Back home after spending 10 days in hospital after a TAK flare up.

[DawnMezza]

Was admitted to hospital 10 days ago after a violent flare up from TAK.

Screaming headaches, which led to some numbness down my temple, cheek and jaw and heavy arms and tingling in little fingers and chest pain. At first they thought I had had a stroke or a heart attack. Anyway after many scans and X-rays and ultrasounds all was fine. Apart from some vessels which are damaged, but are awaiting to see previous images, to see if a stent will be required, but hopefully not.

Increased prednisone to 60mg then went up to 1g via IV for several days. Stopped Methotrexate as it was damaging my liver and my liver levels went flooding through the ceiling to almost 1000. Back down to 60mg pred and waiting to start biologics.

The pressure from the TAK in the arteries in my head have caused papilloedema, so my optic nerve/lens have some damage. Follow up with the Retina Unit. Along with Rheumatology, Vascular Team and possibly Cardiology.

It’s so good to be back home and I am hoping for a bit more of a sleep than 1 hour at a time tonight.

[DorsetLady]

Sorry to hear about recent events…and yes hopefully at home will give you better nights. My late hubby always said after a few days in hospital he needed to come home for a rest!

[DawnMezza in reply to DorsetLady]

It’s quite exhausting in the hospital, you don’t get left alone. 🙄

[DorsetLady in reply to DawnMezza]

Don’t you don’t…and if they aren’t dealing with you, you still get disturbed when they are treating other patients.

Hope you soon feel better.

[DawnMezza]

Thank you xx

[whitefishbay]

Poor you. Hospitals are exhausting. Hope they figure out what's going on.

[EGPAGuy]

Hi Dawn. Hope you get there soon and best thoughts with you.

[Investigator1]

Hi Dawn. What an ordeal. I was talking to somebody having the check ups at the same time as me with TAK, I wasn’t that familiar with it but I can see how serious things are with it. My sister in law texted me Monday to ask if I knew anything about it as one her colleagues partners had been recently diagnosed with it. She said it wasn’t going to be a major issue as she said it wasn’t serious. Didn’t know what to say. Far from it I would have thought. Take care hopefully the worst is over with.

[Sophiestree]

Wow, you've really been through it. Rest and more rest. I hope it's all under control now for you. It must be great to be home. But it sounds like they were doing everything they could for you. Look after yourself. I only had 3 days of 1g iv and that was crazy. Hugs to you

[DawnMezza]

Thank you everyone for your kind words of support. I had a good nights sleep thankfully and will continue to rest.

[Mooka]

How awful for you. I hope you feel better soon and don’t have lasting damage. I’m sure a good nights sleep in your own bed will be a massive help. Hospital stays are exhausting at the best of times. X

[michichgo]

Besides these few written words I'm sending you healing energy and the most positive of vibes. Pain is bad enough, let alone pain and hospitalization. Best wishes for improved health and uninterrupted rest.

[DawnMezza in reply to michichgo]

Thank you Michichgo