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Remicade to lupus to Stelara to Help

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Posted 1/21/2022 8:24 PM (GMT -8)
I developed lupus from Remicade which has my UC under control Started Stelara end of Oct. UC symptoms are back with a calprotin lab at 246. UGH. Lupus is still here and hoping it leaves soon. also on Hydrochloroquin and 7.mg prednisone. I really don't think it is doing a whole lot but not sure. The two together really suck. My Dr. wants me to start Uceris but even with insurance it is $1000.00 for one month. What have been others experience? Could it help to just go on on the Stelara. Just feeling kind of stuck.
Posted 1/22/2022 4:35 PM (GMT -8)
Sorry that you still have this complication. I just recall Jayce posting that her daughter got lupus from Remicade; she hasn't written recently so her daughter might have found a solution. Maybe if you search her most recent posts you can find the option she pursued. (I know she gets treatment from a very experienced IBD gastroenterologist because we discussed it here when Jayce first joined the forum.) Her daughter may have moved to Xeljanz, as I think Jayce last posted about her need to get Shingrix inoculation before starting that UC biological. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 1/22/2022 7:18 PM (GMT -8)
Have you looked at the Uceris copay assistance program? They used to have one at least. Budesonide is the generic. Is that cheaper for you? Stelara should be working by now if it was going to. Have your levels been checked? It did nothing for me. Xeljanz put me into remission.
Posted 1/27/2022 4:27 PM (GMT -8)
Thank you. My Dr. said it still may nit b enough time but that seems off to me. Wondering if the hydrochlorquin could be making it worse. I hate to do another 2 months if it isn't going to help. Also thank you for the name to search on here.

I have suddenly developed vertigo in the last coupe of weeks. So far has occurred 3 times today while sitting. Wondering if these meds are causing this. UGH.
Posted 1/27/2022 4:57 PM (GMT -8)
I developed drug induced Lupus while on Remicade years ago. I asked my gi to discuss with my rheumatologist if it would be possible to continue with Remicade & take hydrochlo., they agreed it would be ok to do both. I did have to go for an eye exam before starting it. I was doing so well on Remicade I didn't want to rock the boat. It took a good 6 months for the Remicade to get out of my system, it can take other longer. Your vertigo, call your dr tomorrow, do not ignore this, because hydrochl can affect vision, that's listed in the warnings. You don't have to wean off of it, I wouldn't take anymore if this were me. I know you aren't feeling well, but I would give the Stelara a little more time. You've been on it 3 months which isn't very long, but when you feel bad it feels like forever.

Take care.
Posted 1/29/2022 7:08 AM (GMT -8)

straydog said...
I developed drug induced Lupus while on Remicade years ago. I asked my gi to discuss with my rheumatologist if it would be possible to continue with Remicade & take hydrochlo., they agreed it would be ok to do both. I did have to go for an eye exam before starting it. I was doing so well on Remicade I didn't want to rock the boat. It took a good 6 months for the Remicade to get out of my system, it can take other longer. Your vertigo, call your dr tomorrow, do not ignore this, because hydrochl can affect vision, that's listed in the warnings. You don't have to wean off of it, I wouldn't take anymore if this were me. I know you aren't feeling well, but I would give the Stelara a little more time. You've been on it 3 months which isn't very long, but when you feel bad it feels like forever.

Take care.

Thank you . I appreciate your reply. I especially appreciate the info about hydrochl and vision. I have gotten dizzy daily all of my life due to Ehers Danlos and orthostatic intolerance but this vertigo thing happens when I am sitting. I will read up more about it and probably stop. I don't know that it has done much for pain. I think the prednisone helps more. I am on a really low dose of like 5-7 mg. I also just started on Entocort.
Posted 1/29/2022 8:19 AM (GMT -8)
I got a crazy reaction when we upped my Humira dose, severe dizziness and a feeling like I might pass out over and over. No doctors seemed to believe me or be able to figure it out, but thankfully it went away once I got off Humira. It was one of the scariest bodily things I've ever experienced. Hope the vertigo goes away soon. I bet it is from hydro. Or Stelara possibly.
Posted 2/1/2022 3:34 PM (GMT -8)

Sara14 said...
I got a crazy reaction when we upped my Humira dose, severe dizziness and a feeling like I might pass out over and over. No doctors seemed to believe me or be able to figure it out, but thankfully it went away once I got off Humira. It was one of the scariest bodily things I've ever experienced. Hope the vertigo goes away soon. I bet it is from hydro. Or Stelara possibly.[/quote

Thank you. Yeah the vertigo is crazy scary. I am used to be light headed everyday but this is something different. Like I am in another dimension with different gravity. I stopped the Hydroqlor. We shall see. Hoping pain does not get worse.

Posted 2/1/2022 5:05 PM (GMT -8)
Yeah, that type of stuff is very scary and can be pretty debilitating. I really hope it resolves for you soon and that med was the cause.
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