Starting Skyrizi next week.. need some support and some questions

[lifeexperience]

I had been experiencing mild Crohn's symptoms for 3.5 years. I didn't even know what it was until just 5 months ago. Then everything exploded with Crohn's symptoms in August. 2 weeks where I couldn't eat anything.. needed to be hospitalized.. 24/7 cramping pain.. joint pain.. severe fatigue. I was diagnosed after colonoscopy and MRI with Crohn's of the terminal ilium. My Crohn's is located only in that small part of the G.I (the terminal ilium in the small intestine). After the extremely scary flare from August.. things calmed down.. now I'm back to my original symptoms only.. very specific symptom of moderate pain and nausea at night.. basically, what I refer to as "nauseous pain".. The nauseous pain wakes me up every night after only 5 or so hours of sleep.

Fast forward to now.. the doctor suggested I try biologics.. she said if you're gonna try a biologic may as well go for a "safer" one with less systematic side effects and more targeted to the G.I like Skyrizi.

Well, insurance denied the doctor's prescription for Skyrizi twice.. and we applied for the MyAbby Assist program. It just got approved today. By the way, what if my insurance still doesn't agree to cover Skyrizi after the 3 months of free drugs is over? There's no way in hell that I could ever afford a $25,000 / month drug. My girlfriend remarked that getting approved for the free drugs is Skyrizi's attempt to hook patients and then in the near future be stuck with unbelievably massive bills. What would happen hypothetically if I received 3 doses of Skyrizi and then couldn't take any more doses, due to not being able to obtain or it cost being prohibitably expensive? By stopping Skyrizi like that what kind of risks would I be facing from withdrawal?

I'm not gonna lie.. I hate having "nauseous pain" and being woken up by it every night after only 5 hours of sleep. I am also scared that a major flare like what happened to me in August could strike again. My Crohn's is pretty much confined to only the terminal ilium (where they found 6 ulcers and inflammation during the colonoscopy in August).. so does Skyrizi really make sense for my specific Crohn's situation?

Secondly, I'm scared shitless about possible side effects or complications from any biologics, including Skyrizi. If I get my first infusion.. what kind of side effects or complications am I looked at possibly experiencing? If I do get side effects.. will I likely experience them right away? like within a day or two? or they could come anytime? I just want to try to be prepared mentally for it.

Thirdly, how would I know if the Skyrizi is working or not? Is it likely I would notice immediately after the first dose.. like within a few days after getting the first infusion? I guess "working" in my case would be less or no nauseous pain at night waking me up.

Finally, my girlfriend bought me tickets to an NBA game for next week. I'm a huge NBA fan and she made a lot of effort to get me these good tickets. Do you think I would be okay after receiving the infusion and going to the game 3 days later? Or it just depends? This was something I was looking forward to for many months. I just don't know what to expect after getting my first Skyrizi infusion.

Does anyone else have a Crohn's condition where "nauseous pain" is pretty much the main and only symptom you have? I don't have any bleeding or urgency to poo (doctor says because my Crohn's isn't in the large colon).. I don't have many other stereotypical Crohn's symptoms.. Outside of the horrific one and only flare that I experienced in August.. I mainly just have "nauseous pain" at night.

Thanks!

 

[Aituk7]

I had been experiencing mild Crohn's symptoms for 3.5 years. I didn't even know what it was until just 5 months ago. Then everything exploded with Crohn's symptoms in August. 2 weeks where I couldn't eat anything.. needed to be hospitalized.. 24/7 cramping pain.. joint pain.. severe fatigue. I was diagnosed after colonoscopy and MRI with Crohn's of the terminal ilium. My Crohn's is located only in that small part of the G.I (the terminal ilium in the small intestine). After the extremely scary flare from August.. things calmed down.. now I'm back to my original symptoms only.. very specific symptom of moderate pain and nausea at night.. basically, what I refer to as "nauseous pain".. The nauseous pain wakes me up every night after only 5 or so hours of sleep.

