side effects need some help with my decision should i or should'nt i please xx

morning i have done some research on certolizumab pegol and they say that it can cause skin cancer really concerned about this worried now. com!!! what do you all think and also the steroid tabs are hard to ween off and cause mood swings is this true? have had steroid injections and recently had one last Tuesday and i'm experiencing irritability , low and high moods would this be the steroids?, if so should i agree to go on them in tablet form? please help if you can any advice extremely grateful i need to make my decision by 27th March :(( lena xx

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  • Hello Lena

    I know that's it's always hard to decide - particularly when faced with a whole list of frightening potential side effects. I haven't had Certolizumab Pegol but have had three of the other biologic drugs over the past 8 years or so. A number of the drugs I have had over the the years have listed an increase risk of cancer as a side effect and my thoughts are that I have no way to know whether I might develop cancer in the future either as a result of a drug or otherwise, but my RA is a certainty and I would rather feel as well as I can NOW, rather than miss that opportunity "just in case". That's not to say I just take what I'm given drug wise. I always do my research before making my decision. I hope that makes some kind of sense.

    Re the steroids - mood swings are a well documented side effect of steroids. The information leaflet with my oral steroids says that "Prednisolone tablets can cause serious mental health problems. These are common in both adults and children. They can affect about 5 in every 100 people taking medicines like Prednisolone tablets".

    I have taken oral steroids for many years and, at higher doses I do get very depressed and high dose steroid infusions send me spiralling into black despair, sometimes for many weeks at a time. Higher doses also leave me really "wired" with racing heartbeat and literally pacing the floor night after night, unable to sleep.

    In terms of being difficult to come off oral steroids - I have certainly found that to be the case because they work so well for me and it is very difficult to stop taking them when I know I will be worse without them and have nothing effective with which to replace them.

    Although oral steroids can be absolute miracle workers - taken in the long term they can cause serious health problems like osteoporosis and diabetes to name but two.

    Sorry, I know I am rambling, but I hope some of this will be helpful to you.

    Good luck making your decision about Certolizumab - and I really do hope that if you do give it a go, it will help you.

    Tilly x

  • Thank you tilly, you have been very helpful in your experience of the drugs very good account, what if i just tryed the certolizumab and stayed away from the steroids do you think that would be a good idea? not happy about the steroids at all, i dont like the way they make you feel.:( so unsure what to do. lena xxx

  • Hi I asked my Rheumy about this as I am on Humira with a one in a hundred chance of skin cancer.he said your RA will cause your body damage and make your life miserable. He also said in practice he rarely sees it but advises me to check moles and skin regularly and at any sign of change get it checked out. He says that a lot of the time it is easily treated if caught early enough, so that's what I do, I check my skin regularly and get my oh to check my back.

    Good luck with your decision but do take into the decision the damage RA can do to your whole body v the side effects. Hugs Axxxxx

  • thank you allanah for your helpful information, you see the thing is i never took meds for any thing apart from my thyroid so to be faced with all these extremely powerful drugs and not just one but two and have to take them for life worries me to death i know alot of other sufferers on here would be glad to be given the anti tnf drugs but what if i get another illness on top of this then not only will i have RA but something else on top which could probably need more medication for that and then if i dont take it i would end up with severely disfigured joints and severe pain. just seems there is no easy option im damned if i do and damned if i dont . its so hard to decide .

  • Hello Lena :)

    My anti-tnf drug also has increased skin cancer risk as a side effect and I was extremely freaked out about this (still am) but there was no other option because my inflammation was so extreme that I was risking joint damage if I didn't take the biologic. I now go to the dermatologist regularly, avoid too much sun exposure and check my moles regularly. It's a tough decision but remember RA has side effects too, not just the meds xxx

    About the steroids: I've experienced the same symptoms as you: mood swings, irritablility, restlessless, euphoria and even slightly manic episodes. I still have a few of those but I am on only 5mg long-term Prednisolone maintenance dose and I just try to be aware of these symptoms and remind myself to calm down and be patient whenever I get particularly agitated. I've had it with both oral steroids and injections but as long as you're on a fixed course the symptoms should go away once you've tapered off or the injection has worn off.

