flare after five year remission on Asacol

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fadoozle
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/22/2017 9:25 AM (GMT -7)   
Hi there,

I haven't visited this forum at all in the last several years because I've been in symptomatic remission on Asacol HD (two tablets twice a day) and mesalamine enemas as needed. I'm 47 and have had UC since I was 20 with probably five or six flares total in that time frame. During my last flare I took a course of oral prednisone that did get me into remission but gave me horrible side effects. Hydrocortisone enemas also give me side effects, usually elevated heart rate, dry mouth, restlessness, trouble sleeping, etc. I know people say they're not absorbed systemically, but that hasn't been my experience.

In January of this year our prescription coverage changed and the insurance no longer covered Asacol HD. I had enough filled from the end of last year to keep on it until about June. I started on Lialda then, and beginning shortly thereafter I experienced that slow decline that ends in a full-blown flare. I feel like I was in denial and didn't start upping my rectal meds in time to fend it off, and I don't even know if that would have done anything, but what's done is done.

My doctor was able to reinstate coverage of the Asacol HD for one year. Within two days of being back on it (this was about two weeks ago), I felt better, but then took another turn for the worse. My GI said it's time for prednisone again, but I'm so reluctant.

Basically I have been AMA for a few weeks now, winging it and randomly switching up the rectal meds. I've stayed on the Asacol HD faithfully but have not been consistent with the rectals at all. My worry is that it's all too much 5-ASA in my system.

I also started on VSL#3 DS today. I took one packet and feel bloated and icky. My GI also ordered stool tests for c diff and giardia but I haven't completed them yet. Should I just take a half packet a day? I feel like it's probably a waste of time but am in that desperate place.

Right now I am up in the night going to the toilet once or twice and make about 5-10 trips to the bathroom every day. My GI agreed to my trying the Asacol HD and nightly hydrocortisone enemas before adding in 30mg of prednisone, but I haven't taken the hydrocort enemas in a long while. I'm afraid to. Being in perimenopause and a petite white female, I'm worried about bone strength when it comes to anything steroid. Last time I also had bad hair loss.

I don't know what to do. The toxicity of medication has always been something I try to avoid. I am in that wishful thinking phase that the flare will just go away on its own, but it sure isn't. I'm at about the one month mark. Any advice for me in terms of next steps?

Thanks.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 9/22/2017 10:04 AM (GMT -7)   
Welcome back.

Did you increase the mesalamine enemas to nightly....and for how long?

It's good to have stool testing done.

What exactly are your symptoms?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression) 
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10991
   Posted 9/22/2017 10:19 AM (GMT -7)   
Welcome back but sorry you're flaring. It sounds like your flare is pretty severe if you're 10+ bms a day and waking up multiple times during the night .

Yes, ease into vsl with a half packet for a couple days before taking the full dose as that will limit gas and bloating, and give your body time to adjust.

It's very, very difficult to have too much anti-inflammatory mesalamine. I was fine with taking a doctor-prescribed 4.8grams lialda orally and two 4.0 gram rowasa enemas, that's a grand total of 12.8 grams a day. I'm sure if you're at that or less then there's no issues.

Your condition certainly warrants some form of rescue medication like a steroid, or if you were to refuse them then an alternative like IV remicade or IV cyclosporine.

Yes, some have greater sensitivities to steroids than others. Overall a rectal-route steroid is 10 percent systematic as are delayed-release oral steroids. You can ask for budesonide-based steroids in delayed-release oral (uceris/clipper), or in rectal-route enema/foam formulations as they're known to be less side effects with them than hydrocortisone or prednisone have.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

My wallet is fat not due to money but rather my emergency toilet paper. Never be caught without tp in a bathroom stall, or even the patch of woods by the road...

quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 9/22/2017 10:31 AM (GMT -7)   
I was never on pred even at 20 timess daily.....i would say use rectals for a fair time. My longest nightly was 4 months.
Not to worry about mesalamine overload unless it is over the high end of treatment.

