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Cosentyx/Extreme Fatigue

  • By clweiss71

    Has anyone using Cosentyx now or in the past experienced extreme fafatigue? I have completed my 5 week dosing load and am close to taking my next dose. I have experienced fatigue from the start. I’m talking about the kind of fatigue that is so bad I can’t even wake up enough to get a drink of water from my bedside table when I know I am feeling really thirsty. I can’t get anything accomplished. I’m feeling frustrated because this is my 4th biologic. I can’t afford to be this tired every single day. This is not a side effect listed so I just wanted to know how many other people if any have experienced this with cosentyx?

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  • By CathyD Moderator

    Hi clweiss71,

    I don’t have experience with Cosentyx but I have a lot of experience with fatigue. I just wanted to say I’m sorry you’re suffering in this way. Fatigue can be so debilitating. Have you been able to discuss this with your rheumatologist?

    – CathyD

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  • By salferink5

    Sweet. Corsentyx is going to be my 4th biologic too. Was curious if anyone had tried. Clweiss71 – you don’t happen to have fibro too, do You?

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  • By clweiss71

    salferink5 –
    I do have fibro as well.soo far Cosentyx has worked the best for my skin issues and the psA. I suffered from one of the main side effects with my first injection which was a sinus infection. Was treated with antibiotics and it went away. I was scared it would keep happening but it hasnot. I found out since my post that I need an iron infusion so the low iron could be causing the tiredness. I will let you know once my infusions are complete. I am so thankful to be able to move and work again since starting cosentyx. Wish you well!

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  • By clweiss71

    salferink5 –
    I do have fibro as well. So far Cosentyx has worked the best for my skin issues and the psA. I suffered from one of the main side effects with my first injection which was a sinus infection. Was treated with antibiotics and it went away. I was scared it would keep happening but it hasnot. I found out since my post that I need an iron infusion so the low iron could be causing the tiredness. I will let you know once my infusions are complete. I am so thankful to be able to move and work again since starting cosentyx. Wish you well!

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    • By Casey Moderator

      Thanks for sharing, clweiss71! I’m sorry to hear that you struggled with a sinus infection, but I’m glad to hear that treatment with antibiotics was able to clear things up, and that the infection has stayed away! Interesting to read about the low iron! Makes sense! I’m curious to see if this makes a difference, and hope you’ll share the results with us! Sending positive wishes your way if you’re trying this soon! Also, I’m so glad to hear that you’ve been able to see some improvement on the cosentyx! So awesome!!! Please keep us posted! -Casey, Psoriatic-Arthritis.com Team

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  • By lily628

    I am on my second starter dose of Cosentyx. I get headaches every day, extreme fatigue, nausea, night sweats and no improvement. I am wondering if anyone else has had this. I’m thinking of not continuing with the medication as I have had no improvement. I was on Stelera and never had this many side effects. I’m still taking methotrexate and may just continue with that.

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    • By CathyD Moderator

      Hi lily628, all of the symptoms you’re currently experiencing sound extremely difficult 🙁

      With regards to not seeing any improvement yet, often these systemic medications can take months to kick in properly – did your doctor give you any idea as to when you should start to notice a difference? If you haven’t done so already, I would definitely check in with them and discuss your concerns regarding side effects and lack of progress – they should be able to advise on the best course of action for you. Please keep us updated and know that we’re thinking of you! -Catherine, Community Moderator

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    • By lily628

      I did speak to my rheumatologist. She is suggesting I try something else. I also can’t afford the co-pay. I’m not eligible for assistance because I’m at the cusp. My doc is now recommending Cimzia. It’s covered by medicare.
      Thanks for your support. I know this is an art and not a science.

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  • By Laura

    Just started Cosentyx 3 wks ago, so am in the middle of my loading dose and YES to extreme fatigue. I’ve tried so many drugs, that I’m willing to go through this IF after the loading dose, fatigue moderates. As I am now, I am no more functional than without the drug.

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    • By StephWillNot

      Hi – I just took my 3rd injection as well, and was only recently diagnosed with severe PsA. I feel like a truck hit me, my nose runs constantly, and the worst heartburn even though I’m on prescription treatment for GERD. My skin looks great compared to what it was like before which is good as it’s getting hot and I want to wear shorts & dresses and was uncomfortable showing my skin before. I am not ready to throw in the towel by any means but I sure am glad I’m not working currently – I’d be asleep under my desk! More so I’m thankful to find a community going through some of the same.

