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12-24-2017, 06:47 AM   #91
Join Date: Oct 2017
I'm pretty sure it's not osteoarthritis. My left knee, which had inflammation for a LONG time (an actually needed a debridement) is completely quiet now. My right knee only relatively started recent new inflammation. I have NO pain. Given how long I have had knee inflammation, I am 100% confident it is not osteoarthritis.

So you all think that it's a good idea to stay on Stelara and add on immunonodulators (SSZ or MTX) rather than switching to Humira? My IBD doc agrees with me that staying on Stelara is worthwhile, but my rheumatologist thinks otherwise. Especially since I have had not side effects with stelara and it's best not to give up on a drug since there aren't really that many drugs available and I will have this disease for the rest of my life.
Your condition sounds like what i have. Mine started in one knee, MRI ruled out structural damage. I had a synovectomy in that knee and the biopsey indicated inflammatory arthritis. After that it switched into my other knee. The only pain i have is when it was swollen. Since ive been on prednisone my knee swelling has gone away. My crohns has also been symptom free. I had a cat scan on my stomach a month ago and there is zero inflammation in the intestines. So my gi doc doesnt believe this arthritis is crohns related which ive been on 6mp for a long time for. Both my docs are in agreement on the humira and stopping 6mp, which doesnt help arthritis. Now im about to start this humira because prednisone isnt really a long term deal. What we have isnt structural (maybe yours is i dont know), it is inflammatory arthritis that is related to immune system malfunction. If we keep the immune system in check then we keep the swelling in check. If the stelara doesnt work for the arthritis then you may need to switch to somthing that works for both the crohns and the arthritis, kinda the same boat im in, and you need to let your gi doc know that. Also im not 100% sure but i believe my rheumatologist said they wouldnt use humira on top of methotrexate together it is one or the other right now. I think they only resort to that if your condition is so severe that nothing works but i dont think they like mixing medications like that because humira in itself is a powerful medication much like mtx.
12-28-2017, 11:35 AM   #92
Senior Member
Join Date: May 2017
Very interesting dman. I think your situation is EXACTLY like mine. From what it sounds like I should have started Humira first, before starting stelara. Reason why I started Stelara is that it is more convenient and safer I think. So you think there is no point of adding Sulfasalazine or MTX to Stelara, and just switch to Humira? I am on 8mg of prednisone now, and there is very minima/slight swelling, but nothing too bad. I feel like I probably should have started Humira, but now it's hard to stop the Stelara because I think it may be working. The other thing is that since I had to take the prednisone taper a few times, I am not sure if the prednisone is just masking the symptoms and the Stelara is not actually working.
12-28-2017, 01:17 PM   #93
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Also im not 100% sure but i believe my rheumatologist said they wouldnt use humira on top of methotrexate together it is one or the other right now. I think they only resort to that if your condition is so severe that nothing works but i dont think they like mixing medications like that because humira in itself is a powerful medication much like mtx.
This is definitely not true. Humira is OFTEN combined with MTX. Stelara can also be combined with MTX. MTX in combination with a biologic is a standard treatment - they often use it for antibodies AND for therapeutic purposes. Same with Sulfasalazine.
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
12-28-2017, 06:48 PM   #94
my little penguin
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Join Date: Apr 2012

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Second that
Rheumatologist use humira and mtx together a lot even in little kids with arthritis.
It’s not something new
They have been using the two together safely for years

As far as switching to humira
Stelara takes a long time to work up to six months
That’s a given
Adding mtx only helps

Ds just had his first Stelara shot at 4 weeks yesterday
DS - -Crohn's -Stelara -mtx
Yesterday, 12:56 AM   #95
Senior Member
Join Date: May 2017
Just a little update. I am down to 7mg prednisone daily. I have also started on sulfasalazine 1 week ago and slowly increasing the dose (now on 500mg daily). I had a consultation with another IBD doc, and they said that they do not recommend stopping Stelara for now. I had labwork drawn this week for stelara drug levels and waiting on results. I think with addition of sulfasalazine and optimization of stelara levels both my knee swelling and Crohn's have a good chance of being well managed. Right now I have no GI symptoms, and mild right knee swelling. Hopefully I can come off the oral prednisone soon, as I have already been on low dose prednisone for 9 months. I am accelerating my steroid taper, since I just started sulfasalazine. Any advice on the sulfasalazine dose and prednisone taper? I really want to come off the pred asap! I am also having a colonoscopy to determine whether there is any residual inflammation in about 1-2 months.
Yesterday, 01:10 AM   #96
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What dose of Sulfasalazine are you going up to? They usually do 2000-3000 mg daily, if I remember correctly. My daughter was on 2000 mg as a 12-13 year old.

