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Posted 9/24/2008 5:09 PM (GMT 0)

I was diagnossed with UC a year ago at the age of 64.  My GI tells me that when the disease is diagbnosed after the age of 50, it does not respond to treatment as well as it does with younger people.  (Average age of onset is late teens - early 30's he says.)  Three weeks ago I started taking Imuran.  My UC symptoms are nearly gone.  Having 1 stool/day, no cramps, no diarrhea.  Trouble is - I am so weak and tired all the time.  The slightest exertion causes me to get dizzy, sweat and get real shaky.  It takes a long time for me to recover from one of these spells.  I also need at leat one nap a day and have those drowsy spells I see people writing about here.  My question:  are thee side effects from Prednisone or from Imuran.  If Prednisone, will they go away when I stop taking it?  If Imuran will they decrease in time.  My GI tells me I will be on Imuran "forever".  I would really love to hear from any of you, especially those diagnosed after the age of 50.

Posted 9/24/2008 6:22 PM (GMT 0)
Does your doctor subspecialize in IBD treatment? I wonder why he/she told you that UC with over-50 onset does not respond as well to usual meds as for younger patients. It seems that there is a wide range of response to IBD meds no matter at WHAT AGE patients are diagnosed! That's the nature of IBD: unpredictable. Sorry that you are feeling so weak & fatigued; hopefully this will improve as you get back to a more balanced diet + adequate rest. Are you taking vitamins? I'm over 50 & seem to have more pep (thankfully!) since switching to Centrum Silver multivitamins last fall. You can get a solid overview of UC concerns on Salix Pharmaceuticals Newsletter Website (Archive): the top U.S. gastros treating IBD write about meds, diet, lifestyle, travel with IBD, etc. Best wishes for you to feel stronger soon!!!! / Old Hat (nearly 30 yrs with left-sided UC;currently on 3 Colazal daily for maintenance of remission)

 

Posted 9/24/2008 9:13 PM (GMT 0)
I'd say most side effects would be from the prednisone. That stuff messes with you! I had a few side effects from the Imuran for a while, like tiredness, nausea, headaches, that seemed to lessen or go away with time. I'm still more tired than I think I should be, but not too bad.
Posted 9/24/2008 9:40 PM (GMT 0)
Welcome to HealingWell! The tiredness and sleepiness are likely from the Imuran. For many people this gets better as they're on the medication for longer times. Prednisone tends to cause insomnia and mood changes in most people.

Also take into account that tiredness is one of the manifestations of UC. So right now you have that feature overlaid with the effects of having been sick plus the medication. I'm also somewhat older, and my energy level has never quite come back to where it was before my five year flare - but then, I guess I'm five years older and that may have something to do with it.

Glad to hear you're doing so well now. Get plenty of rest, eat a good diet, take a good multivitamin and keep yourself hydrated. You'll probably find that as time goes by, you'll slowly start to regain most of your energy.
Posted 9/25/2008 3:56 AM (GMT 0)
My mom has UC (I have crohn's...crohn's colitis specifically, CD affecting my colon), anyways, my mom didn't get sick with UC until her mid 60's, she never found any meds helpful and gave up on them, she's always been super sensitive to meds, she just complained they all made her feel worse and gave up on them...she's in her 80's now, still med free but I make her take probiotics and omegas 3-6-9 which she says helps, she won't do the fibre thing, she's stubborn for the most part and doesn't always stay committed to things as far as meds for her UC...she suffered a heart attack and had a tripple by-pass 3 yrs ago on valantines day (ironic eh)...she's more committed to those meds and because she takes alot she couldn't be bothered to take more.

She often flares but sometimes (even without being on meds) she seems to get out of flares as well.

:)
Posted 9/25/2008 4:14 AM (GMT 0)

Honestly i would say alot of these things like tiredness and such are the fact that your digestive system which is a huge organ in the body and 60-70 % of your immune system is not in a healthy state.  Imagine what follows if something that big is not healthy...ya you guessed it you feel like crap! I cant even begin to list all the side effects of an unhealthy colon or digestive tract. I think alot of times people blame the drugs but really is more the ailment. You pop a pill and you get a headache, well must have been that pill. You get a headache, hmmm what was the last pill i took? We are always looking for an easy scape goat sometimes when it comes to the smallest things.

