Living with Crohns, post-prednisone...

[andilynn09]

I went to my GI on 12/8, and almost 9 months after my original diagnosis of Crohns, I am FINALLY off all steroids. :emot-dance:

My question for those of you out there who had already been able to achieve this at some point, how much did your day-to-day live with Crohns change after being off steroids? I It's only been about 10 days, and I noticed almost immediately that I'm more sensitive to what and how much I eat now that steroids are gone. I have not had any major pain or problems, I think this is just my true new "normal" self finally coming thru now that I dont have the steroids hiding the symptoms. I was just curious about what changes you all did and didn't have in the way you felt once you got off steroids and were considered to be "in remission"???

PS Was also wondering if any of you experience probs w/ nausea? That has been a bit of a prob since off steroids....

 

[DannyB]

Actually Andi,

My doctors told me to come off the prednisolone a few times but I always just stay on 2.5mg (maintenance dosage) just in case of any problems and I find that works better for me and doing research on it, 2.5mg isn't enough to cause any problems in the long term.

Regards
Danny

 

[ruthymg]

I was on steroids for 18 months and also experienced those heavy stomach feelings along with sensitivity and just generally feeling not as good as I had whilst I was on the steroids. I can't remember how long it lasted but I too moved into remission and one thing I can tell you is that all symptoms completely disappeared whilst in remission. I remained in remission for three years and felt completely normal, almost forgot I still had crohns I felt that well. That was until I started to flare again and then it came back with a vengeance. Give it a little more time for your body to readjust, it will take a few weeks to feel back to normal.


Ruth

 

[Mazen]

Now that you are off prednisone, I suggest you watch your diet carefully and start taking supplements to make your body stronger. I suggest the book "The new eating right for a bad gut". It will give you general recommendations on what to eat and how to eat and also keeping a food journal to identify foods that don't suit you. The basic supplements you should take are a multivit/min and Fish oil (enteric coated). Try as much as possible to stay stress free. That's very important.

Also, I think you should stay on some kind of maintenance med like Pentasa or Imuran.....

 

[GNC Crohn's Man]

Pentasa is the best mataince med if you have Crohn's Disease and if it works for you since it has virtually no bad side effects... Imuran is an immunosuppersant.... I believe in messing with the natural order of the body by the lowest amount of medication possible... You should also try to work with your body and not against whenever that is possible...

 

[andilynn09]

Oops...forgot to mention that I am on pentasa (500mgx8 per day) and imuran (100mg per day) for maintenance. Am just excited and nervous at the same time being off prednisone.

Thanks for suggestion on the book, I will have to check that out.

 

[jarsek2000]

I went to my GI on 12/8, and almost 9 months after my original diagnosis of Crohns, I am FINALLY off all steroids. :emot-dance:

My question for those of you out there who had already been able to achieve this at some point, how much did your day-to-day live with Crohns change after being off steroids? I It's only been about 10 days, and I noticed almost immediately that I'm more sensitive to what and how much I eat now that steroids are gone. I have not had any major pain or problems, I think this is just my true new "normal" self finally coming thru now that I dont have the steroids hiding the symptoms. I was just curious about what changes you all did and didn't have in the way you felt once you got off steroids and were considered to be "in remission"???

PS Was also wondering if any of you experience probs w/ nausea? That has been a bit of a prob since off steroids....

Hi Andi,

Before replying to someone I usually like to have a rough idea of the profile of the person that I'm speaking to because that can often be helpful in the type of response that is offered. I clicked on your nickname but nothing showed up and I cannot even tell from your nickname / handle if you are male or female.

Anyway, when I was first started on steroids I thought they were the best thing ever since sliced bread. It was a high dose and at the time seemed to knock the (then) colitis into remission. Painful and bloody stools returned to normal. However the hospital doctor (and I think the way things are done in the USA is quite different to here) when he heard the dosage I was on, immediately wrote to my GP saying this MUST be reduced. I had been on 40mg per day. Of course, it is very important that you are weaned off them gradually. I reduced by 5mg every day until it was stopped.

You're right about the food thing. I had a HUGE appetite whilst on 40mg Prednisolone but lost that when I finished up the treatment.

Apart from that there was nothing greatly significant to report. I felt sad that I had to stop taking the steroids because of how well they had made me feel.

Best wishes,

Jim

 

[SoccerMom]

I took prednisone for 2+ years, starter it by IV in the hospital right after my 4th daughter was born. We had a terrible time. At first I felt GREAT, tons of energy, I could eat & was symptom free. Then I go a bit well...crazy, feeling 10 feet tall & bullet proof or screaming at my loved ones or crying or doing all of these at the same time Things that used to upset me , now just p**sed me off & I would sure let you know it. I am a very nonconfrontational person so it was unlike me to act this way.I also had terrible aches in my knees & feet when I was weaning off & nausea.It took me almost a year to finally taper off. I was on 6MP in the mean time & Colozal to try for remission, never quite made it. Fast forward..... New Doc ...Did another short stint with pred. in 2006 same side effects, then switched to Entocort & Remicade. I don`t have the extreme side effects now. I am still not in remission , but I feel better than I have in probably 5 years. I have hope now that I can go a while without blood transfusions & hospital stays. My new Doc is a wonder! I like Entocort better too. Good Luck to you !

 

[GregL]

I'm in a very similar boat.. I'm taking my last little white tablet on Friday and staying on 100mg imuran and 500mgx4 5-ASA (Salofalk is the brand name here in Canada).

