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Has anyone with RA had DVT and pulmonary emboli?

Posted , 8 users are following.

elizabeth58572
elizabeth58572

Diagnosed with RA about 18 months ago. Been through methotrexate, plaquenil, sulfasalazine, prednisone, occasional depomedrol shots with little relief. Finally started Enbrel 3 months ago, and was fabulous for the first 2 months....until diagnosed with DVT in leg and multiple pulmonary emboli. Now on Xarelto so can’t take any anti inflamatories. Liver enzymes up so off MTX, and no Tylenol!

What am I supposed to do for pain? 

Horrible flare of hands, feet, elbows, shoulders since starting blood thinners. 

Anyone else been through this...or have any suggestions?

0 likes, 6 replies

6 Replies

  • carol303055
    carol303055 elizabeth58572

    Posted

    Hi Elizabeth, I so feel for you. I’ve not had P.E. or DVT but I did have to stop my Mtx and Benepali due to lung fibrosis and infections. The joint pain which had gone very much to the back of my mind was back with a vengeance! Awful and frightening. Prednisolone was fantastic. I don’t know if it’s appropriate for you but certainly worth asking.  Incidentally, I’m still trying to reduce the dose as I was unable to go back on Mtx, and Benepali not enough on its own. Very best wishes. Carol
    • elizabeth58572
      elizabeth58572 carol303055

      Posted

      Thx so much for your support, Carol.

      I didn’t do well with oral prednisone, but maybe worth revisiting.

      Hang in there, yourself!

       

  • mary76396
    mary76396 elizabeth58572

    Posted

    Hi Elizabeth. I'm very much the same as you, I've been diagnosed with RA for three years for which I inject Actemra every week. I've been taken off Methotrexate as it was causing liver problems. I've also got atrial Fibrilation for which I take Apixaban blood thinners and Veramipril, for high blood pressure I take  Irbesartin. If I get a flare of RA I take 10mg Predisolone for three days reducing over the next six days, I also take Amiltriptyline and Tapantadol if I can't sleep along with Panadol Osteo. I've not been told to be careful of NSAIDS thank god as without the MTX I have a lot more pain and stiffness.

    Talk to your Doc (and I will do the same) to see which is right as I gather your blood thinner is very much the same as mine but we've been given different instructions. Good luck. Mary

    • elizabeth58572
      elizabeth58572 mary76396

      Posted

      Thanks Mary.

      Ironically enough, I’m a nurse....working with the Thrombosis Unit at my hospital, and they were pretty clear about no nsaids - but you have given me reason to think. I’ve been so focused on trying to get the RA under control - maybe there is a better choice of anticoagulant for me, that would work better with my other meds.

      Thanks for your input - I’ve never been on a forum before - it’s comforting to know there is a means to reach out to others in our situation.

      e

  • theodore_1914
    theodore_1914 elizabeth58572

    Posted

    You have try all the serious altillary if weapons of the pharmacy , wow , all make the best cocktail for the kidneys , out of all that which one you think hemp you most ? May be you do not know , avoid the cocktail of those serious medications, and as for Enbrel use it sparingly under medical supervision, others ask for medical marijuana, indo have serious HLAB27 condition personal i want to paint myself green and go to mars , here on earth is hard to to leave , to many have cancer I notice , avoid cocktails your body get confused , pharmacy means poison , caution S4 , one at the time , to try that, this , etc is no helpful , follow a procedure with your doctor all the best 

  • theodore_1914
    theodore_1914 elizabeth58572

    Posted

    IN this forum you have the moderator as police allow this or not under those restrictions you no get any beneficial Advise from others because they are policing what we say and is under scrutiny , they want forum but they love policing, the best doctor is your body , the person who have a problem is the person who know more , in this forum I found it very strange that freedom of speech is no exist thus they asking for Info , typical human behaviour 
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