Brain and joint struggles

I am new to this forum, am seeking advise and any common ground I may be blessed enough to receive. I have APS and had a PE, DVT, clots on brain, joint inflammation/chronic pain, headaches, change of vision and sun sensitivity, miscarriages, Ectopic pregnancy, this kind of sums it up. December of 2012 I had 14 clots attack my right lung and a DVT that shut my left leg down. I am on Warfarin for life now and under strict doctor care, as my dad passed away to a blood disorder. My struggle today is I am seeking any suggestions that may help w/the pain levels of the swelling in the joints and the brain struggles. I feel like I am a dementia patient most of the time, even in my speech. As well as I have had three different eye exams w/three different eye prescriptions

since last year. Thank you and God bless

33 Replies

  • Hello becca, what a terrible time you have had. I know many sufferers have ro have quite a high INR of 3 or over to get any relief of symptoms and I'm sure others will be able to help you with this. I am on Clexane injections for my Hughes syndrome. I do have similar problems to you as I have had numerous TIAs and other complications affecting the brain.

    Regarding pain I have just been put on a course of steroids.

    Do you see a Consultant who specialises in APS because we find that there is not always enough knowledge abou it. I hope this helps a bit and knowing you are not alone and that others have experienced the sam as you is helpful.

    Take care x Sue

  • Thank you so much for the kind words of encouragement, it has been a bit lonely in my mind even though I have a strong family and staff. I do not know of Clexane injections? There is not a specialist per say in our area I am in Oregon, yet I have been to all the specialists in my area that have given good information and that care for me biweekly with the INR and the constant cycle of virus that end up effecting my right lung where the PE landed. It's constant. The attacks on the brain and joints seem to be a constant any more. I am thankful for each day that is for sure. My dad passed away from a blood disorder and he fell asleep and did not return back after the clots took his heart. Do any of you know the life terms once the PE's and TIA's come? I know that it never can be told but anyone truly hear information on how this progresses? There seems to be not much information still

  • Hi and welcome, firstly where are you located, it helps other members to help you with more localized knowledge, also myself with other information. MaryF

  • Thank you, Oregon

  • Hi again, there are loads of people from USA on here perhaps some near you who will help, but in the mean time some names on here, perhaps you could contact! Let us know how you get on. MaryF

  • Hi bucca

    That sounds dreadful. Do you think you are "flaring" / having a flare-up/active?

    I'm going through something similar if not totally the same. May I ask what Neuro workup have you had so far? If this is a question too private / too personal and sensitive in nature , please PM me if that's okay?

    Hope you feel better soon. Hugs

  • Very kind to hear from all of you. I have had every specialist in our area and all tests...sooooo many to list for sure. It has been a two year journey into all the testing. They thought I had Lupus w/the Hughes yet I did not after all when I went to the final specialist she determined that their diagnosis of Lupus was incorrect after extensive blood testing.

  • Hi Becca.

    As my colleague, Mary, has already asked you, where are you located, as this helps us to help you.

    What is your target INR? From what you say about speech it may be that you need a higher target INR, or perhaps a trial on Fragmin (low molecular weight Heparin) injections, for a couple of months, to see if you feel better on that than on Warfarin. I certainly feel much better on Fragmin than I did on Warfarin.

    Best wishes.


  • Hello, yes I am in Oregon USA. My target INR right now is 2.5. I have been reading about higher INR to feel better is this true? They always keep me at 2.5. I take 7.5 ml of Warfarin daily and my diet is even so I stay at this level consistently unless I get sick. I have also learned the hydration is key key key! If I do not properly hydrate including electrolites I slip w/my joint pain and headaches. Since the PE and DVT and TIA's I seem to be worsening w/the joint, brain and headache and virus struggles.

  • Hello. For me I felt better when my INR was around 4.0. A lot of people on hee seem to feel better with a higher INR. At 2.5 I would have been feeling bad and would have needed Fragmin shots until my INR was back near 4.0. You should discuss this with your consultant.

  • Thank you and this seems to be a constant testimony so today I will also be discussing this with my Coumidin Clinic. Thank you again and again :)

  • Has your doctor suggested Plaquenil? It helped with my stiffness and joint pain.

    I had multiple PEs in both lungs along with pneumonia. I caught every bug the following year or two after the PEs, with another hospitalization for pneumonia a year later. I felt like Howard Hughes trying to stay away from people and constantly washing my hands! It took at least 6 to 8 months for my lungs to recover for deeper breathing. I suspect my lungs had scar tissue or something contributing to this, but happily by the 3rd year my immunity was back to "normal," so hopefully your lung will fully recover soon and stop getting infections.

