Scared to take a biologic

Hi my first time here. I am female aged 53 and have had RA since 1995 and had Sulphasalazine then after ten years went on to Methotrexate, then MTX 25mgs injectable and most recently since last year with added Lefuonimide tablets 10mg. I know this is not holding my RA much at all at the moment. My ESR is only kept down with hydrocortisone. I presently have several stiff swollen inflamed fingers and my knees can go immobile and huge with swollen tissue and have had the maximum of Kenalog injections to these joints in the past year. My Rheumatologist said last week they would like me to take a biologic to stop problems from getting out of control. I can have good periods of mobility especially after the shots, but I already have joint damage from early on with the RA as they could not diagnose me back in 1995. (I went almost a year with no meds as I didn't test positive for RA and during this time my hips and shoulder got erosion and my ankles damaged). I am very stressed at the thought of side effects and read that lymphoma and MS can be side effects of some if the biologics. I can't get this out of my head even though I know it is dangerous not to have the RA under control. Is there another drug on a similar level to MTX and Leflunomide which I could take instead? I understand my consultant wanting the best treatment for me but so far reading some articles for the biologics, all I can think of are those possible side effects. I have had an awful lot of stress lately which I always know contributes to my flare ups, and I feel stressed about the whole situation of changing drugs. :-( Thanks for reading.

20 Replies

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  • Hi and welcome. Try not to be scared of biologics. I've been on them since 2006 and have not suffered from any major side effects. I have monthly blood tests to check that my organs are ok and so far so good. The benefits of these drugs in my opinion far outweighs the possible problems you might encounter and I think it's a risk worth taking. Although I too have alot of joint damage, the RA itself has been under control and I have few if any flares now. I was diagnosed in 1973 so it was never going to get me back to how I was but I'm far better than I would be without them. There's a risk with anything you do. Listen to your medics. They really do have your best interests at heart. Good luck

  • It's easy to understand your worries, there's so much information to take on board, but as bub124 says, the medics will have weighed up the pros and cons, and you know that the expense of these drugs means they don't give them out like smarties.

    One thing to keep in mind is that the information about side effects is actually a list of problems people had when they were taking a drug during a clinical trial, these include problems they'd have had anyway, with or without the drug. They have to be listed because they happened.

    I'm on humira, was on cimzia, and haven't had any problems (cimzia didn't work for me, but it does for others). I don't even get the pain taking the injection a lot of other people talk about, so even the common side effects don't affect everyone.

    I hope all goes well with making your decision.

  • Hi - I'm sorry you are flaring and stressed just now. I am not on Biologics but I think if I were in your situation I would be really relieved to be offered them and say yes please - having first done my research as you are doing. They are such expensive drugs that you can be sure they wouldn't recommend them to you unless they were sure you needed them. As was said to me on my blog yesterday - all drugs have risks attached. You've been on a very high dose of MTX and that's a scary drug for many people. I've read a lot about the drugs we are on recently and the Biologics are now thought to be safer and far more effective than some of the DMARDs - there are many fewer people talking about the side effects of anti-tnfs on here than there are about MTX. And as Bub says you'll be well monitored on them so please don't worry too much about side effects. They might well be life changing so if your doctor advises you to take them then I would just listen to them and go for it and hopefully a lot of the pain you've been in will be alleviated soon. Good luck! Tilda x

  • Hello there,

    I think the whole issue of drugs is always easier for anyone other than the individual concerned. From where I'm sitting it's so simple and obvious: Biologics seem to work wonderfully for many people, your RA is not under control and you have already suffered permanent damage, answer = grasp the Biologics with both hands.

    However, in reality it seems that a lot of us go through a whole process of reconciling ourselves to a particular drug or drugs and it is not usually either easy or quick. But in time the drug we are used to becomes the devil we know. Once upon a time I was terrified of mtx and while I still don't like to think about it too much, I now truly appreciate what it has done for me so far. I'm now meant to be adding in Sulfasalazine but am holding back - fear of the unknown I suppose, fear of my current level of wellbeing being disrupted by new side effects. But I will take it. However, it has to be my decision, I wasn't going to just nod when my Rheumy suggested it a couple of weeks ago. I need a bit of time.

