I live in Denmark. I had bleding PE’s in 2014, in 2015 i Got my diagnose aps. The hospital send a card with my conditions aps and faktor ll and a few leflets with the conditions.
I was told there was no medication and all my symptoms they never heard about.
With help from this page 🙏 i Got medication. But it was xeralto so when i had my periods i had lumpy bleedings and pain like giving birth. They told me it was because i was inaktiv.
I changed my meds after i Got mirena coil. My bleedings has stoped now and i have no period pain.
I started then to get severe infections in my legs, back, tonsils and last time groin. I was on antibiotics 3000 mg a day for 18 days. My inr droped so had to take fragmin.
In Denmark inr is not allowed to get above 4, my higest is 3,5. When i take fragmin im on 1,8 and so sick!
I take meds for neuro pain because all these infections has made my skin hurt. I have joint pain, upset belly, migraines, brain Fog, migrane and can sleep forever.
I was lucky to ask proffesor Hughes about my symptoms and he Said full blowen aps. Inr up to 4 or above.
I lost now! Cos in Denmark there is no specialist for aps. I see 1 reumaspecialist and last time i was told i get infections because i dont eat brocolli 😳
Would you find a specialist in another country? Do you think my gp’s in Denmark would use the result?
Im seeing a therapist at the minute, cos im lost!!
What would you do??
Written by
murphylotte
To view profiles and participate in discussions please or .
I think if it were me, I would be tempted to take a holiday in London and go to the London Lupus Centre, so they could advise your GP and current Rheumatologist. Maybe give them a ring to see if they can do video appointments? Also take a look at the charity website to see the nearest specialists to you outside of your own country? ghicworld.org/ Sorry that you are feeling so awful. MaryF
I'm so sorry for all your struggles, it's so unfair, to have both APS & Factor11 - the balancing act between the two is incredibly hard.
You really need to see a specialist, if nothing in Denmark, can you try London Bridge in London?
Keep working at it, infections can be because our body immune system can't cope, in turn it runs us down mentally too, you are seeking help, which I admire you, keep going xx
We have spoken 2 years ago. You then said you had a Specialist and it was a Rheumatologist. Perhaps she is not knowledable of APS. In that case it can not be impossible to find a Specialist of autoimmun illnesses who works with such issues every day in your country Denmark.
Could you perhaps find a Hematologist who is specialized in blood-issues. Rheumatologists and Hematologists are usually knowledable of this illness if you find a Specialist of APS.
Ask your GP for help. I do not understand that Broccoli would give infections !? Broccoli lowers the INR when on Warfarin.
Prof Hughes said that you should have an INR of 4.0. Have I misunderstood that?
Also you should not have to go that low in INR like 1.8 (!) before you can get Fragmin.
You should not have to be that ill from APS because of a too low therapeutic range. You have had this illness several years now. Take copies of all your bloodtests and keep it at home.
Good Luck! Let us hear how it goes for youto find a Specialist of autoimmun illnesses. Our countries are very alike I thought.
I remember you, they Said they knew about aps and also knew Hughes. But to be honest they dont work the way he do.
They retest me once a year to see if i have lupus and ask if i have any clothing incidents, that’s it.
I do my own blodtest and send inr to heart division, they regulate my inr and warfarin.
My own GP sort out my infections and is sure its because of my aps. He has also medicated me for nerve pain.
Well to be honest I dont know how brocolli would stop infections, but im eating that and vitamins for people in there 50’ es and im 40. I suply with q10 because it should help with warfarin. I go for walk 2 times a day.
Wow...... a walk twice a day..........that is good. You know that your INR will go down with Broccoli so if you want to stay in the same range always eat the SAME amount of Broccoli.
It must be difficult for you to have both painkillers and Warfarin. It would be easier if you took the same amount of painkillers every day but what has your Doctor said about that? I am not a Doctor and i do not use painkillers. If I take one Paracetamol one day that will not change the INR but 5 days or more would change the INR no doubt. Do you know why you have pain in your legs?
It is a shame as a correct INR would probably help you with the migraines and brainfog etc. I hope you can find a reallly good Specialist who can help you with all this. I wish you good luck. It should be possible in Denmark. Take as much help you can get.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Has anyone seen the site online regarding APS and there are all types off information given by doctors etc.
How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
good evening all
'Funny Turns' and Hughes Syndrome
