Some Advice Please...

Apologies in advance for the long post:
I was diagnosed with pancolitis in April 2017 age 37 after a sudden onset. I was treated with flagyl and budesonide granules for 2 weeks and was almost normal again by the time I saw my GI for my follow up where she put me on 2g Pentasa twice a day and another 2 weeks of budesonide, after which she said I could reduce to a maintaince dose of Pentasa (1g twice daily). This I did around Aug 2017 and was in remission until around May of last year when symptoms started creeping in.
Went back to my GI who did a scope which showed proctitis which my GI was surprised at given how bad my colon was in my original diagnostic scope. She put me on Pentasa Suppositories which didn't really seem to do much and upped the Pentasa Grannules to 4g a day. Things plateaued for the next few months during which time I moved house so had to change GI doctors.
Dec 2019 I had another scope with the new GI doctor and again was told proctitis, the kept me on the same medication my previous GI had me on and just added a prednisolone rectal foam nightly. But things didn't improve and around February I started seeing blood for the first time since being diagnosed. I was going about 4-5 times a day, basically if I ate, I pooped with little or no form.
Finally I was put on 40 mg Prednisolone for 2 weeks with a 5mg taper after that. I am currently at 25mg. It was initially improving things, urgency lessened, bms a bit more formed but not solid (1-2 times a day) but since I've hit 25mg I feel like thing might be reversing again. Some left side pain above the hip which I fear means higher up inflammation and some blood when I pass the melted suppositories.
My question really is do I need to up the prednisolone again or is it just a band aid, do I need an over haul of my meds. I'm not sure how that will be possible at the moment though as getting to see a GI will not be possible for a while anyway.
Any wise words would be greatly appreciated before I try call my GI and even get some kind of consult over the phone.

I found that when I tapered prednisone my symptoms would sometimes come back for a bit right has I lowered my dose. One of the things that helped me was to alternate the old dose and the new dose for a few days to give my body a chance to adjust and be patient with the taper. If that doesn't help you may need to up your med game to the next tier of medications. Hope this helps.

Yes, the achy back, tiredness, and shakes can be caused by the prednisone taper and the meds itself. I would see if you can slow down the taper a bit, perhaps you are dropping by too much and a more gradual approach would be easier on your body.
I added Imuran to my list of meds in 2019 when I wasn't able to get off of prednisone, but you may just need to slow down your taper. It took me 6 months of being on pred to get off of it in the end of 2018/2019.

Sorry to hear you're flaring. If you cannot sustain a remission without regular Prednisone then you need to add either thiopurines (azathiopurine, imuran, or 6-mercaptopurine) or biologics (remicade, humira).

Thiopurines take about 3 months to work, are simple pills you swallow, generic, but require regular blood tests for as long as you're on those meds.

Biologics work in 6 weeks or less. No blood monitoring. Humira is a self-injection. Remicade requires a nurse and IV to administer.

I spoke with my GI 3 days ago and he suggested a fortnightly taper of 5mgs instead of weekly so I'm currently down to 20mgs as of today.
Feeling a bit better too, left side pain is gone and down to 2 bms a day though they are still not solid and I am still seeing some blood after at least one.
On top of that a nice big hemorrhoid appeared yesterday!!
GI is hoping to hold a clinic at the end of the month so I will be discussing medication with him then, I should have a better idea by then whether my current medication is adequate or if I need to up things.

Bloom93, did your daughter take antibiotics before getting cdiff? I am asking, because I am in a similar situation, but I did not take antibiotics. I have had great sucess with SCD since 2013, but had a sudden onset of dihharea last summer and have been in a mild flare ever since. Diet and oral medication, that use to help, seem to have little effect.

Thank you Bloom93. I have an appointment on wednesday and will ask my GI. Hope your DD feels better soon.

Ms2011, you are having the usual panic & fears that many of us has gone through when stepping up to biologics. Please don't torture yourself with the "what ifs", go to the Humira website & read about it. Hopefully, you can calm yourself down over this decision. You can always decline starting Humira, but remission & good quality of life goes a long way. You can also use the search feature here & type in UC & Humira, you will find a lot of posts.

I went from Remicade to Humira. I had to eventually go off of Humira, I developed antibodies & it made my psoriasis worse. Strangely, Remicade kept it in check, lol. Humira was so much easier because it was an injectable. I have a needle phobia but I managed to do the injections without a problem.

Good luck & try to calm down the best you can.