Generally Feeling Unwell - 6MP Increase and Pred

[Kyle.h]

Good evening,

I became ill in May 2017 and was diagnosed with CD in September 2017, I was on Pred they managed to sort me out temporarily, then put on to Asa these made me so ill and finally put on to Mercaptapurine (6MP) 50mg.

I started to flare again in December through to March when I got the result of my pill cam back which had several deep ulcers and tiny hemmoridges.

I was put on entocort (Budesonide). However, after 2 weeks no change so changed back to 40mg of Pred, reducing by 5mg weekly.

Both the nurses and GI advised the 6MP wasn't working. I met with the GI last week and she has upped my 6MP to 75 mg and I have a referral to see the surgeon 14th June.

I had been feeling much better than on Saturday I started to feel groggy, this turned to loose stools by Wednesday and on Thursday I had to increase my Pred back up 5mg to 30mg. They have now increased my 6MP to 100mg.

Yesterday and today I have been feeling terrible, last night I had a roid rage at my partner. I was totally wrong and have felt guilty about it all day. I just feel generally unwell and not quite right.

Spoke with the nurse today and my bloods have something low and something high but she didn't seem too concerned. Sorry for the lack of information here, I was a bit brain fogged when talking to her and I didn't write it down.

I also have a partial prolapse and need to have a barium bum x-ray in a couple of weeks.

Really struggling at the moment, I feel like I'm not getting anywhere. Has anyone felt rubbish with the increase in 6MP, just generally unwell?

Is it the increase back up on the Pred?

I'm going away tomorrow and feel like this is going to dampen down the holiday.

Sorry for the long post. TIA, Kyle [emoji1308]

 

[ronroush7]

Hi, Kyle. I am sorry you are not feeling well. I don't know but maybe your doctor hasn't found the right mixture of medicine for you yet. I hope you can get to feeling better soon.

 

[December's flower]

Hey Kyle I'm on azathioprine for almost
two years. It's the same as 6mp. Just make sure with your doctor that you are on the right dose according to your weight. It's really important.
For me azathioprine has made my life a lot more easier and normal, although I have my moments
Give it some time to work
Otherwise you might consider in the near future switching to a biologic.
Good luck

 

[ronroush7]

I agree with December's flower.

 

[Kyle.h]

Hi, Kyle. I am sorry you are not feeling well. I don't know but maybe your doctor hasn't found the right mixture of medicine for you yet. I hope you can get to feeling better soon.

Thank you Ron, I'm sure I will get there [emoji1303]

 

[Kyle.h]

Hey Kyle I'm on azathioprine for almost
two years. It's the same as 6mp. Just make sure with your doctor that you are on the right dose according to your weight. It's really important.
For me azathioprine has made my life a lot more easier and normal, although I have my moments
Give it some time to work
Otherwise you might consider in the near future switching to a biologic.
Good luck [emoji3]

Thank you, will give it time. Maybe I'm just adjusting, glad Asa has worked for you. That so good! [emoji4]

The GI advised she would rather I didn't start biologics due to them been quite nasty. We have both discussed surgery and this looks like the next steps.

Thanks again

 

[Anna's Bandit]

I just started 6mp a week ago. I have been checking to see if I have any SERIOUS side effects, but nothing to mention so far. I'm still irritated by my noisy neighbors, I still have my tinnitus and I am still always tired .

Surgery before biologics ?
Why ?

Take Care.
Lynda

 

[Kyle.h]

I just started 6mp a week ago. I have been checking to see if I have any SERIOUS side effects, but nothing to mention so far. I'm still irritated by my noisy neighbors, I still have my tinnitus and I am still always tired [emoji1].

Surgery before biologics ?
Why ?

Take Care.
Lynda

Hi Lynda,

[emoji23][emoji23][emoji1305] hope they work for you! As for the neighbours, I'll send someone round [emoji6]

It was a joint decision.. I only have a small area affected and I'm planning on moving to Canada for a year in January, the biologics would make this impossible. The GI's preference was also surgery so we agreed to go this route.

Thanks [emoji4]

 

[Anna's Bandit]

Kyle, it sounds like you and your doctor have good communication and you know what's best for you. I totally understand about the surgery though. Canada sounds great ! A few folks here live in Canada. Take Care and Stay Healthy. Lynda.

 

[Kyle.h]

Kyle, it sounds like you and your doctor have good communication and you know what's best for you. I totally understand about the surgery though. Canada sounds great ! A few folks here live in Canada. Take Care and Stay Healthy. Lynda. [emoji196]

Yes, the openess has really helped with the GI.
Thank you Lynda, take care [emoji4]

 

[Anna's Bandit]

Whoa. Holy Hell. I believe the 6mp pill side effects have finally hit me full force. A terrible day.

 

[Kyle.h]

Whoa. Holy Hell. I believe the 6mp pill side effects have finally hit me full force. A terrible day. [emoji856][emoji15][emoji42]

Sorry for the delay. Oh no, I hope your feeling a bit better now. I keep going up and down, the taper off Pred doesn't help either. Keep strong, hopefully you will adjust soon! Take care.

 

[Anna's Bandit]

....

 

[Anna's Bandit]

I get a blood test every two weeks since starting the 6mp. Last blood test showed a slight raise in potassium. The Ensure Drinks that I drink have a lot of potassium and I drink quite a lot of them, so really no worries on my potassium levels. Gonna quit buying the Ensure Drinks anyhow, they are expensive and make my mouth feel icky.
Take Care.

 

[my little penguin]

Kyle h
Please get a second opinion
Surgery doesn’t fix Crohns
It only removes the scar tissue
But damage still continues

Not understanding your hesitance for biologics
Ds was dx at age 7 and has been on biologics for 7-8 years now
Without any extra illness or anything else
Except a nice pink healed instestine
That looks perfectly normal and healthy

Tylenol given to infants can have “nasty” POTENTIAL side effects
as in Steven Johnson syndrome /liver failure/death

Amoxicillin same way
All drugs have potentially deadly risks

6-mp has a high rate of lymphoma /skin cancer and liver damage
Which is why pediatric GI no longer use it
They use methotrexate instead on kids
As well as biologics
But not 6-mp

Woth this disease
It’s a matter of what works for your particular case

Having some sort of treatment that calms inflammation is necessary
Even if that biolgics otherwise surgery
Keeps repeating
You can live without a large instestine
But small intestine is required
If it gets too short from too many surgeries then your left woth short gut syndrome and only drinking amino acid elemental formula

Wishing you the best with surgery
But please get a second opinion first