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Crohn's related arthritis.

Honey

Moderator
Staff member
I have been diagnosed now with Crohn's related arthritis! It began with shoulder pain,just thought I had pulled muscles? Walking impaired and weak!
Any advice would be helpful? Thank you.
 

my little penguin

Moderator
Staff member
My kiddo was dx with ibd related arthritis at age 10 (now 18)
Are you seeing a rheumatologist?
What meds did they put you on for the arthritis?
 

Honey

Moderator
Staff member
Hi there, thank you for your prompt reply. I am on sulfasalazine 500mg , 4 a day. I have been told it will take up to 4 to 5 months before I start to feel the benefit. However, the pain has eased a bit after 2 months, but I am weak and walking is impaired. Confined to the house just now, except for medical appointments. I was very active before, enjoying Tai Chi and Art work. I wonder if I will get back to all that in the future?
 

my little penguin

Moderator
Staff member
If the sulfanazine does not work you can try other meds
They need to determine if your arthritis only flares when your crohns is flaring or if it flares independently of crohns activity

my child’s arthritis flares even when his crohns is calm and not active

he was on humira for crohns at time of dx of arthritis so they added methotrexate
Methotrexate is a standard med for crohns and arthritis
He now takes Stelara and methotrexate for his crohns /arthritis

if your arthritis is under control with the right meds (which meds are right depends on the person )
Then activity should be ok
My child has played the cello for 10 years while having arthritis in both hands
Exercise is important for joints
Your rheumatologist should prescribe physical therapy

you need to be seen every 2-3 months by a rheumatologist until things are under control and your activities are back to before your dx
 

Honey

Moderator
Staff member
If the sulfanazine does not work you can try other meds
They need to determine if your arthritis only flares when your crohns is flaring or if it flares independently of crohns activity

my child’s arthritis flares even when his crohns is calm and not active

he was on humira for crohns at time of dx of arthritis so they added methotrexate
Methotrexate is a standard med for crohns and arthritis
He now takes Stelara and methotrexate for his crohns /arthritis

if your arthritis is under control with the right meds (which meds are right depends on the person )
Then activity should be ok
My child has played the cello for 10 years while having arthritis in both hands
Exercise is important for joints
Your rheumatologist should prescribe physical therapy

you need to be seen every 2-3 months by a rheumatologist until things are under control and your activities are back to before your dx
Thank you for your positive, helpful reply. I am being monitored every two weeks : blood tests. I have a history of bad reactions to drugs in the past. So far,ok! It is a telephone appointment in a few months time. This now seems to be the norm after Covid lockdowns!
I am making sure I remain as active as possible . Loads of interests can't do just now though.
If the sulfanazine does not work you can try other meds
They need to determine if your arthritis only flares when your crohns is flaring or if it flares independently of crohns activity

my child’s arthritis flares even when his crohns is calm and not active

he was on humira for crohns at time of dx of arthritis so they added methotrexate
Methotrexate is a standard med for crohns and arthritis
He now takes Stelara and methotrexate for his crohns /arthritis

if your arthritis is under control with the right meds (which meds are right depends on the person )
Then activity should be ok
My child has played the cello for 10 years while having arthritis in both hands
Exercise is important for joints
Your rheumatologist should prescribe physical therapy

you need to be seen every 2-3 months by a rheumatologist until things are under control and your activities are back to before your dx
 

my little penguin

Moderator
Staff member
The rheumatologist needs to see you in person and physically “feel” the joints to determine if it’s working
Waiting 5 months when flaring is not recommended
Bloodwork won’t show how bad the joints are
Even during Covid my kiddo sees the rheumatologist in person
Gi is video call which is fine
But rheumatologist has to be able to examine the joints
 

Honey

Moderator
Staff member
Unfortunately, that is how it is here. My face to face will not be until December! Blood tests are purely to check I have no side effects ,or complications. I shall just have to make sure I relate exactly how I am!
 
@Honey - my son too was diagnosed with arthritis at age 19. He has arthritis in both hips. At the point of diagnosis, he couldn't walk - we actually had to wheel him into the hospital as he wasn't able to walk the hallways, and with the right medicatiion (Remicade) - both his Crohn's and arthritis are controlled. You wouldn't know he had arthritis at this time (he is 23). So you will feel better but it's just a matter of getting the right medication for you. As MLP stated, you need to physically see a Rheumatologist and MRI's completed.
 

my little penguin

Moderator
Staff member
Assume given your not seeing face to face till December that your not seeing a rheumatologist and
Are just seeing a general practitioner that is getting notes from your Gi team to treat your crohns related arthritis??
 

Honey

Moderator
Staff member
Unfortunately, that is how it is here. My face to face will not be until December! Blood tests are purely to check I have no side effects ,or complications. I shall just have to make sure I relate exactly how I am!
Make sure to take pictures if your joints are swollen to show to the doc in the patient portal at least .
Assume given your not seeing face to face till December that your not seeing a rheumatologist and
Are just seeing a general practitioner that is getting notes from your Gi team to treat your crohns related arthritis??
I am not seeing my G.P. either as she has passed this on to Hospital Consultant. Hopefully. this dosage of meds works, as increase would interfere with my Crohn's meds. So far , so good. I have improved enough to feel more comfortable , but still in pain. On pain relief meds too. It is not a video call so cannot forward photos. Thank you all for your replies. Need to rest now.
 

Honey

Moderator
Staff member
I am not seeing my G.P. either as she has passed this on to Hospital Consultant. Hopefully. this dosage of meds works, as increase would interfere with my Crohn's meds. So far , so good. I have improved enough to feel more comfortable , but still in pain. On pain relief meds too. It is not a video call so cannot forward photos. Thank you all for your replies. Need to rest now.
 

my little penguin

Moderator
Staff member
If the dose does not work
There are plenty of meds that treat crohns and arthritis at the same time with one med

Humira /remicade treat both
Methotrexate treats both
Stelara plus methotrexate treats both

6-mp or imuran is typically not used in arthritis
 

Honey

Moderator
Staff member
If the dose does not work
There are plenty of meds that treat crohns and arthritis at the same time with one med

Humira /remicade treat both
Methotrexate treats both
Stelara plus methotrexate treats both

6-mp or imuran is typically not used in arthritis
I have been on both these meds and had to come off them .Remicade too ,sent me into hospital with breathing difficulties . So, I am glad I seem to be doing ok on present meds. Looking forward to feeling stronger and getting out and about again.
Thank you all for your support at this difficult time
 
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