Fast forward to now.. the doctor suggested I try biologics.. she said if you're gonna try a biologic may as well go for a "safer" one with less systematic side effects and more targeted to the G.I like Skyrizi.

Well, insurance denied the doctor's prescription for Skyrizi twice.. and we applied for the MyAbby Assist program. It just got approved today. By the way, what if my insurance still doesn't agree to cover Skyrizi after the 3 months of free drugs is over? There's no way in hell that I could ever afford a $25,000 / month drug. My girlfriend remarked that getting approved for the free drugs is Skyrizi's attempt to hook patients and then in the near future be stuck with unbelievably massive bills. What would happen hypothetically if I received 3 doses of Skyrizi and then couldn't take any more doses, due to not being able to obtain or it cost being prohibitably expensive? By stopping Skyrizi like that what kind of risks would I be facing from withdrawal?

I'm not gonna lie.. I hate having "nauseous pain" and being woken up by it every night after only 5 hours of sleep. I am also scared that a major flare like what happened to me in August could strike again. My Crohn's is pretty much confined to only the terminal ilium (where they found 6 ulcers and inflammation during the colonoscopy in August).. so does Skyrizi really make sense for my specific Crohn's situation?

Secondly, I'm scared shitless about possible side effects or complications from any biologics, including Skyrizi. If I get my first infusion.. what kind of side effects or complications am I looked at possibly experiencing? If I do get side effects.. will I likely experience them right away? like within a day or two? or they could come anytime? I just want to try to be prepared mentally for it.

Thirdly, how would I know if the Skyrizi is working or not? Is it likely I would notice immediately after the first dose.. like within a few days after getting the first infusion? I guess "working" in my case would be less or no nauseous pain at night waking me up.

Finally, my girlfriend bought me tickets to an NBA game for next week. I'm a huge NBA fan and she made a lot of effort to get me these good tickets. Do you think I would be okay after receiving the infusion and going to the game 3 days later? Or it just depends? This was something I was looking forward to for many months. I just don't know what to expect after getting my first Skyrizi infusion.

Does anyone else have a Crohn's condition where "nauseous pain" is pretty much the main and only symptom you have? I don't have any bleeding or urgency to poo (doctor says because my Crohn's isn't in the large colon).. I don't have many other stereotypical Crohn's symptoms.. Outside of the horrific one and only flare that I experienced in August.. I mainly just have "nauseous pain" at night.

Thanks!

I too have chrons of the terminal ileum, I too saw the horror stories of how difficult immunosuppressants can be. I sought a different solution and found one.

Please read
https://crohnsforum.com/threads/i-am-now-in-remission.87349/
https://crohnsforum.com/threads/carnivore-diet.87365/
Any questions feel free to get in touch

 

[Jo-mom]

Hi there, my son has been on Remicade without any problems for 5 years and he is doing great. He has Crohn's (same location as you). Most people do very well on biologics. Remicade is also approved more easily (I believe). I live in Canada, so things are a little different here. Diet can be helpful for some people, but only a small percent fair well on diet alone. It's not enough (in most cases) to stop the infammation from destroying your insides.

Please do your research and talk to your doctor before doing anything and ask for other choices that might be more affordable for you in terms of treatment plans. Good luck.

 

[lifeexperience]

I too have chrons of the terminal ileum, I too saw the horror stories of how difficult immunosuppressants can be. I sought a different solution and found one.

Please read
https://crohnsforum.com/threads/i-am-now-in-remission.87349/
https://crohnsforum.com/threads/carnivore-diet.87365/
Any questions feel free to get in touch

In my case, my body feels bad when I eat too much meat and I feel depressed. I definitely gravitate toward fresh fruits and veggies. I don't have the "stereotypical" food intolerances that some Crohn's patients have. My body generally responds better to moderate amounts of fruits and veggies than meat.

