Has anyone been having issues with fatigue since taking Humira? I've been on Humira for 2.5 years and have been experiencing debilitating fatigue for the last 4 months. I have never felt like this before in my life. All blood work has come back ok...?? I took it upon myself to stop my injections one week ago to see if there will be any change. I also have a sore back quite often, which I've never had before either...
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Extreme fatigue on Humira
- Thread starter sntwhite
- Start date
Spooky1
Well-known member
- Location
- South Northants
I have extreme fatigue, not the result of Humira. that made no difference. lower back pain is also not a result of Humira either, both crohns.
David
Co-Founder
- Location
- Naples, Florida
A couple things come to mind that might be discussed with your doctor:
1. Common causes of fatigue in people with Crohn's Disease are vitamin B12 deficiency (if you are below 400pg/ml you are probably deficient, do not let them tell you that you are low normal!), dehydration, anemia, or a combination thereof.
2. Humira can lead to Drug-Induced Lupus Erythematosus (DILE) -- those of you with arthritis-like symptoms along with your fatigue may want to consider this a possibility. Other common symptoms are rash, fever, and weight loss.
I hope that helps someone and hope you all feel better soon!
1. Common causes of fatigue in people with Crohn's Disease are vitamin B12 deficiency (if you are below 400pg/ml you are probably deficient, do not let them tell you that you are low normal!), dehydration, anemia, or a combination thereof.
2. Humira can lead to Drug-Induced Lupus Erythematosus (DILE) -- those of you with arthritis-like symptoms along with your fatigue may want to consider this a possibility. Other common symptoms are rash, fever, and weight loss.
I hope that helps someone and hope you all feel better soon!
Humira makes me extremely fatigued. I'm on the maximum dose, and I'm not just tired the day of the injection. I'm tired 5 out of 7 days every week. It takes great effort for me to get up, take a shower, and walk downstairs for breakfast. It lasts all day, too. I was on remicade before and was tired only one day a week. I put up with it because it is the only medication that works for me.
Hope you start feeling better soon!
I have some days when I feel fatigued, others fine. With some of you saying it's 5 days a week(or whatever amount), does that correlate with your humira injections, or not necesarrily? I got down to 10mg of pred 2 weeks ago, and today is my first 7.5mg day. Iv read on here, that weaning to 10 and under, is the worst for most people, once on long term pred. I am having a lot of wean symptoms, even on 10, so im a bit worried how the next 6 weeks weaning will go. Im not sure if it's only the pred, but do any of you have fatigue, yet disturbed sleep? Like you have to go toilet, but it's not that urgent, then it's hard to sleep?... I'm thinking if it's only pred, I'll do 7.5-10-7.5 for a week, then a week of 7.5, then the same weaning to 5. A lot of people say they feel horrible once down to 5, so I might even go slower after that.
Fatigue is a common side effect of humira alone though, as well as headaches and flu symptoms. If youv only just started it, give it a few months, as it can take 3 to fully work.
Fatigue is a common side effect of humira alone though, as well as headaches and flu symptoms. If youv only just started it, give it a few months, as it can take 3 to fully work.
Hi! New member here. DH is actually the one with Crohn's Disease, which he has had for 40+ years. For several years, his energy level has been low allowing him to do some yard work, home upkeep only until about noon each day. Then he was pretty much done for the day. Recently however, he is extremely fatigued, even to the point that getting up, showering, eating breakfast tires him to the point of needing to lay down. He has been on Humira for a few years, he actually started it before it was formally approved for Crohn's. We have seen his Hemotologist, (chronically anemic), his Cardiologist, (recently had a cardiac ablation) and will see his kidney doc in the next couple of weeks. DH has very little colon left and has two abdominal fistulas draining to the surface. He takes nutritional supplements including B12 injections. So far, we are at a loss as to why what little energy he had has disappeared. I saw the post about fatigue and Humira and will be talking to his Gastro about that soon. He has such a complicated history but this loss of what little energy he had each day has really depressed him. Hoping we can get something figured out soon. He is 5'9" and only weighs about 135 clothed. This energy loss is causing him to become lethagic and he is really disinterested in eating/drinking. Not good for a man in his physical condition! What to do, what to do?
David
Co-Founder
- Location
- Naples, Florida
Hi Rose and welcome to the community!