    Most of us also struggle with "brain fog," but now instead of feeling frustrated about it, I've developed behavior changes to remember things better, and those that I don't, like forgetting a thought in mid-sentence, I just chuckle and shrug it off. But I know your frustration with feeling like you have dementia. I was once really anxious since both my parents had Alzheimer's and I was terrified the same thing was happening to me. Listening to so many on this board experience the same thing has really helped and I don't stress about it now, having accepted it as simply one of those minor annoyances in life.

    You've probably been dealing with anxiety, especially with your dad's history, so I suggest you learn as much as you can about APS, talk to those who understand (this board helps), be proactive with your doctors with questions, and try to find ways to relax and de-stress. As for your "life terms" after PE question, the prognosis is generally very positive for a long, full life while on warfarin with your blood properly coagulated.

  • A couple more comments -- Plaquenil usually takes a month or two to start feeling positive effects.

    Also it sounds like you're of child bearing age, so now that you've been diagnosed with APS, with your doctor's guidance, you have much better odds for a successful pregnancy.

  • Hello and thank you for the information, it is so deeply helpful to find others w/the same like of life that I have. This in itself helps significantly. I am no longer in the child bearing years but thanks for thinking so :) I am in my later forties and recently needed a hysterectomy in order to stop the intense blood loss three weeks out of the month after two years since I hemorrhaged in India. God has blessed me with two amazing biological sons, I also have three adopted daughters after miscarrying four times along with an ectopic that burst in my twenties. I will work to better understand w/my doctor the Plaquenil? Not sure what this is and have not heard of it. Thank you for the information. God bless you today and hope you are well

  • Thank you thank you

  • There is? Seriously thank you humble thanks

  • Thank you thank you

  • Hi, I agree ´with Manofmendip (Dave). An INR with a target of 2.5 is too low for most of us. I feel best when my INR is at least over 3.0. I selftest.

    Read some of the books available for sale on Hughes Syndrome Foundation Charitys website.

    I think of a special one. "Sticky Blood Explained" by Kate Thackray. That is very good.

    Best wishes to you from Kerstin in Stockholm

  • Hi beccafullcircle

    I do often wonder APS diagnosis does heavily depend on the history of miscarriages.

    I had none yet my family members died of cerebrovascular events prematurely.

    But I digress.

    My thoughts are with you, becca. Hope you get more help from a new specialist in Oregon. Take care.

  • Thank you so much for the support this forum has become such a positive. I meet w/my doctor tomorrow for INR check and will give information to have them refer me so to have insurance cover if possible. The medical debt has become such a massive concern also. Yes the history was a vital piece yet all the blood tests for six months and then coming off Warfarin to clean the blood of it's traces for three weeks to confirm the blood tests only to find that my body was clotting at that time of no Warfarin and now am on it for life considering the shape my blood is in. It's quite funny because I have lived a normal life w/the exception of what I went through in my child bearing years. I managed to start getting sickly and struggling with misdiagnosis when I turned 37 then now in my late 40's w/all the hemorrhaging, PE, DVT, Lupus Anticoagulant , Anemia, Vision changes, headaches, fatigue, Inflammation and all the brain and joint barriers, they all together w/the blood confirms have diagnosed me w/out error I believe. The hard part now is learning how to live successfully w/out another trip to the ER. I enjoy my life w/my family and w/what I do for a living in outreach work so I'm not quite ready to go yet as God allows :) I find humor and seeking out knowledge helps relieve this puzzle

  • Hi, I do agree with Dave (Hughes-Member)

    He can give you the name of an APS-doctor in Oregon. As it is so vital to have a doctor that is familiar with this illness I would absolutely see that doctor. There are so few of them that understands this illness!


  • Hi, Do not give up on yourself now when you know more and have had the name of an APS-doctor from Dave.

    We all have had to fight to have a doctor who really understands this illness. Most of the things you mention above has to do with APS, ev also Lupus.

    If you read about this illness (see the book I suggested above) you will learn so much. At least give yourself a good chance. Sometimes this illness runs in families. Your fathers blooddisorder was that APS perhaps?.

    I have problem with my heart/lung and that has to do with APS. Leaking heartvalves and pulmonary hypertension.

    I do not know of any clots in lungs but doctors say that the most usual place you get a clot with this illness is in the lungs not in the brain. I have had a lot of microclots that are very usual.

    Please do not give up but read and seek knowlegde and ask for copies of all paperworks that is done on you during the years.

    I hope God will help you to find that knowledge so you can feel better and have a long life.

    Kerstin in Stockholm

  • Hi Dave,

    That book meant so much to me. When I read that book (It was very difficult to read as I saw double very often and I could not see on one eye for some minutes) I understood at page 55 that I had APS and that I had to start warfarin as my doctors had recommended for some time.

