Thursday, June 13, 2019

An Update

Well, I had hoped that I would be updating you all that the new drug worked for Hannah, that her psoriatic and rheumatoid arthritis was in remission or at least getting better, and that she was pain free.  Unfortunately that's not our update.  Hannah has had three injections of Stelara, the new biologic that she was prescribed when we stopped her Enbrel.  It has been over 14 weeks since the first shot, and with this biologic, we should have seen some improvement or at least the stop of the progression of the disease.  Her psoriatic arthritis is continuing to spread, and her rheumatoid arthritis is now flaring, and in new joints - specifically in both of her feet.  She has pain every day, but is trying so hard to stay normal and finish the school year strong!  And every time her rheumatoid arthritis flares, she develops uveitis in her eyes.  We saw the pediatric ophthalmologist last week, and she has developed inflammation in both her eyes.  She is on steroid eyes drops multiple times a day, hopefully keeping the inflammation from causing permanent damage. 
So after a long conference with her rheumatologist on Monday, we decided together to put her on Humira, a drug similar to Enbrel.  She will receive injections every other week, and we are praying with faith that this biologic will halt the progression of all three diseases that she has, and give her relief from the pain.  But, through it all, we have seen God's faithfulness and we are thankful.  Thankful for doctors who take the time to talk, explain, and commiserate with us.  Thankful for an amazing team of nurses at CHOP who call and check on us and truly care how our whole family is coping.  Thankful that after months of fighting with our insurance company for drug approval, when the Humira was prescribed, it was approved in less than 36 hours and will be at our home tomorrow so that Hannah can receive her first injection tomorrow.  Thankful for our daughter's sweet spirit and constant joy - her attitude is always hopeful and she finds the best in every situation.  We covet your prayers - please pray that the Humira works, as we are running out of options for treatment.  Please pray that the new drug works quickly, and that there are not side effects or reactions.  Hannah still has some of the Stelara in her system, as it is an every 12 week drug, and so adding the Humira further suppresses her immune system and leaves her susceptible to infection.  Even a simple cold could cause her to become extremely sick.  Please pray for protection for our girl, and for her to be able to enjoy her summer and get ready to enter middle school!  Thank you for being on this crazy journey with us!


Sheri Reget said...

This whole journey just sucks. But I do want you to know that when my Becca was diagnosed with JIA at 10 years old, the Humira worked wonders for 5 years! Her rheumatologist said that on a scale of 1-100 her disease was about an 88 or 89 and she had it in every. single. joint. Praying your beautiful baby girl gets the same relief!!! I know it's scary, but it's also one of the longest, most proven biologics there is. Big hugs mama!!!

Jill said...

Prayers for sweet Hannah and your whole family. Will keep praying that this is the drug that gives her relief ! xoxo