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  • By GCM

    Hello – I too, am beginning my first experience with Cosentyx. I have PsA with Uveitis (severe in the past, now in remission, hoping it stays that way!) Luckily, I have minimal to zero Psoriasis. I had to go off Humira after 4.5 years (part of that time on MTX injections with Humira); I was hospitalized twice in a few months, picking up viruses which typically weren’t see in adults…resulting in pneumonia + high temp. My Rheum decided Humira had “gone rogue” and was pushing my immune system TOO low. He wanted me to have a 5 months break from biologics; 2 months in I developed a severe PsA flare that I have been treating with oral Prednisone since July, along with a Kenalog injection 150mg.
    I am will take my 4 WEEK “Loading Dose” of 300mg (2 injections) of Cosentyx on Monday. Last week, the 3rd loading dose of 300mg hit me very hard; the first 2 weeks weren’t that bad…but I assume the levels of Cosentyx in my body have built up (plus with the 10mg daily oral Prednisone, and what is left in my body of the Kenalog/Prednisone 150mg shot). I have been having significant side effects, of severe fatigue, insomnia (even when taking 3 Amitriptyline my Rheum gave me to help for sleep…AND adding a OTC Unisom on top of it.) I was up most the night last night..while being exhausted. I am hot, and sweating all the time, feel bloated and heavy (I’ve been watching for the ‘camel hump’ and ‘moon face’ of Prednisone…but don’t think the dose I’m taking will cause that??? (I did get those Prednisone side effects a few years ago, along with 35 lb weight game while of 65mg daily oral dose when battling very severe Uveitis.) I was able to take off half the weight-gain, but never all of it…I dread it happening again!
    My questions for the group:
    1) Anyone have experience with a 300mg Cosentyx loading dose for 5 weeks? What side effects did you have? (Extreme fatigue + insomnia are my two worse side effects.)

    2)How quickly do you return to “normal” after going to the maintainance does of 150mg every 4 weeks?

    Any input from those with experience on Cosentyx would be greatly appreciated!

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  • By Rojo

    I took Cosentyx for 7(?) months. I experienced extreme fatigue during the loading doses – lying in bed, not moving much. I am usually an on-the-go, gets bored easily kind of person. Finished with the 5 week loading doses and starting the routine doses, I found for a good 72 hours after injecting I could sit on a park bench for three hours, easily, with nary a thought in my mind or care in the world. A reoccurring thought during those times was “WOW!”.

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  • By Frances11

    I have my first monthly injection 2 weeks ago. I find the severe fatigue very disruptive. I barely leave the house. I am wondering if the fatigue goes away? I can’t get my usual chores done, I can barely get out of bed to get a glass of water and have no interest in food, also slightly nauseous. I feel like I am the flu.
    I’m pretty sure I’m getting dehydrated because I’m too tired to drink the water once I get it. These are not side-effects I could manage long-term.

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    • By Robo

      I have many of the same issues. My tiredness goes away after the first week. I am month 9 and am discontinuing for different reasons, but the fatigue did lesson with me.

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  • By bumster Hi I'm new 12/2018

    Hello hope everyone is well as for cosentyx when I started I couldn’t walk very good but on my 4 mth dose in a couple wks and walking pretty good after my recent flare yes still get flares but overall doing better I hated the fatigue and headaches but stuck with it so yes give it time and hopefully you can get the relief you deserve. take care have a blessed day

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  • By PSAWarrior

    With every injection after loading dose eyes were swollen by day 3-7, uncontrollable sneezing, upset stomach but could feel a change in pain and skin looked good. Had to stop and had total knee replacement. Started injections again two months after seems like side effects were worse, extreme fatigue, then severe headaches, eyes so swollen couldn’t see my eyelashes. The muscle weakness and fatigue was so bad that on occasion had to go back to Walker to use restroom then back to bed. Then my last dose on sixth day my lips itched terribly with small blisters inside mouth. I contacted my physician now stopping. It’s a shame because I thought there could be a chance to return to work. I’m use to being on the go did the best to ignore pain but if there is any chance of rare side effects I’ll end up with it. I don’t even ask what they are, I always hope that one day I will find something that works. I’ve had this condition for years now systemic and affects eyes however I know the right drug and healthy diet with exercise I’ll get back some quality of life, the waiting game is the worse. Don’t give up life is meant to be lived not just alive. Thank you for posts a I really thought the extreme fatigue was due to cold weather or recent surgery however the symptoms of a possible allergic reaction at the same time of extreme fatigue confirmed what I suspected. Doctor stopped my med and on to the next. Best wishes to all may you find a happy medium. PSAWARRIOR.

