Share Facebook


 
11-20-2015, 02:10 PM   #1
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Advice please

I've been on pred for 5 weeks now, originally started off on 40mg now I'm down to 20mg and reducing by 5mg every week. I haven't been too bad with my symptoms however last night I started to have really bad abdo pain as well as watery stools with blood again.

Why would this be the case if I'm on steriods? Does the dosage need to be increased?

Would appreciate any info. Thanks
11-20-2015, 02:20 PM   #2
fuzzy butterfly
Forum Monitor
 
fuzzy butterfly's Avatar
 
Join Date: Jul 2015
Location: manchester, United Kingdom

My Support Groups:
Hi i would advise you contact your doctor. It may be that you need to increase again. Best to be safe than sorry. Best wishes 💕
11-20-2015, 04:11 PM   #3
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
I agree with Mandy - you should contact your doctors office.
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-20-2015, 06:56 PM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Me too.
11-20-2015, 07:16 PM   #5
Justanothercp
Senior Member
 
Justanothercp's Avatar
 
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
I agree with contact the MD.
I will also say, I had a hard time weaning off prednisone, I had to try 1 mg at a time...
I ended up having surgery, but you may just need to wean slower, like 2.5 mg drops instead of 5mg. Discuss with MD...
11-23-2015, 11:39 AM   #6
CrohnsChicago
Super Moderator
 
CrohnsChicago's Avatar
 
Join Date: Aug 2012
Location: Chicago, Illinois

My Support Groups:
Definitely let your doctor know. It could be a withdrawal symptom but it could also be that your body is not yet ready to be taken off of the medication or it's not the appropriate treatment plan for you.
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

11-25-2015, 01:04 PM   #7
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Thank you for all your advice, went to GP as I couldn't get in contact with consultant.
GP has sent me into hospital with suspected flare up with high temp and high pulse rate
Feels like I'm in hospital so much these days
11-25-2015, 01:09 PM   #8
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I am sorry. Prayers being sent.

11-25-2015, 01:09 PM   #9
fuzzy butterfly
Forum Monitor
 
fuzzy butterfly's Avatar
 
Join Date: Jul 2015
Location: manchester, United Kingdom

My Support Groups:
Hi glad u went .. sorry your having a flare hope it gets under control soon .. hugs 💕
11-25-2015, 02:01 PM   #10
CrohnsChicago
Super Moderator
 
CrohnsChicago's Avatar
 
Join Date: Aug 2012
Location: Chicago, Illinois

My Support Groups:
Glad to hear you made the choice to see a doctor. Sending lots of healing vibes your way and fingers crossed they can help you find a solution that works.

Thank you for all your advice, went to GP as I couldn't get in contact with consultant.
GP has sent me into hospital with suspected flare up with high temp and high pulse rate
Feels like I'm in hospital so much these days
11-25-2015, 08:19 PM   #11
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Thank you all for your kind words, have been put on IV fluids and IV steriods as my blood results show inflammation so I've got another flare hopefully be starting infliximab, awaiting approval from consultant

I appreciate all your support thanks again
11-25-2015, 10:19 PM   #12
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
Good luck and courage Cbanner, let us know how it goes.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-25-2015, 11:56 PM   #13
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I sure hope you turn the corner quickly!


Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!

Last edited by tots; 11-26-2015 at 11:02 AM.
11-26-2015, 05:25 AM   #14
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Seems like the consultant is going to start methotrexate with possibly humira and increase steriods after I've had IV steroids.

In quite a lot of pain at the moment but hopefully things will settle down sooner rather than later

Any advice on methotrexate or humira?
Thank you so much for all your comments much appreciated
11-26-2015, 08:56 AM   #15
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
These are two drugs I have not been on yet. Anyone have experience with these? Happy Thanksgiving.

11-26-2015, 11:03 AM   #16
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I failed Humira. I think my Dr does not treat me aggressively enough.
I need more than one medication. This flare started 5 years ago!


Lauren
11-26-2015, 12:53 PM   #17
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I failed Humira. I think my Dr does not treat me aggressively enough.
I need more than one medication. This flare started 5 years ago!


Lauren
So sorry.

11-26-2015, 09:17 PM   #18
esther_m
 
esther_m's Avatar
 
Join Date: Oct 2015
Location: Melbourne, Victoria, Australia

My Support Groups:
Seems like the consultant is going to start methotrexate with possibly humira and increase steriods after I've had IV steroids.

