The side effects I had from golimumab/simponi

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kbsr02
kbsr02 Member Posts: 11
edited 14. Oct 2015, 06:26 in Living with Arthritis archive
After suffering from psoriatic arthritis for many years having flare up after flare up, I have tried numerous tablets including methotrexate & leflunomide. They have all given me too many side effects to list and the next stage was anti-tnf medication. Enbrel/etanercept was the first option from my consultant which I tried 15 months ago. I only took it for two weeks because of lots more side effects including feeling sick every morning, which carried on for four months after I'd stopped this injection. This all makes me sound like I don't want to get better however I really do. My landscape business and my life in general is grinding to a halt. Recently the consultant suggested the monthly injection of golimumab/simponi (another anti-tnf injection). It costs £800 an injection however, after my first jab 7 weeks ago I would pay £80,000 to have this drug extracted from me. First side effects were: breathing problems (couldn't make it to the top of the stairs without an inhaler), leg cramps from hell, constant headaches day & night, numb toes, cracking joints, stomach problems and as a kind, gentle man I turned into Charles Manson for the month - seriously Mr Angry - I couldn't help myself. The Simponi nurse told me about another man getting very angry whilst on this drug, she wasn't joking! Also I found just drinking 1 can of beer I felt like I'd drank 5. So I would suggest never to drink with this chemical. I decided not to take the second monthly injection and so wished I had never took the first. I so wish there was someone out there who could help me as I feel this is the end of the line for medication. The side effects outweigh the cure so I will never try anything again ever. I'm just going to stick with paracetamol and suffer.

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  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    I'm sorry to hear you have had so many bad experiences. Trust me I've also been there and it's not a nice place to be.

    The good news is there are other medications you can try and eventually you will find one that will agree with your body and work. All of these drugs affect us in different ways so there is never any guarantee the next drug isnt going to make you have unpleasant side effects.

    I hope you find something that suites you sooner rather than later!
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I'm so sorry to read this. All meds come with potential side-effects and DMARDS and anti-tnfs come with more than most. You seem to have had a singularly rough ride.

    I think all you can do is have a chat with your rheumatologist about where you should go from here. It might be worth trying again some of the earlier meds, maybe in different combinations. I do understand that, with such difficult side-effects, the thought of a paracetamol-only regime must have its appeal. However, the consequences of untreated (which it would be) PsA would be very hard to live with also.

    The nurse isn't the real expert. Ask your rheumatologist for advice before taking any drastic decisions. And / or have a chat with our Helpline people.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It sounds to me as though you are one of the unlucky ones who cannot whose system cannot tolerate these strong medications. I am very lucky in that I don't get much in the way of side-effects but that's balanced by not much in the way of relief.

    I note you say 'The side effects outweigh the cure . . . '. There is no cure as such, it is about learning to balance our activities against the demands of the disease. I too have PsA which in turn has led to OA and fibro and am currently in the second week of a PsA flare caused by the humid weather. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kbsr02
    kbsr02 Member Posts: 11
    edited 30. Nov -1, 00:00
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    Thank you for your kind comments of support. After over 15 years of suffering, and trying at least 10 different medications the thought of trying another one fills me with fear. I'm going to see how long I can manage without any medication, as I'm still suffering with the side effects from Simponi which I injected 7 weeks ago. I also spent a day in hospital last week because my breathing is so bad and my immune system is so low. If I had a wish in this world - it would be that I had never took this Simponi injection in the first place.
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    I was on the drug for 9 months , had loads of mouth ulcers but little else , they doubled my dose which just sent my RA into overdrive & my CRP up to 300 ............. nice drug not

    I am now on one of the newer drugs but most of these are for RA & NICE wont let them give it out to PsA , talk to your consultant or nurse about other medications
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi,

    I think you could cause untold damage to ureself internally if you aren't on any medication. It really concerns me. Also how on earth to cope with only paracetamol as a pain med?? :shock: :wink: I think only a couple of biologics maybe too soon to quit, personally!!

    I too have PsA & severe chronic plaque psoriasis. My Dermatologist has put me on my 1st biologic. It's one of the newest, I think, as I'm the only one on here, so far, that's even heard of it :lol:

    It's specifically for Psoriasis & Psoriatic Arthritis treatment & is called Ustekinumab or Stelara.
    You have one injection day 1 then 4 weeks later you have ure 2nd injection then it's every 12 weeks after that. It doesn't hurt at all, in fact I don't even get a mark at the injection site!!

    In all honesty it's not keeping my psoriasis under control so she's told me I'm likely to be taken off of it & put on something else possibly in around 3 months. Both my Dermo & Rheumy are so disappointed, they thought it would work for me coz they're seeing such great results in others. Wot works for one often works perfectly for others & vice versa of course.

    Good luck & don't give up hope, please?!

    (((Hugs)))

    Xx xX
    Healing Hugs
    Debbie.x
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    The simponi was clearly not right for you. As you will know, all of us with an auto-immune form of arthritis such as PsA or RA have overactive immune systems which attach our own bodies so we need the meds to dampen them down. Clearly simponi dampened yours down too much.

