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07-23-2017, 10:08 PM   #1
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Knee Swelling

Anyone had any luck with Stelara for knee swelling? Long story short, my battle with Crohn's began with unexplained knee swelling. 3 years later I have been diagnosed with crohn's. I am currently on low dose prednisone, but am hoping that Stelara would help with my knee swelling. Any thoughts would be appreciated.
07-23-2017, 11:03 PM   #2
Maya142
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Stelara is approved for psoriatic arthritis, and it should also work for Crohn's related arthritis.

CCFA has good info about the various types of arthritis associated with IBD. With peripheral joints (such as knees, ankles, elbows etc.), generally the arthritis flares when the Crohn's flares. So if you take care of the Crohn's, the arthritis should follow.

With axial arthritis (when the spine and SI joints are involved), it's a little trickier. It often flares independently of the Crohn's and so you might have to add extra medications to control that.

I would expect Stelara to control your gut inflammation AND joint inflammation. The other options which are approved for many types of arthritis and IBD are Humira and Remicade. Those are generally first-line, Stelara is newer, so it's often used later if Humira/Remicade fail.

Types of Arthritis
• Peripheral Arthritis. Peripheral arthritis usually affects the large joints of the arms and legs, including the elbows, wrists, knees, and ankles. The discomfort may be “migratory,” moving from one joint to another. If left untreated, the pain may last from a few days to several weeks. Peripheral arthritis tends to be more common among people who have ulcerative colitis or Crohn’s disease of the colon. The level of inflammation in the joints generally mirrors the extent of inflammation in the colon. Although no specific test can make an absolute diagnosis, various diagnostic methods—including analysis of joint fluid, blood tests, and X-rays—are used to rule out other causes of joint pain. Fortunately, IBD-related peripheral arthritis usually does not cause any lasting damage and treatment of the underlying IBD typically results in improvement in the joint discomfort.
http://www.crohnscolitisfoundation.o...plications.pdf

While you are waiting for Stelara, heat and ice might help.

Good luck!
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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
07-25-2017, 12:45 AM   #3
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thank you maya142. You have been very helpful throughout all your posts. I truly appreciate your input and apparent knowledge.
07-25-2017, 07:51 AM   #4
mtseeg
 
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You may find this article interesting about ustekinumab (Stelara). Looks like it shows promise for Crohn's in general.

https://health.ucsd.edu/news/release...ng-crohns.aspx

"A high percentage of the patients in the study who had not responded to conventional therapies were in clinical remission after only a single dose of intravenous ustekinumab,” said William J. Sandborn, MD, professor of medicine at UC San Diego School of Medicine"
07-25-2017, 05:54 PM   #5
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I hope this works!
07-28-2017, 12:49 AM   #6
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After my initial infusion of Stelara I feel completely fine. Wondering if there was actually any medication in the infusion haha. So any improvement in joint swelling might take up to 6 months???
08-10-2017, 07:21 PM   #7
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I appreciate your help so far! Definitely helps to have this community throughout this process!
I am two weeks post initial stelara infusion. Currently on entocort 6mg, pred 5mg, and lialda 2.4mg. I still have knee swelling. I am trying to come off the Prednisone but the knee swelling gets worse. One doctor recommended to get a knee injections whereas another recommended to just continue low dose Prednisone until the stelara starts working. What are your thoughts? I am worried about getting the knee injection because there are risks and I am worried that I might become dependent on the injections.

08-10-2017, 10:26 PM   #8
Maya142
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My kiddos have had many injections. No issues.

My younger daughter has very severe Ankylosing Spondylitis. She has required repeated SI joint injections - her SI joints are her worst joints. She has both inflammation and joint damage in her SI joints, which means she really does need injections regularly.

But with other joints - it's just been one or two injections over 7-8 years. Her knee for example - she had one injection at diagnosis (she was 12) and another 8 years later (at 20).

Same with my older daughter - she's had 2 sets of knee injections in 8 years.

We have had no side effects with steroids injections. In fact, they are generally considered safer than oral steroids for children with juvenile idiopathic arthritis and are a first-line treatment.

The only thing is soreness after the shot - with some joints it's worse than others for my girls. For example, both my girls found knee injections easy to handle, while hip injections take them longer to recover from. Knee injections mean sore knees for two days -- we use lots of ice and they rest as much as possible.

My daughters also both say knee injections barely hurt at all - in comparison to SI joint or hip injections which are much deeper joints.

My girls have also done Prednisone over the years. Low dose does not always work for them. My younger daughter needs at least 15 mg of Prednisone before her joints respond. My older one, who has less severe arthritis, does get better with 10 mg, but any lower and it's not that useful for her.

My younger daughter has developed MANY steroid related side effects from oral steroids - Cushing's Syndrome and now Adrenal Insufficiency. She has bad AS and has been on them a lot, but the side effects have been awful and now I wish we had been even more careful than we were.
08-11-2017, 09:33 PM   #9
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Thank you Maya for the advice. I will probably settle for a knee injection if the stelara doesn't work soon. Reason why I am so hesitant is because I developed a meniscal tear a few months after a knee injection. However that was likely due to long standing knee inflammation before I was diagnosed and was treated systemically. Also it only worked for 2 weeks and I had a large rebound swelling in that knee. Again, this was all prior to diagnosis and prior to systemic treatment. The good news is that I have been able to keep the Prednisone down to around 5mg to 7.5mg daily.

