Mesalazine/Mesalamine - anti-inflammatories

[Joel]

My gut wasn't that bad when I got ME. I had a bit of Irritable bowel syndrome, but nothing awful. I don't think my gut was quite right but I 100% didn't have inflammatory bowel disease (IBD).

I later had long term antibiotics for suspected Lyme and subsequently got ulcerative colitis, induced by the antibiotics.

Stopping the antibiotics made the UC better very quickly but I was also put on mesalazine, a 5-aminosalicylic acid (5-ASA) drug which is used to lower inflammation.

I later tried to lower the mesalazine dose from the maximum, but when I did I felt dreadful - my ME symptoms got a lot worse. As a result I've remained on the maximum dose. If I forget to take a dose, a few hours later I start feeling awful - again, I don't really think it's my UC getting worse, it's the inflammation I get with ME. It's not my gut that starts feeling bad, it's the muscles in my legs, loads more brain fog and confusion, and overall exhaustion, fatigue. I can pretty much feel inflammation rising in my blood. Although extra-intestinal manifestations of UC are unrecognized and it's likely I have some arthritis related to the UC, I'm sure that the mesalazine is working on my ME symptoms here, lowering whatever is driving it.

It's possible that the source of this inflammation is the gut, but it's unlikely to be local and restricted to the colon because when I have forgotten a dose (which happens about once a month because I can't remember to take my tablets) upon realising I quickly take the forgotten dose and I start to feel better a couple of hours later. It's not possible that the tablets have reached my colon by then. The type of mesalazine I take is Pentasa which is a continuous release tablet and it starts to release in the small intestine. So either it's lowering inflammation there, it's getting absorbed into my blood then making it's way to the colon (in which case this could all be UC inflammation after all), or it's absorbed into my blood and lowering inflammation there or at some other location.

Before I had UC I had some tests for inflammatory markers. Antibiotics lowered some of them, as they are known to do. But PGE2 didn't lower. It actually got higher on the treatment and stayed higher while I had colitis. I'm pretty sure the mesalazine is lowering this, and/or maybe some other type of inflammation that I've not had tested.

Don't think there have been any studies of mesalazine in ME/CFS, which is a pity.

The messlazine isn't a cure, I still have loads of inflammation but I guess it would be worse without it. I wish I knew for sure what it's lowering so I could find a more potent drug to take.

Tagging @Dr.Shaqun as he's shown some interest in this topic.

Edited story to make it shorter.

 

[ana_costa]

Hey Joel, I hope you're doing well. It's been a while since you've posted this, and I don't know if you'll read my reply, but I would love to know if you have any updates. My CFS symptoms have also improved a lot since I got started on Pentasa a few months ago, and it would be great to hear more from you. Thanks!

 

[Studygirl]

I took mesalazine for suspected crohn's and my ME/CFS symptoms improved so much, I almost felt like a healthy person. I didn't expect anything from the treatment because I didn't suspect crohn's but I felt so much better in general. Unfortunately my symptoms came back after a month. And it turned out that I don't have crohn's so I stopped taking mesalazine. I would like to hear other experiences

 

[butter.]

Hey Joel, I hope you're doing well. It's been a while since you've posted this, and I don't know if you'll read my reply, but I would love to know if you have any updates. My CFS symptoms have also improved a lot since I got started on Pentasa a few months ago, and it would be great to hear more from you. Thanks!

Hey!

Hiw severe are you?
What got better, is it sustained?
What has it vern prescribed for for you?

Thank you.

 

[ana_costa]

Hey @Studygirl and @butter.

Apologies for my late reply. I didn't receive any notification for your messages and I'm a new member, so I'm still figuring out how things work

I first started getting CFS symptoms in January 2017. Over the years I have been improving slowly but steady after changing many habits, introducing cognitive behavioral therapy, very light physical therapy, temporarily leaving work, etc. I would say at this point I have an almost normal life, if I am responsible with my sleep schedule, respect my routines and don't get stressed. I still can't exercise, but I can walk for a few miles without crashing, which is a major improvement from when I got sick, since I could barely walk or talk at the time.

