Tacrolimus experiences

[Octobergirl]

I did some searching and it doesn’t look like many people are on this, but I thought I’d check anyway. Can anyone share their experiences with this drug? Most importantly how long did it take to kick in and did you have high potassium levels on it?

I’m actually on Entyvio which is working for my gut but my rheumatologist is trying it for my arthritis since Imuran as Methotrexate weren’t helping much.

Also, does anyone know why this is considered a bridge drug with IBD even though it’s used life long for transplant patients?

 

[Maya142]

I'm going to tag crohnsinct since her daughter is on it.

I believe it is considered a bridge because it is very hard on the kidneys and can increase the risk of cancer when used in the long-term.

Entyvio has actually been known to make spondyloarthritis flare sometimes - in my daughter's case it did. She was put on Entyvio for her Crohn's and a different biologic for her arthritis. Combining biologics is risky in terms of infections, but in her case, it was very necessary. She has severe Ankylosing Spondylitis (AS) and anti-TNFs (which treat both the IBD and the AS, as I'm sure you know) didn't work for her AS. So we ended up using two biologics - one for the AS and one for the Crohn's.

Which joints does your arthritis affect? If it affects your spine or SI joints, then meds like MTX and Imuran typically don't work. I actually haven't really heard of Tacro being used for arthritis ever...generally Methotrexate is used. Imuran used to be used for inflammatory arthritis, but it isn't used as much anymore, simply because there are more effective and safer drugs.

In terms of immunomodulators, my daughter has been on MTX, Arava, Sulfasalazine, Plaquenil, Imuran and Otezla. Cellcept was mentioned as a last resort, but Tacro has never ever been brought up...despite the fact that she's failed 8 biologics and is due to have joint replacements at 22 years old.

 

[Octobergirl]

I'm going to tag crohnsinct since her daughter is on it.



I believe it is considered a bridge because it is very hard on the kidneys and can increase the risk of cancer when used in the long-term.



Entyvio has actually been known to make spondyloarthritis flare sometimes - in my daughter's case it did. She was put on Entyvio for her Crohn's and a different biologic for her arthritis. Combining biologics is risky in terms of infections, but in her case, it was very necessary. She has severe Ankylosing Spondylitis (AS) and anti-TNFs (which treat both the IBD and the AS, as I'm sure you know) didn't work for her AS. So we ended up using two biologics - one for the AS and one for the Crohn's.



Which joints does your arthritis affect? If it affects your spine or SI joints, then meds like MTX and Imuran typically don't work. I actually haven't really heard of Tacro being used for arthritis ever...generally Methotrexate is used. Imuran used to be used for inflammatory arthritis, but it isn't used as much anymore, simply because there are more effective and safer drugs.



In terms of immunomodulators, my daughter has been on MTX, Arava, Sulfasalazine, Plaquenil, Imuran and Otezla. Cellcept was mentioned as a last resort, but Tacro has never ever been brought up...despite the fact that she's failed 8 biologics and is due to have joint replacements at 22 years old.

Thanks for your reply. My GI tried to add Humira to my Entyvio but my insurance rejected it twice stating the risk of infection was too great.

I’m kind of a difficult case because I really don’t want to get off Entyvio since it’s the only drug that has worked for my bowels long term, so my rheumatologist is willing to try and work around Entyvio. I was on 25 mg of MTX (subcutaneous) but my levels were low so I must’ve been metabolizing it too fast, and my rheumatologist felt she would have to prescribe too high of a dose to get in therapeutic levels.

I also have iritis, so perhaps that was taken into consideration when prescribing it. It was between that and Cyclosporine, and she said Tacrolimus was less harsh on one if the organs, I want to say kidneys but I’m not 100%. She found a study where a woman with Crohn’s wasn’t responding to or had trouble with biologics and was put on Tacrolimus and it helped her Crohn’s. I don’t know if there are really many other immunomodulators left that help iritis and arthritis.

My arthritis currently affects my knee, ankle and feet. Does Cellcept help arthritis? Which two biologics is your daughter on?