I have noticed the same sensitivity during the taper down, during the 10mg week and now during this 5mg week. Not so much pain as an unconfortable feeling in my gut from time to time before the 5-ASA kicks in. However, since I started taking the 5-ASA in December, I've been able to tolerate so many different foods that I'm definitely over-reaching a bit in my diet and the discomfort does seem to be correlated to eating "bad" foods. I suppose it is important to remember that I'm living with a chronic disease, but being free again to eat a wider variety of food, I've gone a little overboard at times! For me, red meat and tomatoes are bad. I can only imagine I will be even more sensitive when I am completely off the 'roids next week, but if a little sensitivity is the price for getting off prednisone, that's fine by me.

In response to your last Q, I've never really had any issues with nausea, but I'll be sure to reply if any problems surface over the next few weeks.

P.S. I have been on prednisone since Sept/06 - approx. 4 months ago. I was originally on 40mg/day and had problems around 30mg/day. My gastroenterologist gave me the 5-ASA in early December and I've been able to taper 5mg/week without issue since then.

 

[andilynn09]

I am glad to report that over the last month or so, some of the nausea and sensitivity seems to have gone away. Don't get me wrong, I don't feel "normal"....but I do feel better than I have in quite sometime. I think it just took my body awhile to adjust to being off steroids finally, and start making my own again. Good luck, Greg L....it took me until my 3rd try to finally be able to taper all the way off pred. I hope things go better for you!

 

[TammySue62]

I cant get off pred. Can only get down to 5 mg,If I try to get right off the pred. I get very moody,and have terrible leg and arm spasams on the right side of my body. The pain is so bad I cant descibe it. The dr. calls them spasams but I think it is something else associated with CD.Its almost like a hot firing pins and needles going through my body. Cant sit or stand just keep walkin around till it goes away.I can feel it start at my toes and slowly work its way up to my arm and back down again. the pain is so intense that almost nothing works. Ive tried oxycodone IR 20mg,demerol 100mg,daulidid 16mg,fentynl patch 100mg.and nothing works. I dont no why this happens or when it will happen.usually at night it starts and sometimes it can last for hrs. There have been a few times where as the pain was so unbareable that I wanted to shoot myself. Yet still the drs.cant figure out what it is or why I get this horrable pain.Does anyone else ever experience this pain,like I said I dont no how to describe it or why I get it? It dosnt happen every day or night.Just whenever it feels like attacking me.Sounds preety wierd ah.



Confussed in ontario Tammy

 

[GNC Crohn's Man]

Have they checked your adrinal gland for problems? They do this by checking your bodies cortisone levels... Also this might be associated with migranes possible or maybe nerve damage or maybe a nervous system disorder... You may want to ask to see a neurologist...

 

[Kev]

Tammy Smith.. I haven't been on pred (think I'll be starting that Tues when I go back in the hospital - but that's another story).. I too have terrible leg & arm spasms, esp. at nite. and it does feel like hot pins and needles... I get them in my joints, esp right arm, but also in toes, fingers, legs, arms, neck, etc.. etc.. When I get them in my toes, I can't stand to have blankets, even socks on my feet cause they are just too painfull. In my fingers or hands, I can't button buttons, open my belt (makes those spontaneous urgent trips to the bathroom a real challenge) or type on a keyboard. The other day, my hands were so sore that I didn't notice I'd cut my finger on something till I saw the blood. So, I dunno if this is a side effect of the reduction of the pred, or if it is a symptom of Crohns that flares up when the pred. dosage goes down.. for me, the worst of this particular symptom is when my legs are suffering so bad I want to just grab them, but my hands are too sore to do it.. I'm hoping that the pred will make this go away, and hopefully stop the downhill path that I've been on for the past two months.. Just thought I should pop in my 2 cents worth.. cause I've got those issues without any pred..

I cant get off pred. Can only get down to 5 mg,If I try to get right off the pred. I get very moody,and have terrible leg and arm spasams on the right side of my body. The pain is so bad I cant descibe it. The dr. calls them spasams but I think it is something else associated with CD.Its almost like a hot firing pins and needles going through my body. Cant sit or stand just keep walkin around till it goes away.I can feel it start at my toes and slowly work its way up to my arm and back down again. the pain is so intense that almost nothing works. Ive tried oxycodone IR 20mg,demerol 100mg,daulidid 16mg,fentynl patch 100mg.and nothing works. I dont no why this happens or when it will happen.usually at night it starts and sometimes it can last for hrs. There have been a few times where as the pain was so unbareable that I wanted to shoot myself. Yet still the drs.cant figure out what it is or why I get this horrable pain.Does anyone else ever experience this pain,like I said I dont no how to describe it or why I get it? It dosnt happen every day or night.Just whenever it feels like attacking me.Sounds preety wierd ah.



Confussed in ontario Tammy

 

[TammySue62]

prednisone

Hi everyone
Thanks for your opinions. But the pain is getting worse since I cut back to 1 tab of pred.The past 6 days now it wakes me up around 3 am with the arms and legs going nutso. Myself I do think it is the decrease in pred. Cause I was on 10 mg. of pred. and it didnt happen every nite. Told the DR. about it last FRI. when I saw him and once again he really couldnt give me an answer,just another prescription for oxycodone IR.So what do I do in the meantime.Keep on suffering or just go back on 2 tabs of pred. The Dr. also is sending me to a surgeon for the fistulas.Another painful problem. He will problaby put setons in. I will probably have to wait another 2-3 months just to see a surgeon.In reply to KEV's answer sounds like you have a simular case t6o me. I think once you find that your on the pred. that the pain will settle down. It does for me. Goodluck let me no.:eek2:








TAMMY:confused2: