Hello. Anyone have Hughes syndrome and urinary problems? I have problems about 10 years from pain in the bladder, and about two months i have been diagnosed with Hughes syndrome. I are in varfine, i have 41 years. Anyone have the same problem? Thanks. Luis
Portugal
Hi Luis and welcome to our friendly site and hope you will stay with us!
You say you are on Warfarin since 2 months. It can take some time to get to the therapeutic level.
As APsnotFab says we know that it is very important to have a Doctor specialized in APS and who knows that when we have APS we need to be on a rather high level of our INR to avoid clots etc as we have too thick blood.
What level has your Doctor set your Warfarin INR? I selftest and am on an INR of 3.5 - 4.0.
Have they tested you antibodies for APS? Are one or more positive?
I suggest you read "Sticky Blood Explained" by Kay Thackray. She has APS and writes about the different symptoms we have from this illness. A good book to understand how it is to live with this illness.
Best wishes from Kerstin in Stockholm and a Happy New Year!
Hello. This disease is not connue por le doctors, doctor do not give me information about this disease, my inr is between 2 and 3, last time i have 2.4. I have buy this book today from bookdepository.com.
I have a trombosis and have migraines from kid, and now the doctor found APS it is possible that this probleme make me have fadigue and memory problems? Thanks for the answers. Luis
portugal
Yes, APS does cause fatigue and memory problems among many more issues.
I have APS finally diagnosed in 2009. I am 45 now but in my late teens early 20's I was diagnosed with chronic interstitial cystitis. Also refered to as painfull bladder. Mine was much more than pain as it hemorrhaged at least 15 times. During thkse times my urine had so much blood it was either red or looked like coffee. I still have pain at times but it hasnt hemorrhaged in 20 yrs. Thankfully because I can only imagine the blood loss if it hemorrhaged now since I take 75 plavix and 12/13 mgs warfarin a day.
Do you take any medicament for bladder?
No I do not. I was diagnosed im the early 1990"s at the time the treatment was to fill you bladder with a chemical called DMSO, im not sure what it is but it something they used on cows and the onlt legal use on a human was to fill the bladder with it thru catheterization. It was odd because yoy had to hold it in for thirty minutes and it made u smell like either corn or garlic for a few days. I smelt like corn. There are new medications in the market now. I went thru one round, 6 treatments and did not go back as it was expensive and I tookthe time to listen to my body and rest when it wasstarting to act up. Now I have pain but nothing unmanageable. I have a good pain tolerance. One tip. If its acting up, avoid alcohol and any acidic drinks as it can cause some major burning pain
I have APS and Interstitial Cystitis (IC) (a.k.a. Painful Bladder Syndrome). I have found changing my diet has been most helpful. Anti-histamines are one med treatment, however there are a many treatments available depending on your specific set of symptoms. That said, my Dr has said diet changes are the most effective treatment. It takes time to figure out the triggers, but worth it.
A prof.or dr. Specializing in Hughes syndrome
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