Difficult med change decision re Crohns

[Hope_eternal]

I know this is a shot in the dark because I’ve posted a similar thread earlier. I’m just struggling with a med change decision for my son. I’ve read about Whitney Dafoe and his very unfortunate decline after trying a new treatment and it has left me terrified. Goodness my heart cries for him that that happened. Now my son’s gastro insists he change his current medication to a new one which requires 3 infusions of a biologic at high doses over the next 3 months then he will go to at home injections every 8 weeks. My blood goes cold thinking how this could affect him. I scour the internet searching for reassurance but can’t find any information at all. I’m a nervous wreck!! I’ve asked doctors but they don’t know. I really don’t want to take the chance and have things go worse for him. I know it seems there aren’t many ME members if any that have Crohns here. I’ve searched Crohns forums as well. I guess I’m hoping you guys might have some helpful suggestions or information or guidance. I’ve cried many anxious tears over this decision. Thank so much ❤️

 

[andyguitar]

Now my son’s gastro insists he change his current medication to a new one which requires 3 infusions of a biologic at high doses over the next 3 months then he will go to at home injections every 8 weeks.

What is the new drug called and what will it replace?

 

[Hope_eternal]

What is the new drug called and what will it replace?

He is on Stelara for severe penetrating Crohns now. They want to change it to Skyrizi. I know there is some thought that the immune system is at play with ME. I’m no doctor and try my best to understand the mechanics at play with the meds but I know biologic suppress his immune system. When his fatigue started in March 2021 he just started Stelara and he had his Covid vaccines April and May 2021. Since we were all Homebound due to Covid we didn’t really know how bad the fatigue was until he went to college in Aug 2022 , (let me preface this that we also all got Covid in June of 2022), 6 weeks into college life he got so fatigued he was sleeping 14/16 hrs a day and couldn’t get to classes. I used to think the Stelara was the cause of the fatigue but it seems ME must have started around the same time. Idk, such a puzzle. Thanks for any insights you may have!

 

[Mary]

@Hope_eternal - can you change doctors? No one really knows what to do about ME/CFS and the best many of us can hope for is to have a doctor who listens and is willing to be educated. It sounds like your doctor is saying "my way or the highway" and doesn't want to hear your concerns. I know it's much easier said than done, switching doctors, but sometimes it can help.

Doctors should listen to their patients, but very many don't and just dismiss our concerns. And you're right, most doctors don't know what to do about ME/CFS, but at the least they should be willing to listen to and work with you.

If your doctor has a compelling reason why he wants to make this switch, he should explain why he wants to do it but the ultimate decision should still be up to you.

I'm afraid I don't know anything about Crohn's, but suggest you put the word "Crohn's" in the title of your thread so that it might attract attention of people who are knowledgeable. You could change it to something like "Difficult med change decision re Crohn's". Most of us are not able to read every thread so the more specific the title, the better chance of getting a knowledgeable response.

 

[andyguitar]

When his fatigue started in March 2021 he just started Stelara and he had his Covid vaccines April and May 2021. Since we were all Homebound due to Covid we didn’t really know how bad the fatigue was until he went to college in Aug 2022 , (let me preface this that we also all got Covid in June of 2022), 6 weeks into college life he got so fatigued he was sleeping 14/16 hrs a day and couldn’t get to classes.

So a fair bit was going on around the same time which makes it hard to work out the why of it all.

He is on Stelara for severe penetrating Crohns now. They want to change it to Skyrizi

Skyrizi is a newer and, it appears, more effective drug for Crohns. Has the Doc said why they want to make the change?

 

[Hope_eternal]

@Hope_eternal - can you change doctors? No one really knows what to do about ME/CFS and the best many of us can hope for is to have a doctor who listens and is willing to be educated. It sounds like your doctor is saying "my way or the highway" and doesn't want to hear your concerns. I know it's much easier said than done, switching doctors, but sometimes it can help.

Doctors should listen to their patients, but very many don't and just dismiss our concerns. And you're right, most doctors don't know what to do about ME/CFS, but at the least they should be willing to listen to and work with you.

If your doctor has a compelling reason why he wants to make this switch, he should explain why he wants to do it but the ultimate decision should still be up to you.

