Day #4 of NO PREDNISONE!

Saturday was my daughter's last dose of Prednisone.  She first started the end of March at 50 mgs.  Today she is feeling HORRIBLE   She has all of the withdrawl symptoms: aches, pains, nausea, fatigue, depression, diarrhea.   She is so worried she is going to flare and have to take it again, but I will NOT let her go back on steroids.  She has been on 5 courses of 40-50 mg in the last 2.5 years. There just HAS to be something else that can be done if she flares!!  She has had 2 Remicade infusions and is also taking 7.5 mg of oral Methotrexate.  She made it to camp on Mon and Tues but not today. I think she needs to take it easy today :( 

I wish we felt more celebratory about this, but we are all holding our breath right now. Trying to hope for the best, but preparing for the worst. I hope there is a day soon where we won't have to live this way...would't that be nice?

Thanks for sharing notsosickly :) I forgot about the stretch marks! Oh, they are SOOOO bad :( I took her to a dermotologist and she gave her Retin A and it has helped some. I am thinking of taking her to either a shrink or an endocrinologist but I hate to subject her to more Dr visits and/or medication. Tonight she has an acupunture appointment, and that always helps her feel a little better :)

Good luck to your daughter! I have found that light exercise does help with the aches and pains, and a nice bath.

MLD, I am sorry for your daughter, I am in the same boat. Lots of pain from being off pred, though I think the remicade helps it (I came off of it before w/no remi). Walking and stretching exercises help some and trying not to sit too long in one spot. I now sit on the side of the bed in the am and stretch before I get up....just like my Gram ; )

I too have my accupunture appt tonite (my 6th one). Today I am having a bit of a bad flare day, hoping it goes away. I feel bad wishing July away for my next remi appt on 8/9.

It is very traumatic, I suggest therapy, I went for about 5 visits and that was all I needed a couple years ago. I think I need to go again.

I hope she feels better soon!

I love the Zico brand they sell at Trader Joes. They have pomegrante flavor and a few others but I always get the plain one. I should try the flavors.

Mustlovedogs

I am so sorry she is having a rough time at it. You might want to watch if she is having the symptoms as a flare, she might have adreneal insufficient. My daughter got that when she came off her steroids. Yes her stretch makrs are bad. She has hers on her back. You might want to check into getting her something for her depression while she goes through this. I used to call my daughter dr. jekyl and my hyde. They can just start her out on a low dose. It really helped mine alot. If you need someone to talk with I would be more then willing to talk to you. Also I will ask my daughter if she would e mail yours maybe having someone around her age will help. Let me know

You guys provoked me to try mango zico and it's not as good as I imagined. It's too sweet and flavorful. I am a water drinker and I guess I've become used to drinks that are not sweet. I am happy I tried it but I will stick to the plain stuff :)

lol, I will try the Vitacoco flavored next time. I like the Zico plain better than the Vitacoco plain but maybe Vitacoco has better flavors.

Well most of the Zico products are from concentrate, which is why I think I don't like it. I am that way with OJ, I don't like ones from concentrate, I like 100% juice.

O.N.E and Vitacoco are 100% coconut water NOT from concentrate. Also I noticed when reading the labels, the flavored Zico says natural flavors in the ingredients, but doesn't say what. Whereas O.N.E and Vitacoco both list fruit puree for that flavor or fruit juice.

I think that is probably why Zico is also cheaper, because most of their products are from concentrate.

it really sounds like it's time to put your daughter on some the hot treatments running around this forum. They are (in no particular order)

1.) LDN
2.) Fecal Transplantation
3.) High dose probiotics + psyllium seed powder
4.) Combo antibiotic therapy
5.) Dietary control (with detailed daily food/symptom journal)

Each of those really seem to be working for A LOT of people. There's no need to suffer! Do your research! I'm doing both 1, 3 and 5 right now, and quite frankly, haven't felt better since diagnosis. I was just like your daughter where sliding off of prednisone over and over again just resulted in massive flareups. All the other meds never helped either.

Prednisone gets better tbh. Im on my 9th course and sides I get that are noticeable are sweating and some constipation thats about it...

I don't get any other sides thankfully touch wood. Only thing is prednisone sucks as it creates a negative nitrogen retention so harder to pile on some muscle/weight in general. I eat like a horse but not growing very much at all :(! Pred also doesn't increase my appetite, I have to force food down it's a nightmare wish I had the increased appetite side lol!

@ MustLoveDogs - Hello. I am also in my teens and I am suffering from UC. When I withdrew from Prednisone I had the same withdrawal symptoms. These side effects subsided after about 3-4 weeks. To be fair, I was taking a corticosteroid enema and I still am so I did not have to deal with a flare. Just recently I started flaring when I tried to get off of the enema. I am now taking it again. You should check to see if your daughter is steroid-dependent. I have a feeling I am because whenever I'm off steroids, I get a flare. When helped me when I was dealing with the withdrawal symptoms of prednisone was pretty much nice warm baths. Try adding epsom salt to them. I think exercise is very important during this time. I recall it being quite difficult because I was always so sore but whenever she is having a good day, try to encourage her to exercise a bit. I wouldn't recommend going back on the prednisone even if she were having a flare. I don't know if you've talked to your doctor about steroid enemas. I didn't have the horrible side effects with those as I did with prednisone. It's more localized and I think that is a lot better. So if she does have another flare (hopefully she will not) I think you should try that options as opposed to Prednisone. I'm currently using Budesonide enema to get my UC flare into control and hopefully I can switch over to a 5-ASA later on. A lot of people on here have mentioned Probiotics. They're supposed to strengthen your immune system. I'm going to try that out soon. There's no harm in trying, right? The user Quincy has a brand listed in the personal signature section. I think I am going to try that one. I'm not too sure what it is called. There is also a thread that I posted in yesterday about holistic approaches to UC and there are quite a few supplement names and different treatments like acupuncture that have been going around so if you're into the whole holistic approach, I encourage you to check out that thread. I wish you and your daughter the best of luck!