I'm scared

Hello everyone,

I've been battling with RA for 12 years now, recently I took the decision to come off drugs because I was finding I was guzzling down ibuprofen everyday. I was put on humira but it was just not the magic drug I'd been promised and the self injecting really stressed me out.

I have tried diet, I eat very carefully but its made no real difference. My knees are so bad that I'm struggling go walk. I'm struggling not to cry every 5 minutes. I have my appointment with my consultant next week to go onto some different drugs, I'm so scared that it won't work, I feel exhausted and at a loss, I feel like I'm 70 years old and it makes me so sad.

Any support would be greatly appreciated

Blessing and love to you all

xxx

16 Replies

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  • Hi

    I have no answers, but will send you a hug and wishes that you find a solution too.

    I am in a bad place right now, my RA is sort of ok, except the constant pain and grinding..... my fibro is playing havoc with me and my emotions.

    I can relate to you feeling scared, exhausted etc but it took a while for me to get the right combination of drugs. I too have a fear of needles, but I somehow make myself inject methotraxate every week and Cimzia once a fortnight. Dont give up, please - I don't know how long you have been on here but the support and advice is amazing (I am just about to put a blog on myself)

    Take care, and hope your appointment goes well next week,

    Pen :)

  • Im so sorry to hear this sending you my best wishes too.. dont stop all your drugs without seeking advice x

  • Oh dear, I'm going through something similar - I was diagnosed in 1999 and after a couple of years of terrible pain, fatigue and despair, I was put on an anti-tnf which worked (comparative) wonders. Now they're wanting to take me off it because, largely of a misunderstanding. How can my experience help you at all?

    I've found that meds do take quite a while to bed in. I have accepted that I have to take nasty potions if I'm going to have anything like a normal life, but I'm prepared to do this if it makes a difference. Things shifted very slowly at first but recently I have felt more like tackling more exercise for instance. I havent taken pain killers for years - except for the occasional headache which is a normal sort of thing.

    There are some good meds available now and if I was in your place I would get the consultant to go through treatment options with you. There's enough research available online and through NRAS who have really helped me in my current problem. I hope you can get somewhere with your doctors.

    Best, Cathie

  • Thank you everyone, I just need to speak to people that understand its therapeutic to know we're not alone! I just wondered if any of you have altered your diets?

  • Yes I radically altered my diet when all this kicked off for me in early 2011. As soon as my GP told me my RF and inflamatory markers had come back positive and he was referring me I decided to drop gluten - mainly because I had a feeling that all the joint pain was being caused by some sort of poisoning and I had IBS/ gallstones and was very overweight. After successfully losing some weight I added dairy, refined sugar and caffeine to the mix. I'm still on track although I'm not very strict about the dairy or gluten but I never drink anything caffeinated and avoid sugar still. I lost a lot of weight but despite this the arthritis kept flaring and then 9 months after starting this diet I was diagnosed and started MTX. It made me sick at the higher dose so I now take it by injection and Hydroxy was added in April. On the whole I'm much better although have big emotional hurdles to jump frequently at the prospect of taking these drugs forever. I'm not in any real pain anymore though. Hope this helps. Tilda x

  • Hiya really hope you get it sorted out soon, I have only had this rotten disese since last July, it must be really upsetting to have had to go though it all these years and still your not getting any real answers, i am thinking of you and am sending you lots of hugs and XXXX

  • Hi Kittycat - sorry you've hit such a bad patch with your RA. There are other ant-tnfs that should be able to help you and I hope your consultant can help you get your RA under control. I take MTX by injection and Hydrocichloraqune and have found that this combination has helped me enormously - no real pain like the kind you describe since June. But the drugs have their own downside so its important to find the right ones for you - Humira obviously wasn't the one but a different one may well be so those knees will hopefully be carrying you again soon. Tilda x

  • I remember when you decided to quit meds and concentrate on diet last year, and I thought you were brave to try. I've altered my diet, but as a way to minimise the side effects of the drugs and do what I can to keep on good form myself, rather than instead of them. It's hard having to contemplate taking these drugs for the rest of our lives, but then it's even harder to live in pain. But we each have to make our own choice about what feels right for us.