I'm afraid I don't know anything about Crohn's, but suggest you put the word "Crohn's" in the title of your thread so that it might attract attention of people who are knowledgeable. You could change it to something like "Difficult med change decision re Crohn's". Most of us are not able to read every thread so the more specific the title, the better chance of getting a knowledgeable response.

Thank you for your note. I do like this dr. She will listen. The only thing is we do have to change his medication so if it’s not that one it’s gonna have to be another because his current one is not controlling the disease. I’ve sent a note to her with my concerns and I’m waiting to hear back, hopefully we can come up with something that doesn’t feel as scary. I agree, I definitely wouldn’t stay with a doctor that doesn’t listen. I think she tries. She’s the only one of the Crohns doctors that took his fatigue seriously and I feel like she is trying to figure things out. She suggested we apply for a NIH study but I’m not so sure about that. I need do more research on that.

 

[Hope_eternal]

So a fair bit was going on around the same time which makes it hard to work out the why of it all.

Skyrizi is a newer and, it appears, more effective drug for Crohns. Has the Doc said why they want to make the change?

Yes so much was going on. 2021 was a sheesh storm. Forgive my French 😝 They want to switch the med because it’s not controlling the disease.

 

[sunshine44]

That’s difficult. Wishing you guys well in your decisions you have to make. My husband has crohns as well. Tough stuff.

Thought I would share this video that talks a tad about crohns. You may find it useful or not. But here it is:

 

[Hope_eternal]

That’s difficult. Wishing you guys well in your decisions you have to make. My husband has crohns as well. Tough stuff.

Thought I would share this video that talks a tad about crohns. You may find it useful or not. But here it is:

Thank you for sharing this. I have my grandchildren this weekend but will watch this on Monday when I have some quiet time. I’m always interested in hearing about natural ways to manage the illness. We have tried some that have made a difference but my son has his limits. He still wants to live like he used to when it comes to eating. He has made some changes though. So he may come around. Is your husband doing well? Is he on biologics? Thank you.

 

[Rufous McKinney]

Now my son’s gastro insists he change his current medication to a new one which requires 3 infusions of a biologic at high doses over the next 3 months then he will go to at home injections every 8 weeks.

I am taking a supplement, I ordered it by accident.

My digestive issues have improved dramatically.

I'm suffering from wanting everybody with ME to try it. I am not even through the first bottle of 60 capsules.

Long COVID researchers are looking at it.

A number of other symptoms are shifting. I will take this improvement, gladly,.

I think my gut has stopped leaking. I think the SIBO has cleared out.

 

[Hope_eternal]

I am taking a supplement, I ordered it by accident.

My digestive issues have improved dramatically.

I'm suffering from wanting everybody with ME to try it. I am not even through the first bottle of 60 capsules.

Long COVID researchers are looking at it.

A number of other symptoms are shifting. I will take this improvement, gladly,.

I think my gut has stopped leaking. I think the SIBO has cleared out.

Wow that’s wonderful 🤩 I’m glad to heart this for you. Would you mind sharing the name of the supplement? He is on quite a few that his functional doctor recommended for inflammation and gut health (probiotic).. They did help clear up his acne but I don’t see any other improvements unfortunately.

 

[Rufous McKinney]

Would you mind sharing the name of the supplement?

the supplement contains Ellagic Acid. From Pomegranate. The specific supplement I bought was Stem Cell Complete, made by Healthy Blend out of Tampa Florida. I also bought Berry Beneficial.

I should work up a thread on all this, but I"m supposed to be resting!

Elsewhere in PR, there are discussions about TUDCA and butyrate. The latter, is also a key in my case I think. I'm eating really well cooked black beans, quite often, and they are a high dose of butyrate and contain resistant starches. And I'm also eating much fresher food; more diverse fruits because I relocated. I'm not living off Trader Joe Entrees, any longer.

 

[Zebra]

Hi, @Hope_eternal

I have read many of your posts on PR and you are such a great mother to your son with CFS that is often makes me tear up.

Anywho ... usually before a person is to receive a biologic drug, immune modulator, or immunosuppression, the prescribing physician is obligated to test for occult infections.

Has your son's GI doctor done that?

Is she willing to do that?

