Medications
My son has Down's, is also autistic and non verbal. Sweetest kid....so kind. Due to his inability to tell us how he's feeling it's a constant guessing game for his doctors and me. Yes, monthly labs, periodic scans, etc., help. Although I don't know if he has symptoms many of you list at least I am aware he might so I don't dismiss his moodiness when he's moody....I thank you all so much for helping me know the 'maybes'.
Very curious as to the medications you take. I'd like to know what is working for you and what hasn't.
Harry's meds listed below
Orals:
Hydroxychloroquine
Mycophenolate/Cellcept
Gabapentin
Topical:
Diclofenac Gel....he'll bring me the med and point to where he needs it....usually his ankles.
If you take any of the same....what side affects have you experienced.
Any input would be greatly appreciated.
Hi
, lovely to see your username pop up here again. How have you and your dear son been lately? I think I mentioned to you previously about my sister who is autistic and non-verbal - she doesn't have PsA but is on different medications for various things. I can empathise with wondering how your son is feeling and if he's experiencing any side effects from the medications.
I haven't taken any of the medications that you mention (I did take Diclofenac orally for a while) but I know we have some community members who do/have. I hope they'll stop by to share with you. I currently take methotrexate and find it really helpful. Prior to starting on methotrexate, I went through a few oral NSAIDs and didn't feel that they really made any difference for me, but that's just my personal experience. If you'd like to, you're welcome to browse through the other forum posts here, where there's lots of experiences with the different medications: https://psoriatic-arthritis.com/forums
Hoping you'll get some more input here! Best of all wishes to you and your son. Warmly, -Catherine, Community ModeratorThank you so much! The information/support here is a blessing.
Hello
, thank you for sharing this with us. I hope you and your son are hanging in there well. I have been on so many medications over the decades that I have forgotten half of them. The 2 that stick out the most because of side effects were gabapentin and methotrexate. The gabapentin just made me very sleepy, and tired, and had diarrhea all the time. Methotrexate made me dizzy, hair loss, and terrible infections. I decided on my own not to take them anymore. But gabapentin did work best for the pain. You stay strong; you got this!!! I'm sending a big hug your way for both of you. Diane (Team Member)
Diarrhea from Gabapentin?! I'm on it as well and guess what! Yep. I thought it was old age....I blame everything on living past my sell by date. Well!......pain or diarrhea....I choose the later and pop an Imodium regularly. Mystery solved, thank you! Will have to keep a closer eye on Harry's potty adventures.
Thank you!
, hydroxychloroquine was the first medication that I was prescribed. I lived in the bathroom. My rheumatologist at the time didn't want me to take Imodium. He was a rather snarly man and didn't explain why I couldn't treat the side effects. I have since moved on medication wise and doctor wise!
Please let your son know that I think that he is very brave and that I wish him all the best!