 

[crohnsinct]

My daughter was recently switched over to Entyvio and because Entyvio takes so long to build to therapeutic levels she needed a bridge therapy. She has been on steroids too much over the last 18 months so he wanted her to try Tacro.

Taco is very hard on the kidneys and must be monitored very carefully. There are also a few other scary risks but a lot of the drugs IBD patients take have scary risks. It is just that with Tacro, the chances you get those scary things are a little higher.

They use Taco long term with transplant patients because they don't have choice. Also, believe it or not transplant patients are on a lower dose than an IBD patient needs to control their disease. I can't comment on rheumy patients.

Taco also has some nasty side effects.

Taco is considered an immune suppressing drug and not an immunomodulator.

My daughter may also need to combine biologics due to severe psoriasis. Her GI says that Entyvio is actually the easiest drug to combine with another biologic because it is the least systemic and most targeted of the therapies.

I hope this helps. Just curious, how long did it take Entyvio to kick in for you and do you have UC or Crohn's?

 

[Maya142]

Thanks for your reply. My GI tried to add Humira to my Entyvio but my insurance rejected it twice stating the risk of infection was too great.

I’m kind of a difficult case because I really don’t want to get off Entyvio since it’s the only drug that has worked for my bowels long term, so my rheumatologist is willing to try and work around Entyvio. I was on 25 mg of MTX (subcutaneous) but my levels were low so I must’ve been metabolizing it too fast, and my rheumatologist felt she would have to prescribe too high of a dose to get in therapeutic levels.

I also have iritis, so perhaps that was taken into consideration when prescribing it. It was between that and Cyclosporine, and she said Tacrolimus was less harsh on one if the organs, I want to say kidneys but I’m not 100%. She found a study where a woman with Crohn’s wasn’t responding to or had trouble with biologics and was put on Tacrolimus and it helped her Crohn’s. I don’t know if there are really many other immunomodulators left that help iritis and arthritis.

My arthritis currently affects my knee, ankle and feet. Does Cellcept help arthritis? Which two biologics is your daughter on?

Cellcept has been used in arthritis before - it's used very commonly for arthritis in Lupus, scleroderma and connective tissue diseases.

It's not typically prescribed for spondyloarthritis, but my daughter could not tolerate MTX, got too many infections with Imuran and initially had a hard time with Arava (though now she's fine on it), so we considered it. Never tried it though.

So one knee, one ankle and both feet? Do you know what kind of arthritis you have - what the official diagnosis is? Axial spondyloarthritis affects spine/SI joints and peripheral spondyloarthritis affects joints other than the spine - like ankles, knees, fingers, and even toes.

So if someone has both kinds, such as my younger daughter, who has MANY joints involved - both knees, both ankles, both hips, both elbows, fingers, both temporomandibular joints (TMJs), both SI joints and lumbar spine facet joints, they would be counted in the axial category.

So if you have any spinal involvement, your treatment has to be based on that, simply because immunomodulators like MTX do not work for axial arthritis. It sounds like you don't have axial arthritis though. So in that case, immunomodulators or DMARDs (as they'r called in the rheumatology world) should work. I'm really surprised they are jumping from MTX and Imuran to Tacro. Is it because your bowel is also flaring? Because it seems like overkill to prescribe Tacro for arthritis when there are other safer options that you haven't tried.

Arava, for one, is safer. That works well for peripheral arthritis for my younger daughter. Methotrexate is of course, safer, but in your case it seems like you'd need a really high dose for that to work. If you have psoriatic arthritis or peripheral spondyloarthritis, your doctor could make the case for Otezla. That also worked well for one of my daughters' peripheral joints.

There are others, but they're weaker - like Sulfasalazine or Plaquenil.

Currently my younger one is on an IL-17 inhibitor and an anti-TNF. IL-17 inhibitors are NOT recommended for people with Crohn's - they can actually cause Crohn's to flare, the same way Entyvio can make joints/arthritis flare. But at the time, she'd tried and failed all anti-TNFs for her AS, and she was developing more and more joint damage. Her Crohn's was in remission on an anti-TNF, so we decided to take the risk and tried Cosentyx.

