Immunosuppressant treatment, prednisolone and rituximab?

[Midori1999]

I'm about to start high dose steroids (60mg prednisolone) and a rituximab infusion on Monday. Has anyone had similar or either of these drugs please and if so, how did you find it? I'm feeling ok about it, but would to be nice to know someone's been in a similar boat. Thanks!

I have Crohns and have had steroids in three blocks years ago and am currently on Infliximab, a similar treatment to Rituximab.

The Infliximab has been life-changing in its effect. Amazing drug and I hope Rituximab is as successful for your condition. I have had no side-effects apart from a scratchy throat (immediate) and a slight headache the day after.

I hated steroids. The first lot worked. The second lot a year later worked initially then stopped. The final lot a while later didn't work at all. While on them your body balloons especially the face. Your relationship with food changes because all you want to do is eat. All the time. Anything, including everyone's leftovers. Your mind is constantly thinking about your next meal. It's horrible. I refused steroids a few years ago,when they were suggested again.

If you've never had steroids before then try them as they can be very effective, but they are not the complete answer in my experience.

how long are the steroids for? be prepared for the side effects

heard lots of good stuff about rituximab

good luck

I also have Crohns & I'm on steroids at the moment after a small flare up. I hate them with a passion due to the side effects (my face is so fat & all I want to do is eat although that was a good thing when I started them as I'd lost about a stone & needed to put it back on). I'm reducing them slowly now & am hoping it all stays under control. I'm on Mercaptopurine at the moment to suppress my immune system but my doctors want me to consider Infliximab as I need surgery soon, possibly early next year & they think it'll keep the inflammation under better control. I've heard so many positive things about these so called biological treatments so please keep us posted on how you get on.

Dd2 has been on Prednisolone for 2 years to try and increase her platelets as her immune system is killing them every time fresh ones are produced. Initially she was on 40mg and reduced down to about 10mg but this has basically stopped working. For 18 months the consultant was trying to get her the Mabthera infusions but we live 200 yards over the county border and the county finance committee kept throwing it out. Eventually my private health insurance coughed up and dd2 completed 4 infusions last month. Initial signs are good with her platelet count within normal limits but it's early days as apparently it takes about 6 months for a definite result.
She takes Prednisilone with stomach settling medication, begins with M, can't remember the name and moon face kicked in immediately. Even with the tapering of the dose she has not lost the 'look'. She takes a calcium supplement as long term use is not good for bones. She also gets lots of headaches and tires easily although that could be because she's 19!
She has had no side effects from the Mabthera but I did worry when I read that no tests had been done to test if it affects fertility which is my main worry for the future. Apparently even if the drug works, in her case, the effects could wear off in a couple of years. So in our case not necessarily the 'superdrug' we were led to believe but obviously it's early days yet. She has her first follow up appointment with the consultant next week and hopefully her blood results will still be high and she can start to come off the Prednilisone.
Good luck with the treatment!

Thankyou. I have to admit though, it's not what I wanted to hear. The condition I have causes severe hypoglyceamia so treating that has already meant I've gained back 11lb of the 2 1/2 stone I worked very hard to lose. I do have to constantly eat now though, including in the middle of the night, to keep my blood glucose up, but I'm not hungry, so perhaps the steroids could make me feel better about that? I've been on 20mg prednisolone for just over a week now, but that's more for the side effect of increasing blood glucose levels than anything else.

I follow slimming world so I'm hoping as that doesn't limit amounts of food that I can at least not gain too much. I've spoken to my consultant and set my target weight at my current weight for now.

It's good to hear positives about the rituximab though.

Hopefully these treatments will work. My condition is very rare (less than 300 cases worldwide) so all treatment is experimental still really.

Kimaroo, the consultant did mention a stomach settling medicine too. I am on omeprozole now for that, but apparently it will need to change.

Things sound hard for your daughter, I hope the review brings good news.

Thank you. Keep us posted.

20mg is not too bad a dose of pred so hopefully side effects will be mild. hope it all goes well xx

Thanks Sanfairyann. They are increasing it to 60mg tomorrow, which my consultant seems to class as a high dose, but I have no idea.

hope it goes well. how long for? yes, 60 is more like high dose. hopefully it will be pretty straightforward.

Thanks, I'm not sure at the moment, but up to 8 months maybe. The rituximab will be 2 doses two weeks apart and that may be repeated in a few months or they may decide on another drug.

I'm hoping it will be straightforward, but it doesn't seem likely. I am already at high risk of clotting, so am on a treatment dose of heparin to prevent clots due to the steroids and the steroids may also cause dangerously high blood glucose, but treating that with insulin is potentially risky or ineffective, since I have huge amounts of insulin already in my system and am producing insulin antibodies, which is why I need the treatment in the first place. I'm sure it will keep the consultant on her toes though and no one can accuse me of being boring! Haha!

How did you get on with the infusion?

Thanks for asking. It went absolutely fine. I'm still in hospital just to keep an eye on my blood sugars with the steroids really but they're letting me go home/out for a few hours tomorrow to see what effect that has on my blood sugars and if all is ok I may be able to go home on Friday. The next rituximab infusion should be a day case if my blood sugars are ok and hopefully we'll start seeing some improvement in my symptoms a couple of weeks after that.

Glad it went well.

Glad it went well, hope you get home soon.