Trying to find a competent provider/clinic and reliable health insurance...
Moved from WA to FL and lost my medical insurance and of course my doctor. Trouble finding competent and knowledgeable providers. Also need recommendations for reliable healthcare insurances. Have tried 6 treatment options and my WA doc settled on Stelara which I've been taking for about 8 years. Used to self inject but now my present insurance will only cover office injections. The docs I have now can't decide whether I need strong and/or more frequent injections or to change me to another biologic...FRUSTRATING!
Hi
. I can't speak to particular doctors or insurance, but I want to share with you this Find a Gastroenterologist site from the American College of Gastroenterology: https://gi.org/patients/find-a-gastroenterologist/. You mention that the current doctors are discussing stronger or additional treatment. Do you feel you condition is no longer well controlled? Hopefully others will chime in with additional information/thoughts. Best, Richard (Team Member) Thank you, Richard. I am nauseated for the next 2 days after Stelara injection, then things settle back to "normal". This symptom did not occur until about 2 yrs ago. The GI specialist said it is because the current dosage and frequency is not enough and wants to either increase the frequency or dosage...maybe both. Now this is after $2K worth of labs assuring I had not developed an immune response to the Stelara and this causing a 3 week delay for that next injection. She is also considering changing to a different biologic. My insurance said they will not cover the dosage nor frequency increase. Stelara itself has been an approved drug for psoriasis since 2009! Then in 2016, approved for UC. I was enrolled in the FDA study in WA around 2013 after being taken off Humira because of high liver enzymes. Wouldn't you think that Janssen could recoup their R&D investments by now? I guess not at $22K a pop. This is my time to look for a different insurer (other than Florida Blue HMO) and maybe some sort of drug rider or copay. Janssen assistance is reevaluating their programs, I am employed with a "moderate" income that places me just about $10K above many assistance programs, so not much help there. The Crohn's and Colitis Foundation is helping me with some resources...they are nice (https://www.crohnscolitisfoundation.org/). I'm seeking a healthcare insurance navigator/advocate here in Florida as well.
Hi
. First, I'm going to do a little personal rant - I'm a firm believer that anyone who participates in the trial for the drug should be entitled to it if it goes on to be approved. That seems only fair for taking the risk and making the approval possible. Plus, it would go a long way to help with getting trial participants. It would seem to be a win-win. O.K., end of rant. Mind if I ask if the doctor is concerned that increasing the dosage would increase the nausea you get for a couple of days following the injection and do they have any thoughts on what is causing that? Also, has your doctor discussed which biologic they are thinking of as a replacement? I ask because this would enable you to look into it and make an informed decision. Hoping you can get some answers and some of this sorted so you can get some relief. Please feel free to keep us posted on how things are going and to ask additional questions. Best, Richard (Team Member)
Richard - Up until about 2 years ago, I had little if any post injection nausea. Now I get it every time for 3 days. The doc said that this is a sign of my body getting used to the Stelara (desensitized) and a higher dosage and/or frequency is routinely the next step per J&J protocol. The new med he's thinking about is Skyrivi, but once off Stelara, you can't go back. I need a colonoscopy to determine which route to take. Insurance doesn't want to cover it since it's less than 2 yrs; waiting for prior authorization. Ultimately I'm looking for feedback from anyone who has a good health insurance program and will cooperate with the specialists. My Florida Blue HMO constantly puts roadblocks up.
Hi
. I noticed you mentioned not being able to go back on Stelara if you stop taking it. I want to share with you this article on restarting biologics after a drug holiday where a doctor states "There is not much research yet involving the restarting of the newer therapies of vedolizumab (Entyvio, Takeda) and ustekinumab (Stelara, Janssen), but these agents have fairly low immunogenic potential and restarting them does not appear to have a high risk of stimulating antidrug antibodies. My colleagues and I have had some patients who had drug holidays from those therapies and then went back to them without experiencing any difficulty:" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6883732/. Your doctor may be able to provide further information on this and potentially put your mind a little more at ease about trying the Skyrizi if necessary. Best, Richard (Team Member)
THANK YOU! Now if my "specialist" GI docs could only read and keep up with the trend. I will ask them to consider reading this article.
I think that's a great idea! Ultimately, we are not doctors, so we can't give medical advice. That being said, it is often worth reaching out to doctors to get their thoughts on a particular study and if it pertains to our situations. -Eshani (IBD Team Member)