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  • By eemeisner68

    I am having some fatigue, but also muscle tightness which I am having trouble walking.

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  • By texpatmtl

    Cosentyx is my 3rd biologic in 4 years. And, yes. I feel like I’m just a total piece of sh*t since being on it. I mean, compared to the way I felt after developing antibodies to Humira and living through a flare that had me bedridden and housebound, even with prednisone, I guess I’m better. But the whole reason I’m here in this group today is that I want to know if maybe Cosentyx has something to do with the exhaustion I am suffering. Like, I don’t want to see anyone. I’ve gained about 15 pounds since starting in July and even my waking thoughts are just total “why botherisms”. I still have pretty severe enthesitis but the psoriasis is gone. I might be depressed. It’s winter and I’m eating a lot of junky stuff and not exercising much, to be honest. I can’t work. I can’t think. My executive function is GONE. Writing this… I have to reflect on the articles I came across when researching the drug – it’s an IL-17 inhibitor. Another biologic with the same IL-17 mechanism had to be pulled during trials because a number of patients reported suicidal ideation and several completed suicide. I have no idea how to gauge anything anymore. This disease is kinda like hell.

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    • By Robo

      Thank you. I am so glad I found this forum. I have been on three of the biologics, enbrel, humira, and now cocentyx. The Humira was about 85-90 percent effective but had stomach side effects and pretty serious weight loss. Cocentyx is just an absolute killer. The drug works extremely well on the disease but also causes me massive side effects.

      I usually wake up at 150 mph ready to devour the world. I now have insomnia to an extant and have to force myself to work in the garden, which was a driving passion. I also have the why bother attitude most of the time and have to continually tell myself all is well, this was never the case for me. I have trouble motivating myself to do anything. My muscles actually hurt, not ache. I lift weights and can tell the difference between sore worked out muscles and tight achy muscles. I actually am in pain in my shoulders back and arms almost continually now.

      I am trying to certify in my field and cannot remember complex details, this could be the lack of sleep, or as you referred to it the death of my Executive function. My head feels flighty and determinations and decisions are really better left to someone else at this point. I am wishy washy and unsure which is new and frightening.

      Weight loss is continuing unabated, however, not as bad as Humira. I find that I must eat something that is decadent to have any desire for food. I was in the Navy and can eat just to live and get the body fueled, however, tasty food is important to my happiness. No knock on the Navy the food was usually good, but as time went on the pickings got slimmer and you got what you got. No reason to throw them under he bus. So, going out to dinner and or planning a meal at home is difficult. I lose my appetite even when I was just ravenous. I find myself eating junk, because it is handy and can be consumed immediately while I still have a desire for it. Chocolate donuts are my go to meal, which, though fine in theory is not fine in practice. Lunch meat, PB & J, fruit – good choice, and handy grab food is what I mostly consume which obviously is not good for sleep, stomach illness or muscle aches. So this may be contributing to the previously listed side effects.

      Now, this is the side effect that I cannot tolerate any longer. Yup. I can live with the weight loss, lack of appetite, IBS, muscle soreness, and give a shit attitude, but the sinusitis, sore throats, head colds and upper respiratory infections are the final straw.

      I got the first URI on month 7, then again on month 8. These lasted about 4 to 7 days. On month 9 now and this is my first sinus infection of my life. It was really awful. Green, orange, and yellow from my nose like I cannot believe. My throat is so sore it feels like shredded meat, and my chest if filling up as we speak, or as I type. I am hoping the chest cold stays high and does not get deep. The sinus infection started on day 2 and lasted until this morning about 5 days, the sore throat started on day 3 and is ongoing, the URI started on day 4 and is ongoing but feels like it is abating as may the sore throat. All of this was really relegated to the left side of my head, so there was some reprieve there.

      I am going to try to use the sun and perhaps half the dose next month.

      I will never take both shots again.

