Struggling with it all

Hi, I'm really struggling with lots of aspects of my RA, I have been really lucky with a relatively quick diagnosis because it was so bad at Christmas! I was in agony by the time I saw the consultant I was really bad and they gave me a steroid injection which was great and then another! I was off work for about 3 months but went back 5 weeks ago and was counting down the weeks for my next RA appointment as my hips, feet, hands neck were agony! Hospital were brilliant but they told me my RA is very aggressive and my CCP levels are 350, but I don't rely understand what that means?? Also I'm terrified about injecting myself with methotrexate! She gave me some info on biologics and said she needs me to be as bad in 5 weeks in order to put me on this!! I'm not sure what to make of that if its good or not, and if biologics are better long term, really overwhelmed by it all and feing very raw about this! Any advice greatly appreciated x

22 Replies

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  • I know how you feel,have had RA for two years now and Ibe still not got it under control,on mix and salfazalazine,but I am now going on to injections to see if that helps

  • It's a lot to take in at the start, so no wonder you feel a bit raw. We've all been there and it's horrible. But you are in the worst bit, as once you find a treatment that works for you things will improve.

    But if you've only had steroids since you were diagnosed then I'm not surprised you're in pain. They are fantastic as a short term things, but once they've worn off everything comes back. It sounds as if you do need to accept that you will have to take more powerful drugs. But with the drugs your life can get back to normal, so really urge you to try. RA is a very variable disease, and can be very slow to progress or only affect you very mildly. Or, sadly, it can be very aggressive - which means it progresses very quickly and can do a lot of permanent damage to you if not controlled quickly. Your hospital have the experience so if they think yours is aggressive then it probably is, and the CCP number just adds evidence to think they are right as it shows that you body has developed a lot of antibodies. Mine was 200 or so when diagnosed and anything over 20 is considered to show that you are likely to have RA.

    Biological drugs are very expensive - about £10,000 a year - so they are only given to you if the doctors really feel you need them. And there are strict tests to qualify for them which is what your nurse was referring to when she said you needed to be as bad in 5 weeks. But many people find that they work brilliantly. Often you have to take them with Methotrexate for them to work best, and most of them are by injection or infusion. I inject Methotrexate and I was absolutely terrified beforehand as have been frightened of needles ever since I was a child. But it's so easy and completely painless.

    With all drugs for RA it is a bit of trial and error as some work for some people and not for others. So it's not whether any particular one is better or worse, but whether it works for you. And your nurse sounds as if she's really thinking about what's best for you.

  • Thank you so much for this Helixhelix, I feel constantly lost and not sure people realise what I'm going through with comments 'like shake yourself' by family members when I've had no energy! I've been on methotrexate for 3 months and it hasn't been working as I'm still relying on the injection! This is why she wants to move be onto the other! I think I surprised at how quick everything is.

    I feel like I don't know when it's going to hit me and hate the stomach problems I'm having as well, have you had that?

    Thanks again

  • Hi thank you for sharing your experience so, I've been diagnosed with RA by the doctor who has requested an urgent appointment with specialist, it came through for the 12th August ?? amazing! I've now through the help of my mum got a private appointment tomorrow, For the past 3 weeks I've been on pain killers and anti inflammatory's the pain never goes away just gets stronger and weaker , I've had nearly 2 weeks off, it seems to of spread to nearly every joint so quickly. A comment was made that how fast it has spread since I was diagnosed!! Is it in my head then ?? I wish I could show people my pain as it doesn't look that bad from the outside due to anti inflammatory's and the fact I'm off sick, I feel so tired and scarred to be honest as my dad was crippled with its 20 yrs ago!!!

    Take care all this site really helps me understand that I'm not on my own

  • Most people have tummy problems with max, it usually settles down. There's a lot of info on nras website on all the meds so that's worth looking at.

    And you're welcome to ask questions here

    C

  • You're not alone - the treatment plan you describe will be familiar to many of us as will our nearest and dearest thinking we just need to get a grip. Not everyone gets such prompt and determined treatment though so it does sound as if you have a great rheumy team.