Within 3 months, her Crohn's flared.

First we tried the IL-17 inhibitor with Entyvio and were able to get both approved - one for the AS and one for the Crohn's. However, Entyvio caused drug-induced Lupus and it made her arthritis flare, so she was taken off it. And put on an anti-TNF. The way we got it through insurance was by having one prescribed by her rheumatologist and one by her GI.

So now she's on both and her Crohn's was in remission (and may still be), but she's fighting recurrent CDiff. Her AS is severe, so while improved, it's definitely not in remission. She still has visible inflammation in many joints and has a high CRP, but her AS flares with every infection, so we'll see how well things are working once she has a fecal transplant for the CDiff.

In terms of iritis, my girls haven't had it, but my husband has. He also has AS and iritis and has mostly managed it with Pred drops and it hasn't recurred in quite a while, luckily.

I'm sure that did factor into the decision to put you on Tacro, because I don't think Arava has ever been tested in uveitis and I doubt any of the other options I mentioned earlier have been.

Are you on an NSAID? That might actually help with the arthritis. I know it is generally contraindicated in Crohn's, but typically if you have aggressive arthritis, doctors will allow it, as long your Crohn's is not in a severe flare. My daughter has been on NSAIDs for 10 years, since she has mild Crohn's and severe AS.

Something like Celebrex (which is easier on the stomach) might work for both the arthritis and iritis. My husband primarily managed his iritis with NSAIDs.

The other option would be steroid injections into those joints but that's more of a quick fix/band-aid than a long-term solution.

I would honestly consider a biologic and have your rheumatologist prescribe it. There have even been trials in which Entyvio and Humira have been prescribed together.

I'm going to tag my little penguin since she also has a son with arthritis and on two biologics.

 

[Octobergirl]

My daughter was recently switched over to Entyvio and because Entyvio takes so long to build to therapeutic levels she needed a bridge therapy. She has been on steroids too much over the last 18 months so he wanted her to try Tacro.



Taco is very hard on the kidneys and must be monitored very carefully. There are also a few other scary risks but a lot of the drugs IBD patients take have scary risks. It is just that with Tacro, the chances you get those scary things are a little higher.



They use Taco long term with transplant patients because they don't have choice. Also, believe it or not transplant patients are on a lower dose than an IBD patient needs to control their disease. I can't comment on rheumy patients.



Taco also has some nasty side effects.



Taco is considered an immune suppressing drug and not an immunomodulator.



My daughter may also need to combine biologics due to severe psoriasis. Her GI says that Entyvio is actually the easiest drug to combine with another biologic because it is the least systemic and most targeted of the therapies.



I hope this helps. Just curious, how long did it take Entyvio to kick in for you and do you have UC or Crohn's?

Thanks for sharing your daughter’s experience. Did she have to go on a low potassium diet on the Tacrolimus? Is she still on it with the Entyvio, and how long was she on it? How long did it take to help?

I have Crohn’s colitis. Entyvio was slow to work but I’m so glad it does work. I think my CRP started to go down around 3-4 months but I didn’t get into remission until 7-8 months. I hope it works well for your daughter.

Does your doctor have any luck with insurance approving two biologics?

 

[crohnsinct]

She is still on loading doses. Getting her third dose Thursday then on to maintenance schedule every 4 weeks. She has Crohn's and it is her rectum that is the problem child. It hasn't worked nor has the Tacrolimus. She has been on Tacrolimus for about a month. No mention of a low potassium diet.

She is getting a blood transfusion now so you saying it takes a while is encouraging us with hope that it will kick in.

Same as with May142's daughter. If my daughter needs the two biologics the GI said the derm should request the second one and that they have better luck when the two meds come from two different physicians.

