Anyone have IBD and in immunosuppressant and diagnosed with ME/CFS?

[Hope_eternal]

Hello,

I’m new here and am frantically searching for help for my 20 yr old son. He has severe penetrating Crohn’s and is currently on a immunosuppressant called Stelara. He recently was diagnosed with ME/CFS. I have been trying to find some guidance on treatment for ME for those already diagnosed with IBD but haven’t had much success. Only came across this one article.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10455565/

Is there anyone here that is currently taking an immunosuppressant for IBD and also diagnosed with ME? I’d love to hear from you. My son has been bedridden with extreme fatigue for a year. He can’t shower, brush his teeth, or get his own food. He does make one trip down the stairs occasionally if I’m asleep and he needs water. This may happen a few times to zero times a week depending on available energy.

I am currently struggling on which medication to switch him to as I don’t want to worsen matters for him. Would appreciate so much hearing from anyone that is or has been in a similar situation to him or knows of someone that is.

Thank you so much for your time.

Wishing you much health on your journey.

 

[Wishful]

Sadly, there isn't any real guidance on treatment for ME even without IBD. Treatments for ME seem to be stumbling across something that works for that one individual. There are a few treatments that work for more than just one person, but there's no way of knowing which one will work for which person. Someone might try dozens of prescription drugs without success, but then have a happy accident discovering that a common kitchen spice provides a major benefit.

With ME, it's reasonably likely that gut disorders can make ME more severe, and there is probably more help available for treating IBD, so you might get some improvement faster by focusing on that problem. I don't know much about IBD, but I'm guessing it might take multiple different treatments and changes in diet together to solve. Some gut dysfunctions can feed back to make the situation worse. It's like restoring a damaged house: fixing an upstairs window won't work well if the foundation is damaged and straining the framing.

FWIW, I had a gut problem (fibre metabolite intolerance) that made my ME symptoms much worse, and I recently fixed that with probiotics, so I'm enjoying long hikes again. I'm not claiming that as a "likely to succeed" treatment, but I think it shows that gut disorders can make ME worse, and that treating that disorder can reduce the ME severity.

Good luck, and welcome to PR.

 

[Hope_eternal]

Sadly, there isn't any real guidance on treatment for ME even without IBD. Treatments for ME seem to be stumbling across something that works for that one individual. There are a few treatments that work for more than just one person, but there's no way of knowing which one will work for which person. Someone might try dozens of prescription drugs without success, but then have a happy accident discovering that a common kitchen spice provides a major benefit.

With ME, it's reasonably likely that gut disorders can make ME more severe, and there is probably more help available for treating IBD, so you might get some improvement faster by focusing on that problem. I don't know much about IBD, but I'm guessing it might take multiple different treatments and changes in diet together to solve. Some gut dysfunctions can feed back to make the situation worse. It's like restoring a damaged house: fixing an upstairs window won't work well if the foundation is damaged and straining the framing.

FWIW, I had a gut problem (fibre metabolite intolerance) that made my ME symptoms much worse, and I recently fixed that with probiotics, so I'm enjoying long hikes again. I'm not claiming that as a "likely to succeed" treatment, but I think it shows that gut disorders can make ME worse, and that treating that disorder can reduce the ME severity.

Good luck, and welcome to PR.

Thank you for your note. Yes, it’s very true there seems very individualized healing protocols involved with ME. Which can be very complicated journeys. I’m overwhelmed reading all the trials and errors people have had to endure trying to get relief from the illness. I have read gut can play a big part in ME. We are working with a functional doctor in “root causes” for the fatigue. I pray this doctor can help him. I’m happy to hear you are doing better and are enjoying hikes again. That gives me hope. Wishing you much health on your journey

 

[Wishful]

We are working with a functional doctor in “root causes” for the fatigue.

The root cause of ME's fatigue-like symptom would be a major breakthrough. At present, no one understands it. There's not even a clear definition of "fatigue", much less a reliable way of quantifying it. I'm not sure what a doctor, functional or not, can do other than "Try this (chosen more or less at random) and see whether you feel less or more active.".

I'm not trying to discourage you from trying doctors. It's always possible that they might find a comorbid disorder that is causing one or more symptoms. To me, expecting help from a doctor for genuine ME problems is not much more likely to help than having some witch doctor in a scary mask trying his techniques (maybe involving a rattle and a dead chicken). Modern doctors simply don't know much more about ME than a witch doctor from 500 years ago.