    The research you are doing, even if some of it alarms you, plus posting here seem to be part of the decision making process for you - facing your fears & voicing them & weighing them up etc. And all that makes sense to me, these things take time. Good luck with whatever you decide.

    Luce xx

  • I have ever heard them. is there a useful link I could read?

    regards,

    sandra.

  • Biogogics are the same group of drugs as anti-tnfs Sandra - there a whole section in NRAS about them. Tilda

  • NRAS can send you the booklet by post or you can access there web site, they are v good on information and I am a member of NRAS they offer an excellent service.

  • Like you I have had RA for a long time - since I was 37 and I am now 62. I have lots of joint damage because biologics were not available when I was diagnosed. I was on 'gold' injections until Jan 2008. Since then I have been on Enbrel (Anti TNF). I was terrified of going on Enbrel but I am glad I did as for me it is my ability to walk, without it I can't move. You can give it a go and if it doesn't work come off it, but at least you will have given it a try.

  • I'm on a biological drug and it has saved my joints and sanity :o) I have a life now x

  • Hi I am waiting to start Biologics I was diagnosed with RA 3 years ago. I have a nursing background and have been off work for the past 4 weeks with the severest flare. I have tried the majority of DMARD's unfortunately Methotrexate worked for the joints but not for kidney's. I have read all the literature the pro's and con's and think if these drug's give me a chance to move around comfortably by reducing inflammation then I will give them a try. All drugs have side effects be it paracetamol to alcohol. RA has serious consequences to our lives I'm grateful I live now not decades ago when knowledge and drugs were limited.

  • Hi Neonkitty

    Welcome to the forum. You will find that there are a lot of people on here on biologic therapies. Starting any new drug is always daunting, and we probably get more phonecalls to our helpline about medication than we do about anything else, so you are certainly not alone.

    All drugs have potential side effects, but it is important to remember that these are only 'potential' side effects, and that the more severe side effects are likely to be the rarer ones, so you are more likely to have problems like injection-site rashes or increased risk of infection than you are to develop MS or lymphoma. The risk of developing these serious side effects needs to be weighed against the good that the drug can do, and also the risk of what the RA itself can do if poorly controlled. The effect that RA can have on the body can be every bit as serious as drug side effects, including joint damage, lung problems and increased risk of heart attacks.

    If the biologic drugs are being considered for you, this probably means that you meet the criteria of having a high disease activity score (DAS) which in itself is an indication that your current medications are not controlling your RA sufficiently at the moment, and biologics (usually starting with drugs called anti-TNF drugs) are normally the next step.

    It is definitely worth talking through your concerns with your rheumatology team, and asking them about why they feel these drugs would be a good option for you at the moment.It is also worth asking them if they are considering any specific biologic drug or drugs, so that you can read about that drug in more detail.

    As Summer has mentioned, we have a biologics booklet, which you can view or order from the following page of our website:

    nras.org.uk/help_for_you/pu...

    We also have an article on the anti-TNF drugs, which may be useful:

    nras.org.uk/about_rheumatoi...

    Also, information on specific biologic drugs:

    nras.org.uk/about_rheumatoi...

    You would also obviously be welcome to call our helpline if you wanted to talk through your concerns. We are available Mon-Fri 9.30-4.30 on 0800 298 7650.

    Kind regards

    Victoria

    (NRAS Helpline)

  • I have recently started taking enbrel. My consultant and specialist nurses had been talking about them for over a year before I finally agreed to going through the assessments to qualify for the drug. I had a bad spell last August, got an appointment with specialist nurse, CRP 87 and my DAS score that day was 7.2. My second assessment was 6 weeks later due to me going away and I was given a steroid injection that day, I think normally they don't like giving you one while you are being assessed for anti tnf's. When I had my second assessment I think the steroid injection was still working and I didn't think my DAS score would be high enough to qualify but it was. While I was waiting for results of blood tests and xray I was having doubts about taking it. Could I justify putting this new drug into me, worried about side effects. I am sure lots of people have these thoughts before starting these drugs.

