RA pain increases as day progresses

Hi I was diagnosed with RA earlier this year. I was on MTX and am still on low dose of steroids. I stopped taking the MTX about 5 weeks ago. In the last 2.5 weeks I have been in agony daily. I think I have not had more than maybe 3 days where the pain is just bearable. I saw Rheumy and Dr both told me to increase my steroids for a week. Rheumy said to increase to 5mg daily for 5 days , Dr said 30mg daily for 5 days. Rheumy also told me I must go back on Methotrexate. The thing is despite having two different rheumatologists tell me I definitely have RA my pain always seems to flare up later afternoon early evening. Pain is so bad some nights I can't sleep. Also Rheumy said 10 days plus is long for a flare up. I have been taking 30/500 mg co codamol every night for the last week in the attempt to get some sleep. Does anyone else feel pain much more acute as day progresses and has anyone else had a flare lasting over 2 weeks. How did you deal with this I am getting really frightened that this pain may never leave me. Additionally I noticed that in afternoon evening after I have eaten pain seems to increase. E.g. today I had boiled egg for lunch followed by blueberries a banana and pumpkin seeds my pain has got really bad.

I am not managing have been so tearful and am at my wits end. Please any tips would be great.

Thank you

12 Replies

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  • When you were diagnosed with RA did the rheumy tell you the details he used to make the decision? What I mean is whether there are definite blood test results, antibody tests, X-rays showing erosion or distinct RA joint swelling? Because if so then it does seem that you have RA. And anyway it's unlikely that they would have prescribe drugs you with methotrexate of they weren't sure.

    RA is a very variable disease, so pain levels and timing are very individual. When I was first diagnosed the nights were the absolute worst, and like you I couldn't sleep from pain. And I was in pain for months! To me a flare is when your disease is normally controlled and then bursts into activity. If your disease isn't controlled then it's in full flood all the time.

    So I'd try to talk to your rheumy about why you don't want to take methotrexate and ask about alternatives. Steroids and co-codamol aren't a long term solution if you can avoid it.

    And for now try using heat pads and ice bags. I also found body pillows very helpful to help me find a more comfortable position to sleep in.

    It's so rotten at the beginning so I hope that things mprove for you soon.

  • Thank you . I have just emailed my Rheumy as I have been in agony. After I was diagnosed I went for a 2nd opinion as I wasn't sure that 1st Rheumy was right but even 2nd Rheumy says I absolutely have RA all bloods swelling etc show that I have it. No joint damage as of March 2017 but thats why they both have said I should be on max dose MTX to prevent joint damage. Apparently hitting It aggressively according to both the Rheumy's is the best option. I hated taking the MTX I was exhausted nauseous couldn't concentrate and terrible headaches .i have compression gloves on and sleep in splints ill try the heat and ice packs. Thank you so much for replying .

  • Did u try injections of methetrexate I tried tablets made me so ill I tolerate injections better but my pain gets worse during the day I also get synovitis I'm ccp positive was diagnosed in April x

  • You really do need to have a proper talk with your Rheumy Mandi. Whilst I totally understand why you took yourself off MTX, there was a reason for it, side effects can be eased by increasing your folic acid, that it is if you weren't prescribed 5mg 6 days, even a reduction in your MTX dose if you were on the highest dose 25mg or 30mg even. If you were taking your dose of MTX in one go that can also exacerbate symptoms, when I first started it I was advised by my Consultant to divide the dose through the day with meals. I was taking my 15mg as 2 tablets with breakfast, lunch & evening meal & had no symptoms of note, a little hair loss which settled within the first couple of months. I also had an NSAID to help ease inflammation further, is this an option for you? Again, it could even be you could have a reduction in dose of MTX, just whilst your body gets used to it & increase in lower amounts until an effective dose is found.

    Alternatively if you've tried all the above have you asked if you could change to injections? I had to change not because of physical side effects but I needed an increase in dose & my liver objected. With injections there's more bioavailability, less of the dose is lost as it's being delivered directly into the bloodstream, it doesn't go through the digestive system so nausea is more likely to be less of an issue, even none. It meant I could take a lower dose with the same effect.

    Or, of course you could ask if changing DMARD is an option, although if you have a particularly aggressive form & needing high dose MTX I would think you may have to try double therapy, two DMARDs, nothing works quite as well as MTX so only one of the other options would be less likely to bring you under control quickly enough. He's right, hitting it aggressively is the NICE recommendation, it gives you the best opportunity to bring the disease under control, lessen the pain & inflammation & if you have erosive RD particularly the better chance to keep your joints in good condition.

    It really is a difficult position I appreciate that but your Rheumy will wish to you be on steroids for as short a time as possible, they're not really a long term solution particularly for someone newly diagnosed. You're also best not taking high strength co-codamol long term either if there's another solution. You're frightened the pain may never leave you, that's an awful feeling, I've been there when I had a 3 month break off MTX, in fact all my meds, I had the biggest flare & never wish to be there again. Please talk to your Rheumy, I'm sure you'll work something out between you but you have to lead, explain how things have been.

    Keep in touch, let us know how things go, good luck. x

  • Yes! This is me too! I'm glad I'm not alone!

    I have been diagnosed with Rheumatoid Factor positive anti CCP negative Rheumatoid Arthritis and my pain increases during the day. During a flare I'm worse as the day progresses and at my worst in the evenings. It's always been like that.

