Salofalk granules

[Scout]

Hello, I’m recently diagnosed with Ulcerative colitis and started taking 3mg of salofalk daily. I’m on day three and I’m literally stuck on the loo with awful diarrhoea & tummy cramps. Is this common when starting this medication. I feel worse now than before I started them!

Thank you

[watergazer]

Medicines affect us all differently. Myself I had no trouble on salofalk granules. I take 1.5 my daily. If it continues get in touch with the IBD helpline you have been given or your consultant or GP x

[Scout in reply to watergazer]

Thank you ☺️ I knew it would be a bit trial and error. My daughter has had a transplant and it’s a working progress still with meds, 7 years post transplant. 🙈 I didn’t think I’d feel worse though!! I spoke to my IBD nurse and she’s told me to stop. I have a new prescription winging it’s way to me. I’ll get there !!! X

[Hephzi]

Hi. I am on the first week of salofalk granules 3g too. I am having mixed results. Some days have been great, but others with more trips to the loo than before. It says it can take 3 weeks to work, so I’m just keep on going and hoping for an improvement. Good luck with it. When do you go back to your consultant?

[Scout in reply to Hephzi]

Thank you, I really hope they help you. I was all ready to go the distance with them. My daughter has liver disease and is 7yrs post transplant, and we are always fiddling with her meds.Yesterday I was completely floored though. I couldn’t even leave the house to take her to hospital for a check. That’s never happened. My IBD nurse told me to stop taking the granules immediately and she’s sending a new prescription. I knew it was bad when my eye when yesterday. If my stomach is bad, it triggers uveitis. Now I’m on steroid eye drops too 🙈 It’s all fun and games here. I’m always the carer never the patient!!!

Really hope you are feeling ok x

[Hephzi]

It is awful when it disrupts life like that. Hope you can get your daughter to her check soon. What has the IBD nurse changed your prescription to?

[Brisvegan]

Hi Scout,I had ulcerative proctitis and used Salofalk suppositories. First time worked ok but condition relapsed 6 months later. My most recent episode was March 2019 and I tried Salofalk, Prednisone and some other suppositories. All just made the condition worse and I was like you, spending all the time on the loo and had bad cramps etc. Pharmacist suggested I look into LDN (low dose Naltrexone). I improved almost immediately after starting this and have been on it ever since with no recurrence and no problems. It is very safe. I’m not sure how long I need to stay on it , perhaps a couple of years, but I’m happy to do that. I suggest you do some research on LDN and try to find a GP who knows a bit about it and is willing to prescribe. Where are you located?

Regards

Judy J

[O1990 in reply to Brisvegan]

Hi Judy,

Assuming you are UK based, just wondering whether it was a struggle to get the gp to prescribe this for you?

I also use Salofalk Suppositories with mixed results.

Thanks

[Brisvegan in reply to O1990]

Hi,No I’m in Brisbane, Australia. I was lucky that the compounding Pharmacist told me about LDN and about the GP who worked at the Clinic next door. My Gastroenterologist told me that it doesn’t work but after seeing the results he now admits although there is not enough scientific evidence that it has been the answer for me. There has not been many studies done as there is no money to be made. It may not be the answer for everyone but does no harm. To my way of thinking it’s preferable to other strong drugs. Good luck. I hope you can convince a doctor to prescribe it for you.

Regards

Judy