Crohn's Disease Forum » Treatment » Prednisone/Entocort » Which is worse, long term use of prednisone or long term inflammation


11-26-2018, 04:44 PM   #1
Octobergirl
 
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Which is worse, long term use of prednisone or long term inflammation

I've been in a flare that doesn't involve my gut (Entyvio is taking care of that) but involves arthritis and iritis. I started on a really high does of Prednisone, 80 mg and I was supposed to taper very slowly, 80 mg for 2 weeks, 60 mg for a month, but I couldn't handle the side effects and so I only stayed on the 60 mg for 2 weeks and then tapered down by 10 mg a week until I hit 10 mg and have gone down by 5 mg. This is all while I'm waiting for Methotrexate to kick in. I've been on in for 9 weeks, but I haven't noticed any difference yet.

I tapered down to 2.5 mg this week and everything has come back, except the iritis is mostly under control since I have been on steroid drops.

My Sed Rate is back up to 50 and I'm really stiff again. I'm wondering, which is worse for me long term, letting this arthritis inflammation go on or going back on the prednisone and staying on it for a long time until I can find something that works. I'm tempted to bump my prednisone back up to around 15 mg since the side effects seemed less severe but who knows how long I would have to stay on that until I can find something that works for the arthritis. I do worry about damage to my joints though with the inflammation. Is there any real way to know what's better? I've been in this flare for 10 months.
11-26-2018, 07:47 PM   #2
Maya142
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First, I'd stop Entyvio. There have been several cases of Entyvio causing new onset spondyloarthritis or making existing arthritis worse.

It did for my daughter - caused a HUGE flare and it caused drug induced Lupus (but that is very rare).

You should be worried about long-term inflammation, if you do have spondyloarthritis (which I suspect you do - SpA is most often the type of arthritis associated with IBD), it can cause severe joint damage and spinal fusion. Typically the SI joints and the hips are involved, as well as the spine. But the spine does not have to be involved - any joint can be involved from a finger joint to your temporomandibular joints.

Ankylosing Spondylitis is the most well-known type of SpA. It is only diagnosed when there is a certain amount of damage to the SI joints visible on x-ray. Peripheral SpA involves peripheral joints, joints other than the spine. Psoriatic arthritis is another common type of SpA. Axial SpA is divided into AS and non-radiographic axial SpA. What researchers realized was that the disease was present long before they could see damage on x-rays - as much as 8-10 years before. During that time, there was inflammation that can be seen on MRI. Since MRIs have now been around for a while, most rheumatologists will do a pelvic MRI if x-rays are clean when SpA is suspected.

What have you tried for your arthritis? Are you seeing a rheumatologist? MTX only works on peripheral joints - NOT the spine - that is why it's important to know if you spine involved.

Otherwise, biologics are used - they do work for the spine. Have you tried Remicade or Humira? My daughter switched to Cimzia and her arthritis calmed down again. Stelara is also an option.

Long-term prednisone at those high doses will cause severe side effects. My daughter was on and off Pred for 6 years. She ended up with Cushing's syndrome - dark stretch marks, puffy moon face, rapid weight gain (30 lbs). She also got adrenal insufficiency - which can be fatal if you go into adrenal crisis. Also osteopenia and she was at risk for diabetes (but did not develop it thankfully).

Anyway, the point is that long-term pred is not a good idea. But you do need to change your treatment because long-term inflammation = permanent damage. Both daughters have it in their SI joints and hips and jaw. My younger daughter has had 3 surgeries including major jaw surgery.

My husband who also has AS has had 5 hip replacements and needs an ankle replacement.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-28-2018, 05:52 PM   #3
Honey
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Hi there, I do not know anything about that other drug for Arthritis, but I do know I am having problems having tapered off Prednisolone. I ended up having to go on Hydrocortisone for several months as my adrenal glands were not producing enough Cortisol. I am now borderline on the Cortisol level and have tapered off Hydrocortisone. It is swings and roundabouts it seems, as I am now suffering tiredness, weakness and limited in my walking just now, due to pain in my legs. I hope all goes well for you.
11-29-2018, 04:58 PM   #4
Octobergirl
 
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Hi there, I do not know anything about that other drug for Arthritis, but I do know I am having problems having tapered off Prednisolone. I ended up having to go on Hydrocortisone for several months as my adrenal glands were not producing enough Cortisol. I am now borderline on the Cortisol level and have tapered off Hydrocortisone. It is swings and roundabouts it seems, as I am now suffering tiredness, weakness and limited in my walking just now, due to pain in my legs. I hope all goes well for you.


Sorry to hear about your issues with tapering. How long had you been on prednisolone? Do you now just have to wait until your body adjust back to normal?


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