If you increase in symptoms with no stool positives ....maybe consider.
I would never use systemic steroid...i know mentally and physically that my tolerance wouldnt take it, unless kaybe a 10 day taper or quick spurt dosing.
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression) 
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!

fadoozle
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/22/2017 10:47 AM (GMT -7)   
@iPoop and @quincy, thanks so much for the quick responses.

I don't think this flare would be considered so severe as to warrant IV anything right now. I often go all day without a trip to the bathroom and can leave my house, go about my day, etc. Things are just worse morning and evening.

My symptoms right now are loose, thin stools to diarrhea. Most of the time on the toilet is passing small amounts of blood and mucous, though less of that now than before. When I actually pass stool there's very little blood, it's just really loose, and I do that about once or twice a day. I'm also down five pounds but that's because I'm not eating that much.

Reassuring to hear you both say that it would be hard to OD on the mesalamine. If that's the case, I'm going to stay on 4.8 g of Asacol HD (that's three pills twice a day), take mesalamine enemas nightly, 1/2 a pack of VSL #3 DS a day, a hydrocortisone suppository in the morning and see how it goes. @quincy, how long would you give that before you'd say it's time to consider the dreaded steroids?

@iPoop, have you ever tried Uceris? Why wouldn't my GI recommend that over prednisone?

fadoozle
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/22/2017 10:50 AM (GMT -7)   
One more thing:

Should I try psyllium husk powder and eat more? When I flare, I get in this "food is the enemy" mentality which it not helpful...

quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 9/22/2017 11:49 AM (GMT -7)   
You aren't anywhere in the category of pred/systemic steroids. My perspective based on experience.

You are on good regimen....stick with it for a month at leadt and go from there. Keep us updated, and ask questions, share how you are doing symptom-wise....it will change as you heal.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression) 
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!

Garthy
Regular Member


Date Joined Sep 2017
Total Posts : 45
   Posted 9/22/2017 12:09 PM (GMT -7)   
Welcome back. Sorry it's not in better circumstances. I think we must treat really aggressively in the uk. I've been under three GI teams in London and have been given steroids for a lot less. Not sure if that's a good or bad thing??

I've also never been suggested VS3L. Although he did mention FMT last week, anyone have experience of that?

I hope you get over the flare quickly.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8025
   Posted 9/22/2017 12:52 PM (GMT -7)   
"I've been under three GI teams in London and have been given steroids for a lot less. Not sure if that's a good or bad thing?? "


here, let me clear this up for you = STEROIDS ARE NOT A GOOD THING !

smile

but like a lot of things in life, sometimes they are almost a necessity - for folks who have responsibilities like work, family, etc. they can be extremely helpful - but they do come at a cost - some pay less, and some pay much more -

bottom line, use them if needed, but avoid if at all possible -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Garthy
Regular Member


Date Joined Sep 2017
Total Posts : 45
   Posted 9/22/2017 1:09 PM (GMT -7)   
I think I've done quite well for 12 years. I've found side effects different each time! I believe you're right though, they can be evil! What medication isn't though?
UC diagnosed 2005
Current meds Pentasa 2g bd
Azathioprine 75mg

fadoozle
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/4/2017 5:02 AM (GMT -7)   
Hi all,

I did end up going on 30 mg of prednisone. Since then I am experiencing total diarrhea, further weight loss, and weakness. I met with a new GI doc and am switching over to him. He put me on Uceris and was optimistic I can get things under control and maintain on 5-ASAs but if not would move to Humira.

So right now I'm on Uceris, three Asacol HD twice a day, and mesalamine enemas. I only have about 3 or 4 BMs per day, less cramping and urgency, but lots of gurgles.

Here is the thing. In 27 years of UC, I have never experienced total diarrhea like this. I've always had minimally formed stools even during the worse of flares. This is just mush. Still blood mixed in. Going on ten days like this. And I am completely beat. Zero energy. I'm eating but I feel like food is going right through me.

