Not many options left

What drugs have you tried so far?

How have you tried all medicines if you were only diagnosed a little over a month ago?

Were you on meds before you were diagnosed?

A lot of meds take awhile to even start working. So it would appear you haven't given them much time yet.

There are still a lot of options before surgery if Asacol, pentasa and prednisone is all you have tried thus far. I remember when I first got on Asacol my doctor saying it would take over a month to start working. You also seem to be on an absurd amount of prednisone. Most people start at 40mgs and taper, some 60mgs but 80mgs seems like a ton. Has prednisone given you any relief? Most people it seems to work for but it isn't a long term solution, just a part time patch job.

If Asacol(mesalamines) don't work, your next option is usually immunomodulators like azathioprine, imuran or 6MP. Those take about 3 to 4 months to start working in your body. If you find those aren't working then the next step is usually biologics like remicade, humira and entyvio.

You can also try supplements and diet modification. Some people reach remission with supplements and the SCD diet. I've tried to modify my diet a little but it is hard to tell what works and what doesn't while you are on meds and flaring. Sometimes I could try a diet but then not be sure if it was the meds or the diet making me feel a little better.

Good luck, reaching remission can be a long road. I haven't gotten there yet and have been dealing with symptoms for over a year and a half now. This site can be very helpful for you so stick around and see what else you can learn.

Even the start of September isn't that long. I don't know anything at all about the NZ health system as I'm in the US so I can't help you there but surely there are plenty of options still and you shouldn't be jumping to surgery already. How were you getting the prednisone and asacol if you don't have insurance? I know asacol is super expensive in the US.

How much Prednisone did you take yesterday or how much have you been taking daily for the last few days? If you just up and stopped taking the prednisone without properly tapering down then you are making a really bad decision as the withdrawals from prednisone will be far worse than any side effects it was giving you.

I also can't understand why your doctor took you off the Asacol and Pentasa last Wednesday without having a secondary plan already in motion.

If you don't have insurance or your insurance won't cover immunomodulators or remicade or any other medicines then I would look into the Specific Carbohydrate Diet and supplements.

You are hardly out of options, as you've tried only meslamine-based medications and prednisone. There's a lot of other medications available!

Uc can be a struggle, it took me 2.5 years to reach remission. I had a yearlong flare in which I added prednisone, 6mp, and then remicade (infliximab). Finally achieved remission, now just 1 nonurgent bm a day.

Prednisone is meant as a short term rescue medication. It causes temporary side effects for everyone who takes it. Pred causes irreversible side effects when taken long term (like osteoporosis, glaucoma, and type ii diabetes). Use it as infrequently as is possible.

In your situation, I'd try the maximum oral (4.8 grams a day like pentasaj and rectal (a 4 gram rowasa or pentasa enema). If that does nothing, then add in immunomodulators (6mp and azathioprine are generic medications, so your country should cover them). Biologics are usually the last tried as they are brand name, expensive, and quite powerful (the options are remicade, humira, simponi, and entvyio).

I cannot comment on what meds you should try next since RX meds did not work for me (mesalamine-based and 6mp) although rectal enemas did help. I chose not to go up to Remicade or Humira.

Because you mention joint pain and itchy skin you should look into an anti-inflammatory diet for those symptoms alone and it could help your UC. No "name" diets worked for me (SCD failed twice, all the other diets had several foods my gut hated) but keeping a food journal and finding out what foods caused issues was key to my remission. It is not an over night success type of treatment but I had no other choice I wanted to make.

Also consider using 95% curcumin as a daily anti-inflammatory. There are many research papers on this and it is a very safe supplement (but no one should take it if they are on blood-thinners). Tell your doctor about it if you take it to check for interactions since you may be taking antidepressants. Curcumin was an add-on for me after reaching remission and works well for other UC'ers too.

Good luck.

I believe diet is the key to improving your situation. Many folks like Imagardner2 tried various "name" diets and found little success. You have to start somewhere, but ultimately, you'll have to find what works best for your body. I am grain free. But it took a few years to finally get to that point. Many folks find improvement just by eliminating gluten. Some folks see positive results in a few days. For others, like me, it took months of gluten free before I had significant improvement.

Continue to try and find a drug regimen that helps. But I agree with LSA = there are many available options before you choose surgery.

I agree with the others. 80mg to 0 is not a good plan. Also, trying some dietary restrictions can't hurt. Lastly, you have not tried many available treatments so surgery shouldn't really be on your mind at all at this point. One last thing, surgery is your choice, no one should try to push you to have it, especially when you haven't tried any of the treatments. I think you should try to find a new GI, possibly an IBD specialist. Sometimes there are IBD centers at major hospitals or universities. These centers have GIs who only see patients with IBD. These doctors should know all the available options and will be able to offer you the best treatments.

Wow, you need a new GI.

I agree with what everyone has said about stopping 80 mg of prednisone cold turkey. That's an enormous dosage to begin with. I've never been on more than 40, but have heard that others start at 60.

There are three classes of drugs that are available to you and multiple drugs within each class. As you work your way through, the chances of side effects and more dangerous side effects increase.

5 ASAs are anti inflammatories. They're generally safe to take and have minimal side effects. There are oral and rectal (suppositories and enemas) versions. Many people take both oral and rectal meds at the same time. The location of your active UC can affect the effectiveness of your meds. Colazol, for example, tends to work better for people with left-sided UC. Many times, people will have to try a bunch of different 5 ASAs before finding the one that works for them.

The next step up is immunomodulators like Imuran and 6 mp. They work by suppressing your overactive immune system. Some people get sick more when they take these drugs. It also slightly increases your chance of developing a serious infection and some types of cancer. You'll be required to get blood work done on a regular basis if you take one of these drugs, in order to make sure that they aren't impacting your WBC or organ function too much. Nausea and fatigue are more common side effects, but many people take these drugs with no side effects at all.

After that, there are biologics. They interfere with the body's inflammatory response. Remicade and Entyvio fall into this category. Biologics are taken by infusion or injection once every few weeks. Biologics can have more serious side effects, and some people eventually develop antibodies which prevent these drugs from working (sometimes a small dose of immunomodulator is prescribed to prevent this). They also tend to work for a higher percentage of people than the other drugs available, but are usually the last thing your doctor lets you try.

Other options include antibiotics (Cipro, Flagyl) which help some people, the dreaded steroids (in addition to Prednisone, there's Ucerise and Entocort, which sometimes work with fewer side effects because the steroids are released locally instead of systemically), supplements (like Curcumin or probiotics liek VSL3), and diet modifications (many use SCD, low residue, etc...).

So basically what I'm saying is that you definitely haven't exhausted your options. Trying everything is a huge pain because it takes weeks before you know whether many of these drugs work and many cause negative side effects. But you certainly haven't tried everything. The threads on this forum are enormously helpful as far as exploring medication options.