    Well end of October I had all the justification needed, I had the worst flare I had ever had. I could hardly move at all, when I managed to get up off the sofa I would walk a few steps and my legs would almost give way underneath me. My life was just sitting on the sofa and trying to get to the loo (thank god we live in a bungalow). Husband had to bring me my meals on a tray all cut up for me. Everyday I would think...tomorrow I will feel better and tomorrow would come and I didn't. I normally keep my crying to myself but one morning after struggling just to get out of bed I sat on the side of the bed and cried my eyes out. I just could not face another day like it (getting a bit tearful now remembering it). Husband made me ring the help line and I was put on steroids, which to be honest didn't really work. They didn't kick in till about 4pm and then would start to wear off at night time. Hospital was reluctant to increase my steroids due to what I had had in the past, so I had to rely on paracetamols, took them in the hours that the steroids weren't working.

    I had my first injection of enbrel Friday lunch time. The following morning I felt so much better, I took the paracetamols that day but the next day I stopped them all together and I still felt loads better, didn't need them again. I slowly have been weaning myself of steroids, tomorrow is my last day of taking them. I feel great, no pain, no stiffness..........I am me again, I feel like I have won the lottery.

    I think that everything that we do in life has got a risk factor, but it doesn't stop us from doing things. We are closely monitored by the hospital and I am a little bit older than you (55), but I think it's not as if I was 20 and taking them, plus the fact that they have been around a few years now and some people have been taking them for several years, so if something is found regarding long term use I will be taken off it before I get to that stage (hope you understand what I mean there).

    I know it is a difficult choice to make and we have to do alot of thinking about it, but after me seeing how bad RA can be, I know I have made the right decision. I was once told by the NRAS helpline that no side effect is worst than full blown RA.

    Paula

  • Hi Neonkitty,

    I'm so impressed by the response and encouragement of all these kind volunteers and other fellow sufferers. I too have Rheumatoid and Osteo Arthritis. My Rheumy and the nurse- practioner are heaven sent , and I thank God for all their help, and for those who give us so much encouragement. I wish you luck and hope you feel better soon.

    Take care and love . Z

  • Sorry I can't get any links to work or access the site at the mo. I am overwhelmed by all your responses, lovely people, and will respond as soon as i van get back on properly. Answering my own question is the only way I seem to be able to write anything on the

    site! Back as soon as I can. My sincere thanks, Madkitty xx

  • Hello and thank you so much for all your wonderful kindness and help. I am truly overwhelmed and I am so pleased for those who have seen such excellent benefits from the biologics. I am having trouble with my links to reply individually so I shall have to do it this way again or not at all. Woolly hit the nail on the head about - the drug we are used to becomes the devil we know. I wanted to know if there is any other DMARD which may work I haven't tried. (I have tried Sulphasalazine (or silver sardines as my husband thought I said!) and MTX and Leflunomide. Could anything help which isn't a biologic. Then if it didn't work I would certainly go for a biologic. My de idiom making process is still ongoing but I am so aware my joints are getting to be so bad. Woolly, my first med was Sulphasalazine and I only noticed yellowing of urine and some hives in strong sunlight. (like we get a lot of that here in the UK!!). It didn't give me any problems whatsoever. Just didn't work after ten years. Just as you say you are holding back on it, I am doing that with biologics. Paula C your message made my cry. I felt so sad for you and I also see a mirror of myself in this. Absolutely. I read it to my husband and he nodded and agreed. I am very despondent about this sudden onset of immobility which has happened in the freeze we have here. It has all gone downhill as i had my knee and wrist injected two weeks ago and normally I am good for three months. I feel like the cold has really bitten in red wrung my legs so awful I have cried too. Unlike me also. I know i fear lymphoma as my Dad died of it but he had lung cancer for four years before that and he had been a heavy heavy smoker for nearly fifty years since he was 12. I don't want to be rail roared by a Rheumy nurse even ifvthey are well meaning. I have make my research then make my decision

    myself. My husband says you csnt go on like this and this is how you were when you took your first med. He is right and it is back to that apprehension Woolly has spoke about. Thank you Victoria, NRAS. I need to renew my membership and will phone the helpline next week. I saw Dominj Bryer is coming to NRAS meeting Leeds to talk aout biologics in May. What a shame it isn't sooner. Thanks for all the links and I shall be reading them all this weekend. To PaulaC, TildaT, Sailaway, Lindal, Tamnwill, Fossil, Bub and everyone, my sincere thanks. I am going to the GP next Friday to see if he can assist a speedy appointment to try drain my right knee which is massive. Also he is a really good talker and may be able to help me too. I will let you know what happens. Take care all, Neonkitty xx

