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Concern about stroke, aneurysm, clots

Posted , 14 users are following.

Guest
Guest

Eileen,would appreciate your thoughts and others with GCA. I was put on baby aspirin immediately after my positive temporal biopsy. I am reducing my pred and am at 7mgs with no flares! Do I need to discuss some type of blood thinner to help reduce my high risk for cardio issues with my GP and rheumy? Thanks one and all, Ann11195

1 like, 14 replies

14 Replies

  • gillian_25383
    gillian_25383 Guest

    Posted

    Your 75mgaspirin is a blood thinner.Last year during heart tests I had to have a cannula put in.Never thought to mention aspirin hence blood dripping onto couch then floor. Plus since on baby aspirin surgery has no problems getting blood:was a nightmare previously
  • dan38655
    dan38655 Guest

    Posted

    I believe that aspirin itself is a blood thinner.

    This makes me think that aspirin might be very good at reducing vasculitis symptoms (by improving blood flow), but whether it is actually effective, or can be tolerated in the stomach along with oral steroids, are questions that would need to be answered by those in the know about this.

  • noninoni
    noninoni Guest

    Posted

    Hi,  I would think baby asperin can be handled with another bite of food on top of the food for prednisone.  For more serious problems, note I am on coumadin which needs lots of monitoring, so the new blood thinners sound good.  But a friend of mine was put on xeralto, one of the newer ones that supposedly needs no monitoring, only to have a brain bleed.  She is a very tiny person, so I wonder if they adjusted the dose to her small size-probably not.   There is no anti-dote so she had to have brain surgery to relieve the problem.  Her symptoms were a super headache and loss of balance. Fortunately it did not affect her higher functions and she is recovering.  

         There is an anti-dote for coumadin-vitamen K, as well as frequent monitoring. 

    • EileenH
      EileenH noninoni

      Posted

      We were dicussing this with out neighbour yesterday. He's on the same anticoagulant as me, Sintrom, a relative of warfarin. His doctor has been singing the praises of these new drugs so Ernst also thinks they must be wonderful. I pointed out the risk - exactly what happened to your friend. I was offered them last year and declined - having a monthly blood test is peanuts in view of what CAN happen. 

      The Unique Selling Point of these far more expensive drugs is that you don't need the monthly testing - but it has been found that, in some people, the anti-blood clotting effect can become exaggerated and maybe they DO need to test after all since you can't know who will be affected. The cardiologist who mentioned it to me understood exactly what I meant - I'll wait until all the teething troubles have been sorted out. Because inevitably there will be some and in a few years time we'll be hearing that the FDA has issued a black box warning or that they aren't recommended for some people or that we still need the INR testing. Ernst was insistent that the doctor said "you will feel much better" - can't say Sintrom has any noticeable effect on me and I have to ask of the doctor in question had tried taking both the drugs.

      Monthly testing versus brain surgery? No-brainer, if you 'll excuse the pun...

  • Ardern
    Ardern Guest

    Posted

    Hi

    I was taking 81 mg of aspirin before my biopsy and was took to stop after it. The surgeon could not get the artery to clot they used to 3 clips and it still took 45 minutes to get it to clot. at that time I was taking 55mg daily. I am due for some more blood test is it possible to have the platlett count checked at that time

  • gaenor38609
    gaenor38609 Guest

    Posted

    I am on 75mg of asprin which I take at night with something to eat, I am on 11mg of pred which I take in the morning because I was told not to take the pred and asprin at the same time. I am due for my 3 months check up for my diabetes I also have GCA and PMR. The only thing that bothers me is the heat I get every now and then where I feel I can't breath and I sweat so much it just drips from my face and head. The Dr says this is just one of the side effects of the Pred. I hope that when I eventually come off them that the sweating stops as well.
    • Susanne_M_UK
      Susanne_M_UK gaenor38609

      Posted

      Gaenor, I too have GCA and take 75mg aspirin daily, but have not

      been told to take it separately from my Preds. Will have to check with my excellent pharmacist.

