Gets you down

I have been diagnosed with rheumatoid arthritis in September I have it in my feet wrists arms hands shoulders neck and worse of all my ribs I have been signed off work I cannot go on like this so much pain losing lots money and on maximum methotrexate really gets you down is there light at the end of tunnel?

30 Replies

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  • Methotrexate takes time to kick in but you must have blood tests every month as it can damage your liver

    Biological medicines are very good but expensive

    Takes time to get it under control but you can get flare ups

    It's a very up and down illness , sorry

  • Thanks I have had blood test I had thyroid cancer 17 years ago so they keep a close eye on me .it is awful isn't it thanks for reply

  • Hopefully yes - a lot of people work and have good lives but (there is always a but) the drugs take time to work. I could hardly get out of bed for the first few months and once the drugs kicked in I began to improve and once on biologics as well as meth otrexate im much much better I do look after myself - take supplements , exercise - swim yoga walk. Im at night school doing maths gcse to give me something to aim for - I eat as healthy as i can - keep my weight down - work full time now and dont get as exhausted as I use to and I will be 70 in a week or so. There are ups and downs but for me there are more ups at the moment - Ive been diagnosed 3years - good luck hang in there and get as much advice as you can re - your money situation xxx

  • Thankyou you sound positive I'm so independent but not at the moment.may I ask what you do for a living I'm a cleaning supervisor and I'm struggling so much I just don't know what to do.i have applied for pip been turned down twice I'm at the end of my tether thanks for your reply

  • A job for me is everything - I work in Day centre with adult learning dissabilities during the week and at week ends I work in a craft shop - I have never done shop work before and have only been doing it 3 years - about the time I was diagnosed so it was all a real learning curve for me but I love it. The reason I work so much is that I cant manage on my pension and the drugs have been for me a great help and also not long after I was diagnosed my husband left me saying I was useless and a looser - no good any more !!! In the beginning I just use to sleep and go to work but over the years Ive joined classes go swimming etc and at the moment life is good (could be better - i sometimes get very lonely but lonely is like anything you learn to manage it.) If you cant work go to CAB and find out what and how to get financial help also your employers should by law be able to help you with your work situation - are you in a union ?? I dont have a contract at day centre so I never say anything about having RA and no one seems to notice my hands are a bit odd or if they do they probably think its jiust my age. Get help - information - it will get better - you will get lots of good sound advice from this site about financial help and your job and lots of love and support. dont be to sad every one on this site will give you good support take care xx

  • Thankyou so much it is very nice to hear it from someone who is in my position it is difficult I have a good family a partner of 29 years and two sons 18 and 22 but I feel very low with it all I had thyroid cancer when kids were young so it has been a battle and I'm only 47 xx

  • loved yr reply and attitude, wish i were nearer to swim with but guess u are notxx

  • Seascale - Cumbria - near Egremont

  • bit far, sadly - maybe a RA group near you? xx

  • I dont know of a RA group - I do get a lot of support from my nurse and consultant so I manage ok.

    ps I also had cancer when I was younger - life sure can get tough - you will get better, happier,fitter things will improve for you - xxx

  • Hi

    Yes for most of us there is light at the end of the tunnel and it is usually when you find the right meds that work for you. I had an initial 4 months off work then with the help of steroids managed to get back to work. It took a year of adding in different drugs etc before things got controlled. I'm on a biologic now along with mtx and leflunomide and things are pretty well OK.

    Talk with your rheumy nurse and find out what the plan is for you now as it doesn't sound like methotrexate alone is doing enough for you.

  • That makes me feel so much better Beaches2, as I have now been off work 4 months and am desperate to get back to work by the end of this month (and get my sanity back)

    Just been given another course of prednisalone to tide me over till my next appointment as the mtx alone hasn't helped that much, so fingers crossed....xxx

  • Yes, once you're on the right meds for you, you should be able to continue working for many, many years. I was dx as a child, had it 10 years before I started work at 16 and managed 22 years before I had to stop. Don't allow RA to hinder you!

  • Thankyou so much it's so nice to talk about this and people understand x

  • Bless you. I can't add anything to the excellent advice already given but sending you big gentle hugs

    Jan

  • Thankyou so much just being on here has lifted my mood thanks x

  • There is definitely light at the end of the tunnel. We have many excellent medicines and once the right combination has been found for you, it will get better. Have you spoken to the NRAS help desk? I would strongly recommend that you do. They can give you good advice on all aspects of RA. All the best and please don't give up hope.

  • No I haven't I could do that today thanks I'm more positive today but last two days have been awful very low thanks x

  • If your already on meds for r a then yes there's light at the end of a tunnel but it is an instant think it takes time for meds to kick into your system but youl certainly notice when they do ,good luck

  • You poor soul babybaps!

    This bit is just the worst and the way you are suffering is so familiar to a lot of us. Of course that doesn't make it any easier but what it does do is hopefully reassure you that it WILL get better ( not cured of course sadly) but better than you are today.

