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Hak
Regular Member


Date Joined Feb 2007
Total Posts : 41
   Posted 8/16/2009 3:55 PM (GMT -6)   
Hey guys good Evening,
 
Just need some advice, I have suffered from UC since 1999, and the first 4/5 years I could manage how ever these last 2 years it has got a bit un bearable, I am currently on Prednesilone 20mg and MP6 and Azacol x 6 tabs, now my biggest problem is the Pred, I have been on it for over 2 years, I am so dependant on them, If i Lower the dose MY Uc gets worse, If i up them then I don't get any sleep, plus I don't want to up them as it's worse for the long run. My issue at the moment to put it in a nice way, is my head is just feeling mashed all the time my head has started to feel like this for the last 5/6 months, I have no motivation for anything at all, I have really bad  mood swings, and completly regret most of the stuff I say do once it has been done, I can't do much for example go for a walk as I worry about where the nearest toilete is etc so I just seem to lock myself at home as i feel safest there. I am pretty fed up, and I know there are people out there in a lot worse positions, and conditions, but I hate feeling like this. Now I just got a job a few months ago after getting my UC under control , and because of this I have been missing hospital appointments as I don't want work to know about my condition plus I want to keep this job. I seem to feel negative all the time, and people have said go for a walk or go for excercise which I have tried but after a day of it I just give up. I never use to be like this and I am only 25. Is there any suggestions upon getting motivated or any medicine to help my head feel clear. Also does any one know any decent advice places in the UK about this ilness, because every doctor I have been to so far has just not got it right for me and I have had this 10 years now and would like to go in the right direction.
 
Sorry about the rant and if i'm showing i'm feeling sorry for myself, but I really don't want to and just want to be happy about life again.
 
Cheers guys.

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/16/2009 4:01 PM (GMT -6)   
Well, there are other medications to get UC under control.. Remicade, some people are on Humira. Maybe ask someone here what the treatment dose of 6mp is because I don't, I'm on Imuran. You might also want to add rectal meds.

There are diets: raw foods and scd, other people here know more about them.

Umm.. yeah, pretty much I told you to ask someone else, sorry. But now maybe you have somewhere to start.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 8/16/2009 4:52 PM (GMT -6)   
Hak, prednisone can cause weird mood swings and brain freeze as well. I'm normally quite focused and don't get worked up easily, but I was on the edge often when on prednisone and had brain freeze a few times (where you feel spaced out).

So, just try to understand that it's not you, but the drug that is doing this to you. You've been on prednisone for a long time, so these sort of reactions would be expected.

If you want to work out but don't feel comfortable doing things outdoors, have you thought of joining a gym? Or if you want to work out at home, you could get a treadmill or stationary bike, or even try doing yoga. Yoga works well for me, and meditating has helped a lot too.

Again, 2 years on prednisone is a long time, and that much time on such a strong drug often does have side effects. Are you seeing any benefit from azathioprine yet?

You mentioned being worried about upping the pred dose because of the long-term problems, but if it were me I would rather speak to my doctor about upping the dose so as to get into remission asap so that I can get off prednisone, as being on a low dose for the long term leads to the same side effects too.

Hope you're better soon.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/16/2009 7:01 PM (GMT -6)   
     Sounds like prednisone side effects to me.  I have mood swings while on it too.  I was diagnosed in 98 with UC....actually ulcerative proctitis and it is a very stubborn disease.  My flares have been getting more frequent and lasting longer too.  Presently I am in a flare since the end of May, didn't start the prednisone till June 11th, but the doctor started me at only 30 mgm and that didn't do a thing.  He increased it to 40 mgm a few weeks later with a 5 mgm per week taper.  I have been on 6MP for about seven years.  It actually has NOT kept me out of flares.  I was on a maintenance dose of 50 mgm but when the doctor increased the prednisone, he also increased the 6MP to 100 mgm.  Well, all Hell broke loose.....my white count plummeted to 1.4 (normal being 4.0 to 10.0) and my bilirubin is twice what the normal should be.  My blood glucose is slightly elevated too.  The last two tests, I believe, is due to the prednisone and not the 6MP.  The doctor took me off the 6MP for two weeks to see if my white count will increase.
     Prednisone has given me osteoporosis....full blown.  Also high blood pressure.  So be very careful.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Hak
Regular Member


Date Joined Feb 2007
Total Posts : 41
   Posted 8/17/2009 5:32 AM (GMT -6)   

Thanks guys for advice and feedback, Yes I am a member of the gym but just no motivation to go, but I will try training in my home this week see if that helps me :) I have been told by quite a few that I have been on pred  far too long, so I am getting worried about this, I will ring my doctor up today/ tomorow and find out more. As I am only 25 and I don't want other issues happening to me so soon in life.

 

Again cheers guys, just the feedback and advice of people out there trying to help lifts me up.


Hak
Regular Member


Date Joined Feb 2007
Total Posts : 41
   Posted 8/17/2009 5:34 AM (GMT -6)   
And sorry to answer you question about 6mp no I have not noticed any diffrence what so ever, I am on 100mg and have been for the last 4 months.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/17/2009 12:54 PM (GMT -6)   
I agree, the prednisone can affect your mood. Hopefully knowing that will help.

I outfitted a home gym because I knew I was more likely to do that, especially in the morning, than deal with trying to work out in a public gym in the morning, especially if I wasn't doing well. I like being physically strong, even if my guts are weak. I bet you do too.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/17/2009 1:39 PM (GMT -6)   
Prednisone is very mood altering--as I'm sure you have discovered. You need to go back to your GI (or find a new one if you don't currently have one!) and figure out a more long term plan. Because being on prednisone as a maintenance drug is pretty sucky. And it sounds like you aren't even in remission anyway, so you need a better plan!

Also, when I am in a flare or getting out of a flare, I allow myself to let exercising fall by the wayside. I recharge/relax by doing more docile stuff, like reading a book or whatever. It took me a while to not feel guilty about the exercising, but your body can only do what it can do. :)
good luck!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (currently 80 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/17/2009 4:56 PM (GMT -6)   
I agree with that, too. Give yourself a break, no guilt about it, if that's what you need right now.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 8/17/2009 6:51 PM (GMT -6)   
I was on Prednisone for more than two years and steroid dependent. It really did a number on me (and my family). Your symptoms do sound like side effects from Pred. It took me almost a year of Remicade infusions to finally get off the Prednisone and it made a world of difference. You should explore that option.

Remicade was effective for me for awhile, but it looks like I'll be getting the surgery in a few months as it is losing its effectiveness.

Hang in there though, explore medications that will help you get off Prednisone. Talk to your doctor and tell him getting off Pred is a very high priority for you and that you need to work on that with him.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed). Having surgery in January 2010.

17 Remicade infusions (6 weeks sched: 1st: 7/21/07; most recent: 7/18/09; Current meds & supplements: Lialda, 4 tabs in the morning; Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Roweasa; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro; Xanax

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