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Posted 6/17/2011 3:32 PM (GMT 0)
I've learned so much from reading a variety of different threads on this forum, but haven't quite found an answer to my question.
I was diagnosed with UC back in June of 2009, and have been in remission ever since. The GI prescribed 2 tables of Lialda every day which I take everyday.
The middle of Feb of 2011 began my first real flare up. I lost about 30lbs within 3 weeks with a lot of blood and mucus, going to the bathroom 20 times a day. The Dr. had me go on Prednisone starting at 40mg for one week and then start to taper. Well, that didn't work, I had to go back up to 40mg after two weeks because things weren't getting better. I finally tapered off without any problems, but the blood and mucus and very loose stool came back after being off the Prednisone for 2 weeks, but not with the same severity as the initial flare up. The Dr. said to go back on the Prednisone starting at 30mg and then taper. This time I took an extra week in the tapering process due to the bad headaches I experienced the previous time. But two weeks after being off the Prednisone I'm starting to flare up again.
I've been taking the Lialda throughout the whole process, but I just don't think it's strong enough any more. I taper off the Prednisone just fine, but the Lialda just can't quite keep me in remission. I'm thinking I need a stronger maintenance drug.
Has anyone had a similar experience?
Posted 6/17/2011 3:58 PM (GMT 0)
Has your dr. discussed taking 6mp (6-Mercaptopurine)? Prednisone stopped working for me and the 6mp worked for a little while. Asocal, Lialda, and Pentassa never did a thing for me as well. I was a tough case...none of the drugs worked on me! My last choice was Remicade...dr.'s usually leave that one for the last thing to try. Definately follow up with your doctor to discuss another path to take. Good luck!
Posted 6/17/2011 6:11 PM (GMT 0)

Jay79 said...
I've learned so much from reading a variety of different threads on this forum, but haven't quite found an answer to my question.
I was diagnosed with UC back in June of 2009, and have been in remission ever since. The GI prescribed 2 tables of Lialda every day which I take everyday.
The middle of Feb of 2011 began my first real flare up. I lost about 30lbs within 3 weeks with a lot of blood and mucus, going to the bathroom 20 times a day. The Dr. had me go on Prednisone starting at 40mg for one week and then start to taper. Well, that didn't work, I had to go back up to 40mg after two weeks because things weren't getting better. I finally tapered off without any problems, but the blood and mucus and very loose stool came back after being off the Prednisone for 2 weeks, but not with the same severity as the initial flare up. The Dr. said to go back on the Prednisone starting at 30mg and then taper. This time I took an extra week in the tapering process due to the bad headaches I experienced the previous time. But two weeks after being off the Prednisone I'm starting to flare up again.
I've been taking the Lialda throughout the whole process, but I just don't think it's strong enough any more. I taper off the Prednisone just fine, but the Lialda just can't quite keep me in remission. I'm thinking I need a stronger maintenance drug.
Has anyone had a similar experience?

My 2 cents:

I've never reached remission with 40 mg prednisone that appears to be the starting dose for every GI today. As I've mentioned several times, years back the initial dose was always 60 or even 80 mg, and a slow taper.

I still need that 60 mg or in hospital 100mg IV, and the taper can be rather fast if all works out.

Now, your medication ought to get you in remission whatever it takes, and then the doc ought to add the 6MP to your med regimen.

It boggles my mind that your doc first tries 40 mg, then again 40 mg, then 30 mg and expects it's going to work out?

How about a second opinion?

Good luck to you.
Posted 6/17/2011 6:23 PM (GMT 0)
When I first started flaring I wasn't able to see the doctor, but the nurse practitioner, she's the one who prescribed 40mg of Prednisone for one week and then taper from there. I saw the Dr. on a followup visit 2 months later and he said he always prescribes 40mg of Prednisone for 4 weeks before tapering. Sounds like communication skills are lacking.
I'm going to see my Dr. next week, and I will ask him about 6MP.
Thanks for all your helpful comments.
Posted 6/17/2011 6:40 PM (GMT 0)
Hi..welcome to the forum!

Your doctor should have prescribed you rectal retention enemas (Rowasa) in conjunction with the Lialda.

It would be, from my perspective, great if you could avoid the prednisone and immuno meds in the future.

Of course, using the oral/rectal route takes commitment and not all people prefer using the rectal meds.

