Humira on Monday

I am due to start Humira on Monday and I am really dreading it. I already take Methotrexate which never did anything before but I have restarted it to try the two together. The Humira looks so big compared with Benapali when I was using that. I know I shouldn't take notice of the side effects listed but they do seem awful. Has anyone had anyone got anything positive to tell about taking these two? Monday is getting very close.

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55 Replies

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  • I took mtx, leflunomide and humira together with very few side effects, just hay fever and itchy skin, which started when I was on Enbrel anyway. All of the medication we take can have awful side effects but don't forget that they can have a fantastic effect on your RA! It worked well for me for 4 1/2 years. I'm now on tocilizumab and mtx which are working well together (although not sure if the mtx is doing anything as it wasn't helping when the humira stopped). Good luck 😊

  • Thank you. I hope it works.

  • I had to stop the methotrexate as was effecting my liver.Next then went on sulfasalazine with HumIra. HumIra didn't start for me or did Enbrel or Rituximab. Now take hydroxychlorine along with sulfasalazine which I've had most improvement. Never had any side effects from the HumIra thou and looked forward to injecting every week after first couple as prayed would help . Hope it helps you

  • Thank you. I have tried Hydroxychloroquine in the past, that didn't work for me, or Benepali.

  • I have never noticed anything good, bad or ugly from taking Humira. Also taking Methoyrexate and hydroxycloroquin. The only one I noticed working was the hydroxy. I Stopped taking the humira and metho for a couple months last yr at different times and saw no adverse affects, no flares or pain. When I skipped the hydroxy I felt some wrist and ankle inflammation. My RA doc is talking about reducing the Humira from twice a month to once a month. Will see at next checkup.

    I recently started a low inflammation diet that seems to work well for me. Hoping to eventually get off all drugs. Good luck

  • Thank you. I tried diet at the start but never noticed any difference.

  • I did too change diet, total began, but didn't eliminate the right things from the diet, now it's no processed oils, refined sugar, meat and dairy. Its made a big diff now going raw veggies vegan eliminating all inflammatory foods until my body heals inside. Now when I consume one of these listed above I notice a difference. Especially the oils I notice a diff in my gut.

  • It took a year for my new diet to have any effect. Now I know if I don't stick to non processed foods I get flare ups. I have had 2 Humira injections so far and they are working fantastic for me. I am also taking prednisolone but reducing from 10mg by 1 mg per month and hope to get off them I have has awful side effects from methotrexate, Sulfasalazine, luflonomide and Benapali. Praying Humira is going to be OK. So far I have felt loads better and much less painful.

  • I expect diet chg to take a yr or more if needed

  • I was on the anti inflammatory diet for over two years. I started it because seeing my Mother suffer with pmr, GCA and other arthritis conditions and being told it could run in families I went to see a naturopath so that I could learn what to eat and what not to eat to keep healthy. I was eating no wheat or dairy and hardly any meat, lots of added vitamins and minerals and I lost a lot of weight. Then after about two years I developed pmr and have since gone on to develop RA. I eat healthily but have gone back to the things I enjoy as I see no point in eating to be healthy when I am not plus I didn't enjoy a lot of the food.

  • Hi Marsha, can you please tell us about your diet? Thanks so much! Penny

  • I did post free infor videos a few weeks ago. Check my profile posts for the links to the lower inflammation videos. Its similar to the Paddison diet: raw tons of greens in green smoothies, but this one is Dr Brooke Goldner.

  • Wonderful, thank you!

  • I hadn't realised that not everyone takes their biologics weekly? I thought weekly was standard ?

    Marie

  • I only know about the Biologic RTX .....on starting you have two infusions, in hospital, two weeks apart, then toddle off for 6 months....if all goes well you then repeat the two infusions. I have had 3 sets of infusions & so far so good.

    I seem to be doing well & Rheumy says after next dose if my bloods look right & I have no pain I can have the two infusions just once a year....which will be great as my infusions take all day! I arrive at 9am & usually leave around 7pm!

    Which Biologic you are offered depends on many things in your medical history......I'd had cancer so many were off limits for me...but as I say I seem to be one of the lucky ones & Rtx seems to be working.

    AC

  • That's great. I hope this continues to hold you . Always great to hear a positive outcome.

    Marie

  • Mine is every other week

  • I've Always had them weekly - just imagined this was standard

  • Hiya, I don't think there is such a thing as 'standard' with Biologics, I think each one is different and each patient's dose can be different too. I only inject once a month with mine (at the moment) :)

  • I inject every other week.

  • Hi. I am currently on MEthotrexate, leflunomide and Humira, have had no problems really except for hay fever type symptoms and occasionally a low white blood count. The positives outweigh the negatives.

  • Thank you.

  • I took Humira only for 14 months. It worked quickly for me and only side effect were some bad headaches but these gradually reduced with each injection and by about the 4th one I had no headaches after. Got pretty tired the day after but that was bearable considering it worked well. Clemmie

  • Why only 14 months? Do they stop it if you have been responding well?

