Nannajune
I am 78 years old and was diagnosed with Crohns in May 2020. I have taken steroids a number of times. I was on the biological drug
Vedolizumab but it didn’t work I was switched to Ustekinumab almost a year ago which I assumed would work but it doesn’t appear to be as I keep having flares. Rushing to the loo 12 times a day with loads of blood loss is so depressing.
I am waiting for a decision from the IBD nurses whether to start Prednisilone again, which always clears up the symptoms but is a worry because of bone density loss side effect and also skin thinning. Anyone in roughly similar situation?
Hi,
I've had Crohn's for 34 years and was on prednisone for 22 of those years. I needed to get bone density tests every two years. I think it depends on the dosage as well. If you're on high dose prednisone (40+ mg) then I too may be worried, but a low dose (2.5-5 mg) it's not as worrying
Maybe check with your specialist to have your biologic markers checked (blood work) to see if your body is becoming immune to the drug. I was on Remicade for 8 years before I had to switch to Humira because my body became immune to Remicade.
I understand the frustration and depression.
Let us know how you get on.
Vern - IBD Team MemberHi
, I'm so sorry that you are going through this. It isn't easy dealing with medication switches. I have been on steroids previously, but not long term (unlike who also commented here!). I struggled being on steroids, as you mentioned, with skin thinning and I found it very uncomfortable. I started using a rectal steroid called Uceris in the US which actually helped me more than my oral steroids. Maybe that would be an option for you? In addition, I hope they can find another long term drug that would be helpful. Are they planning to try you on another biologic? -Eshani (IBD Team Member) I am obviously unaware of your personal situation and whether you can't try other treatments for certain reasons. However, here's a list of medications used to treat Crohn's disease:
Sulfasalazine/Salazopyrin/Azulfidine/Azulfidine
Mesalazine/Mesalamine/Asacol/Ipocol/Octasa/Pentasa/Salofalk/Mezavant
Prednisone/Prednisolone
Budesonide/Entocort
Azathioprine/Imuran - Mercaptopurine/6MP
Tofacitinib/Xeljanz
Methotrexate
Adalimumab/Humira
Golimumab/Simponi
Ustekinumab/Stelara
Infliximab/Remicade
Vedolizumab/Entyvio
Filgotinib/Jyseleca
So definitely find out what the other options are. I totally understand your concerns about Pred. I was on them for a nuThey should be used as an interim, to get a flare under control quickly whilst a maintenance treatment has time to start helping. By maintenance treatment, I mean something that you would take long-term to keep the flare controlled. Hope this helps.
- Sahara (team member)
Thank you Sahara