    I do have some morning hand, wrist and feet stiffness (in fact most of the time it doesn't get any better during the day), but my pain up my arms and legs gets worse as I do things during the day. I have a lot of tendon and ligament involvement which causes as many problems as the joints. Im usually done in by 3pm and get worse towards the evenings. Maybe that's because that's when I sit down for the longest and then things stiffen up and get more painful.

    You don't say why you came off Methotrexate. I have had a love/hate relationship with it over the last year. It helps me but the side effects are pretty tough going at times. However, when I had to drop to minimum dose over Christmas I ended up having a three month horrendous flare, the worst I've ever been. I was also coming off a month on 40mg oral steroids after suspected temporal arteritis, so maybe it was coming off the steroids that made my flare so bad. I was desperate to get to Tuesday's to take my Methotrexate as it was the only thing that would make me any better. I was building up the dose by one more tablet every month (trying to avoid side effects). That's why it took so long to get my flare under control. That's the trouble with most of the rheumatoid drugs, They take so long to start working.

    It's good you have the support of your Rheumatologist and also your GP. I hope your increased steroids help bring your flare under control while you get back on a DMARD, Methotrexate or another. I usually have a steroid intramuscular injection in the bottom which can help calm a flare without the side effects of oral steroids, but if your symptoms are really bad the oral steroids might be a better bet. They certainly work like a wonder drug for me. I'd ask your Rheumatologist or Rheumatology nurse about which painkillers you can take in conjunction with Methotrexate if you back on that.

    I hope they get you sorted out soon, it's horrible feeling this ill and in so much pain and very difficult to explain to others how bad you feel and the impact it has on your life. Hold on in there, it will get better!

    Best wishes

    Fiona

  • Thank you all I read your replies in tears I don't know what I would do without having your support . I will go back to my Rheumy or call him tomorrow I need to find out more about my options . Thank you again your replies have really helped me.

  • That's what we're here for, to support one another, I'm so pleased you've found us. You know, we've all been where you are now, it's awful in the early months, probably the hardest time, well hopefully! I hope you don't take this the wrong way because I totally understand why you stopped MTX but have a read of this link, nras.org.uk/keep-taking-the.... You're not alone, we're always here for you, but you do have to be up front with your Rheumy, you need to have a good doctor/patient relationship with him because he holds the answer to you getting your disease controlled & the chance of living a better life than you are now. I wish I could hold your hand & tell you it will get better, I know it feels so far away right now but honestly once you sort your meds out, whichever they may be, it will. Take care my love. x

  • I was diagnosed in April & was put on methotrexate & prednisone. In August started feeling shortness of breath after my methotrexate dosage was increased so methotrexate was stopped. I have just been on prednisone which was initially 10mg but now I’m down to 5. My rheumatologist has suggested to try Leflunomide which I will begin one of these days (I’m still staring at the prescription bottle). I am still feeling pain quite often ice packs & heating pads (I have burns on my arm to prove it) have become my best friends. I also realized when I don’t get enough rest it’s worse. The other week I had to get a cortisone shot after doing some physical movement test rheumatologist said it wasn’t the RA that was causing the problem at the time but tendinitis. I blame everything on the RA but you should really sit down with your rheumatologist & go over these things. I try to write down all my questions before I go in this book I have. I’m blessed that as I’m writing her responses sometimes she will take the book & just write the answers as explaining to me. If you can try sending rheumatologist an email, that helps with getting all your questions out there too.

  • Thank you all . I am currently seeing my rheumatologist privately I don't seem to have much time and I don't think they say much just keep taking drugs. I live in Watford Hertfordshire can anyone suggest a good rheumatologist I should ask my dr to refer me to under NHS?i think one issue is that both the rheumatologist s I saw privately don't have either the time or are not very open to have a truthful discussion with. When I asked about trying alternatives diet etc they said nothing works but the drugs. My GP doesn't have much information either and I feel so lost most of the time.

  • I truly understand it’s like your in a whirlwind right now & your first step is to find a rheumatologist that can make time for you. In the beginning I saw two & went with one that was closer transportation wise. Well I was feeling extremely bad & reached out to his office, I never got a call back from him or the on call doctor. Needless to say I reached out to the other, got a response & an appointment. She did tell me that it’s said a Mediterranean diet is good but can’t for certain say if will make a difference. Good luck in your search for a doctor I’m in the U.S. and I use an App called ZocDoc to find doctors & I also check the app Yelp to see if they have reviews on there.

  • You can not just quit taking any med.

    Get to the best rhum Dr you know ASAP.

    YOU could die from taking MTX wrong.

    Are you taking folic acid ?

    Good God get a better Dr NOW !!

  • Dear Mandis,

    As the other said, you cannot just quit methotrexate without the approval of your rheumy. You need to read a lot of good information to equip yourself to fight the disease. When I was diagnosed in Jun 2014, I was in pain for months. I hated methotrexate because of the side effects but I still continue to take it as it would do me good than the side effects. About a year down the road, I was able to walk better and able to stabilize myself very much better.

    I am now in remission hence I am back to my normal life now. I went back to the court game and I went for bowling too recently without much problem but I still tried not to overdo it to avoid any problem to my joints.

    Below few very good links for your information: -

    Side effect of methotrexate:

    healthunlocked.com/nras/pos...

    2 very good videos that answered most of my questions at my early stage of RA:

    healthunlocked.com/cure-art...

    My journey of recovery:

    healthunlocked.com/nras/pos...

    If you have time, do check my profile out to see what I did during my recovery process, the exercise that I did and how I made my fingers and elbows straight again. The process was very painful for months not on and off for me, and I am glad that I make it finally.

    Amy

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