    I started warfarin and I could see again. It took some time for some other neurological things to disappear (about 2 months) and I had to be at an INR of 3.0 at least.


  • Hi again,

    What does the Echochardiography with doppler show? Pulmonell hypertension? Normal heartchambers? Any diastolic dysfunction? If they have not done this exam on you you should have it done.

    Hope you understand that I try to help you in a brutal way perhaps. Hope you do not mind. It is for your own good.

    I know what I am talking of by own experience. I have also Lupus Anticoagulant like you.


  • Thank you so kindly for the wisdom from your experience. I am leaving for the doctor in a few short hours and will have a further talk w/them. I am requesting today to be referred to the specialist that was mentioned above in Portland a few hours away from where I live. I am also ordering the book mentioned above. What a blessing to have all of your advise. I a came here to seek more answers. Its a true blessing. If for anything to hear others that have the similar journey. So many pieces are the same from all of your testimonies.

    Thank you for the responses to everyone! Truly a blessing...God bless you all today. The sun is shining and we have another day to embrace so off I go :)

  • I want to wish you Good luck today!

    I am in bed this beautiful day here in Stockholm from an infection with fever so I have been on this site for a while and thought of you and I was afraid that I had been too impulsive and unpsychological. I am glad you took it the right way and understood that I wanted to help you. We are a big family here I guess and think of eachother trying to help

    Hope we hear from you again. Bless you!


  • Thank you so much Kerstin :)

    You are in my thoughts and prayers for this infection and fever. Yes I see this forum as a true blessing. It was a stumble upon kind of experience that I am so thankful for it has helped my mind and heart know that I am not alone. It becomes hard to deal w/in my quiet moments because I look so "together" to most until my joints give out or I stutter and get thoughts out. I love to smile so I don't lead on much of the time to those that do not know me. To my family and outreach staff, they all understand and keep me very close to them as I also rest more often and am used to high energy all my life till the last few years. There have been some big changes in my life no doubt. Recently my husband and I moved our office to the back of the outreach warehouse to keep me out of the "lime" light so to speak.

    Typically we serve over 100 people during our walk in clinic days and most always its a constant flow of sick sick people that need a hug from me and I have managed to catch all the unhealthy viruses that lead to pneumonia and even a skin rash that had to be treated. My body's immunity is simply not strong.

    With that said, I am so happy to hear you are able to be at home and enjoying a beautiful day while resting. I have learned rest is something I must embrace now after a life time of a "go go go" lifestyle w/owning a business and an outreach center. Breathe in the fresh air as you rest today and thank you for your extension of hand for support. I feel it...thank you again. God bless you

  • I'm so sorry to hear all you have been going through.....I feel you are very strong willed & determined person though...which is always good :)

    I wish you all the best in your appointments, tests & care you are receiving......I hope the sun is shining on you again today, all the best, Sue

  • Please excuse a late stage comment. In an earlier post you mentioned being put on life long warfarin and I just wanted to say that many of us here are on life long warfarin and or other drugs. I do remember how I felt when I was told that I would be on it for life, and how I had to be careful about this and that, and now, by way of balance, I'd just like to try and calm any concerns you may have by telling you I have been on warfarin for over 40 years- and I am still (relatively) normal. I see it more as long life warfarin ;-)

    Hope your appt went well.

  • I do hope you are improving now Kerstin, I do wish I could wave a magic wand & make so of you being so ill better :( best wishes, Sue :)

  • But thank you Sue. I have had an ordinary Virus with fever the last week and earlier they are chequing the heart and lung. Will do it more later on.

    With this illness it is sometimes good that you forget also the bad things.I try to remember only the good things. Today I feel quite OK.

    How are you?

  • I'm ok compared to most with this illness...very busy though at moment starting business up, also another one in pipeline?! so that'll be photography & event organizer!! as well as keeping two houses going between me & boyfriend! pets........ been very busy recently & can feel myself burning out...but I'll be fine, that's why I've not been on here so much but want to be.....I love you lot & want to continue to help where I can :) I'm hoping to do a Hughes charity event next year I've been wanting to do for the last few years...loads of bands lined up now ready :)

    I do hope you are on the mend now, I usually forget the good things & remember the bad things! :( or everything!!

    Hopefully your heart & lungs are ok, keep us posted, Sue :)

  • Hi Sue, Thank you for the kind words.

    Burning out .......... that did not sound good in my ears. Hope you are not doing too much. Hmm......It is difficult to live and wanting so many things and then the body will slow down just a little.

    Hugs to you from Kerstin

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