My daughters did not have side effects from Sulfasalazine, besides some nausea, which I think went away. Didn't work for them though. MTX worked much better, to be honest.

It takes a while for Sulfasalazine to kick in, so I wouldn't taper too soon or too quickly.

Good luck! Hope this works and gets rid of that stubborn knee swelling.
Yesterday, 01:13 AM   #97
Senior Member
Join Date: May 2017
I am thinking of going up to 1000-2000mg daily. I am also taking 1mg folate concurrently. Methotrexate will probably work better, but I think sulfasalazine is a safer medication. I would rather start with sulfasalazine and see how it works.
Yesterday, 01:26 AM   #98
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That is a pretty low dose of Sulfasalazine. I've never heard of giving only 1000 mg. Is that really what your doctor recommended? Who recommended that, the rheumatologist or the GI?

My 85 lb 12 year old was on 2000 mg. When she retried SSZ when she was older (maybe 17 or so), she was put on 3000 mg, with high dose Remicade. At that dose she had some nausea, so we backed down to 2500 mg. No side effects at 2500 mg.

My husband was recently prescribed SSZ too, and he will be starting at 500 mg and going up to 3000 mg.

I understand wanting to try the "milder" or "safer" option. But you have been doing that for months - first trying to avoid a biologic. Then choosing Stelara when anti-TNFs may have been more appropriate, given their better track record with arthritis. Then trying knee injections and Prednisone since Stelara did not work for your knees, while trying to avoid SSZ and MTX.

Clearly, you have some pretty stubborn knee inflammation which is causing swelling. It has been months and it is still not better. I would treat it aggressively and get it under control. Once it is under control and you have been stable for a while (they say usually 6 months at the very least), you can back down on medications.

Most doctors agree now that steroids, even at low doses, are the most unsafe drug. They lead to all sorts of nasty side effects - Cushing's, weight gain, glaucoma, diabetes, adrenal insufficiency, osteoporosis, infection risk. You have been on them for months.

Why not give SSZ the best chance of working so you can actually get off steroids (which are really the most unsafe of all these drugs)?

I really do understand you want to use as little medication as possible but that approach doesn't seem to be working. And you don't want to deal with additional knee damage because of long-term inflammation.

Sending hugs. I hope it works for you!!
Yesterday, 01:28 AM   #99
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Sulfasalazine dosing:

Ulcerative Colitis

Mild to moderate cases, adjunctive therapy in severe cases, and prolongation of remission
3-4 g/day PO divided TID after meals; may start 1-2 g qDay

Rheumatoid Arthritis
Inadequate response or intolerance to salicylates or other NSAIDs
Enteric coated: 2-3 g/day PO divided TID after meals; may start 0.5-1 g qDay

Crohn Disease (Off-label)
3-6 g/day PO divided TID after meals

Take after meals
Administer in equally divided doses
Yesterday, 07:39 AM   #100
my little penguin
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Join Date: Apr 2012

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Completely agree about pred being the least safe of all the drugs
Ds didn’t have much choice- started Stelara in August
Was on Steriods since April
Finally weaned in December
Just saw Endocrinology due to steriods
His bone density is down due to steriods
His adrenal function was tested and now needs more testing because it was so low to determine if it’s “awake enough” to handle things like illness or anesthesia.
Until the second test results are complete he will have to get “stress doses “ of steriods during any scopes due to the risks

Weaning quickly from pred can also cause a problem
We were told very slowl wean to try and get the adrenal gland to wake up
He weaned at 2 my every two weeks and still had issues

Also never went above 10 mg

So now he has joint swelling
An adrenal gland that is only slightly awake and bone density that needs to be increased

While on Stelara and methotrexate
Woth scopes on a month to check on GI tract

“Safer” isn’t necessarily better if it increases your exposure to steriods

Our rheumo wouldn’t bother with sulfanazine said the amount of success they had with it was really low compared to the side effects

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