I'm doing some stool tests now but don't have any results in (still have one more sample to hand in).

I feel so isolated and lonely going through this. I have a wonderful husband and two amazing kids who are 11 and 14, and up until two months ago I was totally fine (running and working out, eating salads and drinking smoothies, just complaining about stupid stuff like perimenopause migraines). I took my Asacol HD like clockwork for years until I had to switch to Lialda because insurance didn't cover it anymore, and that's when things started to go south. I was also going through a hard time mentally (being hard on myself about not keeping up with housework, needing to work more as a freelancer, worrying about finances, wondering if I would ever figure out my "life purpose", etc.). It becomes really easy to blame myself for flaring after such a great run in remission.

I guess I'm just wanting to reach out and feel connected to others who know what it's like. The info about the medications is out there and I know no one on this board can solve any of this for me. I just feel really scared about the future, alone, and oh so exhausted.

Tips about handling the fatigue would be most welcome, though.

Garthy
Regular Member


Date Joined Sep 2017
Total Posts : 45
   Posted 10/4/2017 7:39 AM (GMT -7)   
I had a similar albeit lesser experience. My GI switched me from Pentasa to Octasa recently as it is cheaper. I ended up seeing whole Octasa in my stool and even checked to ensure it wasn't just shells. I have been switched back to pentasa now and seem to be making progress from the bowel point of view. If I could only sort out my joints!.

From the fatigue point of view I'm sure everyone will have conflicting advice. I usually try and adopt a pacing strategy. Sleep when you need to, relax with a hot water bottle or something.

You cant blame yourself, rather than blaming yourself for the flare, you could always view it as you had a really good remission and have the knowledge that things will get better.
UC diagnosed 2005
Current meds Pentasa 2g bd
Azathioprine 75mg

PhotoGirl
Regular Member


Date Joined May 2017
Total Posts : 53
   Posted 10/5/2017 10:00 AM (GMT -7)   
Are you still taking the 1/2 packet of VSL daily? I had a really bad time with the gurgles on that for about 2 weeks (and really bad headaches) before I quit using it and started a different probiotic.

Fatigue was really hard for me even months after the regular symptoms went away. Try to find things that you can eat (and like to eat) and add a little more of them when you can. I think I was living on PB filled pretzels for awhile LOL. Also, even though you're exhausted, I found that short walks getting a little fresh air really helped make me feel a little better, even if it was only a block down the street.

I hope you start feeling better soon!
Dx’d Mild Distal UC 5/2017
F, 52
Rowasa 2x/wk
Multi-vitamin, Doctor's Best Curcumin, Metamucil, Align, Digestive Advantage, problems with VLS#3 and Ultimate Flora Critical Care, Now on Advanced Gut Health 15B

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10991
   Posted 10/5/2017 10:48 AM (GMT -7)   
Entyvio risks versus benefits

We're all initially concerned when considering a new class of medications, myself included. What helped me was taking a look at the actual odds of risks versus benefits. The majority of UC patients who take entyvio do not experience side effects from it as the benefit far outweighs the risk of taking it. The odds of entyvio helping to improve your UC symptoms are about 65%. Entyvio should be inherently safer than other 100% systematic biologics (like remicade, humira, and simponi) are, as Entyvio is a Site-Specific-Immunomodulator that targets just the gastero-intestinal tract. Safer as you're only suppressing the immune system within a specific region of your body, it is less likely that you'd get infections elsewhere within your body as would be the case with systematic Remicade.

What kind of side effects could you get and what are the odds? Everything carries a small degree of risk and it's good to understand what that's all about. Let's delve a little deeper into risk.

"about 4% of patients experience infusion-related reactions either at the time you are receiving your medication, or within 48 hours of it." Infusion reactions are headaches, raised body temperature, flushing of the face, fatigue and other things which are generally quite minor. Infusion-reactions are often prevented by taking tylenol and claritin/benadryl prior to the infusion itself.

