Does anyone have experience with Humira for Takayasu's Arteritis ?

[Shivanjali]

OUr niece aged 13 is currently on methotrexate, prednisone as well as frusemide, ramipril now stopped, omeprazole. On the outside she is positive but very tired a lot of the time. On the inside, is another story. She first went into hospital last April and it is nearly a year since she started treatment for Takayasu's arteritis. Her internal physiology has not improved and humira has now been brought forward as a possible treatment - the info online about this is frightening, but there are also positive stories. It feels like she is an experiment for anyone who comes across her medically. We just want her to show some sign of improvement. Anyone out there who has been using humira and can share their experience ?

[Shivanjali]

It also goes by the name 'adalimumab' - I have found some info in other community pages via search but nothing within this community. Thank you.

[PatriciaAnn]

Hi Shivanjali

Have you seen the Takayasu's Arteritis page on the V-UK website? vasculitis.org.uk/about-vas...

This was written for V-UK by Prof Mason. He doesn't mention adalimumab by name but does mention infliximab and toclizumab.

According to the Glossary of Drugs on the V-UK site the following is noted about Adalimumab which I hope might help:

Adalimumab (Humira)

An artificial manufactured antibody that can be injected to reduce the effect of tumour necrosis factor alpha (TNF). TNF is an important protein in the body that can cause inflammation and is important in fighting infection. Immediate side effects are unusual but can include: mouth ulceration, diarrhoea, cough, dizziness, fatigue, paraesthesia (tingling of the skin), musculoskeletal pain, rash and pruritus (itching). A major side effect can be a reduced ability to fight some types of infection and possibly to control cancer cells in the body.

PatriciaAnn

[Shivanjali]

Thanks PatriciaAnn. I did have a look there and didn't see humira hence posting here. I have found some info the NRAS community page and on Crohns pages - most stories are very positive. However, it is often offered after other treatments have stopped working or haven't been successful as someone mentioned it is very expensive so not readily prescribed. I haven't seen it on any vasculitis pages. I think the plan is to treat her more aggressively to get inflammation under control as pred and methotrexate have not had the desired effect. They are then going to schedule an angioplasty and stent placement. We are all very concerned but trying to remain positive.

[PatriciaAnn]

Hi Shivanjali

I hope that all goes well for your neice, it must be a very worrying time for you all.

PatriciaAnn

[Ashpeng89]

I have been on humira to treat TA for 3plus years. The first 6 month is great. But gradually the medicine didn't work as well. The problem is the active life of humira is 5.5 days. It doesn't stay in the body long. Therefore, you have the chance of flaring if not managed well. I was on it every 15 days. Then I realized I needed more n more as time come close to the 15 days. The side effect is terrible. I had psoriasis, I beca emotional and I become less of myself. But my body was strong. Like a normal person. U begin to lose concentration and short term memory. The perfect balance was when I had little bit of predinsone while on humira. But it's ver hard to balance. remicade is better in that it stays in the body longer.

[annsus in reply to Ashpeng89]

Hi ashpeng89,

How are you doing?are you still on adalimumab? My mom has TA and recently has developed aorta aneurysm. She was prescribed with adalimumab . I heard that there are risks involved after taking it. I wonder if this ink serves the purpose. Appreciate any updates or suggestions reg adalimumab.

Thanks