Anybody else's experience?

Hi, Was diagnosed as sero negative arthritis about six years ago, and have been reducing Methotrexate from 10 tablets to 4 gradually. I have been on the reduced dose of 4 for about six weeks now, and although blood shows normal CRP levels, I am experiencing same symptoms as when first diagnosed, and feeling unwell. The symptoms I first started with was uncontrollable neck pain despite pain relief and this has returned, along with niggles of other joints. Has anyone else had this experience of normal inflammatory levels, but arthritic symptoms of pain? I remain on all other medication, Sulphasalazine and Hydroxychloroquine.

Many thanks


14 Replies

  • It's not at all unusual to have normal inflammatory markers but still have symptoms and possibly active disease. My rheumy uses a phrase that I believe many of them go by, saying that he treats 'the patient, not the blood results'. I know we're not allowed to give medical advice but it doesn't seem like rocket science to surmise that as the Mtx goes down, the disease is going up!

    As I understand it, many rheumys will see the blood results as an indicator of what's going on, nothing more. I think your rheumy needs to know what's going on. Presumably he or she thought you could do without Mtx so you should let them know that it does not seem to be working out. Hope things are sorted out soon but don't put up with it just 'cos of a couple of numbers!

  • Ever since I got the disease under control (with the help of MTX, Hydroxy, Sulpha and Arcoxia) I've had good blood results. About a year ago I started dropping doses as I was really questioning whether I needed all these drugs - with my rheumy's agreement. Anyway, all the symptoms came back fairly quickly even tho' my blood results stayed pretty stable (I think my CRP went from 5 to 6!) luckily my rheumy believes in treating the person not the blood tests, so I went straight back onto my previous doses. However, when I was dropping doses her view was that I should reduce Hydroxy and sulpha first, as she thought I would never be able to manage without MTX as that was the corner stone of treatment. So interesting that you've dropped this first - were you having problems with it?

  • I also reduced MTX first - The rheumy suggested this- his reasoning being because MTX is the most potent and wanted me to get down to the lowest level I could manage. So I moved down from 8 tabs to 6 and then once I was stabalized on that for a good while I have recently stopped hydroxy - I'm not sure how that is going.... It's curious because I want it to be ok and thankfully I am relatively fine still and am really hoping that this very very very gradual feeling that something is off is just temporary. :-)

    Having said that, I would contact the Rheumy nurse to let them know how you are feeling and they may either call you in for a review or give you advice on what to do. Hope you start to feel better soon.

  • It's well known that sero-negative patients can have normal blood results whilst having active disease. This happens to me all the time. The only time I had raised CRP and ESR was when I was extremely ill before I was diagnosed and, even then, they were only marginally raised. I was taken into hospital for 10 days, so it wasn't mild. Any half decent rheumy should know this and I'm wondering why they are reducing your mtx if it is controlling the disease.

  • forgot to add - my CRP usually varies by 3 or 4 points (I can't seem to link the patterns to any treatment changes ) and it was only 5 when diagnosed but i felt awful and was incredibly stiff whereas now it's slightly higher but i feel soooooo much better. go figure?

  • Hi I just started on methotrexate and the pain was like it started. I cant do my job using a computer. Early days for me but I will keep you posted.

  • My Rheumy checks my bloods but goes on my pain and swelling more! He wrote a letter saying they were great and then when I said wow the drugs must be working well but I'm still a bit sore he admitted he had written the wrong result which he changed!!

    Hope you feel better soon xx

  • Hi, my question to you is why are you not on a biologic? I don't understand the combination of all those medicines when it is my understanding that they are basically the same med. So you do one and a biologic to control your the progression of your disease.

    I have had zero negative RA for over 10 years and am no longer on methotrexate for other health reasons but I am on Rituxan and that controls my disease. I have flares every now and then but..they are mild and handled with prednisone.