I have been on prednisone for some time now like 3 years and still taking 25mg daily atm, and ya i have felt really bad in the past and at times maybe thought it was my scripts. But one thing i learned was to tackle things on a different route i.e. diet and probiotics and currently i feel better than ever and still on the prednisone and such.

Posted 9/25/2008 8:30 PM (GMT 0)
Hi Jessiesmom,

     I was diagnosed with UC (located in rectum..thank God not traveling upwards...yet) in 1998 at the ripe old age of 52.  I was never told by my GI doctor the older you are when diagnosed the less you respond to treatment.  Not saying that it isn't true.

     I was hospitalized when first diagnosed...really sick, for eight days.  Placed on Asacol, prednisone (started at 40 mgm and tapered).  Enjoyed a wonderful two year remission, no symtoms and med free when UC loomed its ugly head again.  Since then, my flares have been getting closer together and tougher to beat.  This last one started in April, I was hospitalized (only the second time) for ten days in May.  Unable to get off the prednisone this time...weened off for only two weeks in August,  symptoms worsened, weened off two weeks ago and symptoms bad again.  Now back on 40 mgm of prednisone (hate the darn side effects) for the next five days, then down to 30 mgm for five days, etc..  Doc put me on the 6MP four years ago and it has not kept me in remission.  I am only on 50 mgm of this and he hates to increase it.  I also take nine Colazal capsules daily and Cort enemas at night with Canasa suppositories in a.m..  I bleed all the time, some days worse than others, with urgency (pressure in rectum).  I am not a candidate for Remicade as I was exposed to the TB virus back in the 60's (I worked in a hospital lab).  Prednisone can increase your blood pressure..it sure does mine.  My heart doctor prescribed a diuretic to take along with my Benicar and Toprol xl while I am on the prednisone.  He said the reason being that prednisone increases the fluid level in your tissues therefore the increase of BP.   When I was admitted to the hospital..it was 216/96...one of the reasons I went into the hospital.  They had trouble regulating it when in the hospital too.  Sometimes I wonder if half those doctors know what they are doing.  Anyway, I started taking Centrum Silver with Iron today.  I usually just take a multivitamin without the Iron.  I take Powerdophilus (probiotic recommended by my nutritionist), Calcium (very important..I developed osteoporosis from the pred but refuse Fosamax), flaxseed oil capsule...ugh! 

     Stay in touch...good luck to you!

 

Posted 9/25/2008 8:49 PM (GMT 0)

Boy, do I understand your Mom....pb4

" my mom didn't get sick with UC until her mid 60's, she never found any meds helpful and gave up on them, she's always been super sensitive to meds, she just complained they all made her feel worse and gave up on them...she's in her 80's now, still med free but I make her take probiotics and omegas 3-6-9 which she says helps, she won't do the fibre thing, she's stubborn for the most part and doesn't always stay committed to things as far as meds for her UC..."

I have given all the 5 ASA's time enough to work and make me feel better.  They helped the UC for sure but I kept feeling worse - like a bad case of flu - you know, the kind where you don't even want to get out of bed!  It is hard - and I am willing to try more and more but can easily see why someone our age (68 here) would just give up and live with the UC.  I felt better when diagnosed than I ever have since trying the medications. 

Just an observation!

ElaineNY

Posted 9/26/2008 4:30 PM (GMT 0)
Thanks for all your input. This is really helpful. I do take Centrum Silver - have taken it for several years. It sounds like all of you are saying "just wait it out". I don't think I have much choice. Will see my GI in 2 weeks - we'll see what he has to say. In the meantime I will just take a lot of naps. I've gained a lot of weight and was hoping if I got more energy I would start gettng a little more active and burn off some of this weight.
Posted 9/26/2008 7:04 PM (GMT 0)
Just remember there are genes that predict the behavior of the disease, so regardless of your age you still may be a mild IBDer and not necessarily a severe one, hopefully if you're mild then at least you may find benefits from the natural route or the right combination of RX and maybe even some naturals.

