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Weighing my option of being hospitalized.

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Ulcerative Colitis
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Posted 6/2/2023 9:42 AM (GMT -5)
I had my second infusion (Renflexis) on Wednesday at VAMC and been on 60mg of pred. since May 17 tapering down 10mg every week so now at 30mg. The only difference I've seen is maybe 3 less trips to the toilet per day but still having to go twice at night. The urgency factor is still there....still loose. I was told I should feel better after the infusion, but I have not seen any significant change. Wondering if I am pulling the trigger to fast on infusions not kicking in? Frustration is beyond words.

Post Edited (WayneTX) : 6/2/2023 6:47:35 AM (GMT-8)

Posted 6/2/2023 11:26 AM (GMT -5)
Wayne, personally I think your taper is too fast for you, rather than dropping 10mg, I would try 5mg at a time. When it comes to prednisone everyone reacts differently when tapering, many have to play with the dose.

I know I sound like a broken record, but 2 infusions will not get you over the hump this fast.

As far as urgency goes, do you have a lot of cramping? When I was doing this I was given Bentyl, now available in a generic. This helped me with this problem.

Only you can decide if you feel bad enough to go to ER. If you feel bad enough for that level of care go for it.
Posted 6/2/2023 2:37 PM (GMT -5)
The prednisone has made me feel bloated and I look bloated to others as well. I am eating more now than I normally do thus gaining unwanted pounds. Other than that no other side effects.....urge level about the same......need to be within 15 seconds of a toilet at all times. I probably just need to deal with it and give the infusions more time.
Posted 6/2/2023 5:54 PM (GMT -5)
Has the pred even helped at all? I thought you said it did nothing even at 60 mg in your other post. I am just wondering if IV steroids will even help if 60 mg pred did nothing, but maybe?

You really need to give the Remicade at least 8 weeks before expecting improvements.
Posted 6/2/2023 6:21 PM (GMT -5)
The only difference I can see as to pred. is that I have about half the number of trips to the toilet but when I do have to go the urge is still like 15 seconds away. I am going to bite the bullet and give the infusion treatment the benefit of the doubt.....8 weeks would be July 16th.
Posted 6/2/2023 9:46 PM (GMT -5)
Sounds like you are heading in the right direction. Half the number of trips is a huge improvement. I'd slow down the taper if it was me ... maybe 5 mg every 5 days.

Do you use rectal meds? They can do wonders to help with the urgency and can help you get out of this flare faster.

If you start back sliding and getting worse you might want to think about the IV steroids, but for now you are improving so it doesn't seem urgent.
Posted 6/2/2023 11:17 PM (GMT -5)
I agree.....less trips is a positive sign. I have not used any rectal meds. They have not brung that up so far. The biggest side effect is the prednisone keeps me hungry all the time so gaining weight.....that part is a bummer.....11 pounds so far. They started me out at 60mg. the first week and was eating something every hour on the hour. I'm going to see next week if my GI will roll back my taper even more so hunger issues lessen. All just liquid poop up to 3 days ago now more mushy so that is another good sign. I'm going to stay clear of hospital care and get my third infusion on June 28. I appreciate all the advice received here.
Posted 6/3/2023 3:30 AM (GMT -5)
The urgency is mostly from inflammation in the rectum, which is also usually the last place to heal, so if your number if BMs is decreasing significantly but urgency is still there I wouldn't loose hope as you may be healing above the rectum. Prednisone weight gain/bloating is annoying but it does come off when you lower the dose.
Posted 6/3/2023 9:22 AM (GMT -5)
Poppydoop......that makes sense to me as to the reason I still have urgency issues when I do need to go. Yes, number of BM's are now about half of what it was when I began this new treatment plan on May 17. Have not lost hope and now even more hopeful I won't need to be hospitalized either. So appreciate everyone here providing good advice and insight as it helps to stay grounded and not over react......hopeful better days lie ahead.
Posted 6/3/2023 9:30 AM (GMT -5)
This disease is so damn hard! You feel miserable and desperately want to feel better. And running to the bathroom and not making it is downright humiliating— or I thought so anyway.

At this point focus on the tiny improvements, which it sounds as if you are having, and one day all this misery will be just a bad memory.

