Input on side effects from 6MP, Prednisone, and Simponi? Can't seem to get into remission!

[jwalk161]

Hi there!
I am new to this site, just joined today, but I am really looking for advice/help! I was diagnosed in 2013 with Proctitis and since then it has gradually been getting worse and worse. I am now diagnosed with Ulcerative Colitis. I have not been able to maintain a period of remission for more than 3 months at a time. This time has been the worst by far. I am currently on Prednisone 40mg, 6MP 50mg, Giazo 1.1g(? not sure the dosage), pain medication every 4-6 hours, and today just started Simponi injections.

The Simponi injections are my biggest concern, just because I haven't been able to find a lot of forums or discussions on it and I am really unsure of what to expect from them. I was hoping my GI would at least take me off of 6MP when I started the injections, but it's not looking like that is going to happen. When I asked when I could stop, the response was "One day." So I am really wondering what to expect? If anyone else has used Simponi when did your symptoms/ flare start to get better? I am starting to get really hopeless that nothing is going to work.

I am also wondering whether the 6MP side effects will go away with time and as my body adjusts, if they might get worse or more intense, etcetera. Right now I am experiencing occasional intense headaches, nausea that comes and goes, overall exhausted (which is in part due to the flare), and a sore throat and cough.

Then with the Prednisone, I have been on it for about 1 month, maybe a little longer now at a constant 40mg/ day. I feel super large and have definitely gained weight, which is not normal for me during a flare. I'm wondering if anyone else has experienced this problem?

Any advice or suggestions anyone has to get me into remission or at least feeling a little better would be much appreciated!!
:confused2:

 

[obascin]

I can only speak for the 6MP. I had a rough time at the beginning (nadal period) since I was on a higher dose (100mg). I also had nausea and headaches and bad fatigue. However, all of that went away after a few weeks. I had to take about 3 days off however during my surgery, and I actually had issues with the same side effects when I started taking it again.

So ultimately, yes the side effects appear to disappear as your body gets used to it.

 

[Maya142]

My daughter is on Simponi injections and has had no side effects so far. She hasn't been on Simponi very long, so we haven't really seen any results yet.

She hasn't been on 6MP but is on Imuran. She had pretty bad nausea with Imuran initially but it got better after a few days.

Good luck!

 

[UnXmas]

Then with the Prednisone, I have been on it for about 1 month, maybe a little longer now at a constant 40mg/ day. I feel super large and have definitely gained weight, which is not normal for me during a flare. I'm wondering if anyone else has experienced this problem?

Weight gain is a common prednisone side effect. It may make you gain a little due to water retention. But the more significant increases it can cause are due to it increasing your appetite. This means it can't make you gain that weight on its own, only if you're eating more because of it. Ignore the increased appetite and it can't make you gain.

 

[24601]

Hi jwalk61,
Welcome to the forum. I understand your anxiety about starting a new medication. You can see some others talking about Simponi on the forum in these threads here.

I hope it works well for you. Do keep us updated. I hope your side effects from 6mp have also improved - do be sure to let your doctor know if these side effects are continuing.

Good luck!

p.s. there's a prednisone sub-forum here where you'll find a lot of people experiencing the same side effects as you.