It's still something you should consider, however.

q
Posted 6/17/2011 7:05 PM (GMT 0)

While your tapering off Pred you need to be getting on a maintenance med.  I'm currently on Low Dose Naltrexone (LDN) and Pred at 40mg at my second week. Was told to start taper after a week free of symptoms. I'm gona try to use LDN as my maintenance drug.  Google healingwell for LDN info.

Other maintencace drug are:

Apriso

Imruan

6mp

Remicade

Posted 6/17/2011 9:21 PM (GMT 0)

Jay79 said...
When I first started flaring I wasn't able to see the doctor, but the nurse practitioner, she's the one who prescribed 40mg of Prednisone for one week and then taper from there. I saw the Dr. on a followup visit 2 months later and he said he always prescribes 40mg of Prednisone for 4 weeks before tapering. Sounds like communication skills are lacking.
I'm going to see my Dr. next week, and I will ask him about 6MP.
Thanks for all your helpful comments.

Jay,

Hopefully it was all a communications problem and you'll get it all sorted out next week. Usually the first flares are easily taken care of with prednisone.

Good luck to you and enjoy your weekend.
Posted 6/17/2011 10:29 PM (GMT 0)
My last flare (one year long) Prednisone didn't do much for me - took a long time about 5 months on it at 40 ish and then 3-4 months to wean off it - with symptoms coming back... what did eventually work was upping the mesalasine , splitting the dose between am and pm to keep it in system, rectal mesalasine enemas (nightly for 4 months), and maybe even a touch of spinach/ sunflower seed/green tea dietary extras.

My doc too had jumped to 6mp as a next step suggestion - which i was not comfortable with - I had to ask for the enemas and I had to suggest the split doses... so glad I did - if i can avoid those stronger meds I will!!!

Also if symptoms are present but you are coping with your life... give it time to settle with 5ASA"s - patience is key! but of course if it is ruining your quality of life... consider other stronger options!
Posted 6/21/2011 12:11 PM (GMT 0)
I saw my GI yesterday and he reviewed my recent blood work. He said my colitis is still active but much improved since I first started flaring. He wants me back on Prednisone 40mg for 4 weeks and then taper down from there. He is also doubling my Lialda from 2 pills to 4 a day. This seems like a logical next step compared to other cases I've read about on this forum. He wants to try this approach before bringing out the big gun medication. I'm have some blood work done in 1 month and then a followup visit with him in 3 months.
Sure hope this round works, really want to get off Prednisone and get back to remission again. Might have to take my wife on a nice vacation rewarding her for putting up with her Prednisone hyped husband.
Posted 6/21/2011 1:55 PM (GMT 0)
so, did you ask him about the rectal meds?
q
Posted 6/21/2011 3:18 PM (GMT 0)
You need to start taking another drug for maintenence. Lialda isn't doing it for you. If you have high WBC and inflammatory markers coming back +, I think you would do better on another medication, 6mp or Imuran. I hate to say it but you're being put on prednisone way too much in such a short period of time, the doctor should have been mentioning immunosupressants by now. I know some may disagree but I was in your shoes and the only thing that got me off prednisone and stable was starting 6mp. I would still be on and off prednisone today if I hadn't given in to 6mp. Of course I didn't want to take a medication like 6mp but I am better off on it and stable than flaring 2 weeks after stopping a course of pred. Did you get stool tests? Tried any antibiotics? Tried other 5ASAs, higher doses? You should have been through all of this by now.

I also think it's time for a new doctor. You're in a serious situation and the GI has you seeing a NP? That's not right in my opinion. I know NPs are very capable but you've been on and off prednisone for how many months? You need to figure out a solution.

Posted 6/21/2011 3:47 PM (GMT 0)
I agree with the above: Prednisone is just a quick fix. I think it's time to seek another GI doctor. I went thru 3 dr.'s before I found one that put me on the right track.
Posted 6/21/2011 4:07 PM (GMT 0)
Yes, I certainly agree that I've been on Prednisone way too much, and more than anything I'm looking forward to being off it.
I already have 2 other GI's that have been recommended to me, but I was pleased with my last visit, so I'm going to sick with my current one for now, but he's on a short leash.
Totally agree with the comments about seeing the NP. I believe she caused me more harm than good.
A stool sample was taken a few months ago checking for a virus or bacteria infection, but that came back negative.
Prednisone is out of the question if remission is not obtained after this latest round of treatment. The Dr. has already discussed moving on to some strong drugs, so I'm very confident he won't push me towards Prednisone again. But if he does, I'll be cutting the leash and moving on towards another GI.
Overall I'm feeling much better, just a little gas. Stools are starting to form normally, it's just dealing with the side effects of the Prednisone.
Posted 6/21/2011 8:09 PM (GMT 0)
Jay, I am happy you're feeling better. It's also good to know your GI has mentioned the next steps. It sounds like such a terrible thing to be on 6mp or imuran but it's really not that bad once you find the dose that works for you. I am taking 25mg of 6mp and it's kept me in remission for a few months now. I am hopeful that I can stay healthy for a long time with the help of 6mp. 6mp/imuran are just a pill or a pill & a half a day, some people can' even stop taking their other medications (not everyone) but it's possible.

