New to forum

[Tina_86]

Hi all

I am new to forum and so thought I would share my story and hopefully get a few questions answered! I became very ill last year and after being admitted to hospital I was quite lucky to be diagnosed very quickly with Crohns. I have had numberous berium meals, colonoscopies etc and have been placed on medication accordingly. I am now off those horrible presidone and have been for 3 months now but my joints are still aching constantly. Does anyone else suffer joint and muscle pain with their crohns? Operating isn't an option an mo as both small and large bowels are effected. I find I am still getting to grips with my condition and often get soooo down! I have a few more tests in the next few weeks, Dr is thinking of stepping my medication up to Imuran - has anyone got experience with this med? I read there is risk of hair loss and increased risk of cancer with Imuran and so am quite scared and don't really know if I will actually take this med if prescribed to me? I also need B12 injections and have done for nearly 3 yrs. Looking back I think I hav prob had crohns for a lot of years but that this was just a really bad flare up which brought my attention to it!

Any advise would be greatly appreciated

 

[glum chump]

Hi Tina 86:

Welcome to the forum! Oh, yes, the prednisone woes. How I hated Prednisone, although I really appreciated what it did for me, at least in the beginning.

The joint pain could be a residual effect of the prednisone, but it's also an indication of Crohn's inflammatory involvement in parts of the body other than the GI tract. I have joint pains, and haven't been on Prednisone for years---for me, the joint pain is not Prednisone related, but Crohn's related.

I have been on Imuran on and off for several years. My hair did fall out at a faster pace, although I still have a full head of hair! However, my doctor put me on Imuran while I was still on prednisone, and I took Imuran as I tapered off Prednisone because it can take a while (about three months) for Imuran to take effect. Yes, there are side effects related to Imuran (and a lot of the other medications) that are scary, but for me, the need to feel better was really important. Imuran worked for me for about 1.5 years, but then it stopped being effective. Under the "Treatment" section of the forum, there is a subforum called the "Imuran Club" and there's tons of good information there and you might find a lot of your questions answered there as you try to decide whether Imuran is an option for you.

I hope the B12 injections give you some positive energy. I know that I felt the difference after getting the B12 shots.

Wishing you well.

Kismet

 

[KWud]

:welcome:

Hey Tina

Welcome to the forum. This is a great place for info and support
I too get join pain which occurs when I'm having a crohns flare, this appears to be a fairly common theme with people affected by crohns.

I was taking Azathioprine (Imuran) for 10 years plus with no side effects and it kept me flare up free for over 6 years (pretty good going), hope this is reasurring

Take care and stay well.

Paula
x

 

[Jennjenn]

Hi welcome

Many people with crohns suffer from muscle aches and joint pain. For me it seems when the flare is worse the pain increases. I also go for B12 shots. I am not on Imuran but I am sure the information above and the subforum for the Imuran can answer your questions and concerns. I hope you feel well soon

 

[slightlysilly]

Hi Tina!

Welcome!

I have no experience with Imuran, but I cannot seem to get off prednisone! Hopefully, your muscle and joint aches are from weaning off the prednisone and will take care of themselves soon. (I know I know, wishful thinking right?)

You've come to the right place, the people here are soooo helpful with any questions you may have...

Cheers!

 

[Guest]

just a different perspective from a Crohnie who isn't on any of the meds - although that might change soon

i've had joint pains virtually all my life, some times worse than other times - i've been Crohn's free for 20 years until recently, yet still had joint aches... my opinion is that with Crohn's, whether we're flaring or not, it still can have this effect on our bodies. my knees and ankles have always been the worst, in fact when i was a kid they sent me for short-wave diathermy treatment for months for 'growing pains' - but i never grew out of it.

 

[archie]

Hi and welcome. When I got diagnosed last May with crohn's I had an awful pain in my mid back and right wrist which lasted for ages it got worse as the crohn's got worse in fact the back pain used to feel worse than the stomach pain it was a dull ache worse when I extended my back anyway long story short I have since had a sb resection feel a million times better and no longer have any pain (apart from the spot they put the epidural in for the surgery!!!). I have no advice about the imuran as I was never on it but my hair did fall out on the pred but not noticable. I've been off all meds for 3 months now and the only thing i've noticed is I have more hacks on my hand and lips which are taking forever to heal. Hope you feel better soon.

 

[ameslouise]

Hi Tina - not much to add that the others haven't already covered, but I just wanted to say Welcome!

You've come to the right place for support and advice!

- Amy

 

[AndiGirl]

Welcome to the forum, Tina!