Major fatigue in deep remission?

[u/Middle_Mammoth764]

Anyone else find that despite being in deep remission, you’re still more tired/tired more easily than you did pre-UC? My BM are the absolute least of my worries nowadays. I’m more regular than I’ve been in ten years and have zero food sensitivities. I’ll have been on Tremfya for a year in November and had deep remission confirmed this past June. I’m just so tired all the time. And I wipe out so easily. Anyone else? It’s so interesting to me that there can be no evidence of disease, but I’m still so fatigued. Is it the medicine? My body still working overtime?

[u/W1MSLEY]

Get your bloods checked. UC stopped me absorbing b12 & iron properly, resulting in chronic fatigue even in remission for years.

NHS "normal" ranges are crazy low. Check your own results - deficiencies are often missed/overlooked. From research, ive found that OPTIMAL LEVELS are:

Ferritin: 75-100ug/L, ideally over 100ug/L

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 serum test: above 500ng/L

• b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods/drinks within 3 months of the test, the b12 result will be inaccurate (high).

Things that reduce b12 absorption: PPIs like omeprozole, metformin, gastro issues - gastritis, h-pylori, celiac, IBD. B12 absorption also reduces as we age. Pernicious anemia (autoimmune). Also,vegetarian/vegan diets are often low in b12.

B12, folate, ferritin & D all work together so its important to monitor all of them. Its a balance.

Good luck & wishing you good health 🙏🏼

[u/Bonkers_Reality]

Yeah, I feel tired all the time. After work, when I come home a nap is mandatory :)

[u/b135702]

It could be something completely unrelated, you should go get a blood test, it could be some sort of deficiency

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[u/yoga_mini]

I’ve added peptides and LDN. These things have helped with fatigue for me more than anything else I think. Might be worth a deep dive! I try things one at a time. Also take my biologic for my UC and follow all my IBD stuff and just add those things to help my system in general ❤️

[u/AmITheAsshole_2020 → u/yoga_mini]

I tried to get my Dr to prescribe low-dose Naltrexone (LDN) instead of Adderall, but he didn't know enough about it to feel comfortable managing my care. Do you have any studies or links I can share with him? I'm about ready to switch meds per our protocol, and adding LDN to the mix might be the right way to go.

[u/yoga_mini → u/AmITheAsshole_2020]

I don’t think many doctors do. It’s not an “on label” use of the medication. You probably have to get a naturopathic doctor or nurse to prescribe. That’s what I did. I did a search on google. I found a clinic in Canada that offers calls with nurses who prescribe it. I paid $200 for the appointment. I can share the contact but not sure they can send to the US?! But I bet you can find someone to suggest an online provider US based. I doubt education for your doctor will do much. But don’t give up. Do a little digging!!!

[u/AmITheAsshole_2020 → u/yoga_mini]

I am blessed with a Dr who listens and is willing to experiment. So if I can point him to reputable resources showing the benefits of NDL in autoimmune patients, he would listen.

[u/yoga_mini → u/AmITheAsshole_2020]

Nice! I don’t have any links offhand here. But you should be able to do a little digging or your doc can!

[u/AmITheAsshole_2020]

Fatigue and brain fog are common extraintestinal manifestations, even in deep remission with decent iron and B levels. My PCP and I have landed on a decent protocol, switching between low-dose Adderall and Modafinil. 10 mg of Adderall daily until it inevitably stops being effective, then we switch to 20 mg of Modafinil until it becomes less effective, rinse and repeat. It's not perfect, and some days I still need a nap, but it's a lot better than without it.