I don’t know why some drs don’t ever mention rectal meds. You might ask and give them a try. There’s mesalamine enemas and suppositories and also steroid enemas and foam. If your urgency is bad they can be hard to retain but as your urgency decreases some they can be helpful with lingering inflammation. Also, after your loading doses you’ll be waiting 8 weeks for your next infusion. That was when I had a slight uptick in symptoms again (around the 6 week mark) and the rectals were really helpful tiding me over til that infusion (I’m on entyvio, not remicade, but the timing of infusions is exactly the same). As you heal, you’ll have times when you feel good (especially compared to how you’re feeling now), but the inflammation takes quite awhile to heal and lingers on causing you some milder symptoms that while not debilitating, are still annoying That’s when rectals are really helpful so it might be good for you to discuss with your dr now so you have them on hand to use as needed.
Posted 6/3/2023 9:59 AM (GMT -5)
The hunger isn't likely to stop until you get down to 10 mg pred or so. My weight gain was more than "annoying" bloating and didn't just come off when I stopped. It was very slow-going. But I was on a lot of courses of steroids over several years. Try to eat low calorie foods if you can. That's good the bathroom trips were cut in half.
Posted 6/5/2023 7:50 PM (GMT -5)
WayneTx,

Checking in on you. Hope that you are feeling better.

Clo
Posted 6/6/2023 8:14 AM (GMT -5)
I believe I am finally making some progress.......the urges I can control a bit longer than before and my daily trips to the toilet are now half what it was just two weeks ago. I am still having to get up twice a night due to urges so that part has not changed. The main downside remains that pred. even tapering down now to 20mg a day (5mg x4) still makes me so hungry and I find myself snacking between meals thus gaining unwanted weight. I am at least hopeful now that Renflexis and pred. together appears to be working for me where HUMIRA failed me due to antibodies.
Posted 6/6/2023 9:59 AM (GMT -5)
Has your doctor discussed Rinvoq with you? There are many new drugs out there that seem to work better than anything previous.
Posted 6/6/2023 10:30 AM (GMT -5)
beatUC......no my Dr. has not discussed Rinvoq with me. When Humira failed they opted for Renflexis IV infusion which began on May 17 with the second one on May 31. I am seeing some gradual improvement finally. The third one is scheduled for June 28. The VA did give me the option to be hospitalized back on May 16, but I opted to remain outpatient as they said a hospital stay could be 5-7 days. If for any reason Renflexis backfires I will definitely ask about Rinvoq and I'll definitely admit myself into hospital care in early August too. VA tends to use generic versions on drugs to save money. Is there a generic version of Rinvoq?
Posted 6/6/2023 1:21 PM (GMT -5)
No, there is no generic for Rinvoq.
Posted 6/7/2023 9:54 PM (GMT -5)
WayneTx,

Hang in there. For some it just takes a little longer.

Clo
Posted 6/7/2023 10:54 PM (GMT -5)
I'm hanging.......seeing some progress finally.......urges not coming as fast now and not as many trips.........just hungry all the time due to the prednisone thus adding unwanted weight.
Posted 6/8/2023 3:17 AM (GMT -5)
Keep going Wayne. I was in hospital 3 weeks ago with a severe flare. 13/14 times a day. Incredibly unwell and seeing no light at the end of tunnel. 3 weeks later I’m home now recovering slowly. Been on Xeljanz for just over 2 weeks and currently tapering down on Pred ( on 45 MG at moment ). I have improved significantly. Down to 3 bathroom trips now in a day. Retaining my food properly now. Getting out and about enjoying my life slowly again. Consistency not quite remission yet, but it takes time. I’m very close to remission though. Point being, if i can get where i am after being hospitalised with a severe flare so can you
Posted 6/8/2023 8:46 AM (GMT -5)
thanks for the motivation.......I am much more hopeful now! I had a severe case in April/May......15-20x a day, 2-3 during night......had to wear diapers (pins) around the clock........urges so fast could not leave the house. I am tapering prednisone at 20 mg.(5mg.pill x 4) a day and it looks like I'll make it now to my third infusion (Renflexis) on June 28th thus avoiding hospitalization.

Post Edited (WayneTX) : 6/8/2023 3:04:20 PM (GMT-8)

Posted 6/8/2023 11:08 PM (GMT -5)
bummer.....the runs returned today.......hope it is just blimp on the radar.
Posted 6/12/2023 6:50 PM (GMT -5)
Hope you are seeing more improvements. Hopefully after the June 28th infusion you will notice significant improvements.
Posted 6/13/2023 12:07 AM (GMT -5)
I hope so.......June 28th can't come soon enough and the prednisone tapering down more between now and then because I stay hungry all the time and gaining unwanted pounds as a side effect. Prednisone drops to 15mg (5mg x 3) starting Wednesday.....hoping less hunger issues.
Posted 6/13/2023 9:57 PM (GMT -5)
The hunger issues are awful.... I loathe Prednisone ... Also known as the Devils Tic Tocs... because they helped me gain so much weight... For most people it comes back off after you taper and are off of them.

You'll probably have times where you take 1 step forward and the 2 steps back. It just takes awhile......

Clo
Posted 6/14/2023 7:41 AM (GMT -5)
hunger pains and being bloated have been the only real side effects...........stools are still mushy........I obviously have a ways to go yet.

Post Edited (WayneTX) : 6/15/2023 5:35:44 PM (GMT-8)

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