      My belief is that something that can suppress an AI disease for a month at a time must have some serious potency, and perhaps it is too much for the human body in one whack. I know that Pharma knows best and I am but a lowly consumer, however, I am able to make observations and I believe in empirical data not theory. My observations are that I am sick within 30 minutes of the injection. It is that quick. I get the common flu like symptoms almost immediately, shoulders, back and neck sore, tired and achy etc.

      I hope this helps someone.

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    • By Eileen B Moderator

      Thanks for sharing so many details of your experience with different biologics, @robo. Very helpful! I certainly understand why the side effects are getting to you. Have you discussed altering your dosage with your prescribing doctor so they can monitor your progress? They might have techniques or tips to keep your worst side effects at bay, too. -Eileen, Psoriatic-Arthritis.com Team

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    • By Rojo

      Hi texpatmtl , If I might expand a little on my Dec 2018 post: During the cosentyx front-loading process I would find my usually extra-active self lying in bed, staring at the ceiling, for three days post-injection. My entire body felt like there was a low-voltage charge running through it. Not a painful feeling, but a bit disconcerting. I had no aches, pains, or creative thoughts. My skin cleared almost instantly. It would develop a noticeably healthy, pinkish, well-moistened tone within hours of injecting.

      Thankfully the only responsibilities I had during that time was getting to the kitchen and toilet. I had bread, frozen vegetables, and protein on hand, as well as a large supply of dark chocolate which I couldn’t get enough of. Despite the sweets I managed to loose fourty pounds in a few months.

      Thankfully I had no serious life-decisions to make during that time, or similar documents to sign. It would not be an overstatement to say my thinking was clouded.

      Acknowledging the multitude of factors that make it near impossible to determine causality of symptoms (not least of which includes individual response to IL- inhibitors vs TNF-a inhibitors; disease progression; combining two or more of these stunningly powerful medicines) I had no idea the depth of darkness I experienced, during my last days on cosentyx, existed. I am familiar with depression. This experience was in a different dimension entirely. I am thinking it lasted two weeks give or take. Nothing like it before or since.

      I am now back on a TNF-a which seems to work better for me than IL- ‘s. Thanks for your candid post. My best wishes to you, and all of us, who are on this journey.

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  • By GCM

    I was taking 300mg of Cosentyx (loading doses) per week for 5 weeks. I stopped before the last loading dose injection due to very severe side effects. I had dangerously high blood pressure (my BP is low-normal) along with extremely elevated LDL cholesterol & triglyceride labs; I learned that Cosentyx can impact Lipitor and cause the body not to absorb it. I was extremely fatigued and unable to sleep longer than a few hours…and developed the 3rd case of Pneumonia in less than 1 year. After an emergency consult with a Mayo Clinic Rheumatologist, Mayo has now taken over my care.

    My new Mayo Rheum stopped the Cosentyx (I was previously on Humira…noted in my Nov 2018 post in this string) and has me on oral Prednisone, now on a slow taper to get me off all treatments. He wants to start over and has done lots of lab work, and a CT; he discussed the possibility that I may also have Fibromyalgia & now may also have Ankylosing Spondylitis. At my next appt, we will discuss using Otezla or Leflunomide (Methotrexate did not work for me/injections or pills) and hope to have me stay off biologics. (I’ve tried Remicade, Humira, Cosentyx). If my Uveitis returns (I’ve been in remission for 5 years) I may have to return to biologics to prevent further optic nerve damage. Biologics cause more harm than good in my case, as this type of treatment appears to decrease my immune system way too low and I end up with frequent hospitalizations. Hopefully my new treatment plan will work for me!

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    • By Robo

      Your story is heart breaking, I wish you the best

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  • By Kerry

    I was very curious about biologics. I am glad that I read your story about these. I am a heart patient so I have to be careful what medications I take.

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    • By Robo

      I feel that Humira was the least bad of the bunch. My only noticeable side effect was decreased appetite. I would say that the daily pill form is not as potent as the monthly shot, and you can stop it and I believe it exits your system much quicker than the monthly injectables, which I guess is pretty obvious.

