I'm feeling very down ATM and anxious about my prognosis. My RF was a weak 36 u/l but my anti-CCP was a strong positive at 298 u/ml

I'm now 10 weeks into taking methotrexate and still feeling miserable and unwell. I just wondered what others' blood results were and how they've responded to treatment. I know you can't really compare one persons experience to another, but Im feeling very gloomy today. It's really difficult to talk to family and friends as they tell me off for not being positive - it'll make my illness worst or advise me not to look on line. But sometimes I want to think about the reality of this diagnosis.

Sorry this is just a long moan, just needed to put it somewhere xx

37 Replies

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  • Hang on in there- my anti ccp is and was >340. It's takes a while to get used to it all. I'm back to work full time now. Give yourself time to grow into this new skin- it's going to be OK ☺

  • Oh how I wish to getting back to my life. Two years of ra meds that didn't agree with my body I'm 3 weeks into enbrel and it feels good so far . I was told in a mounth I should feel alot better , can't wait. Good luck to everyone's healing health

  • Thank you Moomin. That is really good to hear. How long did it take you to get back to work and what medication are you on?

  • Thank you, your post just now is the first positive . I pray it gets me up on my feet.

  • Methotrexate takes about 12 to 16 weeks to work on your body. As for me, I started to feel much better after about 4 months, then I started to look forward to increase the mtx to reduce the inflammation and pain on my body each time I saw my rheumy since. You are still very new, therefore just give yourself sometimes, you will feel better after another few weeks.

    Keep a record in excel for all your blood results. You can then monitor your performance very well. If you see any indicator out of range, just ask your rheumy for an explanation. Keep a record of the food that you eat that affect your body. Eliminate the food that gives you more pain. Also always list down the question you have in mind as and when you have one, bring it along to ask your rheumy during your visit. Keep a record on the pain you have, it will come very handy when you visit your rheumy.

    Below are very informative and very well organized videos about RA that answered most of my questions at the early stage of my diagnosis: -

    healthunlocked.com/ra-warri...

    My story of my recovery process that I hope to inspire RA patients not to give up because we will be able to go back to our normal life one day when we work on thing positively.

    healthunlocked.com/ra-warri...

    Your need to get on with some exercises to the limit you can tolerate during your recovery process to avoid your joints being stiff. Below were some of the exercises I did at the very early stage of my disease.

    healthunlocked.com/ra-warri...

    Good luck and just hang on there, you will be fine very soon.

  • Thank you so much Amy

  • I'm sorry you're feeling so down Barb. For many the early months are no joy ride but your meds are having to work hard getting your disease controlled & meantime you feel rubbish, it's why often we're given a steroid injection or a course of steroids to help bring down the inflammation & in turn the pain. There's no point sharing my diagnostic RF & anti-CCP levels because they were done in a different country & bear no resemblance to the lab test levels used here. Five years later though when I returned to the UK & first saw my Rheumy she repeated the test for her baselines & my RF was 1280 & my anti-CCP was 14, confirming my seropositive diagnosis. Bear in mind that I'd been on meds a long while & had a break of 3 months from them waiting to see a Rheumy to reinstate them.

    I responded well to my initial treatment. I started on hydroxychloroquine, a course of oral steroids & 2 NSAIDS, one to take daily & the other for breakthrough pain & if I had an increase of inflammation. The thing is we all react differently & it's not unusual for a DMARD to appear to be doing nothing then one day you feel very much different & that's it, it's working. You've been taking it 10 weeks & the average is 12 but it can take longer so don't despair just yet, I'm sure if your Rheumy is concerned you're not responding he'll increase the dose or recommend changing DMARD.

