope you can exercise a little now when you can walk easier. Today we have snow in Stockholm but the other day I saw a lot of springflowers How is the weather in US where you live?
I wish you the very best to happen!
Kerstin in Stockholm
I am still with that woman doctor that knows at least a little bit about APS. But yes I am still searching for one that just deals with APS exclusively. That is a really hard job around my area. Actually, no I am not taking anything at all, but I do think I am going to start taking baby aspirin just to give myself a little piece of mind.
I have been writing everything down in a diary ever since I was first told I has APS and I take it with me to every doctor's appointment I go to. I really can't exercise yet, just do certain ones sitting in a chair to work the leg that was operated on. But I have been walking in the hallway of my apartment building and this afternoon I went outside and walked in the parking lot. The weather is is crazy!! Yesterday it snowed, hard and heavy. We got probably 4 inches or so. But thank goodness when my step dad came to bring me home from the rehab, it had all melted off the roads. Now today it was cloudy but it didn't rain or snow. Wasn't too cold either, around 44 degrees.
Thank you for your best wishes, means a lot to me!!
Becky
Hi there, pleased to hear from you again, firstly some of us get a doctor or Hughes Syndrome/APS specialist who only has half the picture, unfortunately that is yours. You do have Hughes Syndrome/APS, you need to secure somebody who understands your entire picture, including your medical picture and your antibody results, please look at this list: apsaction.org/
That consultant will also need to understand the need to look at your Thyroid beyond the unreliable TSH test and also your levels of D, B12 and iron. It is clear that you probably beyond Aspirin need to ask them about regular anticoagulation, and if they are an APS/Hughes Syndrome doctor they will be terribly familiar with the advice on our charity website, You need to carefully and firmly fight your corner. Best wishes, and glad to hear that your operation has been a success, although not happy to hear about your level of pain. MaryF
I know that I really do need to find a specialist that knows what they are doing as far as the Hughes Syndrome/AS goes. Trust me, I have been looking into that a lot. I have called some and have had no luck getting an appointment, which is quite frustrating. I will take a look at the list you have provided.
I am already on a thyroid medication because years ago, I had to have half of it removed due to have a nodule of it, they do check my TSH level regularly, I take a Vitamin D supplement daily, receive a B12 injection once a month and take an iron pill daily. I have been wondering why I am not on a regular anticoagulant. And I was very surprised when my surgeon said to only take the aspirin after surgery. My family doctor just about had a fit when he heard that and right away discontinued that and ordered the Lovinox. I will fight for what I need, trust me...after this last stay in the rehab, I have learned very well how to fight for what I need!! I am sure this level of pain will start to get better day by day. I remember the last time I had this done, the first 3 or 4 weeks were the worst.
Great that you are on Thyroid but being in the USA, you may try asking for natural desiccated thyroid treatments which at times work better for those of use with autoimmune, and also ask for more comprehensive tests beyond the TSH tests, please read this page. thyroiduk.org.uk/tuk/testin...
Best of luck you are nearly there with all of it, you just need a bit of fine tuning, best wishes to you. MaryF
I have to call Monday and make an appointment so I will certainly talk about this with the doctor. I never heard of this treatment before. I will also talk to her about more comprehensive tests.
Thank you for all your help on this matter, all of you have been so helpful and I really do appreciate it so much.
I think you should ask for baby-Aspirin at least, as you have APS and are not anticoagulated at the moment.
Obviously that woman doctor does not understand APS. I Think you are very strong and positive and you take one day at a time. You are newly operated with success so it is not a wonder that you have difficulties to walk.
I think Mary has given you very good advices.
We know you here since several months so stay on and please tell us how it goes for you.
Take care!
Kerstin
I agree with you that I should as for baby aspirin at least. I really feel I should be on something!! I would feel much safer at least.
I agree with you that she does not understand APS. I like to think I am strong and positive and I really do take things one day at a time. I knew going into this surgery that I would have some great difficulties walking for several weeks after it was done, but I have really surprised myself walking as well as I am this time. I think it really helped me by the fact that they had me up and out of bed several times the night of surgery walking several times, not very far, but they had me up walking.
I think Mary gave me some very good advice too. She always gives me the best advice.
I will keep posting and letting everyone know how things are going for me.
thank you all for caring and really keeping my spirits up and going!!
Becky
Hello. I've been in a similar situation re having antibodies but not being anti-coagulated. In recent years, my levels dropped to normal so the docs saw no need. I saw an internal medicine specialist who said I couldn't take baby apsirin or heparin anyway because of my fibroids. I also have adenomyosis which causes very severe menstrual bleeding and flooding! It would aeem nobody knows what to do with me!
Anyone else in a similar boat with advixe to give?
My advise is that you put your own post on this site with this question. You will then probably get some advise and answers.
Kerstin in Stockholm
APS Action has a list of US doctors who are experienced in treating APS. There is currently some controversy about whether negative antibodies indicate the disease has "gone away" or was never "really" there. Stick with a doctor with APS experience.
Good luck.
I live in West Virginia so, as I'm sure you can imagine, there are few APS doctors in my neck of the woods. But I can recommend Dr. Winkelmann in Chestnut Hills Kentucky if thats close enough to you for a consult.
Gina
I do know the importance in finding a doctor that has experience with APS and I have not been lucky enough to have found one yet, only found one that is semi-familiar with APS. I have not given up my search though.
I live in Pennsylvania, the central part, and all the APS doctors live several hours from me. Which makes it very hard for me to get to them. Thank you for recommending Dr. Wilkelmann to me, but I am afraid he is just a little too far for me to consider.
Becky
I have never had a DVT, PE, or TIA. I have had in the past 2 miscarriages without any explanation as to what happened, now that was way back in the early 70's before it was found that I had the positive antibodies in 2011. After my first knee replacement in 2011, I was on Lovenox injections for 6 weeks and had to wear the TED stockings for a month or so post op. But this time when I went back to the surgeon for my 2 weeks check to have the staples removed, he told me I could stop wearing the TED stockings. I told him my family doctor stopped the 325mg aspirin and started the Lovenox injections twice a day and he said that was fine but he didn't say how long it should continue. When my family doctor discharged me from the rehab center on Friday, he said as long as I continue to walk at least 300 feet a day and continue to do my outpatient physical therapy, I wouldn't have to do anymore Lovenox injections, which I found a little strange because I had to do them before for 6 weeks. I am just praying I don't develop a blood clot. As of this morning, I am having some tenderness in my left calf muscle and I have been doing some light stretching exercises with it to try to get it worked out and putting heat alternating with ice on it to hopefully see if it is just pulled, I am praying that is what it is and not the start of a clot. I am keeping a very close eye on it for sure!!
I read the like you included and even though I live in the US, it did give me some very good tips as to what to watch out for and ask my doctor about. Thank you for including that.
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