  • tina-uk_cwall
    tina-uk_cwall Guest

    Posted

    Hello Ann, I only have pmr and was not put on any blood thinners until I broke my heel and I ended up in emergency with numerous substantial pulmonary embolisms. I was given an injection in my tummy of whatever? Now I take rivaroxaban, and will continue to take for 3 months minimum. Tyere is no anti dote for this drug so if i had a brain bleed they'd "throw everything at me". The PE nurse did say that some inflamatory conditions can cause the blood to become "sticky" and so blood thinners are prescribed. All the best, tina
    • noninoni
      noninoni tina-uk_cwall

      Posted

      yes rivaroxaban is the same thing as xeralto.

      You were given lovanox shots which go into your tummy: heparin.  They are very expensive so we hope your insurance is good!  You usually have to continue these shots until your INR is above 2 and below 3.  Coumadin is dead cheap but it does need monitoring.  But perhaps the xeralto is considered a way to reduce the lovanox? 

             

          Just remember the symptoms of brain bleed:  horrid headache and loss of balance, and go immediately to emergency!

    • tina-uk_cwall
      tina-uk_cwall noninoni

      Posted

      Hello noninoni, I live in GB so luckily we have the NHS. Coincidentally, I had a choice of 3 options for medication. The heparin shot they gave me, but the   PE nurse offered continued heparin shots, rivaroxaban, which I choice because it didn't require monitoring, and warfarin, which does require monitoring. What my INR level was I have no idea, but I am well on the way to good health. Infact I felt well again within 5 days, so I am very grateful to medical science and our NHS. It was a very scary experience especially when in emergency the consultant came into my cubicle, held my hand and told me that the CT scan had confirmed their suspicions and that I must understand that I am very seriously ill! But as I say I am very well now.

      thanks for the symptoms of brain bleed.

      regards, tina

    • EileenH
      EileenH noninoni

      Posted

      No charge for even expensive drugs in the UK and most of Europe - state-funded medical care means all we need is to pay a prescription charge per medication and even that is removed for over 60s and certain approved chronic illnesses such as diabetes or hypothyroidism. Each country is slightly different - here in Italy I pay a small co-pay for a lot of things but not all. 

      LMW heparin shots of whatever variety are only used to bridge the period up to planned surgery or other procedures or afterwards until the INR is back to between 2 and 3 (or whatever your target is which depends on the condition you have). A pack of 10 pre-loaded syringes cost me 2 euros, the prescription charge here. Now, because of the atrial fibrillation which requires medication for life, I don't even pay that - I'm exempt all copays for all those drugs. Not other things though.

  • Artdesign
    Artdesign Guest

    Posted

    Hi Ann,

    I was put on 81mg of asprin and 70 mg of fosamax and give 40 mg of omeprazole to protect my stomache.  After after 7 weeks of starting pred, I went down to 50 mg of pred this week. I was told that the asprin would help reduce stroke. I am still waiting for test results from heart, lung and brain MRI tests to see if there is any other damage. I have GCA and PMR and I'm in mid 50's.

  • Susanne_M_UK
    Susanne_M_UK Guest

    Posted

    I have GCA and take a baby aspirin daily as prescribed by my rheumy.

    It is a blood thinner, thats why I get a bruise at the slightest knock.

  • EileenH
    EileenH Guest

    Posted

    It depends what sort of cardio issues are involved. The recommendation is to take low dose aspirin for life - just as is done for many people post-stroke or heart attack.  It doesn't "thin" the blood in the same way as warfarin but makes the red blood cells "slippier" and less likely to stick in the arteries. If you can't take aspirin for any reason then there are other drugs - and maybe you should ask the GP to refer you to a cardiologist to discuss what is most appropriate for you in the long term. You SHOULD have imaging of some sort to be sure that no aortic aneurysm develops - you can be added to the national screening programme which is aimed at men over 65 to identify abdominal aortic aneurysm, though they just need a single scan, you should have follow-up ones every few years because they can develop ten or more years later. The current recommendation for thoracic aneurysm (in the chest) is a chest x-ray every 2 years or so but that is likely only to find advanced aneurysms. Ideal is an echocardiogram - an ultrasound done to look at the heart and aorta. It's a bit complicated because it must be done through the gaps in the ribs - but it only takes about 15 minutes. I've had a couple here in Italy.

    But this is not something I can really answer from personal experience - atrial fibrilllation (most likely due to the autoimmune part of the PMR) means I'm on rat poison for life anyway!

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