If not, could a primary care physician do that? It seems like a perfectly reasonable request, and might give you peace of mind to at least try the new medication.

In the past, they usually checked for the heavy hitters like TB, HIV, and Hep C. I'd like to think that nowadays they cast a wider net and check for viruses that could possibly reactivate during treatment.

I hope you will keep us posted, as you are able. No pressure.

My heart goes out to you. I am a grown woman, but when I first got sick, my mom was heavily involved in my caretaking and I will NEVER forget all that she did for me, from keeping me fed, to driving me to medical appointments, to holding me when I sobbed. There is something really special about a mother's love.

 

[Hope_eternal]

Hi, @Hope_eternal

I have read many of your posts on PR and you are such a great mother to your son with CFS that is often makes me tear up.

Anywho ... usually before a person is to receive a biologic drug, immune modulator, or immunosuppression, the prescribing physician is obligated to test for occult infections.

Has your son's GI doctor done that?

Is she willing to do that?

If not, could a primary care physician do that? It seems like a perfectly reasonable request, and might give you peace of mind to at least try the new medication.

In the past, they usually checked for the heavy hitters like TB, HIV, and Hep C. I'd like to think that nowadays they cast a wider net and check for viruses that could possibly reactivate during treatment.

I hope you will keep us posted, as you are able. No pressure.

My heart goes out to you. I am a grown woman, but when I first got sick, my mom was heavily involved in my caretaking and I will NEVER forget all that she did for me, from keeping me fed, to driving me to medical appointments, to holding me when I sobbed. There is something really special about a mother's love.

Thank you Zebra ❤️ now I’m tearing up. In fact I tear up each time I get a response from you all. I can’t express enough how grateful I am and appreciative I feel knowing that you all are struggling yet you still send me such caring and thoughtful messages with such amazing tips and details. Honestly I adore you all.

They tested for hepatitis, mono, lymes and TB, not HIV. I can request it though. They are good about checking for things I may have concerns with. I’ll reach out about that. Thank you for suggesting it.

I’m so glad you had a mother that cared for you. She sounds like a very special lady. That warms my heart. When I hear stories about families not supporting them and telling them they’re lazy or it’s all in their head, I’m saddened. It truly hurts my heart. I know what it’s like to be ill (I’ve had cancer and adrenal fatigue with severe insomnia) and no one should ever have to be alone or not supported through their times of need.

 

[Hope_eternal]

I am taking a supplement, I ordered it by accident.

My digestive issues have improved dramatically.

I'm suffering from wanting everybody with ME to try it. I am not even through the first bottle of 60 capsules.

Long COVID researchers are looking at it.

A number of other symptoms are shifting. I will take this improvement, gladly,.

I think my gut has stopped leaking. I think the SIBO has cleared out.

Thank you for sharing! I’m going to research this. It sounds like a great supplement.

 

[Zebra]

@Hope_eternal

One last thought regarding viruses that can reactivate during immune suppression ...

In my case HHV-6 and Varicella Zoster were considered likely culprits of my ME/CFS, but I have no real proof of that other than elevated IgG titers well after the onset of my illness. If I had active IgM titers and/or positive PCR testing, then perhaps a physician would have treated me at that time.

Best of luck to you and your son.

 

[Hope_eternal]

@Hope_eternal

One last thought regarding viruses that can reactivate during immune suppression ...

In my case HHV-6 and Varicella Zoster were considered likely culprits of my ME/CFS, but I have no real proof of that other than elevated IgG titers well after the onset of my illness. If I had active IgM titers and/or positive PCR testing, then perhaps a physician would have treated me at that time.

Best of luck to you and your son.

Thank you. I think we need to further investigate this. Back in Sept his GP did a test for viruses, not sure which ones but he did find that my son had a current case of CMV and a reactivation of EBV. He prescribed valacyclovir which did help some with his energy to speak because before it he was barely audible. It also helped him to be able to get out of bed for 20/30 mins a day but that is about it. I’ve read that CMV can’t be treated with valacyclovir and have mentioned it to 2 doctors but they didn’t seem to be concerned and didn’t prescribe anything for it. I have an appt tomorrow with his functional doc again and ask if he needs to be tested for other viruses. Did you end up ever getting any anti virals? Thank you for your note!