Acute Pain with "inflammation markers" normal

[SAGirl123]

New to this board, and found information available very helpful. It's coming up 2 years since diagnosis - have been part of a research trial at the Rheumatology Department i am attending. Was put onto hydroxychloroquine as i have an unresolved liver condition which contraindicates the use of methotrexate etc. Blood results of tests taken in June showed CRP level down from 20.2 to 6.1. Consultant said it showed hydroxy is working - but i still have acute pain. Cannot take anything other than paracetamol and ibuprophen for pain because of drug interactions with other medications i take. More bloods takes three weeks ago - numbness in right hand and arm from neck now spreading to left hand and arm - EMG showed it is not carpel tunnel and waiting for MRI. Is it normal to have so much pain when CRP levels are "normal" - this could have changed since June but have not seen Dr since bloods taken - what is a normal CRP. How often should you see the Rheumatologist - the clinic I attend is so busy that it is minimum 3 months between each appointment - even for blood results.

[Josie2]

Can't believe I came back here, after a long time of not posting, to ask exactly the same question.

I have now had ra for 6 years & still no further forward with meds. Started on methotrexate which I couldn't tolerate, then hydroxychloroquine which was ok but not strong enough. Added 10mg of leflunomide but still struggling. Upped to 20mg of leflunomide but again couldn't tolerate. Taken off leflunomide & put on sulphasalazine which again bombed me out. Put back on 10mg leflunomide & still on hydroxychloroquine, again not strong enough to help. Just recently upped again to 20mg leflunomide which helped hugely with joints but after 3 months couldn't cope with it, totally bombed me out & left me massively fatigued, lethargic & taking time off work.

Through all of this my consultant keeps telling me my ra blood tests are within normal range yet I'm still crippled with pain in my shoulders & hips. I very rarely flare in my knuckles but do in my wrists.

I keep explaining this every time I go but they won't change meds as bloods are ok. My ra nurse even said today she's never known ra to cause flaring in hips!

Sorry to bomb your thread but I'm in exactly same place as you, after 6 years.

I'm considering asking gp to send me to different rheumatology department in another hospital, someone who listens & doesn't just look at blood results.

Take care & again sorry for bombing your thread x

[Damaged in reply to Josie2]

A company in Canada, Augurex, has identified a new protein for RF negative or seronegative people. This protein 13.4.4 is able to identify RA far more effectively than RF. They are currently working on a new Biologic using this new protein. My heart goes out to you. Although I am seropositive with all markers off the charts it is a constant battle. I was diagnosed in July 2015. Since then I have been on Methetrexate , now subcutaneous 25mg, Hydroxychloriquin 400mg, Prednisone for sixteen weeks then bad reaction so discontinued. From Neurologist, Lyrica, vitamin D, Folic Acid , Omega 3 , Calcium. Finally now on Biologics, Humira . I now have pneumonia. It has been a very difficult journey. I have many drug allergies. Also have a 65pd weight loss. Now a whopping 105pds

[mirren in reply to Josie2]

Josie, if you cut and paste this and make a separate thread you will get responses. Xx

[SAGirl123 in reply to Josie2]

That is also basically my question - should the hydroxychloroquine be controlling the pain or is it only the inflammation it works on. have been to occupational therapist (referred by rheumy) and have worked with her - have wrist and thumb splints, plus a splint to keep arms straight at night. have been to podiatry and am working with her on correct in-soles etc. Scans done during research phase showed grey scale in a number of joints plus joint breakdown in others - particularly toes. Having lost 5 1/2 stone has made a difference - but other meds don't allow for trying natural remedies.

Thanks for replying.

[Cornishrex]

I've had a similar problem, in the sense of completely normal CRP and ESR since my diagnosis, but continuing pain in my feet notwithstanding how many times they upped the dosage of my MTX. I kept on asking them t actually look at my feet rather than relying, seemingly entirely, on the fact that I have positive anti ccp. Finally, a year after this whole palaver started, the rheumatologist finally agreed to send my feet for an ultrasound. They found a lot of nerve damage - three Mortons neuromas in both feet as well as what they thinking may be the beginnings of bunions. But nothing that looked like rheumatoid arthritis inflammation.

If they haven't already looked, I suggest you push hard for actual scans of the bits that hurt.

[Hidden in reply to Cornishrex]

Yes, I would ask for scans for joints that hurt. My hospital is quite good, I ask and I get whatever scans and injections I need but think this is not the norm.

[SAGirl123 in reply to Cornishrex]

Thanks for replying - see my message above. Also have mortons neuromas. Very difficult to find shoes/boots that look fashionable but will take sore feet and special insoles.....!