  • It stopped working for me unfortunately. I moved onto Enbrel which is working pretty well but my rheumatologist was concerned that it was starting to fail because of building up antibodies to it so I'm now on MTX with it. The enbrel has been great but MTX is making me feel yuk! Clemmie

  • MTX gave me personality changes. Stopped an kept with Humira doing extremely well back to work. Loving each day❤️

  • Embrel is the same as Benepali I think. I had that until earlier this year, it didn't work.

  • I've been on Enbrel now for 18 months, mostly working well although I a, having more pain and stiffness, hence taking MTX again. Clemmie

  • I started taking Humira at the very end of May after taking Methotrexate (22.5mg sc), Hydroxychlorquine and steroids for 6 months with no effect and...

    It's amazing! I can see my knuckles now, my wrists are wrists with a bony bit showing and I feel so much better than I have for the last 10-12 months - I'm still not better (I think I have lasting damage to shoulders and knees) but it is so worth it - I have had no extra side effects and am now looking forward to the future rather than just coping with now!

    So all in all scary when I read everything but great effect so worth the risk!

    Good luck for Monday - deep breath and look forward 😃

  • Thank you. I hope I am lucky like you and it continues to work for you.

  • Im due to take my 8th injection today honestly it fine doesnt hurt no side effects but Im still waiting for it to "kick in" and give me some relief. But Im hopefull.

  • I hope it works for you.

  • I took Humira for a few years. It helped me for the most part but was recently taking off because of making my immunities too low over time. Good luck and hope you are feeling better soon.

  • Thank you. If it works it will be the first that has other than steroids.

  • I have been taking Humira for a few years now. It started working from the first injection (once every 2 weeks). I'm also on leflunomide tablets. Never had any side affects. It used to hurt but they changed the carrier fluid and it does not hurt now. What it has done is given me a second life. I don't have pain (unless I do too much) and I haven't had a flare for 2 years. All in all BRILLIANT!

  • That sounds good.

  • I started Humira on a Thursday. The pain in my hands and wrist were so bad nothing helped. I worked up on Saturday without any pain at all. I hope you have the same results. I have been on Humira for a year now. The only dread I have is giving myself the injection. When you give your shot leave it at room temperature for 24 hours. NO REGREATS

  • 24 hours? I used to leave Benepali half an hour.

  • I wouldn't recommend leaving any biologic at room temp for 24 hours.

  • The information that comes w the product says Humira can be left out for 2 weeks if it doesn't get any warmer than 75°

  • Didn't realise this- good to know . I panicked when the fridge was accidentally switched off fir a couple of hours !

  • That concerned me too - if I have to defrost my fridge it could take 24hrs. So its good to know I'll do it in winter time coz my kitchen is like an ice box in winter months.

  • It stings if you use it too soon from fridge. I take mine out the night before and don't even feel the injection. I used to follow instructions and just take out of fridge half an hour before but injection was painful.

  • Thats what I was advised half hour out of fridge & thats what I do & I dont feel it at all honestly no problem.

  • Hi, I've been on Humira nearly 11yrs ,plus methotrexate injections ,Humira has worked wonders for me ,given me back my life,🙂,only side effect I've had is a bit of tiredness,its my life line ha! Ha! Honestly if it works it's a wonder drug ,good luck ,🙂

  • p.s I only leave Humira 1/2 hour for room temp🙂

  • I too initially took humira and Mtx - nothing to report in so far as taking them together.

    Best of luck

    Marie

  • I was on Humira for 9 years, hugely positive result, got back to living a normal life, injection stings a little bit, but it's over in seconds, I had no side affects at all. It really helped with fatigue as well. The only reason I stopped taking it was due to my body sending antibodies out to it so it became less and less effective, hope all goes well

  • I've been on both for two and a half years now can't say I'm great but it's quite consistent but at sixty you don't moan , please don't worry about side effects everyone is different, just take it steady and see how you go 🌺🌺🌺

  • I started humira a few weeks ago and have had no side effects whatsoever. Hope you have the same experience 😊😊😊

  • Anything positive to tell? Wow! Everything is positive. It was my silver bullet and all symptoms from the swelling, the pain, the anaemia improved completely within 2-3 weeks. They told me that it might take months so that was much faster than expected. I've now been on it for eight years and one just has to follow the advice regarding un-washed salads/ un-pasteurised egg or milk products etc, plus avoid colds and flu. Apart from the fact it stings a bit when used straight out of the fridge and that is a small price to pay, the injection has not been a problem at all. Good luck!

  • I just did the first one. The nurse said they have taken the citronella out now so that it doesn't sting. It makes you wonder why they would even put that in?

  • Hiya, I stupidly put off going on Biologics as was a bit terrified of all the listed problems. I then tried homeopathic treatments for almost a year till I eventually had to admit to myself it wasn't working and I was getting worse so I started on humira. It took about 2 & a half months before I really noticed a difference, but it did start to really help so I should have started before I did. I take it alongside sulphasalazine and hydroxychloriquine. I still get really tired now and again but I'm managing to stay pretty mobile with less pain and don't think I would be half as good if I hadn't started the injections. Definitely worth it. Hope it works out for you too :)

  • Oh and I meant to add, the other thing that's happened was some improvement in my wrist, so there are most definitely many reasons to start taking it :)

  • Yes there are. It is encouraging to see it takes a while longer to work in some people .

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