08-11-2017, 09:43 PM   #10
Maya142
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We have been lucky and not had any issues so far with joint injections, except soreness after. I would also wonder if inflammation led to your tear - my daughter had a degenerative labral tear in her hip long before we did ANY steroid injections there.

Stelara takes a long time to work - we were told 6 months. Hopefully it will kick in soon, but you may have to be patient (which is so hard when you're in pain!!).

We have never had steroid shots that have just lasted weeks - several months at least is normal for my girls. Generally, they are done with ultrasound guidance (for elbow, hip etc.), but knee shots are so easy that they're done without any guidance.

We find they are a good "bandaid" and calm things down while we wait for meds to work.

The other thing you can ask about is Voltaren gel. It is an NSAID, but it's topical so less is absorbed by the gut. You'd have to clear it with your GI, but it helps my girls a lot. A rheumatologist or even primary care doc can prescribe it.

They also use knee braces for extra support when they have knee pain - just the OTC kind.
08-12-2017, 10:15 AM   #11
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Forgive me for coming into this conversation late. Have you asked your doctor about peripheral neuropathy being the cause of the knee swelling?
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-12-2017, 04:01 PM   #12
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It's not peripheral neuropathy. No symptoms or signs of neuropathy. Also no reason for me to have neuropathy.

09-10-2017, 09:19 PM   #13
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Going to get a knee aspiration and steroid injection tomorrow. haha. Was hoping to avoid this but I guess its the best route. Lots of swelling, and needing to increase my prednisone dosage. If I get the knee swelling under control I can probably come off the prednisone.
09-10-2017, 09:35 PM   #14
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Wishing the best for you.
09-10-2017, 10:31 PM   #15
Maya142
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Good luck! We've had lots of success with steroid shots/aspiration.
09-12-2017, 12:48 AM   #16
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Good luck! We've had lots of success with steroid shots/aspiration.
Got it done today. My knee swelled to the size of a balloon, so no other option. I don't know why, but my experience with knee aspirations has been rather painful. It was pretty painful today, almost as if they are jamming a needle into my nerve. Interested to see what your experiences are.
09-12-2017, 12:59 AM   #17
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My daughters were pretty young when they both had their knee aspirations. My younger one was 12, the older one was either 14 or 15 - I can't remember now.

Knee aspirations do hurt more than just a simple steroid shot into the joint.

This April, my younger daughter got a steroid shot in her knee (no aspiration) and was shocked at how little it hurt!

She says she remembers it hurting a lot more the first time and her rheumatologist said it was because aspirations do generally hurt more and the first shot was done with an aspiration.

Both my girls handled the aspirations well - they didn't need any sedation, there were no tears and they were ok within 5 minutes of the aspiration.

M (my younger one) has had lots of other joint injections - SI joints (5x), hip joint (3x), elbow and heel and even her jaw. She has very aggressive arthritis (Ankylosing Spondylitis), and we are still working on controlling it.

Our instructions were walk as little as possible for a day or two after the shot/aspiration, so the steroid stays in the joint. We also used a lot of ice. No pain medication at all needed.

Both my daughters have had their knees aspirated once - they haven't (so far) needed anymore because we put them on biologics + immunomodulators,

Good luck!
09-23-2017, 04:34 PM   #18
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Is it pretty common to be on biologic PLUS immunomodulators. Right now I am only on a biologic (stelara)
09-23-2017, 05:32 PM   #19
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Ds is on a biologics and immunosuppressants
Methotrexate was added to help with his arthritis when he developed arthritis while on humira

He is still on mtx when he started Stelara
Added Celebrex as well
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09-23-2017, 05:40 PM   #20
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It depends. Some people manage with just immunomodulators, some people are fine on just biologics and some need both.

A combination is used often in people with inflammatory arthritis. It's usually Methotrexate + a biologic. My older daughter is on MTX and a biologic. My younger one is on a different immunomodulator - Arava - because she has trouble tolerating MTX. Arava does not work for Crohn's though, just for arthritis.

For spondyloarthritis, axial (spinal) arthritis responds best to biologics. For peripheral arthritis, immunomodulators are used first usually - MTX, Sulfasalazine, Arava etc. Then biologics.

Both my girls are also on NSAIDs. My younger daughter has much more severe Ankylosing Spondylitis than she has Crohn's, so her GI is ok with her being on an NSAID.
10-05-2017, 09:55 PM   #21
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I received steroid injections in both knees. About 3weeks later I am feeling that one of my knees is starting to swell again. Shouldn't the steroid injection last much longer than that? Any advice? I am on stelara and low dose prednisone (7.5mg). The good news is that my GI symptoms are controlled, but this knee swelling is becoming very stubborn.
10-05-2017, 10:33 PM   #22
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Remind me what kind of arthritis you have? A knee injection should last longer than 3 weeks.