1. What was your husband's B12 level last time he was tested?
2. Are they treating his anemia?
3. Has the fistulas increased output since he lost all his energy?
4. We also have a wiki entry on fatigue that may provide some additional ideas to discuss with your doctor.
5. Since he's on Humira and due to where you live (and that he would do yard work) I would definitely bring up the idea of fungal infections with your doctor. Blastomycosis, coccidioidomycosis, and histoplasmosis are some of the more common ones warned about with Humira.
Again, welcome to the community. I hope your husband is up and at it soon!
1. What was your husband's B12 level last time he was tested?
2. Are they treating his anemia?
3. Has the fistulas increased output since he lost all his energy?
4. We also have a wiki entry on fatigue that may provide some additional ideas to discuss with your doctor.
5. Since he's on Humira and due to where you live (and that he would do yard work) I would definitely bring up the idea of fungal infections with your doctor. Blastomycosis, coccidioidomycosis, and histoplasmosis are some of the more common ones warned about with Humira.
Again, welcome to the community. I hope your husband is up and at it soon!
Spooky1
Well-known member
- Location
- South Northants
sounds just like me but i'm not on humira. i have been like this for years. am upping the b12 and am trying d3, i generally take a strong b vit complex and zinc, i have a liquid feed and i am also trying to find energy from somewhere. TBH it is just a relief to have found this site (i wish to god i had known about it when it first started). its great that i can identify with others and i'm not suffering alone. welcome and wish hubby best wishes from us fellow sufferers,
David
Co-Founder
- Location
- Naples, Florida
spooky, how much zinc do you take per day?
Spooky1
Well-known member
- Location
- South Northants
about 50mg i think this is quite a lot, but i'm not sure.
Thanks for your response and welcome, David! To answer your questions, I don't know what B12 levels are currently. He has had recent blood tests, but don't know if B12 levels were checked. He takes monthly injections of 1cc per months and is faithful in doing so. They tried to treat his anemia in the past with Venifor and Infed infusions and Procrit injections, none of which helped. He gets a blood transfusion when his count gets to approximately 8. Recent iron levels were good, however, and his count was 10.0 which is good for him. The fistula output has remained the same overall. He utilizes ostomy products to collect the drainage and has been going through supplies very quickly because of leaking issues. This in and of itself is a big drain on him physcologically. Those supplies are costly and we struggle to get them covered under Medicare. He has not had any other symptoms, such as fever, sweats, chills, headache, etc., so I wouldn't think the fatigue is a result of any infection, but will ask about the fungal infections you mentioned. Thank you for the link to the info on fatigue. I am just wondering if he isn't just nutritionally depleted and am unsure as to whether that would show up in any of the tests he has had. He saw an Internist who is in practice with his Cardiologist yesterday and she was stumped. We are going to try reducing his Atenolol from 50mg a day to 25mg as one of the side effects from it is extreme fatigue. Other than that, she didn't have a clue.
David
Co-Founder
- Location
- Naples, Florida
Be careful with your zinc supplementation. Zinc toxicity is a very real thing and can happen at levels as low as 50mg.
David
Co-Founder
- Location
- Naples, Florida
Rose,
I would find out what his specific B12 levels are. 1cc may not be enough to get him to optimal levels.
Your theory of nutrient depletion is a good thought as well. Has he utilized any form of enteral nutrition?
I would find out what his specific B12 levels are. 1cc may not be enough to get him to optimal levels.
Your theory of nutrient depletion is a good thought as well. Has he utilized any form of enteral nutrition?
Spooky1
Well-known member
- Location
- South Northants
Really interesting link there David, thanks very much for that. i might reduce to 30mg.
I am totally opposite. After Humira I am hiking in the hills again, and thats years since I have had the energy to do. Been on it since x.mas time. Initially it was very good, but then my stricture started acting up, so have doubled the dose now. I take 40 mg every week, allong with Methotraxeate and D folat
Spooky1
Well-known member
- Location
- South Northants
really pleased its helping you. could you send some of that hiking energy my way please!