      A blinding case of the obvious you might say.

      good luck

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  • By GCM

    Hi Kerry, for 3 years while on Humira…life was wonderful! I had a few episodes of bronchitis (and had 1 year with no illnesses at all!) but into year 4 the impact worsened from the immunosuppression…and the multiple episodes of severe illness + Pnuemonias started resulting in multiple hospitalization (one when we had flown to CT to visit friends, spending 4 nights in a Hartford CT hosptial.) I stopped Humira thinking Cosentyx would be better….but it’s impact on me was worse! So….. I would recommend people trying biologics because they may have no impact or side effects for you. My life was wonderful and near-normal for 3 years on Humira; I wish it could have lasted. (Plus, Humira saved my eye-sight after a severe and protracted battle with Uveitis.). I wish you luck!

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  • By saramabrey

    Hi everyone! Last week I completed my last loading dose, and am so tired I can’t do much of anything. I had moderate to bad psoriasis & I am just wondering if it’s worth having great skin if I can’t even get up off the sofa to enjoy life! Will it get any better?

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    • By Rojo

      Hi saramabrey , I did seven months of Cosentyx. For most of the loading dose I was on my back with severe fatigue and a stuffy brain. The fatigue decreased by half along with the brain fog after the loading dosing, but still… A positive take away from the experience: if the time comes when nothing is working and the pain is 9/10 and unabating, Cosentyx slowed me down a lot, but I had no aches and pains during that time, and my skin was clear. I wish you better days soon.

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  • By Schnitzel2016

    Hey all, hope you are overcoming your struggles. Terrible to say, but it’s nice to know there are other folks struggling with this disease (or polydisease) like me. I’m not alone with this lonely disease. Like many of you, I was an incredibly energetic, half marathoner, cycler, gym coach, weight lifter, skier, golfer, etc. I keep thinking I’ll get my life back. Now, I realize, that is not going to be happen, and to be grateful for pain free days.

    I, too, tried Cosentyx. I have severe PSA, severe psoriasis, moderate sjogren’s and controlled hashimoto’s thyroiditis (hypothyroid, so take synthroid). I did not do well with Cosentyx and had to stop after only 4 months. With the loading doses, I could feel the fatigue you all speak of, and sort of flu-ish immediately after injecting for days. I had excruciating flares in my wrists, felt like they were broken (and I have broken each of them in the past, so understand how it feels). Then after completing the 5 weeks of loading doses (150mg), and the second monthly dose thereafter I became gravely ill. Very close to hospitalization, and if we didn’t have such a crap healthcare system in Canada, undoubtedly would have been. Despite being very cautious I caught a bug and then had infected sinuses, bronchial infection, thrush, yeast infection and a urinary tract infection. My immunity was so suppressed I could not fight anything off. 2 antibiotics and sleeping 17 hours a day. Took a month to recover; it was 3 weeks before i could get out of bed. I still have bleeding running sinuses and haven’t had a dose since Feb 8th. I haven’t had a sinus or UTI infection since the ’90’s, so this was crazy. The psoriasis on my scalp became the worst of all time, bleeding and weeping, burning so hot, and half my hair fell out. I’m a woman, so it’s very stressful, had to cut my hair all off in a short in a style to cover the bald spots.
    I will say I was pain free after a couple months and for a couple of months, which was nice, but I always had GERD and a bad stomach and worried about my liver. And my psoriasis did not go away. I had scleritis in my eye last year, before PSA was diagnosed, but it hasn’t replayed thank God. Mostly I just ache all the time. All the pain and stiffness has returned to my feet, ankles, calves, knees, hips (full of osteo too), SI joint, lower back, neck and wrists. Just walking the dog then standing to cook dinner is excruciating some days. I had a cortisone injection into the hip in January and would love another one. Had spine surgery 3 years ago to remove a huge osteophyte compressing the nerve root. To get Cosentyx covered, I had to go through an algorithm of treatments, most of which I was allergic to. A large dose, tapering, 3 week trial of prednisone really helped, but again, the rotten stomach. My Rheumatologist says since I failed on Cosentyx I would likely be too immunosuppressed on the TNF inhibitors. She hoped I would maybe get remission for a while from the Cosentyx I had taken, but it lasted only about 1 month – 6 weeks after last dose, which is approx. how long it takes to get out of your system. For anyone with any inkling of their own low immunity, I do not recommend it. I get regular massage, walk daily, do mat pilates, classes at the arthritis center with a physio, take vitamins and eat an anti-inflammatory diet. Never smoked. There is not much else in the way of treatment that my body can tolerate.
    I wish you all better days ahead!

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