Advice

Stopping high doses of pred cold turkey is a really bad idea - it's not normally dangerous after just a few days of being on them, but it will make you feel absolutely wretched and possibly trigger an abrupt return of your disease. Why did you stop after 5 days? Side-effects?

So far it doesn't sound like the pred is doing a lot for you. Most people will have seen a response within 8 days, but it can take 2-3 weeks for somebody who is a slow responder to steroids - all you can do is give it more time and hope that the pred does finally kick in. If it doesn't, you will need to discuss going on other meds with your GI.

Sorry to hear this story, other members will know more than me about the meds but I think the cold sweats and lack of sleep might be steroid side effects?

It doesn't sound like things are getting much better and if things continue to worsen over the next couple of days I would get back in touch with your GI, they might want to bring you back into hospital, I wonder if they'd start the IV steroids again. have you had colonoscopy / flexi sig. Based on the results and your response to steroids they might consider biologics? There are options to explore for treatment. But idk I have very limited experience, much less than many on this forum, and am not a doctor. This must be unimaginably horrible for you and we never want to see things getting worse, but hang in there and do what you can - you may be surprised, I hope things start turning around for you soon.

Andrew72 said...
The GI told me to stop but I was in hospital 3 days later back on them.

Is there an alternative to Pred?

Cheers

That was dreadful advice on your GI's part :/ Not sure what he thought he was doing, tbh.

Remicade is probably the nearest alternative to pred. If a patient is having an acute flare-up and doesn't respond to IV steroids, then Remicade will be usually be tried next. Unlike pred though, Remicade can also be used as a long-term maintenance treatment.

I got tested for CDiff when I was in there. I don't know what the results were. I think I will give my GI a ring and ask as well as get some advice on Pred.

I took one 1 hour ago and I am sitting here sweating.

I would take the pred as early in the day as possible. it wont help sweats, but it may lessen sleep disturbance.

Depending on the oral mesalamine you have, you might be able to take more of it earlier in the day. I was able to take all my Lialda in the morning. If I too any after lunch it made my legs feel weird and restless when I tried to sleep.

If you responded to iv steroids, you should respond to pred. If the pred does not work after another 8-10 days, you should probably start to taper it - but some other med would be needed instead.

some people do have intolerance of mesalamine, although most tolerate it very well - more than the other drugs. you will have to feel your way along in that regard.

I would ask for some ambien to help sleep. Although c-diff always should be suspected when people do not respond to steroids (no matter what the test says), it usually causes blood and you report not seeing much.

eat low residue, try to identify some anti-inflammatory foods to eat, try to get good sleep, reassess every week or so.

good luck

Ask your GI for rectal enemas. Enemas go higher up the rectum than suppositories. They also target the area and aren't as hard on the body. You can get both mesalamine enemas and steroid enemas.

If you take steroids for a very short period, then you can stop them cold turkey, but I still think it's better to tapper off them. The body produces less cortisol when you are on steroids. It's good to give your body time to adjust.

At the same time, try to give your colon a rest. I recommend homemade chicken bone broth soup. Do not consume store bought broths. They aren't the same. If you really don't like to cook, then you can buy healthy bone broth soups off the Internet. Also, if you can tolerate it, after you give your colon a few days rest, I recommend homemade yogurt and fermented foods. You can find recipes for homemade yogurt on the Internet. Do a search of homemade yogurt and SCD. Heat the yogurt for 24 hours to break up the lactose. I use A2 milk, which is easier to digest than regular (A1) milk.

Here is my recipe for giving my colon a rest:

One package of no-antibiotic chicken thighs (I like dark meat).
Green onions, chopped (just the green part; the white part is high in fodmaps).
1 tablespoon apple cider vinegar.
1/2 teaspoon salt.

Put everything in a large pot of filtered water.
Bring to a boil.
Lower heat to lowest setting.
Cook for 24 hours.
Strain out the onions and chicken. Just have the soup. Save the chicken and onions for later.

After you have given your colon a rest, you can make the soup with the following ingredients:

One package of no-antibiotic chicken thighs (I like dark meat).
Green onions, chopped (just the green part; the white part is high in fodmaps).
1 tablespoon apple cider vinegar.
1/2 teaspoon salt.
1/2 teaspoon pepper.
2 cans coconut milk (with no additives, just coconut milk extract and water).
1 tablespoon curry powder.
bunch of carrots, cut into small pieces.
bunch of Chinese cabbage or Bok Choy, broken into pieces.
Rice noodles (as many as you want).


Put the chicken, onions, vinegar, salt, pepper, coconut milk, curry powder and about 1-2 cups of filtered water into a large pot.
Cook for 24 hours.
about 3-4 hours before the soup is done, add the veggies.
Cook/heat the noodles separately.

I usually will start eating the soup after it has been cooking for several hours. Basically, I start making it in the morning and eat some of it for dinner. It's enough soup that it's usually been cooking for 24 hours by the time I eat it all. I put the soup in the refrigerator at night when I'm sleeping.

Sub, that looks like a terrific recipe. Thanks so much for that. I have made chicken bone broth for myself with flares, but your additions make it so much more nourishing and healing.

By the way I am a new member, who has been lurking for some time, and finds this website just a wealth of information. I am not sure how to add my relevant information or sign my post. I think my post name is Erice77.