    It really does seem that for most people if you can find the right drug mix to suit you then things can really turn a corner, so it's good that you're seeing the consultant next week to talk about other treatments. just because you haven't got on with Humira doesn't mean that there's nothing that could help you. There are other biologic drugs that target a different bit than Humira, so they could be much more successful for you, like Tocilizumab. And have you asked for something that you can use with a pen rather than a syringe as I think people find them easier? I self inject, and it was a real battle to start with, but I'm coming to terms with it. So good luck, and I hope you have a proper discussion with your consultant next week. Polly

  • Thank you Polly, yes I'm very much hoping that the right mix of drugs will work. I had put a lot of hope info diet, but it wasn't enough. Like you say a combination of the two will hopefully work. I have got to the point that I will try any drug now I am in so much pain its unbearable, I'm only 33 I need to live, I have a 21 month old boy and want to be able to enjoy things with him. Being immobile affects absolutely everything, I no longer socialise like I used to, I don't want to go out much because my feet and knees start hurting pretty much instantly, I'm desperate for some relief. Thank you all for your encouragement xx

  • There are quite a few threads on here about changing your diet. have a look through them as it might give you some idea what works for some people.

    But most seem to agree that although changes can make some differences - and these are individual for each person - overall that can't cure the disease.

    We still need to take some sort of medication to keep the inflammation under control so that we get as little long term damage as possible.

  • Hi kitty there ain't much I can add to the great advice on here already but I can empathise even though I am male shock,horror. Like you I have tried diet in a vain attempt to take back some control again I am a man no surprises there but found no magic formula. As of right now my body cannot tolerate mtx and over Christmas I had a severe reaction to Humira so no drugs and my body is slowly seizing up. The slight silver lining is although I am sore I feel healthier strange I know and I have confidence in my rheumatologist to find a solution to the drug problem. I am also sure that this episode you are having to endure will be over soon and you will be pain free again and able to get on with your life. I wish you all the very best and hope you continue to use this website to see you are not alone and there are good days ahead. Kindest regards Danny.

  • Hi Kittykat

    So sorry to hear what a terrible time you've been through. It is only natural that you're scared, as it's always hard when a few drugs have failed to remain positive while not wanting to get your hopes up again in case the next drug doesn't work. Unfortuntaley there is no way of knowing if the next one will or won't work, but I can tell you that I have spoken to many people on the helpline who say that they failed on a number of medications but finally got onto one that worked and founf it life changing. I hope this will be the case for you.

    Regarding diet, the main guidance is always to have a healthy, balanced diet. Some people find that what they eat does not affect their RA at all, but for others it can affect the symptoms, and you may find that certain foods do worsen your symptoms. To see if this is happening you could try keeping a food diary for a while, where you monitor not only what you're eating but how your condition is. Unfortunately this will normally be symptom control, rather than controlling the progression of the disease, so diet is not normally enough on its own, and the medications are the only treatment proven to slow the progression of the disease.

    If you are interested in diet, there is an article on our website which you may want to read:

    nras.org.uk/about_rheumatoi...

    Also, after your appointment, when other drugs may have been mentioned, it may be worth looking at the articles we have on the medications on our website. Here is our section on the different biologic drugs:

    nras.org.uk/about_rheumatoi...

    Kind regards

    Victoria

    (NRAS Helpline)

  • Humira isn't the only anti-tnf drug available, and its quite common for folk to not respond well to one or even two of the anti-tnfs, but get a really excellent result on the second or third they try. Keep up the hope - when you do find something that really works you will be amazed at how good you can feel.

    Just remember too that the people that use these message boards are generally those who are still having problems. Once folk start feeling great, they dont need to post messages her so much, and are just getting on with their lives. So that means we aren't hearing all the wonderful positive stories here so often, even though there are very many of them.

  • well said, totally agree, especially with yr second paragraph x

  • My guess is that because you are in so much pain and feeling so unwell it is making you low with feelings you can't cope. Please do tell your consultant how bad you are feeling emotioally as well as physically. Don't give up trying different medications... there are quite a few these days. We are so fortunate these days to have these medications. Only a few years ago there was nothing except pain killers and people were badly crippled with no hope.

  • Oh Bless you, really feel for you xxx Ask consultant if you would be a good candidate for tocilizumab infusions at yr hospital once a month. They are apparently trying to get this as a front line drug instead of folk trying all the others like sulpha/lflud/meth. If you're not having luck with humira then they may well say yes.....just make sure you squeal and flinch like a pig when they prod yr joints. point out yr inflamed areas and say hoe desperate you 'truly' feel......and that includes emotionally not coping. Big gentle hugs xxxx

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