    You will feel very battered right now and probably not in the best emotional position to take any long-term decisions. Maybe a chat with a GP might help. They can't prescribe anti-tnfs or DMARDS but will have some appreciation of the difficult situation you are in.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    All of us on these drugs have suppressed immune systems so we have to be very vigilant with hand hygiene etc. to avoid infections as much as possible. If we catch a bug we won't produce symptoms until it has a real hold on us, in this situation I have always been told to stop the immune-suppressant meds so my immune system can fire up and help to fight the infection.

    Stopping all the meds is not a sensible plan but I empathise with that feeling - I go through similar periods from time-to-time (I'm eighteen years in with this malarkey) but having had a three-month period with nothing I remember how difficult life was; although it's not wonderful I am better off with taking them (my humira is warming up as I type). Once it's in me I hope it will help to reduce the flare I am currently enjoying - due to an admin. slip-up I have been without it for some time and the PsA is having a bite. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kbsr02
    kbsr02 Member Posts: 11
    edited 30. Nov -1, 00:00
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    Six months down the line, my breathing problems from taking one months supply of simponi is still as bad as after a week of taking the injection. I'm still using my inhaler day and night. (I had outgrown my asthma by the age of 16 and I'm now 58) Also, the leg cramps in the front of my shins continues but not as bad and so getting a nights sleep is really a thing of the past. Also, my patience levels are still at zero, which never was the case. If I had the choice of simponi or cyanide I would take the cyanide as this company that makes simponi have totally ruined my life. They poisoned me.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I've never stopped using my inhalers, I cannot remember what a good night's sleep is (likewise being pain-free) and am tired all the time which can fret at my temper (I have to remind myself that how I am feeling is no-one's fault, it's due to the disease and its treatments). It ain't easy but it is what and how it is.

    When are you next due to see your rheumatologist? Do they know how tough things are being? I wonder if a short course of oral steroids would give some relief but I am not a doc. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I can feel your anger and frustration. It's very understandable if you feel that all your troubles are due to simponi. However, your anger is colouring your judgement. No-one has poisoned you. They gave you an approved med to try to help your arthritis. There are no guarantees with meds, with arthritis or with life itself.

    I was given ibuprophen in my early 50s and, immediately, my childhood asthma (forgotten for 40+ years) returned. Like you, I now have to use my inhaler(s) daily. It's unfortunate but no-one could have foreseen it. I don't blame anyone. I use my inhalers and thank God for them because when I had asthma as a child there weren't any.

    How are things otherwise? Are you on another anti-tnf? Has your GP given you anything for the leg cramps? Would a chat with our Helpline people be useful?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kbsr02
    kbsr02 Member Posts: 11
    edited 30. Nov -1, 00:00
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    Hi everybody and to everyone who has replied. I do appreciate your advice. Despite how it must sound when I'm talking about my ailments, I'm a very happy person that gets invited to parties, weddings etc. and always have a good laugh, but to this website I must come across as Victor Meldrew. However, after taking medication for more than 25 years including all the anti-inflammatories that the doctors could give me, progressing onto methotrexate, leflunomide, Enbrel (etanercept), onto 8 months of steroid injections and finally simponi (golimumab). The results from all of them were making me as sick as a dog, terrible leg cramps, asthma playing up big time, psoriasis flare ups, and giving me a temper I never had and this week trying a low dose of oral steroids once more, my stomach is now so sore that I can't even take them. I've also tried more than once omeprazole in different forms to help my stomach cope with tablets but they always make my joints ache so bad as it says on the small print. Now it is the end of the major chemical line and I'm sticking with paracetamol, hot baths and Tiger Balm ointment. This gives me minor relief but it's better than nothing.
    Thanks again for your advice and support and I hope you are all getting by.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    You don't come across as Victor Meldrew but you must be under a lot of stress if you're trying to maintain your landscaping business and stress alone makes arthritis worse. Do whatever you feel you must but remember not every pain, ache, sickness etc is due to either arthritis or the meds and paracetamol is nowhere near as innocuous as many believe.

    Will your rheumatologist continue to monitor your progress? I hope so as that would give you a quick route back when needed.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kbsr02
    kbsr02 Member Posts: 11
    edited 30. Nov -1, 00:00
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    Update from last year after being poisoned from one month injection of simponi/golimumab. Once I had had the one simponi injection I suffered from pleurisy twice in seven months. My immune system was destroyed as the simponi attacked my lungs so bad, and my lungs are still as bad now at least a year down the line. I find it difficult to get to the top of the stairs. Since the pleurisy I have had at least three more lots of antibiotics for chest infections, prednisolone, various inhalers and strong pain killing medications and have had to cease working. An MRI scan says that I now also have osteoarthritis in the base of my spine as well as psoriatic arthritis everywhere. The Rheumatology consultant says that psoriatic arthritis doesn't attack your lungs unlike rheumatoid arthritis. Does anyone have a different opinion to this? Simponi isn't the only anti-tnf I have tried (Enbrel used first) but with my resistance being so reduced, I think if I had carried on, using them ,they would have killed me. Dmards just upset my stomach and made sick as a dog. I am still just taking hot baths, paracetamol and using tiger balm ointment and resting lots, which is hard for me as I was always so active. I have been offered more anti-tnf but that for me is what nightmares are made of. To anyone that reads this, I wish you all the best.