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HELP. Nervous about starting Humira biological theraphy

Posted , 6 users are following.

Jubs_UK
Jubs_UK

dear friends

i have just been approved for humira for my AS my pain is severe and affects my feet, hips, lower back and neck. Even with Tramadol I'm struggling. I was delighted when I got the call but now a week later I'm very nervous......I've been reading the consequences of a lower immune system and wondered how everyone has experienced Humira? 

I would be be grateful for your advice and knowledge....if you have tried this theraphy ......how did you find it.....was it worth the side effects.....did it give more relief then the grief it may have caused with other illnesses? I know ultimately I have to experience it myself but just wanted to know how it's worked for others. I hope you will share your experience with me.

please mention which country you are in....so I'll know what to expect if ur in the UK like me. I'm in East London...Mile End hospital.

many thanks

juberia

3 likes, 29 replies

29 Replies

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  • tim1978
    tim1978 Jubs_UK

    Posted

    Hi I started humira this week I was nervous too soo far so good I should have been diagnosed in 2002 but they failed to view all of my Mrs scan pics

    • Jubs_UK
      Jubs_UK tim1978

      Posted

      Hi

      you poor thing....like me...I should have been diagnosed 10yrs ago. Now I hardly go out and my family's life rotates around my pain and appointments.

      please keep in touch and let me know how it goes for you.

      i just wondering Tim do you take anything else? How bad is ur AS and would you mind letting me know how ur pain is helped....u may not see results till a couple of weeks but keep me posted? My injection is waiting for me in the fridge.....rolleyes

    • tim1978
      tim1978 Jubs_UK

      Posted

      i also take 2xnaproxen .6 gabapenten aday 8 co codamol and 8 tramadol aday. just a few i have noticed a tiny difference nut fingers crossed it works.do use any messsenger apps
    • Jubs_UK
      Jubs_UK tim1978

      Posted

      Tim ur on so much medication....I hope the biologics relieves ur pain so that you can slowly reduce them and their side effects....I hope biologics will give us the relief we've been waiting for, sometimes I think I need s hip replacement but I don't know at which point that's recommend.

      i will keep you posted... smile 

      take care

      jubs

  • rose0000
    rose0000 Jubs_UK

    Posted

    Jubs

    I am in exactly the same position as you. I start Humeria next week.

    I had a cancelled total hip replacement on Friday because of the steroid shots (no one told me, luckily the surgeon spotted it 15 mins before my operation) and I am at my wits end with it all! The pain, the impossible circle of dealing with one thing after another. I hope the humeria will help the severe hip pain, and also the back and neck, but do you realise that you need to wait for three - six months until you can have replacement surgery after taking it? If you are planning any hip replacements this needs to be considered.

    I am already waiting for the three months so I might as well take the biologics and see if they work in the meantime, it will only add a week to the wait....

    I live in the UK, and was offered ANTI TNF many years ago, I wish I had taken it then rather than trying literally everything under the sun for three years and getting nowhere. I could have had three good years instead, so I would encourage an open mind, it is worth it if it works. Like you, I was worried about the side effects and the potential to make things even worse, but now I am at the point I am beyond caring, I just need to get better.

    Keep me updated on how it goes, I will do the same, and hopefully it will be good news for both of us! 

    • Jubs_UK
      Jubs_UK rose0000

      Posted

      Rose, thanks so much for sharing this with my. I am in the thinking mode you were in those few years ago...I'm wondering will this diet or that diet work...will these vitamins help me through....but we need to face reality....we need help. Maybe with Humira and everything else you were doing you could find enhanced relief....do you know what I mean.?

      i think I will start Humira....I'm just waiting to get the all clear from shingles....I recovered a few weeks back but want to be a bit strong so that even if my immune system weakens I won't get it again. I've set November as my start time I won't go beyond that no matter what. I wish I had this treatment even a year ago....my hips hurt so much Rose, 10mins on my back and I feel paralysed with pain....if only I knew my condition I would not have spent years sleeping on my back....I must have Mae it worse...plus being an administrator......

      please we do keep in touch....we can help and support one another. 

      Would you mind sharing what you have tried for you AS....it would help me with some of my thoughts....

      best wishes,

      jubs

    • rose0000
      rose0000 Jubs_UK

      Posted

      Hi Jubs

      I would just like to correct a typo it is three weeks between humeria and operations not months! Although different consultants have different policies - it is a good idea to check.

      Of course I am more than happy to share with you my experience. I have had AS for ten years, diagnosed three years ago. Since then I have basically tried every anti inflammatory medication going (some horrible side effects) and then moved on to other drugs such as sulphasalazine etc - nothing worked. I tried steroid shots in all the joints and X-ray precision - all lasted less than a month. I tried exercising religiously, different diets and physio sessions. Massage and hot patches and cold. Herbal oils and potions from all over the world over the years. I need a hip replacement now, and my spine is also in a bad way. So it has been quite a journey, but the key for me has been to remain positive and celebrate what I can do, and not dwell on the difficulties.

      I have tried to avoid biologics for years but now I am really ready to try them, we have nothing to lose and everything to gain. That is my view.

      I have children and they must see me dealing with this well, I do not want them to suffer.

      AS seems to have different forms and levels, some people have flares and others are constantly seriously ill needing a very robust plan of action. I think you must make the decision that is right for you. You can always stop the humeria if you do not get on with it.

      I am sorry this is happening to you, it does really get to you after a while. You sound very worried, but anti tnf does have a proven track record of at least 17 years now, and for most it is a miracle drug that gives them back their life, certainly the friends I know this has been their experience.

      Best of luck with whatever you decide and do stay in touch x

    • Jubs_UK
      Jubs_UK rose0000

      Posted

      Thank you Rose,...u are an inspiration to me smile
  • Jubs_UK
    Jubs_UK

    Posted

    Hello everyone

    how we you all doing?

    are any of you taking vitamins...have your docs recommended anything? 

    Have you been told if anything is unsafe to take alongside the Humira.

    im going to join my provider (hah) in this support programme....anything I learn I'll share with you all. : ) 

    all best wishes

    jubs 

    • ama38049
      ama38049 Jubs_UK

      Posted

      Hi Jubs, vitamin C, magnesium and omega 3, although I dropped the last one lately. None prescribed by Drs, but from "ear to ear" experience. Magnesium did miracles as one of Humira's and preceding meds side effects was weakening muscles (at least in my case). I worked out 4-5 times a week (sounds more than it actually is) and nothing showed up, just an overall pain all over the body. After taking magnesium I suddenly had muscles again which actually developed as long as I kept excersising. Not sure about the vitaminC impact, but I take it nevertheless for the immune system. Good luck :-)
    • Jubs_UK
      Jubs_UK ama38049

      Posted

      Thanks Ama that's really helpful smile I'm seeing my doc tomorrow I'll see if he recommends anything
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