Stelara Vs. Sulfasalazine

[newdiagnosis]

Hi All. Recently diagnosed with Crohn's but probably had it for the past 5 years at least. My only area of inflammation is in a 2cm segment of the terminal ileum, around the sphincter. I have been on Lialda and entocort, but my doctor recommends either switching to Sulfasalazine or Stelara. My GI symptoms are under control, but my main problem is the knee swelling.

Both sulfasalazine and stelara are beneficial for knee swelling. Which would you all choose? Which is the medicaiton with worse side effects? Based on my reserach sulfasalazine seems like it has more side effects, but maybe that is because it has been out for so long so there are more documented side effects? Your thoughts would be much appreciated.

 

[eleanor_rigby]

Sulfasalazine is the weaker drug and would be considered by many not to be suitable in Crohn's for this reason. However, if that drug is able to put you into stable remission, that would be a more preferable drug to go for.

 

[newdiagnosis]

Thank you for your reply. Any other thoughts. Have to make my decision soon. Sulfasalazine vs. Stelara. Really worried about the side effects from both.

 

[Maya142]

My kiddo has been on Sulfasalazine. They are not really comparable drugs - Sulfasalazine is a pretty weak drug. Most doctors believe it doesn't really work for Crohn's - it's not really very different from Lialda. The reason it doesn't work is that it only works on the first layer of the intestine, while Crohn's is transmural - it affects all layers.

It is a pill - my daughter didn't really have side effects. Nausea is possible and so are headaches. My daughter had minor nausea but I don't remember it being a big deal. But it also did nothing for her arthritis or Crohn's.

Stelara, on the other hand, is a biologic. It is an immunosuppressant - targets specific cytokines - IL-12 and IL-23. Generally biologics work very well for the disease and are being used more and more early in the disease to prevent complications later. Stelara is the newest one - I am not sure why they'd go straight to that, usually doctors start with Remicade/Humira. That said, Stelara works well for Crohn's, and generally people don't complain of too many side effects with them.

Biologics are also very effective for arthritis - they have been life-changing for my daughter. She has been on biologics for 7 years or so, without side effects. She hasn't been on Stelara but she has been on Remicade/Humira/Cimzia and Entyvio (so all the other biologics for Crohn's).

The one big thing is an increased risk of infections, so you just have to watch carefully and make sure you get treated quickly if you do have one.

Stelara is given by injection after an IV loading dose.

 

[newdiagnosis]

Thank you for your reply Maya. The reason they are starting with Stelara is that it is the biologic with the least side effects. So you think it is not worth trying Sulfasalazine?

 

[Maya142]

For my daughter it wasn't. But honestly, it is really different with every person, so I can't say. It's really hit or miss - for some people, it does work well.

Are you seeing a rheumatologist for the knee pain and swelling? It's really important to see one so you can be monitored if you do have arthritis (and it sounds like you do). The type of arthritis associated with Crohn's is called spondyloarthritis (SpA) and it can cause damage to the joints, so it's important to treat it aggressively. Both my kids and my husband have SpA.

 

[newdiagnosis]

Yes, I am seeing a rheumatologist. She thinks that sulfasalazine might work, but the crohn's expert thinks it won't and that I should go on Stelara. Tough choice.

 

[Maya142]

The intermediate option would be something like Methotrexate - an immunomodulator. That would a step above Sulfasalazine and a step below biologics.

That said, my daughters have had many more side effects with MTX than with biologics. But for some people, it works very well without side effects. It can be given orally or by injection.

My older daughter still takes it with manageable side effects - fatigue and nausea. There are ways to reduce the side effects - folic acid helps prevent them and Zofran can treat the nausea.

 

[newdiagnosis]

Methotrexate has a lot more side effects than sulfasalazine and stelara. What do you think about trying sulfasalazine for a month, and then switching to stelara if it doesn't work. Although based on the side effect profile, sulfasalazine seems to have a lot of side effects too, even more than stelara.

 

[Maya142]

Honestly, this is something you need to decide with your doctors. It's definitely ok to try Sulfasalazine but it's also ok to go straight to Stelara.

Sulfasalazine tends to take longer than 4 weeks to work - I think it is 6-8 weeks, but check with your rheumatologist, because it has been awhile and I'm not sure I remember correctly.

With my kids, I wish we had started them on biologics earlier. Both have some joint damage - both girls have SI joint damage and hip damage from untreated inflammation. The younger one also has knee damage. I wish we had treated them more aggressively in the beginning.

 

[newdiagnosis]

Thank you for your reply. This is really a personal choice, as my doctor's have explained to me. I already have knee damage, as I had a meniscal tear from long standing knee swelling. The only thing that scares me about biologics is the chance of fatal infections.

 

[Maya142]

My kiddos have been through middle school, high school and now college without getting anything too bad. They are tested for TB yearly and whenever they get a "regular infection" - throat, sinus, UTI etc. - they are treated immediately with antibiotics.

Honestly, doctors are very careful when you are on biologics. They will do blood work regularly and hold the biologic when you have an active infection.

Good luck with whatever you choose.

 

[my little penguin]

Plus is rare opportunistic infections that are an issue
So if you say have the flu your more likely to get pneumonia from the flu as a tag along infection
You are not more likely to get a cold or cough or virus in general
Actually the GI doesn't worry about viruses while on biologics just
Bacterial infections
They watch carefully let you take abx and then restart the biologics
Ds has both Crohns and arthritis (JSpA)
He has been on biologics for six years
We were told sulfanazine was not worth it to try for ds arthritis

But again every one is different
We did try pentasa (5-asa ) at the beginning for 30 days
Ds basically got sicker and miserable during those 30 days
He was 7 at the time and we didn't know 5-asa were not approved as monotherapy for Crohns


Good luck
The key is finding a drug that actyworks for you
Trying to avoid a drug due to potential side effects
May cause you to avoid the one drug that works for your body

Some drugs just don't work (even biologics depending on the type )
And person

We go with what works now
And hope to keep it working as long as possible