I'm a supporter of trying to find a treatment via individual experimentation. It is possible to find things that help. I've gotten lucky and found several treatments that helped me greatly. There's no guarantee, and some people have a long list of things they've tried and not found anything that helped (so far), but that doesn't mean that the next one won't help. My preference is to test the cheap, convenient, safe possibilities first, rather than the latest expensive fad drug ("The marketers said that it worked for a patient!" <without proof that the patient actually had ME>).

Also, if you try herbs&spices, if they don't work for ME, at least you can use them in cooking.

 

[Hope_eternal]

I'm a supporter of trying to find a treatment via individual experimentation. It is possible to find things that help. I've gotten lucky and found several treatments that helped me greatly. There's no guarantee, and some people have a long list of things they've tried and not found anything that helped (so far), but that doesn't mean that the next one won't help. My preference is to test the cheap, convenient, safe possibilities first, rather than the latest expensive fad drug ("The marketers said that it worked for a patient!" <without proof that the patient actually had ME>).

Thanks for your reply. How do you even know what to try? How do you know if you truly have ME/CFS? It seems there is no real test for that.

 

[Wishful]

How do you even know what to try?

I don't know what to try. I just try things, keep note in my food/activity/symptoms journal, and pay attention to changes in my symptoms. I tried a multivitamin/mineral tablet and found a benefit, and eventually narrowed it down to iodine, and later identified the actual benefit came from the thyroid hormone T2 (made from iodine). Likewise, I noticed some symptoms not showing up as expected after I had a meal of curry. I narrowed that down to cumin, and specifically cuminaldehyde. Something in beef improved my sleep, and that was conjugated linoleic acid. Really, the most important part is paying attention to changes in symptoms. Once you've noticed a change, you can sleuth your way to the actual factor.

I've tried other herbs&spices and had either no effect or a negative effect. The same applies to other foods that I chose just to try something different. I've also chewed on random bits of vegetation, because I don't know for sure that spruce needles, for example, won't be helpful for me. Dandelion root did provide a slight benefit, but stopped working after only a short time (very common with ME treatments). The point is, you don't know for sure that you don't have an effective treatment for your son's ME sitting on your kitchen shelf or out in the yard or in your local grocery store (or maybe that ethnic store with weird dried mushrooms).

Experimentation isn't simple, because you don't know that while a tsp of cinnamon didn't work, 2 tsps might work, or taking it for 5 days didn't work, but maybe it would start working on the 7th day. Some treatments may be effective with low doses, and stop working if the dosage is too high. There's no knowledge-based way to know how much to try for how long, so it comes down to personal judgement. Most of my treatments showed effects within one day (one exception took 5 days), so I don't bother with long tests anymore.

How do you know if you truly have ME/CFS?

We don't. We just check the criteria and judge for ourselves. That's all doctors can do too. Even the world's top ME expert doesn't know for sure if someone has ME, because we don't know what ME is yet. They don't know which treatment will work for that individual either, since we all respond so differently to treatments. We're all waiting for better research ... or for someone to accidentally stumble across a treatment that works reliably for a majority of PWME.

 

[Slushiefan]

Usually I would restrict myself from replying to a request like this, because of the risk associated with dispensing medical advice, particularly in CFS.

Still, if others hadn't taken such risks in these forums, I wouldn't have made any of my advances.

Is there anyone here that is currently taking an immunosuppressant for IBD and also diagnosed with ME?

I am one such person. I am currently having some success with Rinvoq (upadacitinib). Rinvoq is a JAK inhibitor that comes in once-a-day tablet. It is an FDA approved treatment for severe Crohn's among a bunch of other things.

I tried anti-tnf's (Humira and Remicade) with no improvement at all some years ago. It is easy to get wrapped up in thinking the risks might not be worth the effort when your 'in it', more so if you are making those decisions for someone else. I had given up on biologics after that failure, but the severe pain from my arthritis drove me to take another stab at biologics again. I am so very glad now that I did give a different biologic a try.

I have not been diagnosed with Crohn's or IBD definitively, but I definitely have those symptoms, and have been to the ER for treatment of recurring diarrhea and severe cramping with no findings for cause (eg bacterial or other pathogens). I pretty much back-burnered treating gastrointestinal symptoms, focusing on the fatigue and pain first (a CFS patient can only visit so many specialists at a time, so we learn to prioritize our issues). Given some effort on my part, I am sure it would reach a diagnosis of at least IBD.

I am diagnosed with CFS, Fibromyalgia, Psoriatic Arthritis, and Non-radiographic Axial Spondyloarthritis.

My CFS is extremely disabling, but I am a step above bedridden.

Re: Rinvoq: It is a gradual process of improvement with Rinvoq, kind of improving all symptoms at once at 30 day intervals. I have been taking it for 60 days now, and I find it has notably improved my pain, fatigue, and brain fog, and reduced my IBD symptoms.

