Lost

[murphylotte]

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??

[MaryF Administrator]

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

[murphylotte in reply to MaryF]

My only worry is the gp’s in Denmark might not use this information in can get from uk.

[MaryF Administrator in reply to murphylotte]

I understand, and are any of the good Hughes Syndrome/APS books available in your own language? Worth giving them the odd book if so. MaryF

[murphylotte in reply to MaryF]

Just many books to buy... a hole unit of people 🙈 but I get your point!! Maybe an early Christmas present 🎁 😃

[Fra22-57 in reply to murphylotte]

Can you get one ordered from your library.That would cut out the expense

[KellyInTexas Administrator in reply to murphylotte]

I think personally, the best one would be Hiways and byways by prof Hughes himself.

It takes the most common symptoms chapter by chapter and included scans and X-ray’s from patients showing the problem.

It’s Easy to show your doctor.

[HollyHeski Administrator]

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

[murphylotte in reply to HollyHeski]

You are very kind!! And thank you for the admiration. I just want my life back and my head.

Xxx

[Lure2]

Hi murphylotte,

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.

[murphylotte in reply to Lure2]

Hi Lure2

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.

[murphylotte in reply to murphylotte]

I have even changed my name numerology wise just to get some “peace “ from aps.

[Lure2 in reply to murphylotte]

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.

[murphylotte in reply to Lure2]

I know and try to eat the same but it’s not always possible. I also take painkillers so sometimes I drop the broccoli.

I get massive pain in my legs so it help me to walk.

[Lure2 in reply to murphylotte]

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.

[Anjdur]

Hi, I am from Denmark and I have an APS specialist at Rigshospitalet.

I am also connected to Frederiksberg Hospital, where they follow my INR.

Where do you live in Denmark?

There is a Danish group on Facebook for APS, perhaps you will join and ask where other APS patients are followed and by what doctors?

[murphylotte in reply to Anjdur]

In in Odense and with OUH. Also the one’s that made all my medical mistakes.

How are you treated as aps patient at Rigshospitalet?

How did they find your inr level?

Im in this fb group already and Got no real reply before.

[Anjdur in reply to murphylotte]

Rigshospitalet (hæmatologisk klinik) started me on warfarin (marevan) and also clopidogrel as I have had several cerebral clots/TIAs.

Because I am also on clopidogrel my INR target is 2-3 (before clopidogrel target was 2,5-3,5)

Rigshopitalet sent me to Frederiksberg AK klinik, where I was taught to selftest, and I go there once a year to a check up.

Since being put on clopidogrel as well on warfarin about 3 years ago, I haven’t had any clots or TIAs, fingers crossed 🤞🏼🙏🏻

[murphylotte in reply to Anjdur]

Do you have any problems in your body?

[Anjdur]

No, not really 😊