    I hope this helps and good luck with your decision and I am really happy that you're getting a biologic: they're miracle drugs :)

    Love & hugs, Christine

  • Thank you christine i am pleased to hear you are doing well on these drugs. I know i have to make a decision but i am so scared my mind is all over the place at present not sure whether i'm coming or going . just seems were in a no win situation it may treat your RA but you have then to face all the side effects.:( but thank you for your kind words of support. xxxx

  • cimza is one of my potential choices but I am leaning towards enbrel xx

  • why summer? xxx

  • Another way to look at this is that just having RA, and not treating it, will increase your chances of having a heart attack or other heart problems by quite a lot. One article I read said that if we didn't keep the inflammation under control then we were 3 times more likely than non RA folk to have a heart attack. So taking these powerful drugs does help our hearts hugely, even if they bring other risks with them too. So it's swings and roundabouts!

    And everything we take has some risks, even simple things like aspirin. So it's really about deciding how best to have as good a life as you can. And making sure that you try to minimise other risks, so since being diagnosed with RA I have paid a lot more attention to eating properly, taking exercise and not drinking & smoking.. which in my head will go some way to evening out the risks. Also remember that the drugs companies have to list all the risks, even if they're not that high.

    As far as steroids go, I've used them short term only as they too have horrible side effects particularly things like bone thinning. But I find the injections are much better than the tablets, and don't make me so nutty as the tablets do, and as they're slow release so much easier to wean off as well. Polly

  • Thank you polly for your info and support so kind, i didnt look at it that way gives me alot to think about . I think from reading the replys i will try the certolizumab and maybe leave the steroid tabs for a while and see how i get on then i can judge how i'm getting on. All the replys have been extremely helpful and very supportive . i cant thank you all enough. I'm absolutely terrified and still trying to come to terms with it all so much to take in. I suppose when i get the meds sorted i will probably start to accept it better as i had such a frightening experience on the demards with awful side effects.

    lena :) xx

  • Hello again Lena

    I am pleased you have had lots of answers and hope that maybe things are a little clearer for you now.

    I know things must be even more difficult for you after having awful side effects before - I have been there myself (not often thankfully) so I do understand.

    Reading your blog, I think I'm right in saying you are fairly new to RA and, if so, it is understandable that you are struggling to take it all in. I forgot to say before re the meds, is about a "trick" I use if I am scared of trying a new drug. What I do is to tell myself I will give whatever it is a go for, say 6 months, and then if it is not right for me, I don't have to continue taking it. I don't tell the consultant I am thinking like that - it is just my "bargain" with myself, which helps me to get over the initial hurdle of starting a new drug. Also, in terms of frightening side effects, I know from experience that they usually disappear when you have stopped taking the drug which causes them.

    Re the steroid tablets - hopefully if the certolizumab works for you, maybe you won't need to consider them anyway.

    Thinking of you.

    Tilly

  • Hi tilly thank you for your kind words i am new to RA recently diagnosed in september last year and went through a really bad time with severe side effects of three different dmards .plus 3steroid injections to boot. So im really worried about all this still trying to get through the acceptance of it all. I know i need help as without the steroid i was in crippling pain in most of my joints. At moment the steroid injection isworking so i have some pain but not as sevre as it has been your support is very helpful. And i think what you do would help me and i think that is the way i need to look at it too get through this . Thank you so much for your help i am going to try the bilogic drug but leave the steroid but as,you do iwill give it 6 months and see how it goes also i didnt realise RA could cause heart problems so that is another factor i need to consider thank you polly. So thank you all for your kind help i just need to take a eep breath and accept it. Hugs and thanks lena xxxx

  • Ps sorry about typo errors fingers are stiff now and a little upset because reality of all this is kicking in .sorry.xxx

  • Hi sorry I have been away! It's is so hard to take everything in, have you ever phoned the NRAS helpline, they were amazing when I first got diagnosed and a wonderful listening ear when everyone else got sick of me!! So take hat deep breath,hone NRAS and you might find it all gets a bit easier in getting you towards acceptance. That was the hardest thing for me xx hugs Axx

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