Trying another tiny steroid drop soon

[vivdunstan]

On Saturday we'll be lowering my daily steroids a bit more, from 7.5mg to 7mg. We're definitely near the limit of how low I can go, and my consultant is being very realistic in expectations. But going to try. Would have done this some months ago, but I knew we had a surprise Swedish wedding trip to go to! And since it takes me 3 months or more to recover from each tiny dose drop I had to wait until back from Sweden, otherwise I wouldn't be well enough for the trip. But now happening. Every time I drop my neurological symptoms increase, as the inflammation in the blood vessels in my brain temporarily increases. So I have huge problems controlling my arms and my legs, get very sluggish and confused, increased sleeping up to 18 hours every day, crippling headaches, and off the scale bladder incontinence with urgency and frequency. But it does usually settle. It makes for a difficult few months! But going to have another go. Sometimes I have to go up again for a bit. And over the last few years I've only been managing a net drop of 0.5mg each year. That is not normal for vasculitis patients, but my cerebral vasculitis disease fights back badly at each drop. But I persevere. Excited to try anyway! I've been on daily steroids for 21 years now, to keep me alive, and particularly high doses long-term since my huge disease relapse in 2004.

[U06334]

All the best for the drop. Do you know what sparked the relapse in 2004? I was diagnosed with CV after several strokes and have been off the Pred now for a few years, but am having some strange symptoms.

[vivdunstan Volunteer in reply to U06334]

No idea - it just came out of the blue. Relapses often do. Usually they'd be some of your original symptoms recurring. In my case it was pretty dramatic, and stroke-like. I suddenly started falling over to the right hand side, was unable to control my right arm, had severe headaches (I'd never had headaches with my cerebral vasculitis before), and bladder incontinence went bonkers again. Wobble into doctors, get tested, and my blood inflammation markers had shot up (they, too, had never been useful before that point). So then steroids shot up, and the consultant saw me fast to decide on new treatment.

[U06334 in reply to vivdunstan]

Sounds like you have an awesome consultant. All the best.

[vivdunstan Volunteer in reply to U06334]

That was my old one, who retired a few years ago. He'd originally diagnosed my disease in 1997, 3 years after I first fell ill.

Fortunately my new consultant is awesome too

All the best.

[U06334 in reply to vivdunstan]

Wow! You were really fortunate. I was told it was rare in 2008, so there must have been very few consultants who could diagnose it in 1997. So much progress has been made since then. Thinking of you with your steroid drop. Onward and upward ...

[PMRpro]

All the best Viv!

[vivdunstan Volunteer in reply to PMRpro]

Thank you

[grindhaus]

Good luck Viv- I hope the transition won't be too hard on you-

All the best-

[vivdunstan Volunteer in reply to grindhaus]

Thank you

[michichgo]

Sending gentle hugs and healthy vibes from Chicago(ish)! Be well, soon, dear.