I have been on Pentasa 1g suppositories for about 10 months for suspected ulcerative proctitis (which is still unconfirmed because the colonoscopy was inconclusive). To be honest it's still working for me, but let me point out: it didn't reverse my fatigue, I think it improved as a side effect. I had persistent symptoms of reactive hypoglycaemia which worsened my fatigue a lot. Ever since I got started on Pentasa, I would say those hypoglycaemia crises improved by 90% (I still feel weird if I don't get enough sleep), and the fatigue improved as a result. It also helped with brain fog a lot, I noticed major changes at work.

Did you have similar symptoms? Did Mesalamine work the same way for you, or did you notice something else? I would love to hear from you!

Thanks!

 

[Hutan]

Welcome to the forum @ana_costa. The fact that an anti-inflammatory seems to help is very interesting. I am pretty sure that ibuprofen helps my ME/CFS symptoms. I agree with @Joel that it's a shame there hasn't been more trials of anti-inflammatories.

I had persistent symptoms of reactive hypoglycaemia which worsened my fatigue a lot. Ever since I got started on Pentasa, I would say those hypoglycaemia crises improved by 90% (I still feel weird if I don't get enough sleep), and the fatigue improved as a result.

I googled for symptoms of reactive hypoglycaemia:

• Anxiety
• Blurry vision
• Racing heart
• Confusion
• Dizziness
• Irritability
• Headache
• Hunger
• Light-headedness
• Sweating
• Shaking
• Trouble sleeping
• Feeling faint
• Extreme tiredness
• Weakness

A lot of those are also symptoms of PEM, even though blood sugar isn't abnormal in PEM. @ana_costa, are you certain you had hypoglycaemia (i.e. confirmed by blood sugar test)? Does it seem possible to you that the 'hypoglycaemia crises' are actually PEM?

 

[ana_costa]

Hey @Hutan,

Thanks for the warm welcome

Great question! You're right, there are a lot of commonalities, but I suspect it's two different (possibly interconnected) things.

I've never been tested for low blood sugar in the moment, but I have a history with Hypoglycaemia. About 15 years before I got CFS I had to run for 12 minutes straight at school, and I hadn't eaten anything for 4 hours. This triggered major HG episodes (both normal and reactive) for a while, which ended up resolving over time (I wonder if this episode could tell me anything about developing CFS later in life).

These crises that I had now with CFS feel like those HG episodes. To me, the feeling of anxiety in PEM is more like an urgency to lie down, whereas with HG there's feeling of 'despair' that doesn't necessarily involve exertion. It's more like a continuous stress episode, so I'm inclined to say I have both.

The funny thing about Pentasa is that the suppositories I have been prescribed are low-dose and act locally, so I don't understand why it's having a more systemic effect. Your experience with ibuprofen is very interesting though. I've never tried it for fatigue because it gives me painful stomach cramps, but I wonder if more people have the same experience as you do..

 

[SNT Gatchaman]

(Apologies, off original topic)
Hi @ana_costa, if you're interested in checking your blood sugars, you can get a continuous interstitial glucose monitor. E.g I'm currently using the Freestyle Libre 2 by Abbott, which is a "wearable" that you can connect to your phone. It can show you if you're hypoglycaemic e.g. overnight.

 

[ana_costa]

(Apologies, off original topic)
Hi @ana_costa, if you're interested in checking your blood sugars, you can get a continuous interstitial glucose monitor. E.g I'm currently using the Freestyle Libre 2 by Abbott, which is a "wearable" that you can connect to your phone. It can show you if you're hypoglycaemic e.g. overnight.

Hey @SNT Gatchaman, that's a great idea. And I can even test to see if there are differences while on and off Pentasa, I'll definitely look into that. Do you have CFS + HG?

 

[SNT Gatchaman]

@ana_costa my working diagnosis is Long Covid from an asymptomatic infection. I don't officially have any glucose issues, but I'm gathering data.