I'm just wondering if it's possible you have osteoarthritis in your knees, in which case a steroid injection may not work as well (versus if it was inflammatory arthritis). Did you have MRIs or x-rays done of your knees?

What other joints are involved? What type of arthritis does your rheumatologist think you have?

How long have you been on Stelara?
10-05-2017, 11:40 PM   #23
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I started having knee swelling before being diagnosed with crohn's. However, I had knee swelling for over a year, at which point I developed a meniscus tear and needed surgery(meniscectomy and synovectomy). I am wondering too maybe there is something else going on other than just inflammation but I doubt it. I don't really have any pain, just swelling. the knee has been swollen for so long that there could be quite a bit of degenerative changes going on. I got bilateral knee injections. My right knee is good, with no swelling. My left knee (with previous surgery) seems to be flaring again. Don't know what to do.
10-05-2017, 11:58 PM   #24
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Do you have other symptoms at all? Stiffness in the morning?

I guess I'm just wondering if this is partially osteoarthritis, because if it is, then steroids won't do much for the swelling and neither will Stelara.

My younger daughter has osteoarthritis in addition to inflammatory arthritis in her knees. I was shocked when her rheumatologist mentioned osteo - she is only 20!! But her rheumatologist said it's not uncommon to have osteoarthritis even in your 20s, and since she has had inflammatory arthritis symptoms since she was 9 years old, that increases her risk for osteoarthritis.

Her knees tend to swell in the evening - activity makes the pain and swelling worse. Unfortunately, there is not a whole lot they can do for osteoarthritis - they can do injections with lubricating fluid. PT and Tylenol and exercise can help if there is pain. As a last resort, a replacement is done.

I would talk to your rheumatologist - it sounds like you definitely have some osteoarthritis if they are seeing degenerative changes. Ask him or her what you should expect from Stelara and if your knee swelling is related to inflammatory arthritis associated with Crohn's.

Generally, when peripheral joints like the knees are involved, they get better once the Crohn's is under control. Since your Crohn's is responding well to Stelara, that also makes me suspicious about this not being totally inflammatory.

An MRI would tell you if there is active inflammation in your knees or just degenerative changes (damage) from wear and tear. If there is active inflammation, then I'd ask your rheumatologist how long it will take for Stelara to kick in. You may just need to be patient (easier said than done, I know) or you may need a dose adjustment, or you may need a totally different kind of drug - an anti-TNF for example.

You also might want to consider adding something like Methotrexate - it works very well for peripheral joints like knees.

Good luck!
10-06-2017, 12:08 AM   #25
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Thank you for your reply. I had a meniscectomy and synovectomy done in my left knee a year and a half ago. At that point they did not note any degenerative changes (about a year and a half ago). Of course some degenerative changes could have developed over the last year or two. However, they just saw a lot of synovium from the chronic synovitis. I don't have any pain associated with this. My rheumatologist really wants to start me on anti-tnf, but I am only week 12 on stelara. Is it safe to do another steroid injection? It has only been like 3 weeks since injection on my left knee. My right knee is doing fantastic after injection. Before swtiching to an anti-tnf I think it might be wise to do an MRE and/or colonoscopy do actually determine if the stelara is healing my bowel inflammation (although symptomatically I feel fantastic).
10-13-2017, 06:34 PM   #26
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It seems like the steroid injections only last about 1 month and then I start to notice gradual swelling of the knees. My rheumatologist recommended to switch to anti-TNFs. The IBD doctor says that if the stelara doesn't work in the next month we will probably have to switch to another med. However, the lab work on Stelara came out good (anemia resolved, normal inflammatory markers, iron normalized). What do you all think? This knee swelling is so stubborn. I can only get so many knee injections, since they can also damage the knee. I am thinking of doing the knee injections for another couple months, and if it doesn't resolve I will probably switch.
10-13-2017, 06:40 PM   #27
Maya142
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We were told at maximum, 3 injections in one year. It's not something you can repeat monthly.

If it were my kiddo, and you didn't have knee pain in addition to the knee swelling, then I'd wait another month or two to see if Stelara is working. It sounds like it's definitely helping your IBD if labwork and anemia have normalized and you don't want to go through biologics too quickly because there aren't that many.

If your knees remain swollen in a month or two, then I'd try an anti-TNF.
10-13-2017, 06:52 PM   #28
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Thank you Maya! Yes, that is my plan. It is the 3rd month after starting stelara. I am very happy that my GI symptoms are controlled, with good lab work. I am planning to wait this out another 1-2 months, and if my knees are still swollen, I will likely consider anti-TNFs or adding another medication. I really hope the stelara works, since it is very convenient dosing and I have had NO side effects.
10-13-2017, 06:55 PM   #29
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You could consider adding something like Methotrexate or even Sulfasalazine. But those typically have more side effects (though they are usually mild) than an anti-TNF.

Both my girls need an immunomodulator and a biologic to control their arthritis.
10-13-2017, 07:15 PM   #30
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That is a nice thought Maya. I will have to think about that. Which would you recommend?...methotrexate or sulfasalazine? Sulfasalazine is probaby less side effects?
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