[Mother M]

Hi I have had the traumatic experience of caring for my 29 year old daughter with the newly diagnosed lupus driven illness and APS. Diagnosed by Dr Edwards at the London Lupus clinic. The 3 x illness flare ups in the past 18months have caused rashes, loss of the use of her legs, speech, coordination, physcosis and catatonia, DVT to leg. 18 months down the line she is now currently on immunosuppressants Azathiroprine, Antiflamm. Planequil, venaflaxin, Steroids prednisoline and warfarin. She feels sick in the mornings but appears to tolerate food and life for the rest of the day. She has just started work this week after 8 months of hospital and recovery care at home. She has been amazing. She has gone from being a bright lovely young women who travelled the world with her job, to having to spend time in hospital, moving back home to the parents and being dosed up to the eyes with lots of drugs. Not once has she moaned or cried. Is there anyone out there who has Lupus and APS that effects the Brain and CNS.
We have purchased a self testing INR machine for the APS aspect, but cannot seem to get a steady INR result of 3-4

 

[Katharine]

Hello Mother M and welcome to the site

I am so sorry to hear how ill your daughter has been. Hopefully her newfound stability will now last for a good long while.

There are many people here that share at least some of your daughter's experiences and a wealth of support and knowledge.

I'm afraid I can't help at all on the INR machine as I don't have any experience of them myself. That may be a question to pose separately outside of "introuduce yourself" (for example in tests and procedures) so as to get more targetted answers.

bye for now,
Katharine

 

[Maia]

Your daughter sounds truly amazing; she is definitely a fighter and I'm sure you are so proud of her.

As to your INR question, we have many people experienced in this. You may get a better response if you post in the Related Conditions about APS and trying to get a consistent INR.

I have read recently that they have developed a genetic blood test that can help predict who will and won't be able to achieve good results with warfarin... and another blood test to help get a better starting dose estimate. In general, I know that you need to keep dietary intake of Vitamin K very consistent while on warfarin as that vitamin will affect INR too. So if she likes green leafy salads (& other food sources high in vitamin K)... she can still eat them... but she needs to eat a very consistent amount every day of the week.

I hope others will come along here with their personal experiences, but if not please feel free to ask your specific question in the Related Conditions forum as well.

Welcome to our site and best wishes to you and your daughter.

 

[LolaLola]

Hello and Welcome to you.
Sounds like you and your Daughter have had a bad time. Dr. Edwards is wonderful though isn't he?
I have Lupus and APS and have had a major brain flare in the past. Glad to say I have not had a serious brain flare for over 5 years now. I am a bit muddled and a bit un coordinated but generally I manage.
x Lola

 

[onetay]

mother m,
Hi and welcome to the site. You have had a very hard time along with your daughter it sounds like. I hope things are getting a little better for all of you. The lupus will be a change for her and with your help she will do fine. The site is a wealth of information and support I hope you connect with all that you need for help here. I hope you are all doing well today.