    If you ever feel you want to talk here with people who live with the same problems just pop on here, there's always someone around who'll reply. It can be difficult for family, they likely know little about RD or understand why you're feeling like you are. Do you think they'd have a read through the NRAS website, or specific pages for the newly diagnosed, they may get it if they read what you're going through? The website is nras.org.uk & the download for newly diagnosed is here nras.org.uk/publications/ne... maybe printing it off for them would be an idea. x

  • That's a really good idea nomoreheels and thank you. I find your replies particularly reassuring xx

  • Being on this site has helped me cope with giving help to understanding I'm not alone..methotrexate made me feel like my organs were poisoned. I was nauseated 24 /7, I had to try another med

  • Hey Barb... I hope you feel better. If the Methotrexate doesn't work for you, look into LDN (Low Dose Naltrexone). There is a facebook group called LDN Got Endorphines that has a lot of users who can help if you choose that route. It apparently helps a lot of people, and it seems to be much safer than Methotrexate and similar drugs. And instead of suppressing your immune system, the LDN helps regulate it.

    I just got diagnosed for RA a couple of months ago after a decade of pain. My anti-ccp levels were 1,660. I'm taking the LDN, but it's not working yet (still lots of pain). Apparently it can take months just like the Methotrexate.

    Have you tried going on the AIP diet? I'm reading a book by Tom O'brien. In it he mentions how food intolerances like corn, soy, dairy, gluten, etc can cause these auto-immune issues. Something to consider if you haven't.

    Anyway... sorry if I'm preaching to the choir here. I"m just trying to share what I've read. Best of luck.

  • Wow that makes me feel a lot better about my anti-ccp :-) and no I haven't read that book, although I am reading quite a bit about diet. I just need to feel I have some control over this and think it will help to start looking st what Im eating. Yesterday I had a bad day but ate chocolate and toast!

  • Yeah, it's tough to feel out of control. I haven't found anything that works either. That's good that you at least are able to tell when eating certain things bothers you. I personally don't seem to feel noticeably better with diet changes (at least not yet).

    Speaking of anti-ccp... do you know much about it? There isn't much info online in regards to how it relates to RA, when and if it needs to be re-tested, what it even really means in the scheme of things, etc. Was just curious if your doctor explained things to you better than mine did to me.

    Thanks

  • This explains the anti-CCP test & its use in Rheumatology Needforname in non scientific text. You may have read it, if you have just bin it rheumatoidarthritis.org/ra/... It is from a US site but the same info applies in the UK. I do have other info if you've already happened across it though they're not written from a patient's perspective, this if far easier explained in my view!

  • Awesome. Thank you! I'll definitely read it.

  • I am also on LDN and AIP diet. For me it has worked quite well.I am not on RA meds. Was diagnosed in Dec. 2015 with negative RF and possitive CCP. LDN works slowely in RA where as the AIP diet often makes a difference sooner. The good thing is also that you can take LDN and be on the AIP diet with the RA meds and this combination has helped to reduce the RA meds.

  • Thanks Ill check it out

  • It's really a good idea to take diet and LDN along side Mtx since you do not know if the med works for you and it may take a long time to find the best combination and if not, to get to try biologics. The anti inflammatory diet and LDN can only make make you feel better when they work, no side effects.

  • Hi - I was off work for 6 months. I started on mtx (only 10mg for 3 months or so and then 20mg) first on tablets and then injections (pen-like) Sulfasalazine was added in August. We applied for funding in October for biologics and I started Cimzia last week. I returned to work with a gradual return in July (diagnosed late last December)

  • Moomin thank you - is it difficult to get the biologics? So you were on mtx and sulfasalazine when you returned to work? Why did your rheumatologist then decide to apply for biologics? Sorry for all the questions, but it really helps to know others time scales as I feel pretty dispirited xx

  • I sort of got used to RA and my body was not reacting in a positive way to the meds - not in a reaction way but just not improving: getting worse! In order to get biologics I had to fail on 2 dwarfs and be getting worse. I had to have at least 3 months on Sulfasalazine and 2-3 visits with bloods worsening before we could apply. At one point I couldn't even walk!