    The speed at which everything's happening, the mention of apparently meaningless big numbers, being told that your RA is very aggressive ...... phew! Your head must be spinning. I'm not 100% sure what CCP is ... it's an antibody I think .... and the fact that there's a lot of it probably contributes to your diagnosis of aggressive RA.

    In time you'll probably be taking all this in your stride. And what would be wonderful ... and it is very possible too .... is if your RA gets under control before long. But neither of those things - the emotional adjustment or 'taming' the disease - happen overnight. I'd say go a day at a time and give those closest to you time to wise up too.

    Biologics are very good drugs in my opinion. You can't mess with aggressive inflammatory arthritis, you have to go get it. Strangely, I now enjoy injecting myself .... I like the little bit of skill I've acquired (though really, a trained monkey could do it) and that I'm helping myself. Also, it's pretty painless.

    I so wish you well. We're here for you.

  • Hi it is so horrible and frightening in the early days and other people cannot understand what you are going through. I had to sell my business and can no longer work but I am so much better, I am on methotrexate injections and Enbrel this I my second biologic and fingers crossed my health has steadily improved over the last year. I still get flares if I do too much but I can live a fairly normal life if I am sensible and look after myself. The injections are easy once you get used to them , my side effects OK. I also take 5mg of prednisilone daily. It can take a while to get sorted but dont lose hope work with your rheumy team, and be prepared to change drugs to get some relief.

    Good luck it can be a slow painful process but there is light at the end of the tunnel.

  • Hi, I know how you feel. I was unlucky in respect of my RA I complained about joint pain, swelling and stiffness in 2009 I had raised esr and rf also high ccp/crp.

    I also have raynauds. They treated me for possibly having raynauds with Nifedipine ? They nhs discharged me from their care 2011.

    March 2015 I am diagnosed with sero-positive inflamatory RA ! My RA has and still is causing extreme damage. I have ulna drift and 8 semi subluxated toes.

    I have pain and swelling constantly. I didnt take to mtx it made me very ill.

    Currently on hydroxychloroquine and sulfasalazine. This morning I had an appointment with my rheumatology nurse and I mentioned the biologics.

    Apparently you have fail all the known DMARDS before you can try Biologics and you also have to going through hell or so it would seem before they will reccommend you biologics.

    Also the cost of the drugs is an issue treatment with biologics is approx 3k per course.

    The nhs wont let you have it until you fail everything else.

    My RA is really bad because the idiot who was in charge of my care didnt know his arse from his elbow ! Its left me with numerous problems. I'm Chef by trade. I have'nt worked since july 2013. I have problems with my grip and holding things in my hands. I have days when I cant fasten a button or tie my shoe laces or butter a slice of toast !

    I understand your frustration. Its very hard.

    I made a discovery regarding RA. Its one of the most poorly funded diseases in the nhs. In 2012 RA research and treatment was supposed to improve as the government supposedly gave x amount of millions of £'s for treatment and research but it has'nt improved a lot.

    I hope you feel better soon.

    Kev

  • Hi Kev, just to mention you don't need to fail all DMARDs before possibly qualifying for bios, just 2 as long as you meet the criteria. You might want to look into this a bit more and perhaps consider getting a second opinion.

  • Hi thanks for the info. I'm going to speak to my rheumy and see what can be done.

    Many thanks

  • Good luck. I too think rheumatology is poorly funded. But you know what they say about a squeaky door getting the most oil .....

  • Hi yeah too true only its my joints that are squeaky and need more than oiling they need replacing lol !