I don't really know for sure but my assumption is that the cells that primarily drive my particular inflammation are going through apoptosis aka a natural time related die-off every 30 days, and Rinvoq is slowing down the driving process behind those cells, meaning they don't get replaced. It is just a guess though.

My point is - if one biologic is not working, my experience is it is worth trying another.

FYI - Rinvoq seemed a better choice for me b/c it impacts multiple inflammatory systems via the JAK system. It might be better for you too, but there is a lot in that decision, including cost.

 

[Hope_eternal]

Usually I would restrict myself from replying to a request like this, because of the risk associated with dispensing medical advice, particularly in CFS.

Still, if others hadn't taken such risks in these forums, I wouldn't have made any of my advances.



I am one such person. I am currently having some success with Rinvoq (upadacitinib). Rinvoq is a JAK inhibitor that comes in once-a-day tablet. It is an FDA approved treatment for severe Crohn's among a bunch of other things.

I tried anti-tnf's (Humira and Remicade) with no improvement at all some years ago. It is easy to get wrapped up in thinking the risks might not be worth the effort when your 'in it', more so if you are making those decisions for someone else. I had given up on biologics after that failure, but the severe pain from my arthritis drove me to take another stab at biologics again. I am so very glad now that I did give a different biologic a try.

I have not been diagnosed with Crohn's or IBD definitively, but I definitely have those symptoms, and have been to the ER for treatment of recurring diarrhea and severe cramping with no findings for cause (eg bacterial or other pathogens). I pretty much back-burnered treating gastrointestinal symptoms, focusing on the fatigue and pain first (a CFS patient can only visit so many specialists at a time, so we learn to prioritize our issues). Given some effort on my part, I am sure it would reach a diagnosis of at least IBD.

I am diagnosed with CFS, Fibromyalgia, Psoriatic Arthritis, and Non-radiographic Axial Spondyloarthritis.

My CFS is extremely disabling, but I am a step above bedridden.

Re: Rinvoq: It is a gradual process of improvement with Rinvoq, kind of improving all symptoms at once at 30 day intervals. I have been taking it for 60 days now, and I find it has notably improved my pain, fatigue, and brain fog, and reduced my IBD symptoms.

I don't really know for sure but my assumption is that the cells that primarily drive my particular inflammation are going through apoptosis aka a natural time related die-off every 30 days, and Rinvoq is slowing down the driving process behind those cells, meaning they don't get replaced. It is just a guess though.

My point is - if one biologic is not working, my experience is it is worth trying another.

FYI - Rinvoq seemed a better choice for me b/c it impacts multiple inflammatory systems via the JAK system. It might be better for you too, but there is a lot in that decision, including cost.

I’m so sorry I missed your reply! Thank you so much for this information. My son’s gastro is changing his medication to skyrizi. He’s currently on Stelara. I pray the new med helps him feel better. It’s so very difficult not being able to do anything to free him from this debilitating fatigue. Here we are Christmas and he lay in bed while we try to make him feel included by his bedside giving gifts that he can’t enjoy because he doesn’t have the energy…Ug my heart aches so much for him. Thanks again for responding. I hope the rinvoq treatment continues to bring you relief! Happy Holidsys!

 

[Hope_eternal]

Hi @Slushiefan,

I hope you are doing well. I was wondering if the rinvoq treatment was still helping you. I’m still trying to decide if it’s worth the risk. I’m not having much luck finding any data on CFS and biologics. So far only came across that one article in my original post. Thank you again for replying to my earlier post. I hope you are continuing to see improvements with the new medication.

 

[Slushiefan]

Hi @Slushiefan,

I hope you are doing well. I was wondering if the rinvoq treatment was still helping you. I’m still trying to decide if it’s worth the risk. I’m not having much luck finding any data on CFS and biologics. So far only came across that one article in my original post. Thank you again for replying to my earlier post. I hope you are continuing to see improvements with the new medication.

Hello Hope_eternal, I am happy to share the little I know.

There is very little in the way of hard data to support the conclusion that CFS is generally improved or treated effectively by any known biologics at this time. In the past Remicade and Enbrel have been implicated in potentially bringing a few patients to CFS remission, but at least in the case of Remicade, those few successes were never borne out in larger scale studies.

In my case, I have comorbid Psoriatic Arthritis and other arthralgias with CFS (now mostly housebound), for about 30 years now.

Some 7 years ago, the biologics I trialed without any observable effect on my arthritis conditions or CFS included Remicade and Humira. At that time I also started and have remained on methotrexate, which has improved my fatigue and joint pain a minor amount.