  • Just read my reply 😅fail on 2 dwarfs!!!!!😂Of course, I meant to say: 2 dmards - don't you just live predict text!!!😊

  • I rather liked dwarfs! 😂😂😂and yes I live and love predictive text xx

  • Hi

    I had negative rh factor but positive anti ccp and was in a dreadful state when I got to see rheumy. Had sudden explosive onset. I staggered through the first year from one steroid jab to the next while we tried methotrexate then added leflunomide then added enbrel. Unfortunately things were still bad 😔. I was changed to abatacept and bingo......been diagnosed 3 years and last 2 I've been fine. More or less back to normal and getting on with my life.

    It's very early days for you and best I can say is have faith that things will get much better once your meds are sorted and working. It's normal to feel down and gloomy at this diagnosis but honestly things can be OK. X

  • Thank you Beaches2 -and really nice to hear you're ok xx

  • Hi Barb - Sorry for the "telling off.." My family never did that, they just didn't believe it was as serious (or as painful and debilitating) as it is. The problem of course is that you really learn the most about RD when you or someone you love, gets it... You are always welcome to come here for an ear.

    Looking on line is very hard not to do, and it should not an issue if you just remember to take what you find with a good healthy dose of skepticism, and that you vet your resources well.

    Gentle hugs

  • I hope you are feeling better already, but if not don't despair. My anti-CCP was >340 (RF negative). Methotrexate took about 4 months to start to work and then I improved over several weeks. Massive difference. Everyone is different, but I hope your experience is similar. x

  • Thank you Lawra so encouraging to hear you improved from 4 months. I'm now at 12 weeks on mtx and still no real improvement, maybe a little less effected by the the side effects of the mtx (less sick and tired).

    How are you now Lawra? Xx

  • I feel great. I am eating less processed foods, I've lost weight and am feeling the benefits of regular exercise. I just got back from a lovely warming holiday in Spain. Right now, I feel better than I did before RA. I felt worst at diagnosis. It really gets you down. I remember thinking I would only get worse. Hopefully this will keep up! I hope you start to feel better soon x

  • Thats fantastic Lawra! How long have you been on mtx? -and do you take any other RA drugs too? Xx

  • I have been on MTX since June last year. 20mg. And also Hydroxychloroquine. And folic acid 6 days a week. That and the lifestyle changes seem to work for me for now :-)

  • When was the decision taken for you to start hydroxychloroquine and why? I'm seeing my rheumatoid nurse next Friday and want to have a second RA drug as I've read that reduces your risk of joint damage and combined drug treatment is the most effective? xx

  • You are right to say that to use combine DMARDs to treat the RA aggressively apparently will help to speed up the recovery process.

    My rheumy added leflunomide (Arava) after a year of mtx alone because she said that my progress then was still consider slow hence she added that to me. That was when I started to feel things were going on very well like back to normal.

    If you have gone through the 2 videos that I copied to you earlier, the professor did mention about double or triple agents would give very much better result.

  • Yes that's where I heard it. I thought those videos very really good 😊

  • Barb66, I am glad you did find them very good too. I actually questioned my rheumy why she only gave me 1 DMARD after I watched the video. My rheumy said that because my RF and CCP were negative and X-Ray was good hence the RA was not aggressive therefore I did not need the double agents. However, after a year later, though I recovered very well but she still thought that it was not fast enough hence she gave me Arava too.

    Though my RF and CCP were both negative but my ESR and CRP were 98 and 177.6 respectively then. She told me that my internal organs were all swell up with these markers but again she did not give me the double agents to start with.

    Well, they knew better and I just followed since I did raise the question of double or triple agents treatment.

  • Thanks Amy Lee I'm going to ask too. My esr and crp markers are right down now, so maybe my symptoms will improve soon too xx

  • Once ESR and CRP start to reduce, that is the good sign of improving. Therefore I believe strongly you will get to remission one day.

    Yes, just ask your rheumy when you go for your next appointment on the double and triple agents treatment. It is always good to have more information in hand to decide.

  • I was offered MTX and Hydroxy at the outset. I guess I am lucky that the first drugs they tried had an impact. Also that my liver is tolerating the MTX well. I know it's not always the case and that can be frustrating.

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