Hello im new to site. I was just wondering if anyone ... - NRAS

NRAS

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Hello im new to site. I was just wondering if anyone has the same issues as I do. Bloods say im normal. But im in so much pain

Pipcat15 profile image
13 Replies

On methotrexate 12.5 mg and 5ml folic acid a week

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Pipcat15
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13 Replies

Hi Pipcat,

I'm sorry you are in such pain. Maybe you need an increase in your dose of MTX. I was on 23mls injections and my rheumy wasn't happy with my joints (neither was I) so she increased it to 25mls. She still thought there was room for improvement, so added in 10mg Leflunomide - bingo - she was happy and so was I. Also, I took 30mg Folic Acid, one every day except for MTX day. Don't know whether that made a difference.

Pipcat15 profile image
Pipcat15

Im on my second week of increased mtx was at 10 now at 12.5. Im back to see the rheumatologist next week so im hoping for some solution. But as my bloods are saying im normal they are not really looking at me and my symptoms. And have been reluctant to up the dosage. I will try tho

nomoreheels profile image
nomoreheels

I generally have good blood results but do take other meds alongside my 15mg MTX. Has your Rheumy not prescribed any other DMARD or NSAIDS or pain reflief?

Pipcat15 profile image
Pipcat15 in reply to nomoreheels

No not anything else. Im not prescribed any pain relief. I just get over the counter ibuprofen and paracetamol. Wouldn't give me anything else.

nomoreheels profile image
nomoreheels in reply to Pipcat15

I only ask as it's usually the norm to prescribe another DMARD, though obviously not always & it does seem as though you need to mention taking ibuprofen & paracetamol to your Rheumy next week, if he didn't suggest it. My concern is if you need the extra support of an anti-inflammatory & painkiller there are other options which won't have adverse affects as both these, if you're taking them on a regular basis, can give you problems with your stomach lining if you're not taking a ppi alongside, not to mention the effect it could have on your liver long term. This obviously isn't showing in your bloods at the moment but possibly in the future. Were you experiencing the pain you have now at your last appointment? Sounds like he needs to listen to you & not just rely on the tests.

Pipcat15 profile image
Pipcat15 in reply to nomoreheels

Ive had this for 5 years and been on nothing else but mtx and folic acid. Yes rheumatologist told me I can take 3 x 400mg of ibuprofen and up to 8 paracetamol a day. Would not give me any thing else. Last seen 2 weeks ago. I'm back next week as im not happy. I feel like im getting a raw deal with my treatment now im reading what people are on and taking.

nomoreheels profile image
nomoreheels in reply to Pipcat15

I'm inclined to agree about your treatment & going through similar although mine took me off a couple of mine (not my Rheumy an SpR), now reinstated by my GP when he saw the state I was in. There are some good Rheumys out there who look at the whole picture, it's just finding one! Had some who did in the past & I was well controlled. I see mine in July & wondering what her thoughts are regarding being back on steroids.

Keep us informed what happens next week.

Jeanabelle60 profile image
Jeanabelle60 in reply to Pipcat15

back when i was first diagnosed i had to go to my GP and i told him straight that i was very unhappy with my lack of treatment from him/her. i told him/her about the amount of pain i was in and i expected him/her to prescribe me adequate pain relief........ my GP apologised and wrote me scripts for tramadol and paracetamol. i got tramadol 100mg for daily use and tramadol 200mg for when i have a bad flare. sometimes you just have to draw a picture for the GP's. best of luck.

Chatham profile image
Chatham in reply to Pipcat15

Have you a Pain Clinic at your nearest Hospital? GP did give me Tramadol that didn't help much. Rheum Doc told my GP to refer me to Pain Clinic. Best thing to happen. Got strong pain meds sorted and if I have problems with them I can go back.

Pipcat15 profile image
Pipcat15

What I don't understand is how my bloods say im normal and yet be the worst I've ever felt. Pain is intense. Ive been on as low as 7.5 of mtx on no painkillers for about 2 years. I thought it be food related. Anyone had a food sensitive test. Ahh its so frustrating not noing whats going on

claireyj profile image
claireyj

Hiya - I know how you feel I have an RF of 340 and am strong sero positive but my crp levels in my blood are always normal ?! This blew my mind last year as I literally couldn't walk and would have cut my feet off they hurt so much .... It was tricky when trying to qualify for a biologic (DAS score) which I now take as it had to be done on the fact that I had tried 2 other dmards , and the inflammation was read from ultra sounds , x rays, swelling and lack of mobility . It does seem odd that some of us don't show inflammation in our blood work one of those mysteries associated with RA - your rhumi team will be able to help you - take care Claire

Pipcat15 profile image
Pipcat15

What's even stranger for me. I had xrays done they found nothing and a ultra sound and no inflammation was fonund. I wantched and not one speck of red appeared on the screan To show witch indicates inflammation

Sometimes the opposite can happen too. When I was having 15mls MTX injection, I felt ok, with no flares or painful joints. But my rheumy wasn't happy and added in a 10mg Leflunomide tablet!! I didn't feel any different, but my rheumy thought there was improvement.

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