 

[aypues]

We recently talked briefly about Tacrolimus but decided against it for some reason, maybe the kidney thing. We also threw around Thalidomide idea that a Cedars IBD doc brought up, but seemed risky due to peripheral neuropathy and toxicity. Both seemed short term fixes, under 1 year.

I was on Cellcept before in combination with Remicade but developed neutropenia eventually and had to discontinue it. Had a couple bad infections while on it too.

 

[lgpcarter]

I would honestly consider a biologic and have your rheumatologist prescribe it. There have even been trials in which Entyvio and Humira have been prescribed together.

I'm going to tag my little penguin since she also has a son with arthritis and on two biologics.

I don’t have arthritis but have been on both Humira and Entyvio. Took high doses of both for a year both for Crohn’s. Have recently switched from a Humira to Stelara. no extra illnesses due to the double biologics. Not even s cold this winter. Maybe try to fight your insurance? It is starting to be more common. Or try compassionate program through Abbvie and see if they will pay?

My doctor did discuss Tacro with me but I declined due to side effects. I guess I figured better the devils I know rather than a new one.

 

[lgpcarter]

I would honestly consider a biologic and have your rheumatologist prescribe it. There have even been trials in which Entyvio and Humira have been prescribed together.

I'm going to tag my little penguin since she also has a son with arthritis and on two biologics.

I don’t have arthritis but have been on both Humira and Entyvio. Took high doses of both for a year both for Crohn’s. Have recently switched from a Humira to Stelara. no extra illnesses due to the double biologics. Not even s cold this winter. Maybe try to fight your insurance? It is starting to be more common. Or try compassionate program through Abbvie and see if they will pay?

My doctor did discuss Tacro with me but I declined due to side effects. I guess I figured better the devils I know rather than a new one.

 

[Octobergirl]

Cellcept has been used in arthritis before - it's used very commonly for arthritis in Lupus, scleroderma and connective tissue diseases.



It's not typically prescribed for spondyloarthritis, but my daughter could not tolerate MTX, got too many infections with Imuran and initially had a hard time with Arava (though now she's fine on it), so we considered it. Never tried it though.



So one knee, one ankle and both feet? Do you know what kind of arthritis you have - what the official diagnosis is? Axial spondyloarthritis affects spine/SI joints and peripheral spondyloarthritis affects joints other than the spine - like ankles, knees, fingers, and even toes.



So if someone has both kinds, such as my younger daughter, who has MANY joints involved - both knees, both ankles, both hips, both elbows, fingers, both temporomandibular joints (TMJs), both SI joints and lumbar spine facet joints, they would be counted in the axial category.



So if you have any spinal involvement, your treatment has to be based on that, simply because immunomodulators like MTX do not work for axial arthritis. It sounds like you don't have axial arthritis though. So in that case, immunomodulators or DMARDs (as they'r called in the rheumatology world) should work. I'm really surprised they are jumping from MTX and Imuran to Tacro. Is it because your bowel is also flaring? Because it seems like overkill to prescribe Tacro for arthritis when there are other safer options that you haven't tried.



Arava, for one, is safer. That works well for peripheral arthritis for my younger daughter. Methotrexate is of course, safer, but in your case it seems like you'd need a really high dose for that to work. If you have psoriatic arthritis or peripheral spondyloarthritis, your doctor could make the case for Otezla. That also worked well for one of my daughters' peripheral joints.



There are others, but they're weaker - like Sulfasalazine or Plaquenil.



Currently my younger one is on an IL-17 inhibitor and an anti-TNF. IL-17 inhibitors are NOT recommended for people with Crohn's - they can actually cause Crohn's to flare, the same way Entyvio can make joints/arthritis flare. But at the time, she'd tried and failed all anti-TNFs for her AS, and she was developing more and more joint damage. Her Crohn's was in remission on an anti-TNF, so we decided to take the risk and tried Cosentyx.



Within 3 months, her Crohn's flared.