 

[my little penguin]

You don’t get “hooked” on a med.
It either works or it’s doesn’t
The Pham will not ship it to you if your insurance or you can’t pay for it.
At that point you switch to a different med .
My child (adult now ) has been on remicade /humira /Stelara.
He currently takes Stelara plus methotrexate (over 6 years now )
No issues afterwards
Never had real issues with humira either (over 5 years )
He only had an allergic reaction to remicade x2
But he reacts to everything -food drugs pollens animals etc…so expected

skyrizi is the most expensive of biologics right now and it’s not gut specific
Entivyio is specific to the large intestine
Stelara is overall for the entire body but works more on the small intestine

the majority of insurance requires step up therapy
Meaning you fail lower level drugs (less effective -cheaper ) then step up to the next level
For crohns that is
5-Asa (Pentasa etc… useless only treats surface of intestine)
Immunosuppressants-methotrexate is good low dose compared to Chemo given to two years olds with arthritis
6-mp/imuran/aza are used but less do due to lymphoma risk
Then biolgics
Humira is cheapest works well not real side effects
Remicade infusion but also works well
Entyvio /Stelara more expensive but depends on disease location
Then skyrizi -most expensive
Safety risk is at 2% for Stelara/skyrizi
But remicade /humira are around 5-6%(last time I checked ) of secondary infection

also around remicade cost level is simponi aria and cimiza so more options

No withdrawal if you stop skyrizi
Just need a different med to stop inflammation

 

[Aituk7]

In my case, my body feels bad when I eat too much meat and I feel depressed. I definitely gravitate toward fresh fruits and veggies. I don't have the "stereotypical" food intolerances that some Crohn's patients have. My body generally responds better to moderate amounts of fruits and veggies than meat.

Yeah I was exactly the same it's likely due to you having a problem with digesting fat. The ileum forms multiple functions in relation to the release of bile acids and reabsorbing them. Chrons messes with that significantly. I had to start off with a really low fat regimen and slowly build up my tolerance as the body adjusted and healed.

 

[momsa]

I can only give you the experience of one person on Skyrizi, but for what it's worth, my son has been on Skyrizi since last May. It's the third biologic he has tried. His Crohn's is mainly in his large intestine. Stelara worked some but not enough. Entyvio worked less than the Stelara. Skyrizi has put him into both clinical remission (he says he has no symptoms from his Crohn's) and chemical remission. By July, his CRP was normal (reported as <.6) and his fecal cal tested in August was also normal (reported as < 50). Those labs have never been normal since his diagnosis - fecal cal started above 600. He has had no side effects from the Skyrizi whatsoever except that he doesn't think infusions and on body injections feel good, and he has had some discomfort at the site of the on body injector that lasted about 5-10 minutes. Our goal is endoscopic remission, and I can't tell you how close we've gotten to that yet because the imaging isn't happening until this January.

My son is lucky to have insurance, but our original approval was also only for 3 months - it seems that they approve the infusions, see how it goes, and then approve the injections separately. Given the price, we were also nervous about getting the second approval. Getting the approval for the initial infusions was much much harder than getting the approval for continuing with the injections. My suggestion is to call AbbVie and talk with them - ask them pointed questions about whether they would cover you for the on body injections if the infusions go well and get the name of the agent you talk with (in fact, ideally you could record the conversation if that's allowed).

My son never eats red meat, for many reasons. He's a vegetarian except he eats fish very occasionally.

 

[lifeexperience]

Hi there, my son has been on Remicade without any problems for 5 years and he is doing great. He has Crohn's (same location as you). Most people do very well on biologics. Remicade is also approved more easily (I believe). I live in Canada, so things are a little different here. Diet can be helpful for some people, but only a small percent fair well on diet alone. It's not enough (in most cases) to stop the infammation from destroying your insides.

Please do your research and talk to your doctor before doing anything and ask for other choices that might be more affordable for you in terms of treatment plans. Good luck.

That's great to hear! I'm glad your son is doing well. The doctor told me that although Skyrizi is newer but it seems to have less side effects for most patients than Remicade. I'm glad to hear though that you and your son respond well to Remicade.

