Hello - another 'Help I Have Crohns!' post

[GirlFriday]

Hello everyone else lucky enough to be here...

I am a 27 year old female from Australia and I was diagnosed with Crohns about 2 years ago. Like everyone says, this is truly a weird ride.

My doctor classifies my Crohns as mild to moderate and I currently take 6 x 500mg of Salofalk tablets every day (I just finished 6 weeks of Entocourt after a bad flare.) Does anyone else take this drug? Looking around the forums it seems like nearly everyone is on Prednisone, and I am having trouble finding any info on Salofalk.

Apart from that I really just wanted to introduce myself. I am hoping that being involved in a community of fellow Crohns sufferers will help me to feel like I have more of a handle on this disease - even if only slightly. At the very least it may help me feel a little less alone on those 'I am always sick and useless, I'm going to end up alone' bad days.

I'm not the only one to be kicked with a few of those right??

Yours in solidarity,

GirlFriday

 

[mRae85]

First I want to say :welcome: We might not be lucky in haveing to battle Crohns but we all are lucky to be here! This is a place where everyone has great advise, tips, and we are all supportive of one another!

Prednisone is not a good thing to be on and by all means if you can avoid being put on it, then do so! I am on it now and by reading around you will find me complaining alot, that goes for alot of others here on it as well. I was on Entocort for a while, but not right now. I found it to be wonderful but about half way through the taper of 2 pills a day vs the starting out at 3 a day I would get sick again and by the time I was on 1... well it seemed as if I had never been on anything. The Salofalk I am unsure of, I am also currently on Sulfasalazine and I take 4 of those a day at 500mgs, a few others here do also, not sure if that is what you ment or if maybe they are similer or not.

This place has helpped me alot, it can be rather emotional at times, but you are never alone in this fight now, you always have us. *hugz*

 

[GirlFriday]

Thank you so much mRae85! It really is lovely not to feel so alone.. Anyway, I guess I don't really have anything else to say except thank you for replying and welcoming me. Having another not so great day, but that is just standard with this disease I guess.

 

[mRae85]

haha "have another not so great day" yup, thats life. You'll never be alone around here, just jump in on the conversations.

 

[My Butt Hurts]

Hi GirlFriday - welcome!
I think that you will find more people are on prednisone here because it seems to be stronger than entocort. My doc wouldn't put me on entocort because it wouldn't be powerful enough to help me when I was in a bad flare.
Although it does have terrible side effects for some people, others have no problems with it. I wouldn't say to avoid it at all costs, as you can't know ahead of time how your body will react to it. I have very good luck with prednisone, and almost no side effects. I actually love being on it. It is a drug that you don't want ot be on for an extended time though as it can leech calcium like crazy (and I think cause diabetes? Not sure on that one.)
Kev was on salofalk if I remember correctly. If you use the search feature, you might find what he had to say about that.
Welcome again!

edit - yeah I just did a salofalk search. 47 results came up.
http://www.crohnsforum.com/search.php?searchid=119431

 

[nia]

Hi welcome,
I have only been onthis forum for such a short time, but feel I am not alone and have already had some great tips and advice!

i have been on Prenisolone for 14 years for a totally different disorder (Immune thrombocytoprnia and arthrisis) and have tried so hard to dome off them, seemed to get to a low dose then something happens and I have to increase my dose again! Two years ago it was found I had Osteopenia....which is early stages Osteoprosis, I don't want that too so I plan to get off them for good totally within two years!!! Ironically it seems to be good for Crohn's, and indeed is a great drug, but for me and does work, I just don't want my bones to crimble when I'm old!
Am about to start Infiximab and methotrexate so fingers crossed, because I recently rejected Hmira!

good luck this site is a great way of talking to fellow sufferers, so many great people on it!!!

 

[kello82]

hey girlfriday! glad that you found this wonderful forum!
ive never been on salofalk, but like MBH suggested, do a search on it here and you will probably find a bit of info
i was also on entocort once, and it wasnt really strong enough to take care of the flare i was in. havent been on it ever since
yup! you are definitly not alone in having days where you think "I'm so sick and useless, i'm gonna be alone!" i think you will find posts from most of us on here on our bad days. but the warm replies and consolation always make it better
also theres a venting forum, so on your bad day you can go in there and just spill ALL your complaints out and we'll be here! we all do it and it is very helpful to just get it out to someone who understands!
see you around!

 

[GirlFriday]

Oh thank you for all the replies everyone, I'm sorry I did not just do a search on Salofalk in the first place but thank you for taking the time to answer my question anyway.
Pen, mine are exactly as you describe - long oval and mustard colour. It really is hard for me to tell if they are working I never go more than a day (very seldom two days) before I have bad D, joint pain, exhaustion etc. I am just not sure if that is as good as I can expect with this disease.

 

[kromom1]

Welcome, Girl Friday! Entocort didn't help me either. Prednisone does wonders for me, but definitely can cause lots of side effects. MBH - you are correct, it can cause diabetes - it did for me, and now I am on medication for that, too. Pentasa (salofalk) didn't work for me, my Crohn's was too severe for it. Is the Salofalk keeping you under control? I've also been on Imuran, Humira, and Remicade and failed all of those. Now back on pred and waiting to see where we go next.

Good luck to you!

Lisa