Recently diagnosed; having first post-predn. flare and very confused about next step!

[Strineski]

I came down with the symptoms of Crohn’s disease rather suddenly in Jan. 2010; was finally diagnosed following a small bowel series in May; went on prednisone for 12 weeks (starting at 40 mg and tapering down to 5), and just finished that about two weeks ago. The only medicine I am currently taking is Pentasa. While on prednisone, I had absolutely no symptoms; I was able to eat whatever I wanted and had no pain or diarrhea and I gained back 10 of the 25 pounds I had lost. About 5 days ago I started having mild but consistent diarrhea, along with a few of the symptoms I had before, but so far everything is very mild and manageable; no fever, pain, etc. So, I have a few questions as a “newbie” who might be facing my first relapse. I have several books, but haven’t found any answer to the questions below and I’m hoping some of you can help.

1) As long as the symptoms are tolerable with only over-the-counter medicine like Imodium, can I wait it out for weeks or months before notifying my doctor and going on stronger meds? Do any of you choose to just deal with the symptoms without going on any meds? That wouldn't have been an option with my first flare, which made me extremely sick, but this flare is much milder so far.

2) Is it unusual for symptoms to resurface just two weeks after finishing prednisone?

3) I absolutely LOVED prednisone; had no bad effects and in fact felt great while taking it. Why would it be so bad to take Prednisone again after my body has had a break from it? Do doctors ever prescribe a really low dose of Prednisone, like 5 mg. for months and months without prescribing other meds?

4) My doctor told me that if I had a relapse within the first 6 months of going totally off prednisone, then he wouldn’t hesitate to put me on methotrexate. Does this seem extreme to anyone? Why would he make such a leap when I only came down with this disease 7 months ago and have only been on one round of prednisone/treatment?

5) I am bothered by the statistic that 3 out of every 100 people on methotrexate will develop cancer from the drug. Is it silly to be that worried? Were any of you placed on methotrexate early in the course of the disease, and how did you feel about it?

Thanks so much for any thoughts!

 

[MapleLeafGirl]

I had the same thing after my first go around with prednisone. My doctor tried a second round with Imuran and had the same result. I am now on a third round and have chosen to go the surgery route instead of trying stronger medication (for a variety of reasons which I will share if you're interested). I will try and answer your questions:

1) I personally would not try going this route. The flare may feel mild or it may just be starting out that way. You do not want to do more damage by trying to ride it out. Trust me, I found that out the hard way.

2) Nope not at all.

3) I loved it too, my second round was only about a month after my first round ended. My doctor would never prescribe prednisone for months and months, even at a low dose, due to the damage that can do to the rest of your body, however, I have read where others have been on it for years. So I think it is up to the individual doctor and the individual situation.

4) My doctor went to Imuran next instead of methotrexate. Again, it depends on the individual doctor/situation. He is likely wanting to get the inflammation under control as quick as possible.

5) I have never been on it or done much research into it so I can't help with this one.

 

[Strineski]

THis was so helpful, Kelly! It's good to know that at least my disease is following a "normal" course compared to others. I'm also glad to know I'm not the only who loved (and is missing) Prednisone! I would like to hear about why you've opted for surgery; where is your disease located? Mine so far is just in the terminal ileum. Has Imuran had any unpleasant side effects for you?

 

[MapleLeafGirl]

Mine is also in the terminal ileum - I cut and paste my reasons for my choice from another thread...

1) The portion affected is rather small (5 cms) but I also have two fistulas (both between sections of my intestines)

2) I have read that you can develop anti bodies to Remicade/Humira over time so I would prefer to put off using them (that is what was the next step if I didn't go for surgery)

3) I want to avoid injecting myself or sitting for infusions for as long as possible

4) I want a fresh start with this thing. While this disease was doing all of that damage to that portion, I never even knew I had it. I feel like I would have a fighting chance now that I know what I'm dealing with

5) My gut tells me it's the right thing to do for me

At first I had some fatigue, nausea and vomitting with the Imuran but it passed within a month or two and now I have absolutely no side effects. I am interested to see if it will keeps things a little more in check once I am done with the prednisone. I am down to 20 mg, so we'll see.

 

[Astra]

Hi strineski
and welcome

IMO

1. yeah stick it out, this is what I'm doing too, after major flare back in Jan, just staying on my maintenance med Pentasa for now with gastros permission.

2. sometimes Pred hasn't finished with the healing process, so yes symptoms can come back straight away!

3. I loved Pred too, felt so well and it healed me nicely! the problem with long term steroids is that it can/may cause osteoporosis, bone death and calcium loss, people who have been on them for years for something like RA, pile weight on, turn purple and swell up! with a buffalo hump! then of course there's the psychological aspects too, depression, mood swings and in rare cases, psychosis

4. Metho is one of the 'big guns' ! I would've thought giving Imuran or 6MP a go first!

5.Sorry not tried it, and won't neither!

my CD is in the terminal ileum too! I've tried Aza, Imuran, it was toxic to my system, but everyone is so different! there are loads on here with brill results from it!

lotsa luv
Joan xxx

 

[Dallies]

Welcome x

 

[Tan]

Welcome.... Im in a similar place as you are with my crohns. I also have it in the same location and had my first major flare last August.. since getting it undercontrol again I have been pretty good, I also loved Pred but did have a few side effects but they did not out way the way the drug made me feel.. on top of the world!!

