Humira

farmgirl
farmgirl Member Posts: 20
edited 24. May 2015, 06:35 in Living with Arthritis archive
Is anybody out there who is a PSA sufferer who takes Methorexate and Humira, as I'm currently injecting mex and not feeling any benefit from it, have tried other drugs but am now being offered Humira, which worries me as the side effects can be grim!

Comments

  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I don't have PsA, I have AS and something else they are still working out a name for BUT I do use meth and Humira. I started with Enbrel and had some terrific reactions so after a bit of messing around I moved on to Humira. Obviously I was ready for side effects after the Enbrel but I have had none and it is doing a lot of good.

    As ever, the side effects are potential, not actual or guaranteed. If the meth isn't working and you are being offered Humira then in your shoes I would give it a try. It took many months to get Humira due to funding and the like so the sooner you say yes, the sooner you will navigate that (unless it is different at your hospital) and hopefully find the combo as advantageous as I do.
    Hey little fighter, things will get brighter
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have PsA and take both injected meth (weekly) and humira (fortnightly) plus six sulphasalazine tablets daily. I know that they are doing a good job of controlling my PsA because my bloods are lovely. There are some on here with RA who take humira and they are enjoying a pretty good reduction in pain and better movement - those who are doing very well indeed don't bother to post which doesn't help folk like you.

    The manufacturers of these things have a duty of care to list potential side effects, bearing that in mind I read the leaflet once then put it away. If I do think something is not as it should be then I check again. The one time I had some trouble I hadn't a clue that anything was amiss, it was my conscientious approach to the blood tests that showed that things were going wrong. :lol: When we begin these meds we should ensure that our bloods are regularly tested - mine were fortnightly for years but I've now reached the Holy Grail of bi-monthly. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • farmgirl
    farmgirl Member Posts: 20
    edited 30. Nov -1, 00:00
    Thanks for replies, i feel better already! I inject weekly meth and did take sulphasa............... cant spell it but it made no difference so stopped a week ago, ( by my wonderful specialist) i have fortnightly bloods which i hate as i have crap shallow veins so it usually hurts. Forgot to say that i'm only 58 and live on a farm and look after and ride horses (riding can be very difficult when i cant hold the reins very well). I'm hoping it may help reduce the swelling in my sausage fingers!
    I have read that Humira may cause cancer which also is a worry.........
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    farmgirl wrote:
    riding can be very difficult when i cant hold the reins very well

    When I used to do riding for the disabled I used nylon reins to which I taped some thick foam where I gripped them. You can also buy little attachments to give more grip for weak hands.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Even if you feel no benefit from the meth it will help you in the long term with the Humira. Back in the early day's of Biologics they were mostly given on their own but the main complication with Biologic drugs were that our own immune systems can eventually develop antibodies towards the drug and this is still a big problem/one of the main reasons they stop working. By taking Meth or another medication like it the chances of developing antibodies resistance to Humira are reduced.

    That was the explanation given to me as to why every Biologic I have been given recently came with Meth, I never got on with it well so currently I'm taking just the Biologic on it's own but they do plan to start me on something else along side the biologic soon, even if I feel no benefit from it I know it's going to hopefully make sure my biologic works the best it can.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Apparently the risk of cancer is increased with any of these stronger meds but my take on that is this: people contract cancer despite a history of good health, the number of cancers which can be cured is increasing, I don't think these meds have been around for long enough for reliable extrapolation to be available, we are carefully monitored and, most important of all, an auto-immune arthritis cannot be cured - all that is available to the likes of us is suppression of disease activity. Any form of arthritis is degenerative and progressive and once joint damage has occurred it cannot be reversed - these meds are designed to avoid such an outcome. What matters is the possible quality of life that can be achieved now and in the future. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • farmgirl
    farmgirl Member Posts: 20
    edited 30. Nov -1, 00:00
    I'm so glad i did this post as I've learnt so much. I'm thinking that i will go with the Humira if my hospital can get the funding. Over the last year my health has gone down hill quickly, at the rate its going i feel that i will have to retire from my horses which will mentally put me in a dark place, this would/could be bad for my overall health and wellbeing.
    So many thanks to you all.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hi,

    I don`t have PsA, I have RA, but I`ve taken humira now for almost seven years, at first with MTX, then just by itself - long story, but the MTX began to cause problems. Humira made a considerable difference to my quality of life, so hope it works for you, and wish you good luck.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    My post would be exactly the same as the above post by Theresak so no need to write it out again.

