Stelara: I suffer from intermittent, life... - Behçet's UK

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Stelara

Pixie013 profile image
Pixie013

I suffer from intermittent, life-threatenimg inflammatory Behcet's and will be starting Stelar within the next month following my secondary COVID vaccination. My rheumatologist and gatroenterologist recommended it because it target 2 sources of inflammation.

Anyone else on Stelara?

9 Replies

I have been taking Stelara since June 2020. It is helping the genital ulers, mouth ulcers and skin but not the inflammatory arthritis.

Pixie013 profile image
Pixie013 in reply to Sherlock11

Hi Sherlock!

Thanks for your response. Good to know it has helped some aspects of your Behcet's-- I'm sorry it hasn't help with the inflammatory arthritis.

Peer-reviewed studies indicate it causes arthralgia in 3% of those who take it. <Sigh>. I hope I don't develop that particular side effect.

I also have psoriatic arthritis and Stelara is indicated for that. We never know how effective a treatment will be until we try it. The experimentation brings highs and lows--at least for me.

I'm starting on the lower dose and am taking it with methotrexate. Do you also take methotrexate?

Looking forward to hearing from you!

Sherlock11 profile image
Sherlock11 in reply to Pixie013

I am on the lower dose, 45mgs every 12 weeks. I have had methotrexate in the past and it caused problems with LFT's although it helped the arthritis.

Pixie013 profile image
Pixie013 in reply to Sherlock11

Finding the right combination of medications that do not harm is quite tricky, isn't it?

My dose of methotrexate was just reduces because of liver impacts.

I was diagnosed with Behcet's almost 31 years ago and am still working full-time and would like to continue that. I just recovered from a protracted episode of bilateral uveitis and a nasal ulcer that opened to the surface of my nose. I sure hope Stelara helps.

Do you work, Sherlock? Does Stelara allow you to function reasonably well?

Sherlock11 profile image
Sherlock11 in reply to Pixie013

No I don't work I have other health issues.

ShortLady profile image
ShortLady in reply to Pixie013

Can I ask you if the psoriatic arthritis affected your finger joints, and if in those fingers your nails peeled off to a bleeding mess? I have arthritis in ring, Little and middle fingers. My right ring finger is worse and very inflexible. But about 18 mths ago, my nail started breaking up near the cuticle and has just peeled off, won't grow back and is always bleeding. Dr said not sure, maybe it's eczema, maybe psoriatic. I've had eczema before and not had lumpy bony knuckles like this with it, and the peeling, scaling off means wherever I'm sitting and my clothes gets powdery, flaky dandruff from just that finger nail, and that seems more like psoriasis. GP just prescribed a moisturiser saying it looks dry. The skin underneath the peeling nail is usually very pink, or bleeding and raw. People think I've bitten it off or peeled it back but I haven't. It won't grow. I also have a Chronic Vit D deficiency does that affect psoriayic

Pixie013 profile image
Pixie013 in reply to ShortLady

Hi Shortly.

My psoriatic nail disease manifests with extensive nail pitting and white patches of inflammation below the nail. Some nails eventually fall off--but I have not experienced flaking.

I'm unaware of any link between vitamin D deficiency and psoriasis and psoriatic arthritis.

The bones in my toes have curled, but my rheumatologist has said it was caused by osteoarthritis.

My mom and paternal grandmother had severe psoriasis/psoriatic arthritis. Apparently there is a strong familial link that is considered as part of the diagnostic process.

Do you have a family history?

ShortLady profile image
ShortLady in reply to Pixie013

My nails on little fingers haven't do much as flaked, but peeled anseparated at the quick, but skin around the nail peels and eventually nail disappears. It's not growing back without splitting around the quick. It's intensely itchy in a sort of nipping, biting pain and first two joints on fingers are swollen with massive dips in fingers like someone's joints in their 80s but I'm in my 50s.

Pixie013 profile image
Pixie013 in reply to ShortLady

Oh my gosh, Shortly.

The situation with your nails sounds unpleasant. Are you able to get a consult with a dermatologist?

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