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
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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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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
01-17-2018, 12:56 AM   #95
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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.
01-17-2018, 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.
01-17-2018, 01:13 AM   #97
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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.
01-17-2018, 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!!
01-17-2018, 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
01-17-2018, 07:39 AM   #100
my little penguin
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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
01-20-2018, 07:04 AM   #101
Join Date: Oct 2017
Right now im on 10 mg prednisone and about to take my 3rd humira shot. Not Sure if the humira is working yet but the dr told me to start weaning off prednisone by either 1 mg a day for a month or just going down to 5 mg right away. Hopefully humira starts working if i cut back the prednisone my knees might swell. Im going to get a second rheumatologist opinion pretty soon to see what other treatment options going forward or if the humira doesnt work i might try something else.
01-20-2018, 10:01 AM   #102
my little penguin
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I would check on the pred wean dman2000
A quick wean is reducing 5 mg every 7 days
If your on 10mg and you reduce 1 mg a day you would be reducing by 7 mg a week
Ds needed a slower wean
So he did reduction from 10 mg
By 2ng every 2 weeks
Took two months to get off it though

Humira takes 3-5 months to work
01-24-2018, 12:21 AM   #103
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Join Date: May 2017
I agree with all your comments. I might have made a mistake by going on stelara instead of anti-TNF, which has caused me to be on prednisone for a long time. Hindsight is always 20/20, and anti-TNFs are also not guaranteed to control both knees and GI symptoms concurrently. However, I do think Stelara is safer than anti-TNF, and if I can make stelara work long term I think I chose a safer route than being on anti-TNF. Stelara is also WAY more convenient dosing schedule. I can always switch to anti-TNF in the future if Stelara proves not to work. I got my stelara drug trough level and it was 3.0, below the 4.5 that is recommended. They are trying to increase the frequency of my Stelara injections. So far I have not noticed any side effects of prednisone or Stelara. I have currently weaned down to 5mg prednisone, my doctor is likely increasing the frequency of my Stelara injections, and I am only on 1000mg of sulfasalazine (I will increase to 2000mg daily soon). I only have very minimal right knee swelling and NO gastrointestinal symptoms since starting treatment. Many people are on low doses of prednisone for years with no side effects. All the side effects you talk about are above 10mg. I have only had to go above 10mg for brief periods of time.

In regards to scopes and long term prednisone, I have been on low dose prednisone for around 9 months. I have a scope coming up in early march. If I discontinue prednisone before then, do I have to worry about stress doses of prednisone prior to anesthesia? I expect to discontinue prednisone within the next few weeks, as I increase the dose of sulfasalazine. So far things are looking really positive. In fact, I almost forget that I have knee swelling.
01-24-2018, 12:41 AM   #104
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That is not true actually - my daughter is seeing an endocrinologist specifically because she developed Cushing's syndrome and adrenal insufficiency from long-term steroid use. She was mostly on 15 mg of Pred or under - usually under 10 mg.

She did do some courses starting at 20-25 mg and tapered down, but MOST of the time she was on steroids, she was on less than 10 mg.

But she was on it for 6 years on and off. Probably 6 months a year on steroids.

Eventually she developed Cushing's - the big round puffy face, the stretch marks, weight gain (30 lbs) that still has not gone away, the "buffalo hump." As you can imagine, as a young adult, she was very distressed by all this.

We were sent to an endocrinologist who told us that rheumatologists and GIs use steroids far to liberally. And also, to an endocrinologist, low dose Pred would be between 3-5 mg.

10 mg is considered a high dose. The endo ranted for quite a while about GIs and rheumatologists who get their patients into this position from using steroids too easily.

My daughter also developed adrenal insufficiency from being on steroids. Her adrenal glands are essentially asleep. She has to be given replacement hydrocortisone and could go into adrenal crisis with any sort of stressor (a cold, anesthesia, bad diarrhea etc.).

Adrenal crisis can be fatal. Yes, fatal.

Believe me, these are not side effects you want to deal with. I am just cautioning you because like you, we were told that 10 mg is a low dose. She was on it for far too long. She has very aggressive AS, which affects her SI joints, lumbar spine, ankles, knees, hips, feet, elbows, fingers, jaw and wrists. I'm sure I have forgotten a few joints.

We were trying to prevent joint damage and perhaps the years on steroids did help prevent some. But she ended up with so many side effects - besides adrenal insufficiency and Cushing's, also low bone density.

I hope the increased frequency of Stelara will help you. Hopefully that plus the Sulfasalazine will get your knee inflammation under control.

In terms of stress doses of steroids, you need to see an endocrinologist who will do testing to see what your ACTH and cortisol levels are.

In terms of anti-TNFs, they are not a bad choice if you have to go there. Of course, there is guarantee, but since they have been around a lot longer, there are MANY studies confirming that they work for both Crohn's and for joint inflammation. They are approved for various types of inflammatory arthritis - Ankylosing Spondylitis/Spondyloarthritis, Psoriatic arthritis, RA. So hopefully they would work for both your issues. They do for many patients with IBD + inflammatory arthritis - they are generally the first choice.

The dosing schedule is more frequent, but it's a 10 second shot at home if you are on Humira/Cimzia or Simponi. If you're on Remicade, then yes, infusions are definitely more inconvenient.

But I hope they are able to get more frequent Stelara covered, since it is definitely helping you. Just know that you do have options that are not steroids.
01-24-2018, 12:50 AM   #105
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Join Date: May 2017
I am currently on 5mg prednisone and doing fine. If I stop prednisone completely, do I still need to see an endocrinologist?
01-24-2018, 12:59 AM   #106
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I would check with your doctor (whichever one has been prescribing the steroids) and see what he/she thinks.