First we tried the IL-17 inhibitor with Entyvio and were able to get both approved - one for the AS and one for the Crohn's. However, Entyvio caused drug-induced Lupus and it made her arthritis flare, so she was taken off it. And put on an anti-TNF. The way we got it through insurance was by having one prescribed by her rheumatologist and one by her GI.



So now she's on both and her Crohn's was in remission (and may still be), but she's fighting recurrent CDiff. Her AS is severe, so while improved, it's definitely not in remission. She still has visible inflammation in many joints and has a high CRP, but her AS flares with every infection, so we'll see how well things are working once she has a fecal transplant for the CDiff.



In terms of iritis, my girls haven't had it, but my husband has. He also has AS and iritis and has mostly managed it with Pred drops and it hasn't recurred in quite a while, luckily.



I'm sure that did factor into the decision to put you on Tacro, because I don't think Arava has ever been tested in uveitis and I doubt any of the other options I mentioned earlier have been.



Are you on an NSAID? That might actually help with the arthritis. I know it is generally contraindicated in Crohn's, but typically if you have aggressive arthritis, doctors will allow it, as long your Crohn's is not in a severe flare. My daughter has been on NSAIDs for 10 years, since she has mild Crohn's and severe AS.



Something like Celebrex (which is easier on the stomach) might work for both the arthritis and iritis. My husband primarily managed his iritis with NSAIDs.



The other option would be steroid injections into those joints but that's more of a quick fix/band-aid than a long-term solution.



I would honestly consider a biologic and have your rheumatologist prescribe it. There have even been trials in which Entyvio and Humira have been prescribed together.



I'm going to tag my little penguin since she also has a son with arthritis and on two biologics.

I’m sorry your daughter has been through so much and is still dealing with issues even in two biologics.

My rheumatologist is pretty against two biologics since she said there really hasn’t been that much research on them and what there has been has shown life threatening infections, so she would not be the one to prescribe the second biologic. She did show me a clinical trial that is using Entyvio, Humira and MTX and wanted me to see if I qualified, but I don’t since you have to be newly diagnosed and never have been on a biologic before. I’ve actually been on Humira in the past, so I’m a bit concerned that it may now work for me again, but who knows. I guess I could still try and fight insurance.

Hmm, I’m not sure why I haven’t been offered other options. I actually had SI joint pain right before I got Crohn’s, but it has never come back, and it wasn’t conclusive if it was Crohn’s related. I was running a lot at the time, so it may have been an injury. Since then, I haven’t had back arthritis, everything has been outside of the back and spine.

I was actually on both Imuran and Methotrexate at the same time (with Entyvio and Prednisone), but I kept having symptoms and having to have my knee drained. I wonder if the other options you mention also help iritis. My iritis seems to be slightly coming back now that I’ve been off Methotrexate for a couple weeks, so I hope the Tacrolimus kicks in and clears it.

I’m not thrilled about being on Tacrolimus, but I’m kind of desperate at this point and have been on steroids for 7 months and really want to get off them. I’m not on NSAIDS, but I’m a little hesitant to get on them, and now I believe there are certain NDAIDS that are contraindicated with Tacrolimus.

From what I understand my rheumatologist is hoping that she can eventually switch me over to something else to maintain remission (if I hopefully get there) instead of being on Tacrolimus indefinitely. I’m very concerned about side effects, but I’m also sick of dealing with the diseases.

 

[Octobergirl]

She is still on loading doses. Getting her third dose Thursday then on to maintenance schedule every 4 weeks. She has Crohn's and it is her rectum that is the problem child. It hasn't worked nor has the Tacrolimus. She has been on Tacrolimus for about a month. No mention of a low potassium diet.



She is getting a blood transfusion now so you saying it takes a while is encouraging us with hope that it will kick in.



Same as with May142's daughter. If my daughter needs the two biologics the GI said the derm should request the second one and that they have better luck when the two meds come from two different physicians.

It’s hard to be patient when flaring, but yes, please try and be hopeful since it takes so long to kick in. It sounds like she has a more aggressive schedule since most infusions are 8 weeks apart so maybe that will help out too.