"In clinical studies, approximately 25% of patients treated with Entyvio developed an upper respiratory tract infection at some point. These include bronchitis (inflammation of the airways), influenza (flu),
nasopharyngitis (inflammation of the nose and throat) and sinusitis (inflammation of the sinuses)."
Entyvio is lowering your body's ability to fight off infections within the GI-tract, so you are going to be more prone to them as a consequence. It's the kind of thing that if you suspect you have an infection needing antibiotics then you should seek out treatment earlier, and sooner. GI-tract infections will develop faster and the symptoms will be worse while on Entyvio. As a general rule with all biologics they say you might, as an example, get an extra flu/cold a year than your normal. So, you're not super prone to them, by any means. Rather it is just an increased risk and something to be cognoscente of, and remain vigilant of while on it.

Entyvio does include a black box warning for PML, despite it never occurring to anyone taking that medication during the clinical trials or since it has been prescribed to patients. Entyvio was specifically designed to not cause PML, as predecessor medications within its class had done by using a different method of action.

Source: www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Risk-management-plan_summary/human/002782/WC500163289.pdf
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

That walk we do, due to post-public-restroom-embarassment, from our awful poop-spolsion in the bowl that flushing alone won't fully hide. Quiet, sly, and as near of a direct-path to the exit as possible...

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 10/5/2017 4:20 PM (GMT -7)   
I'm with you. My insurance (which went from $630 in 2016 to $1050 in 2017) dropped Asacol in their formulary, and I'm hoping I don't end up like you. It makes me so mad, I could spit.

Anyway, I'm seeing changes, and I'm a little worried. Not worried (yet) enough to see the GI (I lost my GI last fall when he left the clinic), but I'm having infrequent BMs, no blood or mucus, and sometimes unformed BMs, sometimes I feel like I can't empty my rectum/colon. I'm laying the blame for this change after years upon years of remission, at my insurance company's feet.

I have a huge deductible, so I haven't seen any docs this year. I cancelled my labs with the GI office, even though I'm on azathioprine, and I'm just waiting for the script to run out and I'll be forced to go. I didn't like the replacement doc they set me up with last year, so that doesn't exactly encourage me to make the appointment.

My former GI said scopes every year. Well, I chose not to have one last year, and the end of this year is coming and I'm thinking it may be time, much as I hate them.

Anyway, just wanted to commiserate with you over the darned Asacol. My mom says, "Can't you order it from Canada?" Well, yeah, if I had anything left after paying nearly $13,000 a year in premiums, I suppose I could. And I'm sure it wouldn't be cheap, even from Canada. I suppose I should check, but it's the principle of the thing. Still makes me angry.

fadoozle
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/9/2017 4:54 AM (GMT -7)   
Thanks for all those responses.

Since I last posted I came off of pred and went on Uceris. I was doing a bit better and then went into denial mode with what I ate yesterday and am seeing blood and diarrhea again.

Is the deal with Uceris that is should work right away? I feel much better on it than pred but wonder if it's doing anything at all. Also, is it worth asking my GI if I can switch to a different 5-ASA? I still have some Lialda left and would be willing to go back on Azulfidine (that is what I always took years ago and it worked for me). It seems silly to keep taking medications that aren't really doing anything for me.

I am going on about two months in this flare and feel really down. This morning I woke up with that "I want to be healthy but I'm not" feeling. I wonder why I am this sick again after having such a long remission and if there is any hope of getting back to a sense of normalcy.

Should I be taking a multivitamin?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10991
   Posted 10/9/2017 10:26 AM (GMT -7)   
It's possible your UC has progressed in severity and/or extent, necessitating strong meds.

You could try switching from lialda to Sulfasalazine (Azulfidine) but I am not sure it'd make a big difference.

I'd expect the steroid to work within a week or so, if it is going to. That's a weaker steroid meant for mild to very moderate inflammation. Prednisone is better suited for moderate to severe inflammation.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

You can't spell sUCks without UC.
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