 

[Aituk7]

I can only give you the experience of one person on Skyrizi, but for what it's worth, my son has been on Skyrizi since last May. It's the third biologic he has tried. His Crohn's is mainly in his large intestine. Stelara worked some but not enough. Entyvio worked less than the Stelara. Skyrizi has put him into both clinical remission (he says he has no symptoms from his Crohn's) and chemical remission. By July, his CRP was normal (reported as <.6) and his fecal cal tested in August was also normal (reported as < 50). Those labs have never been normal since his diagnosis - fecal cal started above 600. He has had no side effects from the Skyrizi whatsoever except that he doesn't think infusions and on body injections feel good, and he has had some discomfort at the site of the on body injector that lasted about 5-10 minutes. Our goal is endoscopic remission, and I can't tell you how close we've gotten to that yet because the imaging isn't happening until this January.

My son is lucky to have insurance, but our original approval was also only for 3 months - it seems that they approve the infusions, see how it goes, and then approve the injections separately. Given the price, we were also nervous about getting the second approval. Getting the approval for the initial infusions was much much harder than getting the approval for continuing with the injections. My suggestion is to call AbbVie and talk with them - ask them pointed questions about whether they would cover you for the on body injections if the infusions go well and get the name of the agent you talk with (in fact, ideally you could record the conversation if that's allowed).

My son never eats red meat, for many reasons. He's a vegetarian except he eats fish very occasionally.

I'm so glad he found something that works for him! Long may it continue.

 

[momsa]

Thanks so much for your kind message. His current medication has given us a lot of hope.

 

[lifeexperience]

Forgot to share..

My CRP is always within normal range every time I've been tested, maybe because of the anti-inflammatory diet I've been eating for years, way before Crohn's diagnosis? But the 7 or so ulcers and moderate inflammation they found at my terminal ilium is what led to Crohn's diagnosis in my case.

 

[Aituk7]

Forgot to share..

My CRP is always within normal range every time I've been tested, maybe because of the anti-inflammatory diet I've been eating for years, way before Crohn's diagnosis? But the 7 or so ulcers and moderate inflammation they found at my terminal ilium is what led to Crohn's diagnosis in my case.

I imagine your calprotectin levels are high aswell. There's more to blood tests than just CRP, my CRP was only slightly raised.

Did they give you any treatment for the ulcers?

 

[lifeexperience]

I imagine your calprotectin levels are high aswell. There's more to blood tests than just CRP, my CRP was only slightly raised.

Did they give you any treatment for the ulcers?

calprotectin has always been normal too.

Did they give you any treatment for the ulcers?

I'm curious if you know what treatments could be useful for the ulcers? The doctors in both Singapore and here in the U.S didn't prescribe anything specifically for ulcers. We've been just trying to get me the Skyrizi to try. So far I'm only taking Budnisidide (very low dose due to higher doses causing anxiety for me)

 

[Aituk7]

calprotectin has always been normal too.



I'm curious if you know what treatments could be useful for the ulcers? The doctors in both Singapore and here in the U.S didn't prescribe anything specifically for ulcers. We've been just trying to get me the Skyrizi to try. So far I'm only taking Budnisidide (very low dose due to higher doses causing anxiety for me)

I don't know of any medicinal treatments sorry. During my colonoscopy they couldn't get into my small bowel to biopsy the inflammation or see ulcers but my symptoms all pointed towards atleast one ulcer being there. Luckily the PKD diet I followed clears all that up aswell by resetting the mitochondria in your gut. Took about 3 months for those symptoms to get better.

 

[Andersen007]

I dont think you have to take anything specific for ulcers - the best shot at healing them is by lowering the inflammation. For me CRP has consistently been at the lower end of 0, even at a clear flare, but Calpro has been to 2000 at its highest, and is very sensitive marker in my case. The unfortunate truth is whether an inflammation marker is normal or not only really means something if its sensitive to your disease. So once I saw on the ileocolonoscopy and MRE that I have inflammation and my CRP is completely normal, I consider it meaningless. But I am very happy when my Calpro reduces.