  • Hello and thank you so much for all your wonderful kindness and help. I am truly overwhelmed and I am so pleased for those who have seen such excellent benefits from the biologics. I am having trouble with my links to reply individually so I shall have to do it this way again or not at all. Woolly hit the nail on the head about - the drug we are used to becomes the devil we know. I wanted to know if there is any other DMARD which may work I haven't tried. (I have tried Sulphasalazine (or silver sardines as my husband thought I said!) and MTX and Leflunomide. Could anything help which isn't a biologic. Then if it didn't work I would certainly go for a biologic. My de idiom making process is still ongoing but I am so aware my joints are getting to be so bad. Woolly, my first med was Sulphasalazine and I only noticed yellowing of urine and some hives in strong sunlight. (like we get a lot of that here in the UK!!). It didn't give me any problems whatsoever. Just didn't work after ten years. Just as you say you are holding back on it, I am doing that with biologics. Paula C your message made my cry. I felt so sad for you and I also see a mirror of myself in this. Absolutely. I read it to my husband and he nodded and agreed. I am very despondent about this sudden onset of immobility which has happened in the freeze we have here. It has all gone downhill as i had my knee and wrist injected two weeks ago and normally I am good for three months. I feel like the cold has really bitten in red wrung my legs so awful I have cried too. Unlike me also. I know i fear lymphoma as my Dad died of it but he had lung cancer for four years before that and he had been a heavy heavy smoker for nearly fifty years since he was 12. I don't want to be rail roared by a Rheumy nurse even ifvthey are well meaning. I have make my research then make my decision

    myself. My husband says you csnt go on like this and this is how you were when you took your first med. He is right and it is back to that apprehension Woolly has spoke about. Thank you Victoria, NRAS. I need to renew my membership and will phone the helpline next week. I saw Dominj Bryer is coming to NRAS meeting Leeds to talk aout biologics in May. What a shame it isn't sooner. Thanks for all the links and I shall be reading them all this weekend. To PaulaC, TildaT, Sailaway, Lindal, Tamnwill, Fossil, Bub and everyone, my sincere thanks. I am going to the GP next Friday to see if he can assist a speedy appointment to try drain my right knee which is massive. Also he is a really good talker and may be able to help me too. I will let you know what happens. Take care all, Neonkitty xx

  • Thank you Zannie too x

  • hi neonkitty .

    evryone has given you such wonderful advice .. i started enbrel 3 weeks ago . to give you some idea i used to take 1800mg of ibpurofen every day and i have been doing for several years , just to keep moving n working,, over the last few months / year this was getting to the point i needed more n more , but id reached the max limit i could take .. i was at the point i was dependent on nsaids totally .. then on the 8th jan , i started enbrel .. since then ive taken just 2 tablets .. thats only 2 tablets in nearly 3 weeks .. i was taking 21 a week . it started working the next day .. this is my 3rd week and ive just gone over a full week without taking any other meds .. first time for donkeys years ..

    so my advice ..is .. be brave .. start the anti tnf .. see how you feel after a few weeks .. then see if your still in two minds .. my guess is .. youll stay on anti tnf and all them worries will have disappeared ...

    also .. the anti tnf , isnt that new a drug and new studies are finding it , to be totally safe .. probably more so then MTX..

    good luck ..

  • Thank you Andy, I am so glad you are benefitting as that was indeed too much Ibuprofen. It sounds so great you are having such positive results. It is true, everyone has been so great, but as others have said it is often terrifying to think about a new drug. I was the same with Sulphasalazine even though my Rheumy told me kids took it, and also about MTX. Strange,y enough I am not bothered about needles or self injecting. So that helps of course for potential biologics. Thanks again. Neon Kitty

  • That is so positve andy.. such a morale booster., neon kitty, do your research I Have recommended nras and thier biologic booklet. I have tried and failed on 3 dmards,, you like mt havent many left to try,, my current one gold injection gave sxteen months remission but now has stoppped.. the decission is ultimtaley yours.

    If you dont smoke your risk factors are down straightway... good luck

    Alison x

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