Generally, the blood work for adrenal insufficiency is done 4-6 weeks after being OFF steroids. In that time, the adrenal glands should have kicked back in. In my daughter's case, they did not. When they tested her cortisol, it was very, very low and her ACTH was undetectable. We were sent straight to the ER so she could be given IV hydrocortisone.

Since you have been on steroids a long time, I think an endocrinologist appt. does make sense. But I am a mom and not doctor!

If you stop steroids and have any of the adrenal insufficiency syndromes, I would tell your doctor right away.

What are the symptoms of adrenal insufficiency and adrenal crisis?

Adrenal Insufficiency

The most common symptoms of adrenal insufficiency are

chronic, or long lasting, fatigue
muscle weakness
loss of appetite
weight loss
abdominal pain
Other symptoms of adrenal insufficiency can include

low blood pressure that drops further when a person stands up, causing dizziness or fainting
irritability and depression
craving salty foods
hypoglycemia, or low blood sugar
Adrenal Crisis

Sudden, severe worsening of adrenal insufficiency symptoms is called adrenal crisis. If the person has Addison’s disease, this worsening can also be called an Addisonian crisis. In most cases, symptoms of adrenal insufficiency become serious enough that people seek medical treatment before an adrenal crisis occurs. However, sometimes symptoms appear for the first time during an adrenal crisis.

Symptoms of adrenal crisis include

sudden, severe pain in the lower back, abdomen, or legs
severe vomiting and diarrhea
low blood pressure
loss of consciousness
Good luck!
01-24-2018, 06:21 AM   #107
my little penguin
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Ds was on steriods from April till dec
Never went above 10 mg
Was mostly below that .
His cortisol level was at the bare minimum of the normal range
Endo said that makes them nervous
He will now have acth stimulation testing in a week or two
He will have to be stress doses woth steriods for the scope since results will not be back in time

Due to the low cortisol levels we were told steriods are not really an option anymore
Once off of steroids- he is having increasing GI and joint symptoms.
Insurance is fighting us in Stelara every 4 weeks so he is currently at every 8 weeks
And doing poorly.

Definitely schedule an Endo visit
01-26-2018, 12:02 AM   #108
Senior Member
Join Date: May 2017
Doesn't seem like my doc thinks that an endo visit is necessary. I am down to 2.5mg of prednisone and my knee swelling is basically gone. I am on 1500mg of sulfasalazine, and planning to go up to around 2000mg. My scope is in around 5 weeks and I am planning to stop prednisone in about 1 week. Worst case scenario I might just take a morning dose of 5mg prednisone before the scope just in case, but I expect to be off prednisone within the next week. I am finally starting to see great progress on this disease that I've been battling for the past few years.
01-26-2018, 06:08 AM   #109
my little penguin
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Glad the swelling is going down
You really can’t give yourself a “stress dose” of steriods
They calculate it based on body weight
Somethimes it’s given before ,during and after the scope
So again not something you can do at home .
It’s a different type of steroid not prednisone.
Second per the Endo there is really no way to know if your adrenal gland is sluggish without a blood test
It’s not as simple as looking at the person

FWIW Ds GI or rheumo did not suggest he needed to see an Endo at all
His allergist referred Ds to Endo
And even the Endo was surprised after Ds bloodwork came back as low as it did
Doc called the same day with a plan
01-30-2018, 10:25 PM   #110
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Join Date: May 2017
Right. But you also have to realize that I am not the first person in this situation. The rheumatologist and crohn's doctor deal with this situation all the time. It's not the first time someone goes in for a scope after stopping prednisone. lol. They have probably seen dozens and hundreds of patients in this situation.
01-30-2018, 10:37 PM   #111
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You do have to trust your doctors - I wouldn't "give yourself a stress dose."

But based on what we have heard from multiple endocrinologists (we have seen 4 for my daughter), GIs and rheumatologists grossly overuse steroids and taper them much too quickly.

And they are too slow to refer to endocrinology even after a patient has been on steroids for many months.

We actually only got referred because my daughter was so distressed that her steroid related side effects weren't going away (puffy face, weight gain).

She was diagnosed with Cushing's then and they told us they would monitor for adrenal insufficiency, in case her adrenal glands did not start functioning.

6 weeks later, after blood work that showed no detectable ACTH and very, very low cortisol, she was diagnosed with adrenal insufficiency.

Most patients with adrenal insufficiency do not know they have it till they go into adrenal crisis, which is prompted by some stress on the body - like sedation.

Adrenal crisis can be fatal.

That is why my little penguin was telling you that you need to see an endocrinologist to know for sure.
01-30-2018, 10:40 PM   #112
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Right. But you also have to realize that I am not the first person in this situation. The rheumatologist and crohn's doctor deal with this situation all the time. It's not the first time someone goes in for a scope after stopping prednisone. lol. They have probably seen dozens and hundreds of patients in this situation.
You are right - you are not the first person in this situation. And 99% of the time, it is probably fine and the person's adrenal glands have "woken up" and scopes go smoothly.

But if they have not woken up, then you could potentially get into very big trouble. That's all we are trying to say - that's what we have learned based on our kids' experiences.
01-31-2018, 11:44 PM   #113
Senior Member
Join Date: May 2017
I'll tell you one thing, it feels so good to have finally conquered the knee swelling. It was an ongoing issue for the past 4 years. For around 3 years I had unexplained knee swelling, and for the past year I have been actively treating it. Now 3 days off prednisone and only on 1500mg sulfasalazine. Will start on 2000mg of sulfasalazine tomorrow. Maybe if I started sulfasalazine earlier i would have made faster progress? ...not sure, but I think it is the combination of the intesintal/mucosal healing from stelara, the steroid taper, and the recent addition of sulfasalazine. I'm glad I didn't switch over to anti-TNF. I was soo close to stopping stelara and starting anti-TNF.

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