I did try Imuran and 6mp after my first flare but had a bad reaction to Imuran and then keep feeling off on 6mp so ended up just going the natural way for a while. Up till a few weeks ago I was going great guns but after becoming stressed at work have begun to experience a small flare again. Like you I too didn't know at what point I should contact my GI as I didn't want him to think I was going overboard over nothing. I actually saw him this afternoon and he is going to put me on 5ASA which is a mild crohns drug.. Im hoping that will be enough to keep me in remission. He also placed me back on Pred to get everything back undercontrol short term untill the new drug takes over.

I would be worried about going on such a strong drug straight up without first trying Imuran or 6mp but of course Im not you and not a doctor, but thats just how I feel as I prefer to more natural way and also as others have said you can build a tolerance for these drugs and would hate to go on such a major player straight up to be left in a few years time with no drug working when maybe the less toxic ones would have worked in the first place.

Im glad others also have similar thoughts and confusion about what is the right way of dealing with this disease and when to react to symptoms whether they are mild or not. I always seem to be second guessing myself and thinking sometimes its all in my head. I also am not as bad as others on here and only have mild crohns so sometimes think well I have nothing to complain about or don't need to deal with it because Im not on the toilet 24/7 or I have two off days then have a week or two of great days. So it can be very confusing to know when is the right time to act on these things.. from what everyone has told me tho the longer you leave these symptoms untreated the more likely the disease will progress and more damage is being done, damage that may not treated by simple drugs. So I guess you just need to work out whats best for you and also keep your GI in the loop at all times.

Ok well thats enough rambling on from me.. Pred is making me all wired!! Ha..ha..

I hope you find a solution and get it back into remission as we all know how wonderful that feeling is.

Take care

 

[idon2738]

I second all the info that was given.

Just to comment on letting the symptoms go;

If there is ever a case (after much of your own research), you feel like your symptoms are mild enough to fight with diet and a healthy lifestyle make sure you discuss it with your GI. This is why it is so important to find a GI that you really get along with and who you feel you can express every and any thought to comfortably. It not only keeps you on the right track with controlling it, but relieves stress by educating you.

Like Tan said, going off of meds, even if you feel WONDERFUL is usually not a great idea because Crohn's is such a taxing disease. You can imagine how sending food through your intestines that are inflamed and ridden with ulcers can effect your body. Like nails on a chalkboard everyday, sometimes without even knowing! This can create damaged muscle tissue build up (lol scarring) that leads to a lot of your obstructions that can usually only be treated with surgery.
One of the other reasons it's not advised to go off of your meds is, without knowing it, you may not be absorbing all the vitamins, fats and salts your body needs. When you feel the weakness and fatigue set in, it could already have done some damage anywhere from your brain to your thyroid to your heart!

I wouldn't be bold enough to say that it is unmanageable without meds, but imo, takes a lot of research, knowledge and trial and error to create a plan that works for you.

Some find the risks far too great for the reward, some just don't understand the risks.

 

[Strineski]

Thanks!

Thank you all so much! Your responses were incredibly helpful and reassuring. I will follow your advice to let my dr. know about this flare-up, but I will also let him know that I'm not comfortable going on the Methotrexate just yet and find out what other options he can offer. I had a baby 10 months ago and I'm planning to breastfeeding for a few more months, so I'm not going on anything that won't allow me to do that unless there's no other option. I do continue to take Pentasa, but I'm still having symptoms; however, maybe the Pentasa is what's keeping the symptoms more mild than last time? Again, thanks and as I gain experience I hope I can be as helpful to others as you've been to me!

Stephanie

 

[Mike_in_IL]

Stephanie,

1 & 2) Even though it sounds like you now realize this, do NOT just let the symptoms continue to ride out and "hope" things get better on their own. Most likely, the flare-up will only get worse over time and you will regret not immediately contacting your GI. I know, because I tried toughing it out for about a few weeks longer than I should have. And the reason you're probably starting to flare up again is because you're no longer on the Prednisone (which, you probably became dependent upon; and now the Pentasa probably isn't strong enough to keep your condition in control). That's how it was every time I tapered off of the Pred 10 years ago when I was first diagnosed with Crohn's. I'd get down to about 5mg's/day and my flare-up would start to come back.

3 & 4) While I don't have the disease in my illeum (it's actually in my large intenstines), I too would second trying to stay off of the Prednisone if at all possible. Like I said, your body becomes dependent upon it and as the others have stated, it is definitely NOT good to be on long-term. My younger sister (only 26) also has Crohn's and has already started to develop Osteopenia, which is a pre-cursor for Osteoperosis due to the fact she was on the Prednisone too long without taking any Calcium/Vitamin D supplements.

And I fully agree that the Methotextrate seems radical for your situation, but has your GI talked to you about Imuran (Azathioprine), Remicade, or Humira??? The Remicade has worked wonders for me so far. It put me into complete remission 9 years ago (when I couldn't get off the Pred). For the next 8 1/2 years, I was only on Imuran, which kept things under control until I finally started to flare again this past May. This new flare got really bad, but I had another Remicade infusion at the end of July and I'm feeling 100% again! This time, I plan to stay on it for as long as it continues to work.

Don't be afraid to discuss all these options with your GI, and if you don't feel like he/she is right for you, do NOT hesitate to go see another and get a different opinion. Not all doctors are created equal.

Hope that helps,

Mike

PS - Everyone's body is different and responds to medications differently. So, what worked for me might not work for you (and vice versa). But from everything I've seen/read, the Remicade and/or Humira seem to be the best for getting moderate to severe flare-ups under control when lesser maintenance meds (Asacol, Pentasa, Imuran, Pred, etc.) aren't doing the job. In fact, my younger sister that I mentioned was having similar problems to you (she'd get off the Pred, then start to flare-up again) tried Humira a little over a year ago and that ended up putting her into complete remission! And it's kept her right there since. So, we've each had good luck with the Remicade and Humira.