I am scared...

[Scifimom]

I had my second colonoscopy yesterday and well I am flaring. I had surgery last year but they did not remove everything, they left a spot in my small intestine which made me flare. The GI offered me the Remicade treatment flat out. Thing is I am SCARED of remicade. I know that many of you are taking it, some of you are even younger than me, but I am scared. This is my first flare up and remicade sounds like the last solution. Shouldnt I try other not so scary solutions first? In Greece this is the newest fashion trend, they give remicade to everyone even children, everyone is praising about the wonderfull results and how it improves peoples lives. But I told my doctor that I am scared to death of what I have heard and read on the internet. Plus I dont think that 10 years on the market are enough to give solid results. I am not desperate, I havent tried anything else except some azathioprine for a year and I am afraid, I am asthmatic and have some allergies ever since I was a kid, I dont want to risk having a lung infection just because my GI is playing god and wants to have a big crowd of patients in remicade in order to publish results in high class medical magazines.

After lots and lots of discussion my GI offered me the solution of Prednisolon (In Greece its called Medrol) He said that this is a short term solution and that he is sure I will be on remicade before Christmas. I decided to give Medrol a chance anyway and started my treatment yesterday. Meanwhile I also bought some fish oil capsules and liquid aloe, I want to do anything I can to help Medrol have results and keep them.

Am I stupid by choosing medrol over Remicade? Should I just swallow my fears and let them infuse the scary stuff in my vains? As far as I can tell my llife from now on will be waiting for the next flare, I dont want to wait for even worse side effects from something I dont feel good to take.

Am I stupid?

 

[Jennifer]

No you're not stupid. Its understandable that you're afraid to take it because of the possible side effects. For me though, Prednisone was one of the worst drugs I've ever taken. I'd only take it to save my life, if that but I'd personally try anything else over that drug any day. I've been on it twice and I hated its side effects and for me, it didn't work in the end and I had to have surgery. Take whatever makes you comfortable but I know that Prednisone will always be the last on my list.

Welcome to the forum.

 

[Scifimom]

I had medrol before without any serious side effects. (They used it to treat a lung infection I had five years ago) Thats why I feel more confident with Medrol, I had it before and I know what to expect.

Scifimom

 

[Jennifer]

I guess it depends on the dosage really. High doses of it lead to really bad side effects especially when taken long term and when your have a flare, you may need to be on a high dose and for who knows how long? That's mainly why I don't like taking it cause I was always on around 65mg for many months to a year. If it works for you though than great and I hope you start feeling better soon, that's the main thing.

 

[Starlight]

Im with crabbyrelish. I hated prednisone, and refuse to ever take it again. I had pratically every side effect possible. It helped get things under control for the time I was on it (1 1/2 to 2 years) I was on a high dosage, oral form, plus being hospitalized for IV pred a few times as well, but once I stopped, the flares came back full force.

Remicade has given me back my life. I don't have to many side effects from it. It is a powerful drug and they are risk, but there are risk with every drug.

 

[Gibby87]

I'm with everyone else. Prednisone was one of the worse drugs I've every taken. I, too, had way too many side effects while on that drug. I will never take it again.

 

[ameslouise]

Ditto above. I think Pred is great for knocking down the inflammation and getting things under control short term. But for the long run, most of us need to find a maintenance drug.

I resisted Humira for a long time as I, too, was very scared of the side effects. I usually get every side effect for every drug I ever take! It's only been three months, but so far so good. No side effects at all!

Good luck - I hope you start feeling better soon! -Amy

 

[Chuck2008]

One vote here in favour of prednisone. I love it! I know they say its not a maintenance drug but its kept me in remission for 2 years now at a 5mg/day dose. At really high initial doses there are some unpleasant side effects but nothing nearly as bad as full-on crohn's. And now the only side effect I have is excessive sweating during exercise.

Osteoporosis issues are nonexistent at 5mg/day if you are taking vitamin D and 1000mg of Calcium per day. In fact you can increase your bone density during low dose prednisone use. PubMed article here: http://www.ncbi.nlm.nih.gov/pubmed/3728366

Prednisone is really getting a bad rap on message boards. I think the people who have trouble with it are those who are old, overweight, in bad shape, or don't take care of themselves (calorie restriction, exercise, etc) while on it.

 

[Starlight]

Prednisone is really getting a bad rap on message boards. I think the people who have trouble with it are those who are old, overweight, in bad shape, or don't take care of themselves (calorie restriction, exercise, etc) while on it.[/QUOTE]


Uhh..wow..entirely not true. It is different for everyone. Not everyone responds the same. I was 12-13 years when I was on it, underweight, and not in bad shape either( I was in better shape than I am today probably lol) I had night sweats, joint pain, hot flashes, moon face, gained a TON of weight, not good weight gain either, mood swings, depression, fatigue and god knows what else that's slipping my mindless, but those were my main ones. Even thought it did get my symptoms somewhat under control, with all the problems I had from it, it was NOT worth it.

In my opinion, and I understand this is also somewhat not true in some cases, it's just my view in pred. I view prednisone as a cheap fix doctors turn to far to often, when they are so many other drugs that don't cause as much side effects. I realize this is not true in some levels, But that's my view on it. I refuse, and my doctors know this, to ever take prednisone again. They can find something else.

Either way, I'm really glad it works for you though. I hope it continues to do well for you.

 

[ameslouise]

My mom has a friend who has been on 5 mg pred for YEARS as a maintenance for Crohn's. She has to give herself vitamin B shots every week, but other than that, no problems. Chuck, I hope it continues to work for you! Anything can acheive remission with minimal side effects is ideal in my book!

- Amy

 

[Chuck2008]

Hi Starlight, Yes you're probably right. I wasn't sure about adding that last part to my post .

I did have all those same symptoms too when I started prednisone, in fact I have some older posts here that describe them in detail. I had the prednisone rages (which actually were kind of liberating since I usually am not assertive enough when I should be), tons of energy (I got so much done! You should have seen my sock drawer), insomnia (didn't like that one much), foot cramps (potassium helped that, lots of gatorade), and weight gain. I did gain 15 pounds but I had a lot of fun doing it, prednisone gave me the appetite and love of food but the food gave me the weight. I really miss how much I loved food during that time. I'd wait up at 5am just to 'prep' my breakfasts feasts hours in advance.

So yes, the symptoms are all very real and probably affect everyone the same way at high doses. I just meant that at LOW maintenance doses prednisone isn't a big deal, or at least hasn't been for me. The high doses of prednisone are temporary, and for me those side effects were a lot better than arthritis, bleeding, diahrea, stomach aches and everything else. Low dose prednisone has also taken care of my costochondritis and fibromyalgia completely. I've had inflammation types of disorders as long as I can remember.

If prednisone stops working for me I'm going to skip right to humira (I'm allergic to 6MP)..

 

[Scifimom]

Wow chuck thats a very positive experience. I am definately going to talk with my doc for a very low maintenace dose of Medrol.

Well, so far I am on it since last Wednesday (socialized medicine means you want a drug-you get the drug) So far so good (32mg daily). No insomnia yet, no rage, no hunger aaaaaaand NO PAIN still D but down from 6-7 times a day to 3-4 times a day. I am also getting fish oil capsules and aloe vera Juice (Doctor knows I am). I want to give my body as much help as I can.

I keep thinking about the Remicade vs other treatments though, is there anyone who got straight to Remicade without trying anything else first?

Scifimom

 

[Chuck2008]

I'm going to look for some of that Aloe Vera juice around here too. Not even sure where to buy something like that!

Hopefully the prednisone will work its magic for you soon. When I first went on it at 40mg it got rid of all the arthritis etc in the first couple hours, but the intestinal symptoms took a couple days to resolve themselves.

 

[redward]

I went on Remicade when it was still pretty new--about seven years ago. I was only on it for a few months, but I never had any problems.

I'm on prednisone now because I no longer have insurance and I'm just coming off a flare-up. I was on it for almost six months and other than the weight gain (which was quite welcome at that point) the only symptom I noticed was acne.

That said, my doctors were very anxious to get me off prednisone as soon as possible because of the long-term effects it can have. Prednisone works for me because it's cheap and effective, but I wouldn't be so eager to go on it if I had other options available.

ETA: Chuck, aloe juice is available at places like Whole Foods as well as nutritional supplement stores like GNC.