An update on Noah

It has been a LONG time since I’ve given any updates on Noah and his scleroderma, mostly because there hasn’t been much to report. Towards the beginning of the year we had to make the switch from methotrexate to celcept to treat it. It’s frustrating, because neither drug is actually designed for his disease – they’re for organ transplant recipients to protect against rejecting new organs. However, the limited success they’ve found over the years in holding off the progression (there’s no cure) of scleroderma has been in large doses of these drugs. Unfortunately, the size of the dose carries with it potentially severe side effects, which Noah began suffering from with the methotrexate (the preferred treatment for the time being). Massive headaches, constant nausea and ultimately, a liver in the red zone forced the doctors to pull Noah off of it. It was disappointing especially given that he was only at a fraction of the dose he needed to be at.

He was switched to cepcept and steroids, with the hope that the steroids would jumpstart the process and undo the amount of inflammation he was experiencing. Unfortunately, while the steroid did seem to succeed in that, the side effect was a lot of swelling, especially in the face, which meant he started getting teased about being fat and chubby. Over the last few months we’ve been dialing back the steroid dose which has been good since the puffiness has also largely gone away.

We’re also about to start increasing the dose of the celcept. The doctors are glad to see the inflammation reduced, but it’s still not to the point where we would want it. Heather and I had been concerned because we were noticing a lot of blueness/darkness appearing around his nose and eye and feared the scleroderma, but according to the doctor it’s due to the thinning of his skin (related to the disease, but not as scary as the inflammation which is the first step in serious degradation and scarring) and being able to see the blood vessels below the skin.

Ultimately, he hopes to get Noah back on the methotrexate injections. The real goal is to get him through the next 5-6 years without much progression and it will hopefully have gone away by then. He won’t be cured, and it could/will pop up in other places on his body, but it will have hopefully have moved on from his face by that point. Noah is generally in good spirits, although lately he’s been complaining more and more about having to take the medicine. He’s a trooper, but after several years now, he’s getting tired of it and wants to be done. The last couple weeks we’ve caught him fibbing to Heather and I when it’s time for his medicine – he’ll tell me that Heather already gave it to him, or tell her I already did.

Anyway, overall he’s doing good at the moment, but still not where we want him to be. Thanks for all the prayers!

 

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