    Another question, Why are you reducing your methotrxate? If you aren't having other issues with it that is usually something you stay on for a long time. Just curious.


  • It's possible that triple therapy has otherwise controlled her. Double & triple DMARD therapy is often used so it's possible that reducing the MTX too low has caused her to feel less controlled having come down from 25mg to 10mg. I do well on 15mg but don't tolerate 20mg so it can be a fine line between being controlled & not.

    As she's done well on 2 DMARDs & tolerates MTX it may be just a case of it requires increasing a tablet at a time until the desired dose is reached & if it's as simple as that wouldn't be eligible for, or even need at this stage, anti tnf's or biologics. I don't think I'd be alone in saying that until it proves necessary I'd rather continue on what has kept me upright as I consider biologics necessary when or if I can no longer cope with side effects or the disease is out of control & causing unnecessary damage. Another condition for consideration is to have a high disease activity score of 5.1 or more each a month apart & it doesn't seem as though she would have as it's only recently she's feeling less controlled, since reducing the MTX & would think, unless there is a reason for reducing it we're unaware of, her Rheumy will increase the MTX. We need to do some hoop jumping to qualify for biologics & her Rheumy won't put her forward without good reason, they're not without their own issues, & then there's the cost compared with DMARDs. ;)

  • It does seem as though your Rheumy relies a tad too much on test results Candy & not listening to you or examining you, unless this has happened since your last appointment. If that's the case it seems you might be more reliant & controlled on MTX than he's thought. Unless there was a specific reason to reduce your MTX it seems odd that's what he chose over SSZ & HCQ. In my experience MTX works on my RD best, at 15mg it certainly controls me better than 400mg HCQ or as double therapy.

    If your neck pain is becoming unacceptable &/or accompanied by severe headaches you should be mentioning it to your Rheumy & he'll probably examine your neck & spine & hopefully order cervical spine x rays or, if necessary, an MRI scan to determine the cause.

    If you're not due another review I'd let your Rheumy nurse know your symptoms are returning having lowered your dose. She should be able to advise you.

  • Hi Candy, a big YES to your question. I was on 20mg/.8mg Methotreate and it did wonders despite terrible hair-loss and other side effects. Being on it had lowered my blood inflammation levels to almost a person without RA, however despite the low readings my pain and flares are still happening, because my MTX was lowered. I wonder if it takes some time before the blood inflammation markers they test for climb back up.

    Since you have reduced MTX for six weeks now, it is curious.

  • Many thanks for all your replies, and it's good to know advice from others who have had the same experience. Because I had been controlled, rheumatologist felt we could reduce gradually as I was experiencing nausea and abdominal pain when taking methotrexate. Well the reduction has gone well untill recently and I think like many of you here, suspect that I will need to increase them again. So my plan of action is to phone Rheumatology on Monday and see if this is what they advise and how I need to go about it. Again many thanks for your advice and knowledge as I was unaware that with a low CRP this could happen.


  • If you have bad neck pain, has your rheumatologist ever suggested spondyloarthritis rather than RA? I'm saying that, because even though some folk with spondyloarthritis do take MTX, it doesn't act on spondy as a DMARD in the same way as it does on RA, and will generally only help the peripheral parts of spondy (hands, feet) and has not been shown to have any significant effect on axial (spinal) spondy. If you did have spondy, then I wouldn't be surprised that your neck still hurts. If you have pain in the lower back and sacroiliac joints, then I'd definitely be questioning the rheumatologist about the possibility of spondyloarthritis.

  • Hi, Thanks for this. Neck has always been a problem, and was the first signs for me that something was wrong. I do have problems with my back, sometimes finding it difficult to bend to put clothing on. My neck always crunches on movement and seems to stick at times. Will mention to Rheumatologist when I next visit, although appointments are getting further apart due to busy clinics. On first being diagnosed I did have MRI scan and visited another department due to having jaw involvement as well. MRI scan results were fine though.


You may also like...