Recently I trialed Rinvoq, and with methotrexate this has had a sizable affect on my arthritis conditions, and a small effect on my CFS. It relieved the stubborn 'hard edge' of my brain fog, which allowed me the ability to read small passages again without exhausting myself or creating headaches and excessive fatigue. It also relieved some of the 'sick' feeling like I have the flu (called malaise), which I had nearly constantly (now this occurs frequently), and it relieved some of the fatigue, weakness, and exhaustion which used to hold me back from even brief conversations.

Overall - I honestly can't be sure if Rinvoq improved CFS, or if it is just the improvements in my arthritis which had the positive effects.

I do wish I had positive results to share about the biologics, but I can only say with certainty that no biologic I have trialed has resulted in more than a minor improvement in my CFS.

 

[Wishful]

Overall - I honestly can't be sure if Rinvoq improved CFS, or if it is just the improvements in my arthritis which had the positive effects.

My opinion is that ME is generally worsened by immune activation, so reducing that (arthritis) activation should reduce ME severity. ME probably doesn't care whether the IL-<number> rises due to infection, autoimmune response or injury (including muscle strain); it will activate glial cells or whatever and your symptoms will rise.

but I can only say with certainty that no biologic I have trialed <yet> has resulted in more than a minor improvement in my CFS.

It's a matter of luck in finding the right molecule for you. I've gotten lucky several times, without trialling a lot of drugs or non-drugs. Just lucky. So, keep hoping and trying. If you don't try anything new, you guarantee that you won't find a treatment that works. Well, ME does change over time, so there's always a slight possibility that something you've eaten daily for years will suddenly provide an improvement, but I think that probability is a lot lower than from trying new stuff.

 

[Slushiefan]

@Wishful I agree completely with your interpretation.

 

[Hope_eternal]

Hello Hope_eternal, I am happy to share the little I know.

There is very little in the way of hard data to support the conclusion that CFS is generally improved or treated effectively by any known biologics at this time. In the past Remicade and Enbrel have been implicated in potentially bringing a few patients to CFS remission, but at least in the case of Remicade, those few successes were never borne out in larger scale studies.

In my case, I have comorbid Psoriatic Arthritis and other arthralgias with CFS (now mostly housebound), for about 30 years now.

Some 7 years ago, the biologics I trialed without any observable effect on my arthritis conditions or CFS included Remicade and Humira. At that time I also started and have remained on methotrexate, which has improved my fatigue and joint pain a minor amount.

Recently I trialed Rinvoq, and with methotrexate this has had a sizable affect on my arthritis conditions, and a small effect on my CFS. It relieved the stubborn 'hard edge' of my brain fog, which allowed me the ability to read small passages again without exhausting myself or creating headaches and excessive fatigue. It also relieved some of the 'sick' feeling like I have the flu (called malaise), which I had nearly constantly (now this occurs frequently), and it relieved some of the fatigue, weakness, and exhaustion which used to hold me back from even brief conversations.

Overall - I honestly can't be sure if Rinvoq improved CFS, or if it is just the improvements in my arthritis which had the positive effects.

I do wish I had positive results to share about the biologics, but I can only say with certainty that no biologic I have trialed has resulted in more than a minor improvement in my CFS.

Thank you! I appreciate you sharing your experience with me. It sounds like you’ve had some nice improvements. I’m very happy to hear that. I pray that continues for you. Thanks again!

 

[Hope_eternal]

It's a matter of luck in finding the right molecule for you. I've gotten lucky several times, without trialling a lot of drugs or non-drugs. Just lucky. So, keep hoping and trying. If you don't try anything new, you guarantee that you won't find a treatment that works. Well, ME does change over time, so there's always a slight possibility that something you've eaten daily for years will suddenly provide an improvement, but I think that probability is a lot lower than from trying new stuff.

I’m trying to be brave for him. I think I’m having analysis paralysis! Information overload is making it hard for me to make decisions. I do agree we need to try something. My fear is that something we try might make things worse. And that terrifies me.

 

[Wishful]

My fear is that something we try might make things worse. And that terrifies me.

I have read of people who have regretted (long-term worsening) some experiments. My experience is that while I've discovered plenty of foods, supplements, etc, that have made me feel worse, none of them made me feel worse for more than a couple of days. From that perspective, I have no worries about trying some exotic spice or other possible treatment that is generally safe for human consumption. My successes greatly outweigh the brief worsenings.

I haven't tried any new herbs or spices for a while, and I'm sure there are some I haven't tried. I'll have to look next time I'm shopping. Maybe some package of spice will wave a little flag and say "Pick me!"