So she hasn’t seen any improvement at all from Tacrolimus yet? How much is she taking per day?

 

[Octobergirl]

I don’t have arthritis but have been on both Humira and Entyvio. Took high doses of both for a year both for Crohn’s. Have recently switched from a Humira to Stelara. no extra illnesses due to the double biologics. Not even s cold this winter. Maybe try to fight your insurance? It is starting to be more common. Or try compassionate program through Abbvie and see if they will pay?



My doctor did discuss Tacro with me but I declined due to side effects. I guess I figured better the devils I know rather than a new one.

Are you on Stelara with Entyvio? Both my GI and rheumatologist have suggested Stelara (alone) to try and take care of everything, bowels, arthritis, iritis, skin issues, but I’m afraid it will only help some issues and leave others, and I’m especially worried about having my bowel flare again.

How did you get your insurance to cover both biologics?

Thanks for the suggestion of the Abbvie compassionate program. I may look into that.

How are you doing now on Stelara?

 

[crohnsinct]

From what I hear and have read Stelara has the same success rate with Crohn's as Entyvio. We actually wanted Stelara for our daughter because of her horrendous psoriasis but the GI felt Entyvio would work better for rectal disease and we can treat the skin topically.

Sounds like with all your different conditions and the fact that ENtyvio may make joint issues worse, Stelara might be a good choice.

As far as going back to an anti tnf our GI says that they are having great luck reintroducing anti tnf's as long as you have been off it for a year. So if my daughter fails Entyvio and then Stelara I think our plan is to retry Remicade.

She started on 3mg twice daily of the Tacro but had a bad neurological reaction to it. We stopped it, let it wash from her system and then started slowly with 1 mg daily for about a week then 2mg daily for a few weeks then went up to 3mg daily because her trough level was low. For IBD patients in a flare, her GI likes to see a trough level of about 8. So it is really more about the trough level than the dose. Last week, without changing dose her trough level suddenly went up to 12. Last night in the ER her level was 25. Weird but the docs here tell us that with diarrhea you actually will raise the trough level of Taco. 25 is too high (dangerous for liver and kidneys) so they have us holding for now.

It hasn't helped her at all. One of the options presented was to admit her for IV tacro to get her levels up to a 12 because they don't feel comfortable trying that outpatient and remotely (she goes back to college soon) but now I think for her that is out.

I think she is going back to steroids with the tacro bridge.

Good luck with coming up with a plan!

 

[Octobergirl]

From what I hear and have read Stelara has the same success rate with Crohn's as Entyvio. We actually wanted Stelara for our daughter because of her horrendous psoriasis but the GI felt Entyvio would work better for rectal disease and we can treat the skin topically.



Sounds like with all your different conditions and the fact that ENtyvio may make joint issues worse, Stelara might be a good choice.



As far as going back to an anti tnf our GI says that they are having great luck reintroducing anti tnf's as long as you have been off it for a year. So if my daughter fails Entyvio and then Stelara I think our plan is to retry Remicade.



She started on 3mg twice daily of the Tacro but had a bad neurological reaction to it. We stopped it, let it wash from her system and then started slowly with 1 mg daily for about a week then 2mg daily for a few weeks then went up to 3mg daily because her trough level was low. For IBD patients in a flare, her GI likes to see a trough level of about 8. So it is really more about the trough level than the dose. Last week, without changing dose her trough level suddenly went up to 12. Last night in the ER her level was 25. Weird but the docs here tell us that with diarrhea you actually will raise the trough level of Taco. 25 is too high (dangerous for liver and kidneys) so they have us holding for now.



It hasn't helped her at all. One of the options presented was to admit her for IV tacro to get her levels up to a 12 because they don't feel comfortable trying that outpatient and remotely (she goes back to college soon) but now I think for her that is out.



I think she is going back to steroids with the tacro bridge.



Good luck with coming up with a plan!