Just a quick update on DH. I took him to the ER on 6/30, because we were afraid he was dehydrated. They said he was only "slightly" dry and gave him half a liter of fluids. ER doc did mention that a side effect of Atenolol, (blood pressure/heart medication), which DH takes, is extreme fatigue. We saw an internist last week, they did echo of heart, that doc said she didn't have a clue as to what could be causing extreme fatigue since Crohn's didn't seem to be rearing it's ugly head and Echo was fine. I mentioned what ER doc told us about Atenolol and she said drop dosage to 25mg a day. Within a few days, DH was feeling better, we kept checking his blood pressure and found it to be very low. We decided to drop the night time dose of Atenolol and he has been feeling some better each day. However...(isn't that always a "but" or a "however"?), he saw the kidney doc Monday, she said okay about stopping the Atenolol, but your blood pressure is too low, pulse too high and you are really lacking in Vit D and albumin with no protein in the urine and you're dry. So today, we spent 5 hours getting fluid and albumin. DH ate the best today he has eaten in a month. DH sees 5 "ologists" and it took a more or less random trip to the ER and an ER doc to get help! Oh yeah, and about $6,000. So the moral of this story is don't overlook drug side effects even for a drug you have been taking for awhile! Take care everyone!
David
Co-Founder
- Location
- Naples, Florida
That's great, I'm so pleased to hear he's doing better. 
Thanks for updating us!
Thanks for updating us!
Since Remicade is no longer effective in my management of Crohn's and Behcet's, my gastroenterologist and rheumatologist have suggested that I start Humira--the only other anti-TNF available in Canada to treat Crohn's.
I had had one injection years ago that left me with crippling fatigue. I'm wondering about others experiences in overcoming this side effect and how long it took.
I'm also wondering how effective the Humira has been for those of you who lost response to Remicade.
Thanks in advance for any help you may be able to provide!
I had had one injection years ago that left me with crippling fatigue. I'm wondering about others experiences in overcoming this side effect and how long it took.
I'm also wondering how effective the Humira has been for those of you who lost response to Remicade.
Thanks in advance for any help you may be able to provide!
Spooky1
Well-known member
- Location
- South Northants
people suffer extreme fatigue with crohns disease anyway. I haven't tried Remicade as the gastro blokes say they are the same, so if I fail on one I would probably fail on the other. Do you have joint flare ups at all cos this can bring extreme fatigue too as can inflammation in the body.
good luck
good luck
Hi,
I take humira for psoriasis for several years now with complete remission.
I too started suffering from devestating fatigue after about one year of treatment.
It's not a common side effect of the drug but it's definitely caused by it. I stopped injections for a couple of month and the fatigue decreased. With contiuation of injections the fatigue returned.
I didn't have any symptoms of fatigue prior to taking humira.
I have no other side effects (except remission.
HTH
I take humira for psoriasis for several years now with complete remission.
I too started suffering from devestating fatigue after about one year of treatment.
It's not a common side effect of the drug but it's definitely caused by it. I stopped injections for a couple of month and the fatigue decreased. With contiuation of injections the fatigue returned.
I didn't have any symptoms of fatigue prior to taking humira.
I have no other side effects (except remission
.HTH
I recently had a blood test showing Active B12 as 90pmol/L - the range is says greater than 35 is fine but I am exhausted. Total Vitamin B12 is 214.
Having an iron infusion tomorrow as my Ferritin level was 14ug/L.
I've been on Humira since 2014 and I don't notice being tired anymore then I normally am. I'm just extremely fatigued from the sickness and all. I do take vitamins and give myself b12 injections. All blood work shows superb levels so I think I'm just mentally and physical exhausted. I wake up multiple times through the night in pain.
I suggest you get some blood work done to determine if there is something low. It's difficult when we don't know what our bodies are actually absorbing.
I suggest you get some blood work done to determine if there is something low. It's difficult when we don't know what our bodies are actually absorbing.
Absolutely. It came on so slowly. It ended up turning into depression because I no longer looked forward to ANYTHING because EVERYTHING was such a chore. Even always pretending you are ok.
I started cannabis and not only was I able to come off Humira, asacol, uceris, lomodil, tramadol, and endless amounts of Tylenol bit my Colon was completely healed within a year. It was only being kept at bay with the humira and asacol.
As soon as the humor left my syste m a gigantic surge of energy hit me. I still appreciate and notice my high energy level because I spent 15 years exhausted. (Remixade then humira).
I started cannabis and not only was I able to come off Humira, asacol, uceris, lomodil, tramadol, and endless amounts of Tylenol bit my Colon was completely healed within a year. It was only being kept at bay with the humira and asacol.
As soon as the humor left my syste m a gigantic surge of energy hit me. I still appreciate and notice my high energy level because I spent 15 years exhausted. (Remixade then humira).
I'm in the same boat with u. Been on Humira last four months. I'm starting to wonder if it's humira that's wiping me out or my overall health. I'm always tired and struggling to move around.
My husband is experiencing this also. Did the fatigue stop when you stopped taking Humera?