New Biologics Treatment Coming

[DawnMezza]

I have now received the date for my biologics treatment delivery. Then a date for the nurse to attend the next 2 weeks.

Anyone else having biologics treatment?

How did it feel?

Side effects?

Thanks

[DorsetLady]

Hi,

Depending on what drug it is... if it's Tocilizumab you may like to ask on the other forum, there are a few patients with GCA on it.

[DawnMezza in reply to DorsetLady]

Hi DorsetLady

Yes that is the one. I will ask on the other forum. Thanks

[DorsetLady in reply to DawnMezza]

Good, hope you’re feeling a bit better now.

[DawnMezza in reply to DorsetLady]

I am feeling a lot better now thank you. Still on 60mg of Pred, which is what’s helping. I have realised I have a time slot of energy, pain free and ok vision for about 4-5 hours before it all starts to wear off. My eyes become very blurry as well after that time. So I am starting to notice patterns.

I guess it will all change once I start the new treatment. But I am very hopefully, fingers crossed.

How are you?

[DorsetLady in reply to DawnMezza]

Unfortunately the Pred (especially at high doses) can cause blurriness - which is a bit disconcerting.

Hopefully the TCZ will help you reduce the Pred, and generally help overall.

Me - good thanks very much.

Take care.

[EGPAGuy]

Hi Dawn. Hoping to start today so can send you a up to date report later.

[DawnMezza in reply to EGPAGuy]

Ooh that would be great. Good Luck

[EGPAGuy in reply to DawnMezza]

Hi Dawn. Had my first injection of Mepo at Addenbrookes. Pretty painless process but not sure how relevant to your process. Had an assessment and the biologic. One thing to factor in which may be the same is that you have to hang around for an hour afterwards. Hope this helps and good luck with your treatment. Lev

[AngharadJ5]

I started tocilizumab in February. I’ve been fairly good on it with rarely any side effects. But my hair dresser has noticed more hair coming out since being on this compared to previous treatments.

I have also experienced weight gain. My consultant reckons that’s because my immune system isn’t in overdrive anymore..

[alybill in reply to AngharadJ5]

My hair is falling out and it found that was deficient in Zinc. I had been taking a multi vitamin containing zinc and I just doubled up on them!!

[AmyS1]

Biologics saved me when other treatments didn't work!

[Wagener in reply to AmyS1]

Cyclophosphamide and Rituximab Saved my life after wagers damaged my kidneys

[Dancerina]

Tocilizumab and Rituximab did not work for my son. He is now starting Cytoxin which is the treatment they tried to avoid. After six months of it, they will try something else. Whenever he goes below 20 mg prednisone, he gets a flare up.

[DawnMezza]

They has been me. Every time I go below 20mg with Pred I have a flare up.I tried Cytoxin but it made my liver levels shoot thru the roof so has to come off.

Hopefully it will work for your son.

I have learnt that different things work for different people.