In quite a lot of pain at the moment but hopefully things will settle down sooner rather than later

Any advice on methotrexate or humira?
Thank you so much for all your comments much appreciated
I'm on Humira and pretty happy with it because it doesn't give me side effects and it seems to be dealing with the problem (though I've been using it for only three months). My IBD nurse swears she's never seen any side-effects with it, which sure can't be said for a lot of other CD drugs.

So the main problem with Humira seems to be the 10% chance it doesn't work for you, and the declining effectiveness over time if you build up antibodies to it. To prevent antibodies they might put you on a second immuno suppressing drug (for me 6-mercaptopurine, for you methotrexate).

Methotrexate causes birth defects.

Good luck :'S
11-27-2015, 12:40 PM   #19
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Thank you for all your input, I was started on methotextrate today 25mg once a week and hopefully have an appointment in 2 weeks with consultant which is when he will decide about humira.

Tots- sorry it didn't work for you and I hope your sorted out soon because it is very frustrating.

Esther_m- I have been on azathioprine and mercaptopurine which I had reactions with both unfortunately so had to stop them, sounds quite assuring that there isn't many side effects with humira so I think it will be worth trying
11-27-2015, 02:24 PM   #20
esther_m
 
esther_m's Avatar
 
Join Date: Oct 2015
Location: Melbourne, Victoria, Australia

My Support Groups:
Esther_m- I have been on azathioprine and mercaptopurine which I had reactions with both unfortunately so had to stop them, sounds quite assuring that there isn't many side effects with humira so I think it will be worth trying
Hey yeah Azathioprine (imuran) made me really sick too. My white blood cell count bombed. Not sure what mercaptopurine will do to me coz I just started on it like 3 days ago, but I'm a bit nervous. Cbanner can I ask if you are male or female?
11-27-2015, 03:47 PM   #21
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
The mercaptopurine caused my liver ALT blood test to raise quite significantly and it caused upper right abdo pain but this was different to the 'crohns pains' so I had to stop but I was only on it less than 2 weeks though, I'm a 21 year old male
11-27-2015, 07:19 PM   #22
esther_m
 
esther_m's Avatar
 
Join Date: Oct 2015
Location: Melbourne, Victoria, Australia

My Support Groups:
Oh I see, that's unfortunate. Drugs eh? And some people take them for fun @[email protected]
They put me on a really low dose of MP while they see if I can tolerate it. So far no nausea, thankfully! I went all projectile on azathioprine. At least you're not a pregnancy risk -- they took the 'anything but methotrexate' attitude with me.

Has anyone else noticed that the go-to drugs in the USA seem to be different ones from those in UK/Aust? Or am I over-extrapolating?
12-05-2015, 07:04 PM   #23
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Thought I'd would give a quick update, I started methotrexate last Friday and woke up with swollen eyes that we're painful and blurred vision, spoke to doctor who sent me to eye hospital. I have now been told I need an urgent MRI scan to ensure there is no permanant damage
Confidently say the methotrexate has now been stopped, awaiting to start humira, got an appointment next week with consultant
12-05-2015, 07:07 PM   #24
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I am sorry. I hope things go better.

12-05-2015, 07:12 PM   #25
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
Thank you ronroush! Things can only get better, I try to stay positive about the whole situation, I'm hoping the humira will be ok and start to control it
12-05-2015, 07:14 PM   #26
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Me too.

12-05-2015, 07:15 PM   #27
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
How are your eyes now? and your vision? Its a chance you and drs reacted promptly!
12-05-2015, 07:24 PM   #28
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
The swelling has gone down quite a lot now as the methotrexate is a weekly dose so I didn't take anymore, vision is still blurred in left eye but the hospital said they can see inflammation inside the eye, fingers crossed this will be temporary! Since reacting to azathioprine and mercaptaporine I'm not taking any chances at all
12-05-2015, 07:32 PM   #29
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
You seem on the right path to recovery!
They declared methotrexate side effect?
Did they rule out uveitis or episcleritis? these 2 eye inflammatory diseases are often associated with IBD.
12-05-2015, 07:38 PM   #30
Cbanner
 
Join Date: Aug 2015
Location: United Kingdom

My Support Groups:
I hope I am, they have said methotrexate likely caused the swelling however they are not sure what is causing the inflammation, they did say they don't think it's uveitis as my eyes wasn't red? All they told me is that I've got to have MRI scan and follow up with neurologist/neuro surgeon to discuss results so all I can do is hope for the best
Reply

Thread Tools


All times are GMT -5. The time now is 06:56 PM.
Copyright 2006-2017 Crohnsforum.com