Adalimumab for uveitis

[Udupik]

I'm about to start adalimumab for uveitis as Methotexrate by itself is not working for me . A bit apprehensive. Any advice appreciated! Thanks much

[Investigator1]

Hi Udupik, sorry if you have heard this so I apologise if it gets boring in advance. You are probably aware that Adalimumab is a Monoclonal Antibody treatment that blocks the immune system, all “mab’s fall into this category and although work similarly and can treat the same problem they may target problems differently too. I am on Rituximab and they can both be used to treat RA.

I think everybody gets anxious when going onto these treatments so your not alone there. When you look at the side effects of Monoclonal Antibody treatment it’s like a dictionary but most of the side affects happen at application however some don’t, I have experienced joint pain, lightheadedness, shortage of breath and nausea but not really severe and have not far from run a normal life so the outlook is really positive for you. I know it’s worrying but I always try and remember it’s making me better.

On the flip side I may be coming off my Rituximab this year because my GPA marker is low and I am “bricking” it! So it just goes to show how easy it is to get used to it. Take care Udupik and hang in there, you know where we are if you need help and support.

[eh66 in reply to Investigator1]

Interesting. I am hoping my Rituximab infusion yesterday is my last for a long time. My markers are pretty low so my consultant is hopeful. For myself I am pretty pleased as it gives me hope that whilst I am not cured of this condition, I am stable enough not to have more infusions, and a more normal immune system. I do take an antibiotic(for sinus damage), and statin and blood pressure meds which have less known but beneficial effects for this condition.

Looking forward I know my consultant team are looking at other medications, that might be used in long term maintenance of remission.

[Investigator1 in reply to eh66]

That’s an interesting one eh66. I say that because my consultant hasn’t mentioned any maintenance therapy, she has said once I stop the infusions I have a 50% chance of relapse and if that happens I will be on Rituximab for life. That’s why I feel a bit like a lemming. On a more positive note I am sure there will be maintenance therapies that give you more immunity and that’s got to be a positive. Nick.

[eh66 in reply to Investigator1]

Everyone is different but there is postcode lottery around medications and treatment approaches. I am not convinced that all consultants use the latest best practice.

[Investigator1 in reply to eh66]

No me neither. Funny how you get these doubts, I have said in the past many times my Consultant is Renal, but has steered me to wellness however I had a booked appointment on 6th Jan, when I turned up I was told it was a telephone consultation but my letter said in person, this seemed to catch her on the hop and she kept saying “I don’t know”

[Main1234 in reply to Investigator1]

Can see why you would be concerned Nick. My OH has stopped RTX all bloods stable at the moment but continued to take MMF.

His consultant says it’s a continual juggling game. He goes for regular blood tests and we keep everything crossed !

[Investigator1 in reply to Main1234]

I think that’s the key Main1234 if you have regular blood tests you gain confidence in knowing you are ok but anything can be detected before it gets out of hand. Nick. PS Good to hear from you.

[Udupik in reply to Investigator1]

Thanks investigator1 . That indeed helps!

[thekeys46]

Hi Udupik,

I am on Humira. It’s the only thing that keeps my scleritis at bay. Ihave been on it since 2015 with a couple of breaks and then the scleritis comes back as bad as ever.

[Investigator1 in reply to thekeys46]

Hi thekeys46. That was my first sign of illness and being diagnosed with GPA and it came back when I relapsed so I guess that’s my warning sign although the Eye Casualty that I attended told me it was Episcleritis but who knows. Nick.

[thekeys46 in reply to Investigator1]

Did you have pain with the eye inflammation? If so it’s scleritis.

I was initially treated with steroid drops, then was on methotrexate, salazopyrin and hydroxychloroquin for RA. It had to fight to get seen by an eye hospital who put me on Humira . To me it’s a wonder drug.

[Investigator1]

Yes it hurt like hell! But only when I moved my eye to extremes but there was a by product of a constant headache the eye specialist told me it hurt because at was affecting my eye muscle but I suspected it was Scleritis, my eyes were red but in a quadrant. I had steroid eye drops and they temp upped my steroids and it did the trick.

[thekeys46 in reply to Investigator1]

before the Humira I had a red eye and pain for 3 weeks out of 4. Both eyes are affected.

[Investigator1 in reply to thekeys46]

It’s a beggar isn’t it, I have to say I visited my GP (he’s not there any more) 5 times before he referred me to hospital, he didn’t consult anybody he didn’t send me for bloods, I was short of breath, coughing up blood etc. After I was diagnosed the Head GP Honcho rang me and asked about how I thoughI had been treated. I diplomatically told her I was disappointed in not being investigated sooner and not discussed in practice. She said GPA is so rare and a lot of GPs wouldn’t recognise it. My reply! I said I have never been to the Empire State Building but if I got lost in New York and couldn’t see it above the skyline I would consult a guide, and if not ask somebody. Job done.

[Main1234 in reply to Investigator1]

I love your reply. My OH was not investigated or referred in a timely manner either. We were told the same about GPA being rare.. after 4 lots of antibiotics and becoming worse eventually referred. Really poor service and we lost confidence in them. Always go through consultant or nurse specialist now.