Goodluck, I hope you can continue with your current GI - it sounds like you're on the right track, you've just hit a rough patch. Things will improve.
Posted 8/11/2011 12:41 PM (GMT 0)
Quick update on my situation.
Completed the Prednisone 40mg for 4 weeks and then began to taper 10mg a week. Symptoms started to return when I hit 20mg, so I'm Prednisone dependent. Jumped back up to 30mg and things seem to be fairly stable. Stools are well formed, a little soft and on the thin side. I've had mucus ever since I started back on the Prednisone except for the week I was on 30mg of Prednisone. Just a tiny bit of blood with the mucus on the toilet paper. Looking to taper 5mg per week.
I've also been experiencing some rectal pressure. I'm guessing it's inflamed. I've read the rectum can take a long time to heal.
Right now I have 1-2 BM's a day, but 3-4 times where all I have is gas and some mucus. I'm thinking this is from the inflamed rectum.

Saw the Dr. yesterday to get on something else so I can get off Prednisone. He wanted to do a colonoscopy to check things out. Having that done on Tuesday. It's not the most pleasant experience, but it will help him see exactly what's going on in there. Anything that will give him more information to make educated decisions I'm all for.
He also wants me to start on Humira. We discussed some of the more intermediate drugs like 6MP, but since my wife and I are looking to start a family within the next few years he thought it better to jump to biologics. I don't have any problem with giving myself a shot every other week. Seems easier than taking pills every day.
I asked the Dr. about rectal meds and he said many of them have steroids and since I'm steroid dependent he'd rather not go that route.
Currently taking 4.8G of Lialda and 30mg of Prednisone (looking to slowly taper soon).
Posted 8/11/2011 3:29 PM (GMT 0)
Among the 5-ASA drugs, Lialda works best in targeting the right colon. For me, scoping showed that it (3 tab daily) cleared up my right and transverse colon, but after a fairly abrupt transition, the left and sigmoid colon was as bad or worse after 18mos on Lialda. I started rectal 5-ASA 3-4 nights a week. Seems to be helping, but it has only been 2 months and the diminished bleeding and slight stool improvement could be due to many things besides the new enemas. Time will tell.

If the issue is rectal and sigmoid colon, I think Lialda alone will not cut it.

I take the Lialda in the morning, because any dose after about 3pm leaves me with leg cramps in the middle of the might. The only thing that helps is about 10 minutes warm shower massage on the leg to relax the muscle. In general, waking up at 3am with a bad cramp, spastically stumbling out of bed to get to the shower, while trying to retain a Rowasa enema and avoid stepping on the cat, is not as much fun as it sounds.

I was on 100mg of 6mp for a few months, but was not seeing a large benefit. Blood work showed a metabolite score below established therapeutic levels, so I was going to have to up the dosage. Thing is, it made me lethargic and unable to concentrate. I decided to stop 6mp and give the Rowasa 6 months to work.

Anti-inflammatory foods (spinach, sunflower seed butter, ginger, turmeric) do seem to decrease discomfort, but did not do much to stop the bleeding and diarrhea. Gluten-free seems to help a little, but blood work did not show gluten antigens, so I am not intolerant, perhaps just benefiting from the removal of a harder to digest protein.
Posted 8/24/2011 7:59 PM (GMT 0)
Had my colonoscopy the other day which showed some inflammation in the left side and down near the rectum. They also took some samples which I tested positive for C Diff, which could explain why things haven't been going too well over the past few months. I started on a two week run of metronidazole (Flagyl). After that I'm going to start Humira.
Things felt a little better after starting the Flagyl, but it seems to be a bumpy road towards recovery.
Right now holding steady with 4.8G of Lialda and 20mg of Prednisone. Also added in some acidophilus to help with the C Diff recovery.
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