 

[Jo-mom]

Some people the CRP levels can be fine but they still have active inflammation. In my son's case, CRP levels are indicative of disease for him, so for him, it's a good source, but not for everyone.

 

[lifeexperience]

I definitely have active inflammation.. I get woken up by nauseous pain every night after only 5 hours of sleep. That's why I'm eager to start the Skyrizi. I just hope it can help quickly and I can finally get a good sleep after months of hardly sleeping. My primary Crohn's symptom is really specific.. it mostly comes down to nauseous pain especially at night while sleeping... all emanating from that lower right quadrant of my abdomen at the terminal ilium region.

 

[Aituk7]

I definitely have active inflammation.. I get woken up by nauseous pain every night after only 5 hours of sleep. That's why I'm eager to start the Skyrizi. I just hope it can help quickly and I can finally get a good sleep after months of hardly sleeping. My primary Crohn's symptom is really specific.. it mostly comes down to nauseous pain especially at night while sleeping... all emanating from that lower right quadrant of my abdomen at the terminal ilium region.

Have you tried fasting and noticed a difference? Eating at different times of day etc?

 

[Scipio]

Anderson007 is correct. There is no specific treatment for Crohn's ulcers. A Crohn's ulcer is just an area of particularly intense inflammation such that the damage to the tissue constitutes a visually obvious lesion upon colonoscopy. The treatment for Crohn's ulcers is to get the inflammation down - by medication or diet or both. It's the same treatment as for Crohn's disease in general and not specifically focused on the ulcers.

 

[lifeexperience]

Have you tried fasting and noticed a difference? Eating at different times of day etc?

the other time I get nauseous pain usually is in between meals.. so I find myself needing to eat more often than before.

 

[Aituk7]

the other time I get nauseous pain usually is in between meals.. so I find myself needing to eat more often than before.

Sorry what I meant was have you gone a day without eating to see if your symptoms improved at all?

It's just bizarre to me that it always strikes at night

 

[lifeexperience]

During the August flare.. I almost didn't eat any food for 2.5 weeks.. except a few small bites of egg white, chicken, and plain rice porridge each day.. I've gone a day or half a day before blood tests or medical procedures without eating (effectively fasting) and I always feel terrible when I do that.. my stomach hurts.. I feel nauseous pain, and depressed and irritable. I definitely feel small, healthy, frequent meals work best..

Yeah, I have tried everything.. I've tried many many many different kinds of foods for lunch and dinner.. I've tried eating before bedtime.. normally not eating for hours before bed.. it doesn't seem to make any difference. I still experience the same nauseous pain 99% of the time about 5 hours after I fall asleep. It doesn't even matter what time I sleep whether late or early. It's always after I lay down for 4 or 5 hours the pain and nausea start to come and yeah doesn't matter whether I ate or didn't eat.

I've told this story to every G.I and naturopath I've seen and so far none of the doctors have any thoughts on it.. they just say well these are your Crohn's symptoms.. but I guess it makes sense to share on here to crowdsource in case anyone else has any ideas. The doctors say the ulcers and inflammation caused by Crohn's at the terminal ilium is what causes it which is most likely true.. but my Crohn's symptom is so specific.. and I could almost set my watch to how perfectly I always get woken up by pain and nausea after only 5 hours of sleep each night.

 

[Aituk7]

During the August flare.. I almost didn't eat any food for 2.5 weeks.. except a few small bites of egg white, chicken, and plain rice porridge each day.. I've gone a day or half a day before blood tests or medical procedures without eating (effectively fasting) and I always feel terrible when I do that.. my stomach hurts.. I feel nauseous pain, and depressed and irritable. I definitely feel small, healthy, frequent meals work best..