    I won't deny that it's a constant battle and there is no let up with the pill taking, jab administering , blood testing etc etc but in my case I was unable to work in my very physical taxing job for roughly 11 months before and after my diagnosis of sero negative RA in the summer of 2015 .

    I am now back at work and relatively well controlled ( still have bad days) on Hydroxychloroquine, Enbrel ( now Benepali) and Tramadol for pain during the flare ups. Not that even Tramadol touches it when it's in full flow!

    I did start to take regular Naproxen but my tummy was agony so I was advised to stop immediately and only use NSAID's when I'm flaring.

    Sending you very best wishes and much sympathy , hoping you get relief very soon.

    Mx

  • Hi Babybaps44, you've obviously made the right choice joining this site. We all understand your situation & pains, family and friends may be giving sympathy, but unless they have similar conditions, they don't really know how we are feeling. We, on the other hand do. So complain, winge, rant & rave as much as you like, we're all in the same boat. BUT I DO THINK WE'RE GOING TO NEED A BIGGER BOAT 😉

  • Yes there's always hope! I was diagnosed at 49 that's five years ago now. Luckily I didn't have to take time off work and my RA has stabilised on sulphasalazine and mtx. I work full time and have a very busy family life too with a husband, 18 year old son and our widowed mothers! I also find time to go to the gym and volunteer at my church as well as baking for a hobby.

    I never dreamed I'd be able to do all this when I was first diagnosed. For a start, I was reeling from the shock of the diagnosis for the first year as well as dealing with pain in my knees, feet, shoulders and hands. With the support of a fantastic rheumatologist and his specialist nurses and shared care from my GP, I've been able to get where I am today and I'm so thankful.

    Hang on in there until the treatment starts working, or you find the correct regime for you. Best wishes and good luck - the support on here is fantastic too!

    Ally x

  • Thanks ally I do appreciate it x

  • I think its time to check in to taking Humira. Some people get results after their first injection. I'm on Methotrexate and Peroxicam as well as Tylenol 3 codeine and last week I gave in and told my doctor that I wanted to try Humira. I'm still waiting on the specialty pharmacy to get mine but I can't wait to start it. I was told that I could end up in a wheelchair if I get any worse. I have chronic pain everywhere and I'm tired of the fatigue. Humira helps with the fatigue and progression. You still need to take Methotrexate though. Ask your doctor, they should have samples for You to try

  • I think you're in the US? The system in the UK is different and you can't just ask for a particular drug, and biologic drugs like Humira are only allowed once you've tried several other drugs. Anyway, a drug that works brilliantly for one person may do nothing for the next person

  • I'm in uk xxx thanks for afvice

  • I'm in the United States and I wasn't telling them to ask for the meds I'm taking. I was simply explaining what I've done and a biologic would be the next step per my specialist anyway and that's what this site is about, helping others and showing them that we can all relate. We all know that not every thing we tried will work on us let alone other people. I've had just about enough of the attacks on comments I make. I don't understand why its so important to shoot someone down when they are trying to help and support. I've not started my Humira yet and it may not work on me either but you should never give someone negative feedback like that since having this autoimmune disease is so mentally and physically draining. Before I got the treatment I needed I was going to blow my head off because the pain was so bad. If I can help someone not do that then I've done my job. If we went through life telling ourselves nothing is going to help we would be in a wheelchair or dead.

  • Just to elaborate, to qualify for anti-TNF'S/biologics like Humira & depending on which health authority you're in here in the UK we need to have tried & failed on at least two DMARDs, one being MTX unless there's good reason not to start or continue on it. You also need to have two DAS scores of 5.1 or above, taken a month apart to be considered suitable for them. Babybaps44 has only been diagnosed around 5 months & MTX was her only DMARD, though she's now on double therapy since sulfasalazine's been added, so under the qualification guidelines she's not in a position to progress to these very expensive meds at the mo, not until they've proved DMARDs don't bring her under control well enough.

    It's all down to cost as DMARDs are far less expensive. You see the NHS is free at point of delivery, it's funded by the Government & taxation so we can't call the tune when under the NHS, most don't have medical insurance unless they choose to opt for it or your employer pays for it so that's our lot. As such Rheumys & others, GP's, Consultants etc, need to the follow specific guidelines. So really your suggestion that it's time to check in to Humira isn't an option for her, we can't tell our Rheumy we want to try Humira or any other anti-TNF's or biologics, this is all we're trying to get across, that our two health systems work quite differently funding-wise.

    It's a shame you think our trying to explain that it's not possible is giving negative feedback, that really isn't the case, we're only saying there are differences in our healthcare system & are unable to do as you have. I've mentioned before that we welcome anyone from anywhere, we're not limited to the UK & would like to think the majority of overseas members feel we do just that, we have many regular contributors so I guess they do! 🙂

  • Methotrexate alone didn't work well enough for me, but once other drugs were added in things picked up. Now I'm fine, and have been for years. So hang on in there and keep pushing your rheumy to review your treatment.

  • Yes they added salads alanine now thanks

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