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

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

I agree with Mandy - you should contact your doctors office.

Me too.

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...

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.

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

I am sorry. Prayers being sent.

Hi glad u went .. sorry your having a flare hope it gets under control soon .. hugs

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.

Cbanner said:

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

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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

Good luck and courage Cbanner, let us know how it goes.

I sure hope you turn the corner quickly!


Lauren

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

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

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

tots said:

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

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So sorry.

Cbanner said:

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

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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

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

Cbanner said:

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

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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?

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

Oh I see, that's unfortunate. Drugs eh? And some people take them for fun @.@
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?

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

I am sorry. I hope things go better.

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

Me too.

How are your eyes now? and your vision? Its a chance you and drs reacted promptly!

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

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.

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

I am glad things are going in the right direction.

Best of luck . Hope things resolve quickly

Seen consultant today, I'm starting infliximab either this week if not next week, fingers crossed this will work
Anyone experienced infliximab? Any advice greatfully appreciated. Thanks

I have been on it. They usually have me Benadryl and Tylenol to avoid side effects. If you think you might have trouble paying for it , check into Remistart. I ,personally, developed a rare side effect called folliculitis. There is also a thread in this forum dedicated to this medicine. You might want to check it out. I wish you the best.

Thanks for that ronroush much appreciated, I'm in the UK so thankfully I don't have to pay as I bet it's expensive! Did you have any other side effects at all?

None that I recall. It made me sleepy while it was being administered.

Okay thank you for that, hopefully this will work seeing as I've reacted to everything so far

Best to you

Cbanner said:

Seen consultant today, I'm starting infliximab either this week if not next week, fingers crossed this will work
Anyone experienced infliximab? Any advice greatfully appreciated. Thanks

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Hi ye its expensive around £1,500 an infusion depending on your weight as its so much infliximab to so much weight. I really hope it works for you.
Despite being on it for 14mths n on double dose for 2/3 it did not help me . Unlucky i guess..
It is the best treatment available at the mo..best wishes

Hi.
I started infliximab on 2nd November, had the second infusion on 16th, and am due my third on 18th of this month. These are the loading doses, it will then drop to every eight weeks.
The hospital send me a blood form and I get a blood test done at my surgery a week or so before the infusion.
When I turn up at the hospital for the infusion, I have to produce a urine sample. If this is ok then the infliximab is ordered from the hospital pharmacy. It's not ordered until then because it's such an expensive drug and some people either don't turn up, or their urine sample shows something which makes them unable to go ahead. It takes quite a while to actually get the drug to the day ward, a couple of hours, so there's been a lot of hanging around.
The drug is dripped through over two hours whilst I'm lying on a bed, blood pressure is taken regularly. Once the infusion is finished I've had to stay on the ward for another two hours to make sure I don't have an adverse reaction. As I understand it, the whole process will be a lot quicker...the drug will be dripped through in half an hour and I won't have to stay for two hours afterwards...once the loading doses are over with.
Because I was still on steroids I havent needed to have a steroid injection but now I'm off steroids I've been told I'll be given an injection before every infusion in future. Apart from that I've not been given any other medication prior to the infusion.
Touch wood, I've not had much reaction at all. After the second infusion I was quite tired for a day or two but not enough to take to my bed. I have noticed over the last week that my hair has been coming out a bit and my scalp is quite itchy so I'm going to ask my IBD nurse about that.
Infliximab is the only crohns drug I'm on, I couldn't tolerate aza which is a shame because I understand the two drugs work well in combination.
I hope this is of some help to you Cbanner, and have my fingers crossed for you that the infliximab works wonders for you
Bunty x

Mandyk- thank you for your best wishes, sorry It didn't work for you I'm hoping it will with me but until I try it I won't know, I wish you all the best
Bunty- thank you so much for the information you've provided me I really appreciate it, very helpful indeed as I'm not familiar with it at all. I couldn't tolerate aza,6mp and mtx so hopefully I will with this. All being well I due to have my first infusion next week so will keep you posted on how I get on. Hope all is well with yourself, thanks again

I so hope it works for you it does for most i pray your one of them. Best of luck. Hugs n support

Had phone call today to say that I will be sarting infliximab on Thursday, not long to wait at all
mandyk- thank you very much, im just hoping this will work as everything else so far I've reacted too, hope all is well with yourself?

Hi your welcome. Thurs eh! Not long at all now. Crossing fingers you get relief with it n no reactions. Hope its your saving grace. Hugs
Thanks im doing ok at the mo.

Had my first infusion today, I arrived at 10.30am and left at 7.30pm, my heart rate was high initially so had to have blood test before infusion. Apart from that all went well with no reactions thankfully, next one in 2 weeks, fingers crossed it works for me

Hope it keeps working.

Fingers are crossed

Glad it went well Cbanner, I'm off for my third one in an hour or so.
It's a long day isn't it, I'm taking my kindle with me and some puzzler books. Last time I read almost an entire book, good in one way but at this time of year especially there are a million things I need to get done.
Let's hope it does the trick for you
Bunty x