My partner has encouraged me to join this group as I'm in a big mess with my RA.
I'll try and keep it as brief as I can. I was diagnosed with RA (Sero Positive/CCP Positive) in 2021 and given Sulfasalazine. (My partner was trying to get pregnant, so no Methotrexate). My symptoms were joint pain in my wrists, hands, knees and elbows. The GP sent me for a blood test and it came back with CCP of >200 and Rhum Factor of 26. No elevated inflamation markers. Sorry, I'm not familiar with the acronyms just yet. No visible swelling anywhere, but they also found evidence of Synovial Thickening in my feet on an ultrasound.
After taking the Sulfasalazine for over a year, I still had a bit of pain in my feet. So they tested me again and found antibodies for secondary Sjogrens Syndrome. So they gave me Hydroxychloroquine, and upped my Sulfasalazine to 1.5 grams twice a day.
Another year later and I still had pain mostly in my feet. So I asked if I could be changed on to Methotrexate as I know two friends who both have it, and they're living a pretty normal life. The Rhuematologist is saying no as I don't have any visible swelling and my inlimation markers are normal in the blood tests. I said I would stop taking the Sulfasalazine and Hydroxychloroquine as they were't working. He just shrugged. So 3 months later I'm not taking anything and I'm in a right mess. The pain is in all of my joints. My wrists, hands and shoulders are unbearable, but I still have no visible swelling. The Etoldolac anti inflamatory was really helping but the specialist stopped it as apparently you can't take it for too long. The new one isn't touching the sides. Codeine isn't really helping either.
I'm hardly sleeping because of the joint pain, and we have a 1 year old baby. I'm really at the end of my teather, I don't know what to do. I don't know if I have thr right diagnosis. The Anti CCP of 200 is very high apparently, but the Rheumatologist says he's never seen a case of RA that doesn't have visible swelling. I feel trapped in this situation with no way out.
I really hope someone on here can helpme, or at least help me get going in the right direction. I feel desperate now. I'm sorry for the downbeat post everyone.
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MrJinks512
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Methotrexate/Mtx (& add Rx for folic acid to reduce Mtx side effects) is the “gold standard” for RA treatment - so I don’t know understand why the rheumy won’t prescribe it.
It’s time for a second opinion….
(& rheumies usually give patients prednisone Rx to relieve pain until the Mtx “kicks in” .)
He said he won't prescribe it as I have no visible swelling and my ESR and CRP levels are normal. Although he was looking at blood test results from 6 months ago when I was on the Sulfa and Hydroxy. I've never had a positive ESR or CRP though. Just >200 on the Anti CCP and 25 Rheum Factor. The pain and stiffness in the morning are much worse now though, so maybe I should get a new blood test done.
Welcome Mr Jinks, I’m glad your partner encouraged you to join us. Please don’t ever feel a post is too long, or feel you’re being too downbeat, let it all out, say it as it is, we will understand the need and try and support you. Sadly you’ve found out the hard way that your medication was actually working. Have you spoken to your rheumy about going back on it and/or having a steroid injection to help until it starts to work? It might be good to call the NRAS helpline and chat to them, get some advice where to go from here. They also have some great publications you can download and read which may help too. I’d say get a second opinion but understand that could be difficult and either a long wait or, if you go private expensive. How did you leave it with your rheumy? Do you have another appointment and is it a long way off? could you call the clinic and try and get seen sooner, maybe a short notice cancellation. If none of these are possible could you talk to your GP and tell them what you’ve told us? Show them this post, just because you refused to take medication shouldn’t mean that you won’t be seen again and given help. I really hope you get some advice and relief soon but do come back and keep talking to us whenever you need to.
Thanks for your reply and the words of support. I have a nurse appointment on the 6th of October. So I think I'll have to ask to go back on the meds then. I wouldn't say I refused to take them, I just mistakely thought they weren't helping me as the pain on them was roughly the same as before I stating taking them. Sine stopping though, it's gone up by 95%. So I think they must have been holding back way more than I thought. I just had this thought in my head that MTX was the golden ticket, as two of my work friends both have RA and are largely syptom free on MTX. I wanted to go onto it so I could get rid of the foot pain and play golf again. I feel like an idiot now that's for sure!
Hi Mr Jinks….Sorry you have had to join the club nobody wants to belong to, but I’m afraid it’s Mea culpa time , admit you need help & go back to the Rheumatologist and get back on the DMards to start calming your inflammation.
You sound as if you are reasonably young man, and now really is the time to get sorted with the right drugs and accept that you are probably going to have to take them for a very long time. The sooner you find the drugs that suit you…the quicker things will fall in to place….so even if you have to chop & change for a while …,there really is no fast track….you take what your rheumy suggests, but if you refuse …as you have already found out …your doctor won’t beg you to take them……he can only offer what his experience tells him you need.
Acceptance really is the key & once you find the right medication …..you will feel so much better ……so get thee to that rheumatologist.
I think it’s important to tell those newly diagnosed & not getting the right drugs to persevere. …& no matter how much they don’t want to take any drugs…..it really is the way forward.
Of course in today’s climate even getting that first appointment with a rheumatologist is not easy & when you are in pain time passes really slowly…
I’m nearly twice your age & have been lucky enough to eventually get the drugs that I needed & life is good.So knuckle down, swallow the pills or take the injections & enjoy your young family!
A second opinion needed definitely. However, in the meantime, take the drugs offered as at least then you can demonstrate if they are not working for you. Sorry but it takes time to find the right drug - seems to me it is all trial and error.