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello farmgirl,

    I am on humira and MTX, as well as leflunomide. When I first started anti TNFs, I worried about the cancer risk. However, I had some lengthy conversations with the NRAS helpline and my rheum team. From this, I learned that more detailed studies have shown that the risk of cancer is not as high as initially suspected. Also, uncontrolled RA has been linked with a higher risk of certain types of cancer. Therefore, I decided that if the risk of cancer was slightly raised anyway, I'd rather give my aggressive, erosive RA a good thwack on the head. It worked and it's so worth it. My quality of life has improved immeasurably.

    To be honest, the biggest cancer risk is age and in the Western world, we are living longer which is why cancer seems more widespread.

    Take care and the best of luck.
  • Buka
    Buka Member Posts: 43
    edited 30. Nov -1, 00:00
    I would just go for it. I have RA and take methotrexate and Humira. The first time I was given Humira I felt like I'd got my life back. It took around 6 months before I started to feel really good but then I had the best 18 months I'd had for about 9 years. I then made a mistake and came off it for six weeks to have surgery done on my feet. When I returned to it for some reason it didn't work and I had a miserable two years while they tried other things. Nothing worked and eventually I asked to go back and try Humira again. 'Reluctant rheumy' finally agreed and within six months all was well again. I am now blue badge free, back on my bike and walked a couple of miles on Sunday. My knees are awful, my hands are deformed and I cant straighten my legs properly but I do enjoy my life again. I went off to Vietnam in Feb and plan on visiting family in Australia at Christmas. None of these things would have been possible in 2011. I dont want to raise your hopes that this drug will work for you - it may not. But I do want to give you hope that sometimes things do work out and you can feel loads better. I dont have any side effects either!! Good luck whatever you decide.
  • Jaclyncollin
    Jaclyncollin Bots Posts: 36
    edited 30. Nov -1, 00:00
    I have RA and been on humira for past 3 weeks. I was on meth for some time but couldn’t tolerate it very well and had to shift on leflunomide and then my doctor recommended trying humira finally. I was as nervous as you before starting this treatment but I am thankful I did. I am yet to see any improvement in stiffness but I am lot better in terms of fatigue. I am surprised myself, because I have read it may take around 3 months to see some benefits.
    Every drug comes with benefits and so are the Side effects but those can vary individually. It’s always good to have in depth understanding of your treatment from your doctor before starting one so that you don’t have to undergo unnecessary frustration later on. The most common side effects to expect are injection site reactions, such as bruising, soreness and swelling. But there are ways to minimise it. I keep my injection pen out of the fridge and let it warm up for 30-45 minutes before injecting. This single change leads to dramatic reduction in pain.
    Though, it’s so early to quote my experience, I thought this could give you some positive vibes.

    Jaclyn.
  • farmgirl
    farmgirl Member Posts: 20
    edited 30. Nov -1, 00:00
    HI Jaclyn, great tip about taking injection pen out of fridge 30 mins before hand.
    Thanks to everybody's input i feel happier!! about taking it.
    Does anybody have problems with verrucas, warts and cold sores in the last 3 months they seem to be popping up everywhere, i understand it's because my immune system is struggling.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I had a spate of warts a few years back but most have gone now. It is to do with the immune system.

    Elizabeth x
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    farmgirl wrote:
    HI Jaclyn, great tip about taking injection pen out of fridge 30 mins before hand.
    Thanks to everybody's input i feel happier!! about taking it.
    Does anybody have problems with verrucas, warts and cold sores in the last 3 months they seem to be popping up everywhere, i understand it's because my immune system is struggling.

    Yes, take the injection out at least 30 mins. I usually do closer to 45 mins and it stings a lot less.

    I did have a spate of verrucas and athletes foot which was just delightful, as you can imagine. They've actually cleared up now and <touch wood> I've not been bothered since. A chiropodist will be able to give you advice on foot heath.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    These drugs suppress our immune systems so we are more prone to infections, we have to be assiduous hand-washers and encourage other family members to increase their hand hygiene too - this reduces the risk of infection, as does staying away from people with coughs and colds. I have never had a cold sore or a verruca - both are viral infections, yes? I am not sure how you can alleviate these, maybe a chat with your GP is in order.

    I cannot remember if I've told you this before but you are eligible for a free 'flu jab come the autumn. It won't stop you catching the odd cold here and there but it will protect you from far worse. We don't produce symptoms as rapidly as those with unsuppressed immune systems so bugs can get a real hold before we become aware that we're poorly. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben