Concerned or not to be concerned, that is the question....

[LSurtees]

Hey all

A lot has happened over past 6 weeks, I spent 4 weeks in hospital with neurological symptoms. I have now being diagnosed with:

SLE - I have had two Rituximab infusions so far

Alopeca

Arthritis

Anti Ro - unsure what this is

DNA - again not sure what this is

Migraines

Malay rash

APS - and I had an TIA. I was started immediately on Tinziparin injections

All this from November. I started the anticoagulant clinic on Tuesday and my INR was 0.9 and was put straight on 10mg warfarin and continue with injections. At my appt yesterday my INR was 4.2. They called for the on call registrar who reduced my warfarin to 2mg but again continue with injections. I have today received a call for me to attend a ward tomorrow for further tests.

This is a lot to take in! My neurological symptoms are still the same if anything they are worse. No one can answer if these symptoms are linked to my INR.

Has anyone had anything similar and did they eventually get it under control? It's taken over my life.......

Big hugs

Linds

[PMRpro]

It usually takes a couple of weeks to get the INR sorted - and to be honest I'd have said 10mg straight off for more than 2 days was a bit cavalier! I wasn't allowed out of hospital until it looked steady! But that isn't in the UK...

After 4 years no bother at all I had problems with something in the warfarin family last year and was switched one of the new generation anticoagulants (I have atrial fibrillation though, I don't think they are used in APS yet). Once my husband's INR on warfarin is correct he takes 2mg every day, 2.5mg on Sundays and his INR never budges from 2.2.

Just be patient - it will get better.

[Georgie-girl]

Can't really be of much help here as the extent of my blood thinning is a daily aspirin, but I can tell you that the Anti Ro antibody you mention is pretty specific to Sjogrens syndrome.

With it, often comes neurological symptoms and although I don't know what your symptoms are, it's possible this is the cause of a lot of them. Also, APS causes a lot of neurological symptoms so it seems you have a double whammy.

As Pro said, it will get better. Be strong and good luck. Keep us posted please.

[EOLHPC]

Hello linds 🙋🏼sending you lots of love + 💐💐💐💐 + a big basket full of gentle hugs (treatment plan: minimum 4 per day, evenly spaced 😉...double doses permitted if required 👍)

Am so glad of this update: thanks! You've been on my mind...what a lot you're going through! It's good your medics are stepping up big time...and the diagnosis process is moving along at a fair rate....this is no picnic...am vvvv much feeling for you

👏👏👏👏 You've got great replies from PMRpro & GG...this area is not one I know much about

Please keep posting your news...will be watching out for updates

Your cats must be so glad you're home 🐾🐾❤️

🍀😘🍀😘🍀😘🍀😘 coco

[Charliebear68]

That is a lot to take in!

Sending you gentle hugs,

C xx

[LSurtees]

Thank you all for your thoughts and kind words.

Hopefully I won't be kept in tomorrow and will have some better news.

My neurological symptoms are constant tingling, numbness, coldness, tremors and loss of use in my right hand, foot and constant hip pain. I'm also suffering with severe headaches and slurred speech from time to time.

I will keep you all updated xxx

[Georgie-girl]

That sounds more like sjogrens than Lupus to me. The headaches I'd say are due to the APS but the rest definitely sounds like sjogrens. Perhaps while you're in the hospital you could ask one of the medics about this and maybe get it checked out and explained to you properly so you're not left worrying and not knowing.

Good luck tomorrow X

[misty14]

Hi lsurtees

So sorry to read your having such a tough time. Do hope it's all sorted very soon. TAKE CARE and be better soon. X

[baba]

Sorry to hear you have had such a bad time. Are you aware if the brilliant APS/Hughes Syndrome/"Sticky blood" forum here on healthUnlocked.

healthunlocked.com/hughes-s...