[Hidden]

Yes, I have this but I am sero negative. Apparently, it is quite common if you are so I don't think about it any longer. I go totally on how my joints are, pain and swelling, as does my consultant. 3 months between appointments is quite good. With my blood results, I phone up the day after and get them. I don't wait until the next appointment. In any case, they should contact you immediately if anything is wrong.

[oldtimer]

It can be really annoying when people treat the tests and not the symptoms, unless they take the time to explain the reasoning behind their decisions. (When they do it often sounds much more sensible! ) But i can only suggest that you keep good personal records and be assertive about your need for good pain control.

[WadeTate]

Hi SaGirl,

Have you tried DLPA for the pain?

You might be having tendon issues. They can shorten and become stiff due to using them less, same thing with the muscles. Make sure you're getting plenty of healthy fats, coconut oil, avocados, raw egg yolk if you can stand the protein.

Glucosamine gel is good stuff too.

Odourless garlic

Evening primrose

Vitamin E

Cod liver oil

Vitamin D (possibly up to 4000 ui a day is now being discussed as reasonable and safe)

Should really be in everyone's daily regime

Serrapeptase will help loads but check against your meds. Gets rid of all that fibrotic tissue damage and really frees things up, also relieves pain.

Yoga and gentle stretching will help, as will exercise.

Cut out the cakes and breads, eat stuff that builds cartilage, try eucommia bark tea.

As always check with your doc and do your research.

Best wishes,

Wade

[carotopgal in reply to WadeTate]

Thank you for this reply! I just did some research and will be ordering some Serrapeptase.

Vicki

[SAGirl123]

Can't use much in the way of natural/other remedies - due to other medication and a liver condition which despite many scans, biopsy and MRI has shown no definite cause. Do not drink at all, and not meds related but been told by doc not to use natural items as it will push up ALT's. So just trying to reach a happy medium between different conditions.

[WadeTate in reply to SAGirl123]

Have you tried beet juice for your liver issues?

[WadeTate in reply to WadeTate]

youtube.com/watch?v=SlhrRjH...(Not working as expected?)

[WadeTate in reply to WadeTate]

youtube.com/watch?v=YI_XlHo...(Not working as expected?)

[flow4]

I am sero-negative too, started on Hydroxychloroquin just under 6 weeks ago, and was also given a steroid injection at the same time. I have had a really good response so far: my inflammation has almost gone, my pain has dropped by about 80% and my IBS has gone, among other things...

BUT - I also have osteoarthritis... It's in my hands and my right knee and my feet, particularly. And I have some pain still in all these places - it's a different pain - not hot and tight and swollen, but a sharper, drier sort of pain. A couple of my fingers hurt a bit too, which I guess is where I already have a couple of small erosions. And I also have an impingement in my shoulder - something that pulls out of place and gets stuck or twisted sometimes - definitely mechanical - and that hurts too. Sometimes, if I overdo things, my muscles will ache as well...

So my point is, the RA drugs treat the inflammatory pain but not ALL pain. They're not pain-killers; they work by reducing inflammation and/or stopping your immune system from attacking your joints, which is what causes inflammation. They don't fix joints that are already damaged, or sort out any kind of mechanical problems. So since you still have some pain in your neck, arm and hand, it's quite likely it's not related to your RA at all, but instead is mechanical or degenerative... You should def get x-rays, if you haven't already; and if they are normal, it would be worth trying some sort of sports massage or another massage technique that will help release muscles... Hope you can get it sorted - it's horrible having chronic pain!

[SAGirl123]

Thanks for your response! I also have osteoarthritis in big joints: knees, shoulders etc. So think some of the pain is coming from that. i guess it is a case of trying to be sensible about what i try to achieve in a day - the exhaustion from the pain is one of the major problems. Have contacted rheumatoid clinic but waiting for response.

[slou222]

I'm new here, and SAGirl123, you are singing my song. I've was diagnosed almost 5 years now. My Rheumatologist insists that with my inflammation markers down, I'm in 'remission' and any pain I'm dealing with is not due to the RA. I had CRP markers as high as 11, and I got it down to normal range with diet. But my pain never went away. Nor the fatigue. The RA has caused a ton of tendonitis and tenosynovitis in my body everywhere: wrists, shoulders, ankles, feet, knees--you name it, it's there. My Rheumy originally told me that those conditions were caused by the RA; yet, he won't help me at all. Now he says I must have Fibromyalgia (roll eyes). It's so frustrating when doctors refuse to listen to you about your pain. I keep asking him, how can I be in remission when none of my pain has ever gone away? I still get flare ups in my hands, my shoulders, and my feet. Oh, and I had a test for carpal tunnel when we were first trying to figure out what I had, before the RA diagnosis, and it was negative for me as well. I would love an answer as much as you!