 

[Joel]

Hey Joel, I hope you're doing well. It's been a while since you've posted this, and I don't know if you'll read my reply, but I would love to know if you have any updates. My CFS symptoms have also improved a lot since I got started on Pentasa a few months ago, and it would be great to hear more from you. Thanks!

Hi Ana, sorry for the delay in my reply. I'm not able to be here much lately.

My situation is complicated because of multiple health conditions. ME is my worst illness but I find the ulcertative colitis impacts the ME in addition. The UC added an extra layer of inflammation on top of what I was experiencing already before I got the UC so it made my overall health much harder (which I had not even thought was even possible at that time because my health had already been smashed to pieces by ME and I was not coping with it. In fact the ME alone was so bad that I was absolutely desperate, desperate for even a tiny tiny improvement and that is why I had the antibiotics and so on in the hope of improving my ME, and that is the treatment that unfortunately gave me the UC in the first place.).

I am more ill if I don't take my Pentasa but Pentasa doesn't take away my ME sadly, I think it just reduces some of the extra inflammation I seem to get from UC all the time, because even when under control my UC is still simmering away, so I expect to be on the Pentasa for life. I wish I could take a bigger dose but I am already on the maximum, which normally is only the amount people take when they initially get UC then they drop to half dose but that has not been possible for me as I get too ill. The Pentasa helps keep a lid on it along with diet and so on.

I think it's an interesting question to ask whether Pentasa could help other people with ME - people with only ME/CFS. Would it help a bit? I don't know. Maybe it would make no difference and all I am getting is a reduction in the extra additional inflammation I get from UC. This is part of the reason why they don't allow people with concurrent illnesses into clinical trials! It's impossible to tease it all out. But you never know, maybe Pentasa would help people with just ME make a small improvement? I'd love to see a trial in case this common, fairly safe drug can help people.

It's great to hear that your CFS symptoms have improved a lot by the sounds of things. I really wish I was in the same boat. I'm pleased for you though!

 

[Haveyoutriedyoga]

Hey @Hutan,

Thanks for the warm welcome

Great question! You're right, there are a lot of commonalities, but I suspect it's two different (possibly interconnected) things.

I've never been tested for low blood sugar in the moment, but I have a history with Hypoglycaemia. About 15 years before I got CFS I had to run for 12 minutes straight at school, and I hadn't eaten anything for 4 hours. This triggered major HG episodes (both normal and reactive) for a while, which ended up resolving over time (I wonder if this episode could tell me anything about developing CFS later in life).

These crises that I had now with CFS feel like those HG episodes. To me, the feeling of anxiety in PEM is more like an urgency to lie down, whereas with HG there's feeling of 'despair' that doesn't necessarily involve exertion. It's more like a continuous stress episode, so I'm inclined to say I have both.

The funny thing about Pentasa is that the suppositories I have been prescribed are low-dose and act locally, so I don't understand why it's having a more systemic effect. Your experience with ibuprofen is very interesting though. I've never tried it for fatigue because it gives me painful stomach cramps, but I wonder if more people have the same experience as you do..

I have a similar situation, before ME I got migraines with prodrome/postdrome a lot, which increasingly came with major carb cravings, thirst, increased urination, fatigue, confusion, paleness, dizziness, etc etc etc (oh, and the pain). I even got myself a glucose reader and found that I was in the high threes and low fours a few hours after eating (when having symptoms). I got these symptoms after exercise AND after food, and I get it a bit when I don't eat enough. I get this much less now, but this afternoon had an 'episode' after a heavy carb lunch.

It seems there is disagreement on what reading counts as hypoglycaemia (some say up to 4.9, others say towards 3) and then the home gadget can be 20% off.

Anyway it feels a lot like some of my crashes, and it got me reading about metabolic and other diseases that often come with reduced exercise tolerance and fatigue.

Not sure where to go with it because the GP will put it down to my ME and I haven't got access to a professional glucose monitor.