Adalimumab and fatigue

[Woofywags]

Hello everyone. I've not posted before as only diagnosed in May and been struggling with the drugs, steroids, fatigue and feeling awful. I've been put on adalimumab as a single drug as I couldn't tolerate methexotrate injections and lefludomide. Had 2 onjections so far, third one this Friday, but I'm really worried my fatigue is worse on the drug. Also have snuffly nose, exzthma flare on elbow, random siore throats and bad aching I'm mu buttocks, hips and thighs. The hospital said to keep going with it for a while. Has anyone else found this and then felt this lifting once the drug works, and how long did it take? I've been off work since August and am worried I won't be able to go back to my job period if this is how it is to be.

[sylvi]

Don't give up on work yet it might change when the injections start to do their job it does take a while for the medication to work Hugs. xxxx

[Woofywags in reply to sylvi]

That's good to hear. Thank you

[Woofywags]

Ps, just wanted to say what a fabulous resource this is and a beacon of hope and really appreciate all the contributions and work that goes into running this. Thank you everyone.

[vonniesims]

I think they say give it up to 12 weeks.I have a constant runny nose on it

[Woofywags]

Sorry about your runny nose. Ive been thinking I have caught a cold but clearly its the drug! Yes will keep going. Glad this is a known 12 week thing as ive been told could feel better in 2-4 weeks and actually feel worse and putting undue pressure on myself to be feeling better than this. Work will just have to wait. Hopefully this will all settle down and to be thankful in the meantime I have access to a biologic.

[Deeb1764]

you have to work thro the “ hell” to come out the other side unless it’s serious side effects. Had my first Abacept last week and floored for 4 days but I accept it’s a 8 week minimum and see rheumatologist in Jan to see how it’s going!

I never get colds or flu now but lots of runny nose moments. Fatigue has been not just me but many on here the hardest part. To figure this one out is a personal journey and the word pace comes into it . Though again many of us say the word PACE then Get a burst of energy and do everything we can in the allotted time to get payback the next day 😂

[Woofywags]

Ahh yes, totally associate with that. Finding Pacing very hard to do but learning the hard way.... will get there... Thank you for replying. x

[seronegativeRa]

I have been on adalimumab since September 2023, after developing hives and full body itching with Hydroxychloroquine and a host of horrendous side effects on Methotrexate my bladder has not been the same since (thank goodness I pushed for the injectable version at the time, as recommended during a one off visit to an Italian rhematologist, I shudder to think what the already horrendous stomach side effects would have been on the pill form they insist on starting with in the UK).

So for me fatigue was never made worse by adalimumab, but I already suffered from fatigue to start with. It’s been the only medication, that has kept my symptoms under control, I still flare, but nowhere near what I used to before starting these meds (I was flaring every few weeks, at least 5 days, my longest went on for 14 weeks), the main issue for me is feeling loopy/dizzy after the injection. So after I did my 2 with the Rhemy nurse, I then started doing them before bed, problem solved. I am careful about hygiene, I always carry hand sanitiser wherever I go, I avoid touching my face when travelling where possible (you should really avoid it all the time, but I stuggle with that). I’ve stopped eating sushi (which I love) and no more homemade mayo due to the raw egg. I did have a bad chest infection in Feb of this year, however, I have had them in the past (pre Covid). This time around I was sent to a&e to be safe and given IV antibiotics and at home antibiotics. However, I don’t feel it was any worse than previous long chest infections.

For me, this medication has given me a bit of my life back and with a lot less side effects than other meds, Bear in mind, not all biologics work for everyone first go, I know people that are on adalimumab, one says it’s changed their life forever, been on it 18/19 years and has allowed him to continue working and get out of bed (practically bed bound pre meds), I also know of someone else, who took it and worked wonders for 6 months, then stopped. I know of two others that again, call it their miracle med, and I know of one person that said it did nothing for them.

Give it time, weigh up the benefits vs the side effects, and if these side effects are more tolerable than what you’ve dealt with other meds,

I will also say that I’m not complexly cured, I still flare, but mostly self inflicted by overdoing things (mental physical exertion and stress, as well as too much sugar and processed carbs can all flare me), and have just been diagnosed with Fibromyalgia & ME too. I’ve made a lot of lifestyle changes, I no longer drink (wasn’t a big drinker), cut out as many ultra process foods as possible. Cook from scratch on good days, and freeze so I’m not reaching for junk food when I’m tired or in pain and don’t have the energy to make anything.

I’m careful about pacing myself, I’ve cut down on my working hours and drastically reduced stress (had to step down from my leadership role). The last thing, which I can’t fix for want of trying, is losing weight. I used to keep my weight under control by walking everywhere, but since Covid/and the onset of my illness it’s been impossible to lose weight whatever I’ve tried, I know if I could drop some pounds this would also help, but I suspect that the onset of perimenopause is not helping matters.

I wish you all the best with you adalimumab journey

[Pamela-bsl]

In on adalimumab, methotrexate and leflunomide and I'm also suffering with fatigue. Doctor didn't link it to my meds but is blood testing for thyroid and diabetes

[RAGuy]

I am sorry to hear of your initial reactions. I have experienced similar things myself in the past, but I agree with everyone else. Give it time. You need to see if these are short-term effects and if they pass.

Sadly, there is no guarantee, but this is a very effective treatment if it suits you. However, we are all different. Stick with it, see how you cope, and then decide if it works and if you can handle the side effects.

I hope it goes well for you.

[Numptybrain]

I’m on MMF and the fatigue is horrendous I’m not yet on my full dose either so dreading it, just had it increased to 2000mg yesterday was on 1500 but have to go to 3000mg yet , I have had horrendous heartburn hence why delay increasing it so Lansoprasole is now to 60mg daily. It’s swings and roundabouts but I’d be seriously ill without it.

Take care

Wendy xx

[Tired-fed-up]

Hi and welcome to the community! It’s early days for the drug and for coming to terms with the illness. Give yourself time, self love and patience as you learn to manage your capabilities and limits. I take adalimumab and hydroxychloroquine. In terms of pain and inflammation, it has been a wonder drug! But fatigue and stiffness are an ongoing battle that I struggle with daily. I only feel “right” when I’m on steroids but my rheumy is very reluctant to give them to me unless it’s a really bad flare 😔

Try to accept that things may be different from now on, but it’s too early to write anything off! Stay off work if you can and take things day by day. I spent the first 3-4 years of the illness asking “is this as good as it gets?” - now the answer is yes, and that’s hard to come to terms with.

[Woofywags]

Hello again everyone. So sorry for not replying to you all separately but guess what,a bad brain fog,fatigue day but thank you all for your advice, sharing your experiences and support. It really,really helps. I can see now this is very early stages and need to battle on through this,get better at pacing and to the other side of 3 months and reasses life then. Never thought I would need a lie down in the middle of the day, twice! Best of luck to you all as well and what a lovely community, a good thing out of this situation at leastxxx

[Portinatx17]

Took about 4 wks with me but I am on Methotrexate also( years) I have had sinusitis twice plus a constant runny nose and ulcers in my mouth. The fatigue should lift as one of the things I found different was the amount of energy I had once started working. Hang on in there for a while longer but obviously if 6 wks further along and no change, I would request a review. Good luck x