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Autoimmune disease

DD starting Infliximab infusions on top of steroids and Azathioprine

14 replies

cuddles37 · 24/06/2019 21:52

Hello, I have chatted with a few other mums on here but thought I would start a new fresh thread. My very poorly 13 year old DD is starting infusions the week after next. She had tapered down to 15mg but it all flared up again and so now she is on 40mg prednisolone and 100mg Azathioprine. She also takes Omeprazole morning and night, Adcal D3 am and pm. she has also just finished her 4th course of antibiotics for recurring urine and chest infections. Multivitamins and Biotin too. And Salofalk mesalazine 4g a day. Are there any other mums out there in the same boat? I feel like I am losing my mind most of the time, two weeks ago, I was diagnosed with underactive thyroid and put on Thyroxine. But that is a side issue. I would love to chat with other mums x

OP posts:
HebeMumsnet · 25/06/2019 15:37

Hello OP. Sorry to hear you've got such a lot on your plate with all this. We just wanted to bump your thread for you and see if there's anyone about today who might be in a similar boat and available for a chat.

AlannaOfTrebond · 25/06/2019 18:40

Hi cuddles,

I can't help with the Mum bit, but I've been on Imfliximab for a few months now after what sounds like a very similar drug regimen for newly diagnosed Ulcerative Colitis.

Steroids didn't really work for me either hence the Imfliximab. For me it has been a miracle drug, within a week I was back to 8 mile hikes. The first few infusions take quite a while as it is 2 hours for the infusion, plus 2 hours before I was allowed to leave afterwards, but the day case unit at my local hospital where I've been going is very comfortable and the staff are wonderful.

I hope it works out as well for your DD as it has for me and that both you and she are feeling better soon.

cuddles37 · 25/06/2019 19:53

Hello AlannaOfTrebond and thanks for bumping my thread HebeMumsnet :) that is most encouraging Alanna. My DD was wondering if she would feel better even after the first infusion? it took her so long to get tapered off the steroids to 15mg, she was counting down the days as she has every single side effect and is so tired of it all. She was on Clipper steroid for two months, came off it, flared up. Prednisolone for the past three months. I have Crohns but never needed to go on the infusions but was on Azathioprine and Mercaptopurine. Thank you for your kind, encouraging words x

OP posts:
Northernlurker · 25/06/2019 20:10

It's such a worry isn't it op? I don't have anything like what you re contending with but dd2 (18) is on methotrexate for psoriasis. She also has a heart murmur caused by pulmonary stenosis. Thankfully that hasn't needed treatment and our last check up was v reassuring but you are never worry free. She's getting on ok with the methotrexate atm but if that changes we'd probably have to look at biologics. Poor kid had huge patches of plaques on her body, arms, head etc.

AlannaOfTrebond · 25/06/2019 20:17

Hi Cuddles,

I felt much better a few days after the first infusion and like a whole new person a week later. My consultant said that the effects are generally felt pretty quickly, so I don't think that I was unusual in that.

I've had 4 infusions so far, the first a few weeks apart and now they are 8 weeks apart, which is the plan for the next year in conjunction with Azathioprine and Salofalk. Today I've been to the gym and out for a four mile walk it has been so effective.

I'm not surprised your poor DD is sick of it all, it's so tiring and just seems never ending when the meds aren't working. I'll keep my fingers crossed for her and hope that it works as well for her as it has done for me. Always happy to answer any questions you or your DD have. x

teetree0 · 25/06/2019 20:20

@cuddles37 hey im not a mum (yet) but im on both azathioprine and infliximab and have not long finished a course of something cal. With the infusions I didn't notice straight away but within the first week I was generally feeling better and I can tell when im due another. . I think it was harder at first for my mum and I just kinda took it in my stride but after a while it just becomes routine (side note not sure how long it took to become routine ive been on it for something like 5 years). Hopefully the infliximab and azathioprine work as well for her as they have for me- not totally symptom free but feeling a lot better than I did before.

cuddles37 · 27/06/2019 13:22

Thank you all so much for your replies. Very good and uplifting to read. My DD has been able to drop down to 25mg prednisone this week. She is so wanting to get off the steroids. None of her clothes fit her and she is always so hot and bothered. She is still getting up to use the loo through the night but there hasn't been any blood this week. We are feeling so hopeful for these infusions. Thank you all for your replies x

OP posts:
Coffeethrowtrampbitch · 27/06/2019 13:30

Just to say I am also on infliximab and was on steroids until last November 2018. I started infliximab in April 2016.
I've shown a clear improvement in brain scans (I've got Neuro sarcoidosis) even after stopping steroids so it is working well in the long term for me.
I hope your dd finds the same and she keeps feeling better.

BettyBoozer · 27/06/2019 19:39

Sorry your daughter is so unwell. I'm a mum to a young toddler and I have Crohn's disease. I can't help with the parenting a sick child but just wanted to let you know that I've had brilliant results on infliximab and azathioprine combo. The infliximab managed to heal a very nasty fistula and gave me my life back. I'm currently in remission.

Annoyingly I had to stop the infliximab due to funding issues and when I restarted I had a bad reaction. However I've switched to Humira which is a similar drug that you self inject every 2 weeks. Humira has also been fantastic and I felt the benefits the very next day.

Hopefully your daughter will see a great improvement on the infliximab but if not don't panic, there are other drugs to try.

It might be worth contacting a charity and see if they can put you in touch with other mums in similar situations. Crohn's and colitis charity have a helpline for patients and carers who could be a sympathetic ear a chat through your options.

cuddles37 · 29/06/2019 19:37

Thank you BettyBoozer and Coffeethrowtrampbitch my DD is really looking forward to the Infliximab infusions starting on the 11th July now. Great to hear that she might feel better sooner than we were expecting (smile)

OP posts:
Belindapotsandpans · 29/06/2019 19:41

Hi cuddles I’m currently on another biological drug alongside Azathioprine but have taken Azathioprine, prednisone every and infliximab altogether in the past. I am also getting good results with the other drug and Azathioprine together but am finding that I’m picking up infections a lot easier at the moment. Best of luck to your daughter. I found I was quite tired for the rest of the day after having the infusions and used to take the rest of the day off work

benfoldsfive · 29/06/2019 19:47

Hi, my ds 12, has JIA and uveitis and is on a mixture of these but dropped the steroids after his imfix infusion. It seems to work quickly and got I top of his inflammation x

cuddles37 · 29/06/2019 21:42

Hello Belinapotsandpans and Benfoldsfive My DD is on 25mg prednisolone as well as 100mg azathioprine and the other tablets. I cannot see her being able to lower below this with the prednisolone as although there is no blood, she is still going to loo throughout the night and day and the consistincey is not good at all :( Her urine sample came back clear this week and her chest seems to be clearing :)

OP posts:
tryingtobebetterallthetime · 04/07/2019 04:33

I have UC and have achieved remission on Entyvio, which is also an infusion. It is a life changer for me but it took months. I know lots of people on infliximab and it works much more quickly. My GI doc recommended Entyvio because I am older and have asthma, and Entyvio affects the immune system mainly in the gut, and not the whole body.

I know many people have had really good success with infliximab, and I'm betting your daughter will too. Anyone with IBD totally gets the wanting to get off prednisone. I hate the stuff but for years it was the only way I could keep going and working etc.

I had a scope last week which showed a healed colon at last. A wonderful feeling. Something you can look forward to!

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