Remicade, Tremfya and Prednisone
I am curious to get some input on other people experiences.(its a long story so bare with me) I was on Remicade for almost 2 years and had decent results on the symptom side, but very difficult side effects, which combined with a good flare made my Dr and I decide to make a move to Tremfya. Since I was in a full flare, we used Prednisone during the conversion. The combination and conversion to Tremfya went pretty well other than I needed to stay on some level of Prednisone for almost 4 months. (there were small periods of days that I was off, but we are talking days) Anyways, now fully on Tremfya for 8 weeks and once I came off the prednisone taper at 5mg, I got sick with a huge # of symptoms ranging from headache, nausea, bloat, shakiness, flush feeling, sleep disturbances, anxiety, and a rash. This has been going on for almost 2 weeks. My cortisone levels looked normal and my Dr said sometimes its a bit rough coming off the steroids as they are like a "superman" drug. I know my immune system has been in a huge state of change between being on steroids and 2 different biologics, but 2 weeks of these symptoms has me very down. So couple questions. I have read the "prednisone withdrawal" period can linger from days to weeks. Has anyone experienced this? Regarding Tremfya, all info seems to show very few and mild side effects, but what is the likelihood that the Tremfya is causing this? My UC is doing great, but to add to it all, I just got a small respiratory virus over the last couple days. September is not off to a great start. I am looking to find certainty and light at the end of the tunnel. Thank you for any inputs.
Hi
. It is certainly understandable that all of these issues would be disconcerting (I know, really an understatement). Mind if I ask what level of prednisone you were on before the taper? Coming off of steroids can absolutely cause various issues, such as rash can be part of a rebound effect as inflammation jumps up and mast cells are no longer repressed. The anxiety, sleep issues, and shakiness are absolutely symptoms of prednisone withdraw (plus the other symptoms will add to this). I also want to note that abdominal issues, such as stomach pain, gas, and diarrhea can be a side effect of Tremfya. These may subside as your body adjusts.
It does sound like your body has been under a lot of strain and changes and, hopefully, will adapt and recover. It sounds like this is what your doctor may be expecting. It is a good sign that your UC is doing well and, if these other things subside, you will be on your way back to a good normal. That said, if problems persist don't hesitate to get back in contact with the doctor to see if more needs to be done. Hope things improve soon and please don't hesitate to keep us posted on how things are going and to ask additional questions. Best, Richard (Team Member)At a max level I was at 40mg, but moved to 30mg, then 20mg, then 10mg and then I finished. But then I was still having some UC issue at 10mg and below so I moved back to 20mg and stayed on that for about 2 weeks and then went to 15mg for 10 days, then 10mg for 10 days and then 5mg for 10 days to finish. I was on it for a good portion of 4 months. I am just surprised the withdrawal symptoms can take weeks to go away. Tomorrow is 2 weeks. I do see some light at the end of the tunnel, but it is slow going.
Hi
. I have seen that it can take the hormone levels in the body up to a month(s) to return to normal following a prednisone taper. So, hopefully you will continue seeing improvements and the UC will remain under control with the Tremfya. Wishing you the best. Richard (Team Member)
Hi Richard, Thank you again! So you are saying you have seen it take up to a month, but you have also seen it take plural, months??
Hi
. I have seen how long prednisone withdraw can take discussed on medical sites and in person or through others experience. My wife, Kelly, was diagnosed with a severe form of a different autoimmune condition at age two, 47 years ago (juvenile RA in her case and has used a wheelchair since childhood). She has been on prednisone at various levels for much of her life and has friends who have been on it similarly for years. Kelly has actually always handled prednisone well, with few side effects and tapers that went pretty smoothly. A good friend, in contrast, has had a lot of issues with side effects and significant periods of time. Individual stories are, of course, anecdotal, but, as I mentioned, medical sites confirm this. For example, just came across this site that notes "For those on long-term or high-dose therapy, the recovery can take several weeks or even months as the body recalibrates:" https://doralhw.org/after-steroids-how-your-immune-system-rebuilds-and-what-you-can-do-to-support-it/. That said, I do think most people don't deal with these extended periods. Hoping you start to see improvement soon. Please feel free to keep us posted on how you are doing and, if symptoms persist, don't hesitate to reach out to the doctor. Best, Richard (Team Member)
Hi Richard, Hope you had a great weekend. I know its a couple weeks since you had responded to me. (thank you by the way)
So, I am at the 30 day mark and I am still getting side effects. I guess my body still has some work to do. With your experience over a good number of people, do you still see some people getting nausea, shakiness and anxiety waves/spikes as the body still tries to adjust the cortisol levels? I can deal with all of this, but the anxiety and shakiness seems to become a self-fulfilling downward spiral that seems very hard to control. In your experience is this the drug (or lack of cortisol) that triggers anxiety and shakiness more than the person's mind? I talked to my Dr on this, but they sometimes seem a bit nonspecific on addressing.
Hoping I am nearing the end soon.
Curious to your thoughts.
Thanks,Hi
. I can't say that I personally have seen this, but, as noted here (https://middlesexhealth.org/learning-center/qanda/prednisone-withdrawal-why-taper-down-slowly) it can occur. That said, at this point you may want to consult your doctor what can be done to mitigate these issues. Wishing you the best and please feel free to keep us posted. Best, Richard (Team Member)
