Update and help

Hello. I am Scott and have posted on the site before. I was diagnosed with Hughes and fibromyalgia. I live in the US and the knowlegde about the disease isn't like it is overseas.

I am on warafin, plaquenil, alprazolan and recently ambien. The dr lowered my plaquenil and my lymph nodes started to swell then got what I think is a kidney infection and had blood in my urine. It seems if I get any infections my body go crazy. My questions

1) does a bacteria that infection cause the Hughes to act up and cause the blood to thicken

2) I see a onacoligist/hemotologist the following week so any advise would be appreciated. My rheumatologist have mention something about heparin. I think when I get sick my blood thickens, could this be true or is it the infection and fever. I don't have a self tester so I don't know.

3) Also they say I have IBS but I don't get an upset stomach but it like my stomach is having spasms causing swelling in my stomach and gas.

Any opinion would be appreciated. I have gained so much knowlegde from here already.

Thanks

Scott

5 Replies

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  • Hi Scott - do you take antibiotics when you get these infections? If so it would be those that would be reacting with the warfarin making your INR go crazy, it's known for that and you should have been warned about it.

    Secondly, infections can cause us to have flares so symptoms can at that time get worse. Also infections can make it difficult to control our INR as any stress on the body can affect this. Putting you on LMWH instead of warfarin or supplementing your warfarin with it so that you take it when it drops below a certain level would be a good idea but as you don't self test I would think that would be difficult so a change to full time heparin may be more suitable for you.

    The IBS type symptoms can be a sign of APS especially if an hour or so after a meal. It's a sign that not enough blood is getting to help out when it's needed to process the digestion of the food.

    I'm wondering though, given you have been told you have Fibro if they have considered you have Sjogrens. This often runs with Hughes and can be misdiagnosed as Fibro and can cause stomach issues. Also have they checked your Thyroid properly and by that I mean full Thyroid panel not just TSH or T4 as they tell you nothing. Autoimmune thyroiditis also runs with Hughes and Sjogrens and Prof Hughes calls them the big 3. It's seems very tell tale to me that when they cut your plaquenil, a medication often given for the above you had a flare. I think you should ask for both these things to be investigated and look on this site for Prof Hughes Blogs or videos where he talks about these 3 issues together.

    Good Luck

  • Hi

    I totally agree with what my colleague, APsnotFab has suggested.

    Dave

  • Thank you

  • Hi, yes our blood thickens and flares up when we have viral or bacterial infections, I have Aps and sjrogens, your symptoms sound familiar. Totally agree with Apsnotfab's answer, couldnt be worded better. Good advice to follow...

  • Thank you for your help, glad I not crazy that this is a system.

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