Yeah, I have tried everything.. I've tried many many many different kinds of foods for lunch and dinner.. I've tried eating before bedtime.. normally not eating for hours before bed.. it doesn't seem to make any difference. I still experience the same nauseous pain 99% of the time about 5 hours after I fall asleep. It doesn't even matter what time I sleep whether late or early. It's always after I lay down for 4 or 5 hours the pain and nausea start to come and yeah doesn't matter whether I ate or didn't eat.

I've told this story to every G.I and naturopath I've seen and so far none of the doctors have any thoughts on it.. they just say well these are your Crohn's symptoms.. but I guess it makes sense to share on here to crowdsource in case anyone else has any ideas. The doctors say the ulcers and inflammation caused by Crohn's at the terminal ilium is what causes it which is most likely true.. but my Crohn's symptom is so specific.. and I could almost set my watch to how perfectly I always get woken up by pain and nausea after only 5 hours of sleep each night.

I'm not a doctor but if I had to guess it sounds to me like the ulcers are becoming irritated. Stomach ulcers I know actually relax after eating food, you might be in the same boat with yours. Hopefully you find a treatment regime that gets rid of them. I recommend PKD but up to you which avenue you go down

 

[lifeexperience]

I'm not a doctor but if I had to guess it sounds to me like the ulcers are becoming irritated. Stomach ulcers I know actually relax after eating food, you might be in the same boat with yours. Hopefully you find a treatment regime that gets rid of them. I recommend PKD but up to you which avenue you go down

that makes a lot of sense

 

[Andersen007]

Based on my 1 year experience with Crohns in my terminal ileum, what I can say is that there is a clear difference for me in terms of food / eating patterns that make me have symptoms after consuming them (diarrhea, bloating, pain) and food / eating patterns that make my inflammation worse. There is overlap, of course, but I have foods that I start to eat and for many days I feel great, but then I start to get worse, but also there are ones that cause me to feel shit but then in many days it tends to get better. Its very difficult to figure out what works, for me, want was most helpful is elimination diet until I find 3 safe foods, keep it as long as I can, then introduce around 1 new food per week and monitor symptoms + calpro when I can. In your case, if you have a hypothesis, e.g. maybe you have symptoms when food reaches your TI, whenever you try a change, for instance not eating 4 hours before bedtime, try to keep it up for a week before deciding if its helping or not. Also try to keep diet stable while doing it. Then after a week you should write down your experiences in a journal, and either drop the hypothesis, or adopt it, then make a new one. E.g.: maybe its the egg whites, try to not eat them but dont introduce anything new, etc.

All the while a nutritionist or dietetian could help advise and would be good to monitor blood at least for malnutrition.

And even as someone who personally favours a dietary / lifestyle approach, there is nothing wrong with a few weeks of Budesonide to bring inflammation down - much harder to stop a flare without medication. And then you can still maintain clinical remission much easier with diet and such. EEN is also a great option to trigger remission. Also, I do believe that biologics have a place in all this, so dont think about this as either doing one or the other - attacking the problem from many angles can help a lot.

 

[lifeexperience]

I started Skyrizi last week on Wednesday. I didn't notice any side effects for the first two days.. but on Friday and Saturday started getting waves of nausea in the daytime (unusual because typically just had nausea at night).. and also some minor headaches (also coming in waves).. and general fatigue.. less energy.. Nothing too extreme.. nothing I can't handle.. but enough to make me feel uncomfortable throughout the day.. considering 95% of my Crohns symptoms only happen at nighttime when I'm sleeping.. so I'm wondering if these symptoms are normal and if it's a good sign or a bad sign?
I also feel hungrier than usual since starting Skyrizi.. eating was never an issue for me though.. I guess that's the last noticeable side effect.

I don't notice any decrease in Crohn's symptoms at night but I am more fatigued in general after starting Skyrizi so that's ironically making it a bit easier to sleep longer.. though I wouldn't call that a good thing necessarily.

 

[Cross-stitch gal]

I started Skyrizi on May 9th and am sure hoping to have the same results as momsa did with her son!!!!

 

[momsa]

Yes! I sure hope so!