  • Hi postle, took your advice spoke to my rheumy and guess what ? They wont allow me bio's because i only scored 4.98 on the DAS28 scale ! Its a joke because i have to score 5.1 or above on 2 consecutive months. I dont know if you are aware from my previous posts that the nhs rheumy cocked up with not making a diagnosis 6 yrs ago. The hospital i was under was knocked down and rebuilt i have a feeling something happened to my records. Have had to see solicitor as the nhs failed to diagnose and treat me. At the time i had ESR 55 RF 329 CRP/CPP 23 stiff and swollen joints. They treated me for raynauds and sent me to the pain unit and they thought it was in my head ! I kept complaining to my gp but got nowhere. I changed gp's last year and they made the breakthrough and diagnosed RA after blood tests. Sent me to different hospital(maidstone) and f**k me they couldnt make a diagnosis for 3 months ! I have'nt been treated very well by the hospital trust in both of their hospitals the other being Pembury now the tunbridge wells hospital. Since I was diagnosed with RA I have also been diagnosed with osteoarthritis of my hips and need two full hip/joint replacements.

    I have ulna drift and I have deformities of my fingers and I have 8 semi or dislocated toes due to the RA eating away at the tendons and joints.

    I was advised to speak to a solicitor by my gp practice.

    My gp can not believe the mistakes made by my previous rheumy my gp said she would never reccomend a patient to sue the nhs but on this occasion someone needs to be held accountable and she is also up in arms over my current treatment by the hospital.

    I am of course devastated by it all. I dont know who i can trust my RA is out of control and I'm at the end of my tether with it all.

    Regards

    Kev

  • A few points off ... that's infuriating. I'm aware that this is RA 35's thread. But I bet loads of people will have some thoughts, experiences & encouragement to offer you so why not start your own? Then we can all reply without feeling we're butting in. There must be a way forward for you & I think needing to let off some steam is very understandable in the circumstances too.

  • Please have a look at the sensible information on the NRAS site -it's so helpful with putting the pros and cons.

    I have always been treated aggressively with DMARDs and as soon as possible starting exercising the joints again. I think that has helped to keep me as mobile as I am now after forty years of it coming and going.

    Despite the drawbacks, treatment is so much better than when I started, so find out as much as you can about the options and go for it. Everybody is different with their disease, their response and their side effects - and remember you won't hear much on here from people who are quite happy with their treatment!

  • In my experience there are less side effects with biologics. It is important to get RA under control as soon as poss to avoid damage to joints.

  • Hi I am starting injections this Friday and feel apprehensive but I am sure it will be better. It sounds like you have a very pro active team which is very good news. I too had a anti ccp of over 300. I have read about this and it is said people who test positive may have a more aggressive form but I try not to worry at this stage as from what I have learnt these treatments may take time. I too am moving to biologics if no improvement but in 3 months. I remember thinking how can I ever get better from this pain but if you read the posts many do. it is not easy to come to terms with all if this as well as coping with drugs and the uncertainty of your future. Post on here any questions and worries and read as much as you can. More than anything I wish you and me! Good luck with injections let us know x

  • Hi!

    Sorry to hear about the tough few months you've been having and it's certainly a lot for you to take in. I would really recommend giving our helpline team a call on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) as they can give you information on medications and all things RA.

    We also have telephone support volunteers with RA so you can have a chat with someone who has been through it and relates to your feelings right now.

    You can also always find out more on our website at nras.org.uk

    Good luck and hope to hear from you soon.

    Best wishes,

    Ruth

    NRAS Community Admin

  • I've had a really tough week but feel like I'm coming through it (mentally) I feel reading your posts that I'm lucky to have so many people willing to share experiences and advice on here! It seems that I'm really lucky that my RA team are really proactive and I genuinely wouldn't have got through the past year with out my GP! This is making me feel much more positive about the next months! Massive thank you to all xx

  • hi Glad you are feeling mentally more able to cope. I had my instructions for injections and did my first one it was so easy and didn't hurt at all. xx You are lucky with you team they sound very on the ball which hospital do you go too? xx

  • I'm getting the impression in very fortunate with my team! I'm being treated at th countess of Chester and they are truly wonderful!!

  • Hi thanks I think it is great to get some really positive comments about services I have just changed hospitals so it is good to see comments that can reassure you. Hope it continues to go well. xx x

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