:)
Posted 9/26/2008 7:24 PM (GMT 0)
Do most people have to take Imuran for the rest of thier lives?
Posted 9/26/2008 10:48 PM (GMT 0)
     I believe so Jessiesmom.
Posted 9/27/2008 12:01 AM (GMT 0)
I was diagnosed last year at 57.  I have spells of tiredness mostly when I'm flaring.  Even then I try to do a minimal amount of exercise, maybe 25 min on my stationary bike at a really easy level or walking my dog.  I also go to yoga class twice a week, sometimes dragging myself there.  I feel so much better after the class I can't figure out why I didn't want to go! 

Hopefully this will pass for you soon, but in the meantime I'd suggest you try to do just a little exercise, then check yourself afterwards... do you feel better, the same or worse?  If worse, maybe a quick check with the doctor would be a good idea.

 

Posted 9/27/2008 12:34 AM (GMT 0)
Until sent this message I really thought that this message board was made up of folks much younger than I. I can't believe how many messages I have gotten back from members in their 50's and 60's. This is great. Thanks to all of you.
Posted 9/29/2008 12:17 AM (GMT 0)

Another over 50 year old here! I was DX last year..but had alot of stomach problems for YEARS. My mother also has UC for years and years, and my son has it. Hes in his early 30s.

Sue

Posted 9/29/2008 12:20 AM (GMT 0)

Welcome Sue - it is good to know others diagnosed in later years - not glad you have it but glad I am not alone.

As for family - they say it runs in families but I don't know ANYONE in my family except my son who has/had any stomach problems.  Maybe I am starting the gene pool!!

ElaineNY

Posted 9/29/2008 1:54 PM (GMT 0)

I am 57 years old & was diagnoised at 54.    It took about a year to get my BM's down from 8 a day to 3 a day.   It wasn't until I found this website that I realized some people were having 20 to 30 a day.  I've only taken one drug, balsalazide, since I was diagnoised.  At least I haven't had to bounced around from one med to the other until I found one that worked.  So I guess you could say that I've responded fairly well to my medication & I'm closing the gap towards 60 years old.

Posted 9/29/2008 2:27 PM (GMT 0)
Glad the input here is encouraging you, Jessiesmom. That's why we "oldtimers" write. RE Balsalazide (Colazal): it was a huge breakthrough (in early 2000s) for many of us who couldn't tolerate or got poor relief from the older oral 5-ASA meds. So, great to hear that it gave you fast relief, BevJay!!!!! There are now more treatment possibilities for the newly-diagnosed than for those of us who fell ill decades ago. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Posted 9/29/2008 2:44 PM (GMT 0)

Ok, BevJay and Old hat - experts with Colazal.  I think it was working for me also in just a couple weeks but side effects kept getting worse.  Somewhere along the way doc increased to 9 a day (was taking 6 a day) and doc added Rowasa.  Not sure what was making the most side effects.  I stopped both.  Then I tried Rowasa every other day and got the same side effects.  Doc put me on Lialda and same thing - so I stopped everything.  I have appointment on Friday and NP ask me to use the Canasa which I had left over from beginning this journey in June.  That seems to be increasing my bleeding and cramping problem each day.  Wish I could have continued the Colazal but not sure I want to wait a year for results.

ElaineNY

Posted 9/29/2008 10:59 PM (GMT 0)
Kops2da-- when Colazal 1st came on the market the recommended daily dose was 3 capsules 3 times a day. Routine testing continued at the National Institutes of Health, though, and last year, at the conclusion of Phase 2 (of 4) clinical trials, the recommended daily dose was lowered to 6 capsules daily. I haven't checked to see what's going on lately at NIH, but you might want to bring this up at next gastro appointment. I get side effects at 10 weeks on 6 or more capsules daily; however, my gastro let me reduce dosage because my UC symptoms remained in remission at 3 capsules daily. That's the way it goes with UC-- the med can make you feel better, it can seem not to do anything, or it can make you feel worse. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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