Oh wow, I’m so sorry your daughter is or was in the ER, and I’m sorry to hear the Tacrolimus hasn’t helped her either despite her levels being so high. I had asked my Rheumatologist about where my elevates should be, and I believe she said between 2 and 4, so it must be a lower level for arthritis. I guess I’m a little surprised it’s so high for IBD since I think she said transplant patients want to be around an 8. It must be really disappointing to not have it work despite the levels being so high. It’s so frustrating to have to wait and see if a med is going to work for you.

Did your daughter have remission from Remicade before and then it’s lost effectiveness? It’s good to know people have success getting back on anti TNFs after a year. I hadn’t heard that. Remicade actually worked for all my symptoms initially but then after a couple months my bowel flared. It kept everything else in check though.

I do like Entyvio but it is kind of a benefit and a curse that it’s gut specific. I know it cuts down on the side effects but when you have other issues you’re kind of stuck with how to work around it. I can understand why you would want to try Stelara. I’m keeping it as an option if all else fails, but I really don’t want to risk my bowel flaring from getting off Entyvio.

I hope your daughter can get some relief soon.

 

[Octobergirl]

From what I hear and have read Stelara has the same success rate with Crohn's as Entyvio. We actually wanted Stelara for our daughter because of her horrendous psoriasis but the GI felt Entyvio would work better for rectal disease and we can treat the skin topically.



Sounds like with all your different conditions and the fact that ENtyvio may make joint issues worse, Stelara might be a good choice.



As far as going back to an anti tnf our GI says that they are having great luck reintroducing anti tnf's as long as you have been off it for a year. So if my daughter fails Entyvio and then Stelara I think our plan is to retry Remicade.



She started on 3mg twice daily of the Tacro but had a bad neurological reaction to it. We stopped it, let it wash from her system and then started slowly with 1 mg daily for about a week then 2mg daily for a few weeks then went up to 3mg daily because her trough level was low. For IBD patients in a flare, her GI likes to see a trough level of about 8. So it is really more about the trough level than the dose. Last week, without changing dose her trough level suddenly went up to 12. Last night in the ER her level was 25. Weird but the docs here tell us that with diarrhea you actually will raise the trough level of Taco. 25 is too high (dangerous for liver and kidneys) so they have us holding for now.



It hasn't helped her at all. One of the options presented was to admit her for IV tacro to get her levels up to a 12 because they don't feel comfortable trying that outpatient and remotely (she goes back to college soon) but now I think for her that is out.



I think she is going back to steroids with the tacro bridge.



Good luck with coming up with a plan!

Did your daughter have any luck with EEN? I just saw that you had tried it.

 

[crohnsinct]

Yes, lots of luck and I would say she was about as sick as she is now. She won't do it now.

 

[my little penguin]

Stelara has not been very helpful for my kiddos arthritis
Had to raise the dose to 90 mg every 4 weeks
Vs std 90 mg every 8 weeks
Still not at baseline for arthritis
His crohns is ok
But not arthritis
He does take a second biologic for auto inflammatory condition as well as mtx and Celebrex

So maybe Taltz or cosentrx for your arthritis plus entivyio ???

 

[Octobergirl]

Stelara has not been very helpful for my kiddos arthritis

Had to raise the dose to 90 mg every 4 weeks

Vs std 90 mg every 8 weeks

Still not at baseline for arthritis

His crohns is ok

But not arthritis

He does take a second biologic for auto inflammatory condition as well as mtx and Celebrex



So maybe Taltz or cosentrx for your arthritis plus entivyio ???

Hi MLP,

Have your kids found anything to put their arthritis in remission previously? Anti-TNF put my Crohn’s arthritis in remission, but I know Stelara isn’t an anti-TNF, so I wonder how it would work for my arthritis. I appreciate your sharing that it doesn’t work that well for them though. It makes me more cautious of making the switch.

 

[my little penguin]

Humira did well for ds arthritis and crohns
But stopped working
So they switched to Stelara
His joints look better than without stelara
But not as good as on humira
Ds is complicated so may not be the best example
He has auto inflammatory something or other (waiting on genetics )
So takes two biologics at once