I think you're right, I'll go back on the Sulfa and try to adjust to the fact that i'll probably always be in a bit of pain going forward. I had the thought that MTX was the holy grail, and I stupidly tried to force the issue by stopping my Sulfa and Hydroxy. Foolish to say the least. Thanks for your advice.
Not foolish at all. This is a very difficult disease to negotiate and at times I feel like just stopping all my meds, particularly when I am in a flare as I think nothing works. Take heart, the first consultant I saw said it was all in my mind but the second does everything he can to try and help me.
My heart breaks for you MrJinks. You are not foolish, this is a scary disease, you’re relatively newly diagnosed and caring for a 1 year old. You’ve got a lot going on and I hope you afford yourself some grace. I’m glad you have a caring partner, it’s sounds like you’ve made a nice little family for yourself. Good job! My Rheumatologist told me that meds will be trial and error, especially in the beginning and not to get frustrated- you will find the right med and dose. You and your healthcare team will get it worked out, I hope you can feel a bit encouraged and know you’re moving forward to answers. Take care!
Try Naproxen for now or until your inflammation is controlled. It won't cure or reduce your RA levels but it might make your pain level less, even pain free at times until a suitable RA med is prescribed.Good luck.
Thanks for your response, Naproxen was actually the first one they tried way back before the GP even bothered to do a CCP blood test. I didn't find it worked at all. My Dad loved it when he had something called PMR though. I was taking one called Etodolac until last week. The Rheumy stopped it, as he thinks it's bad to take it long term. Shame, as it was working pretty well for about 6 hours.
Thank you for replying. Naproxen is like a pain killer for me. However it has to be used with caution as it can cause stomach bleeds.I hope you find something that helps your pain. Good luck.
When I was diagnosed I had no visable swelling or joint damage but had all the blood markers. I was put straight on methotrexate. I feel your pain as I had a young child at the time, but over time things have got better.
I'm in the same situation. CCP+ve, lots of pain and stiffness throughout my body but no damage or visible synovial swelling. I'm taking sulpha and methotrexate. I had a course of prednisolone when at my worst and that seemed to give the DMARDs a bit of a kick start. I'm at a level of being about 60% better. I doubt that I'll get biologics due to the lack of swelling but I'm just due another visit to the Rheumatologist tomorrow and may have hydroxyquinoline added to the mix.
Can I ask what "ve" is please? I had >200 CCP, 25 Rheum Factor but negative on the ESR and CRP tests. They really focus on the ESR and CRP blood tests whenever I see them. What I say I'm experiencing doesn't seem to matter. It feels like that Little Britain Sketch "Computer says no" most of the time...
I have been diagnosed for 13 years now. Normal ESR at the hospital I went to was something like 10 or 20, and I was 21. Many people on here have ESR in tbe 00’s! My CRP has never got above 5. And for the last years my ESR is usually around that too.
I am on methotrexate, a biologic, and anti-inflammatories as well as several steroid injections a year.
What convinced my current rheumy was that I kept a detailed diary which showed than a miniscule change in results was significant for me…
Yes, it seems to be all about inflammation and inflammatory markers. My CRP has gone to normal and I don't have swelling in finger joint synovium so it seems my RA is under control (that is, no further medication adjustments offered)- but I still have a lot of pain and stiffness in my shoulders, hips and knees. If it's not RA causing that, what is it and why do I just get blank looks when I mention it?
All drugs take time to kick in so i suggest you go back to your rheumy and get a blood test before you go back so the person who deals with you can see your bloods. My joints never show any inflammation and i am zero negative. Best of luck. xx
Yes my bloods don't always show any inflammation yet I gave ra. There are more than bloods to look at to prove you have rs. For example they do x-rays and scans to prove you have ra. Xx
Hi. I am so sorry you are having such a difficult time. You have had some great advice already on here and I can't add much more but that we are all scared and floundering when we are introduced to RA and related autoimmune conditions. Please take advice on here and ask for a second opinion. In an ideal world none of us would have to seek private consultations but if you can afford to I would say do it. You only need the one appointment. You will get a steroid injection that will help tremendously, discuss your treatment then continue on the NHS. When I was first diagnosed I did this. In those days (21 years ago) it saved me 2 or 3 weeks wait but nowadays it could save you months. The sooner you get started on meds again, the sooner you will get your life back. I wish you all the best and keep posting.
get back on the horse see your GP and consultant you need to tackle this and deal with your joints and get some medication in you. Whilst waiting for a consultation I was given oral steroids to keep pain manageable and then went into the med regime.
You need something and with this disease you need to be pro active management And use what’s needed.
Also call NRAS if overwhelmed with what to do as they can point you in a good direction
You have had some good advice on here so I hope it has helped. It’s a long journey sometimes to find the right medication for ourselves. When I was first diagnosed over twenty years ago I was sero positive with high crp but no swelling. I’m now sero negative and still no swelling. I had a consultant who only went by blood tests (which are always normal!) I ended up with no medication for over a year until I changed consultant. I would ring the helpline here for advice first and possibly try your consultants secretary to try and get an urgent appointment. You need to get back on medication and hopefully you will be offered a depo steroid injection to help your pain while waiting for the medication to kick in. Good luck and hope to hear things have improved for you shortly.
Hi, my advice would be to be pushy and speak to a different consultant. I had to do this recently and it changed things dramatically for me - after being undermined and dismissed (by GPs and another RA consultant), I was finally taken seriously and given a new diagnosis (Fibromyalgia as well as RA).
I got RA in 2007 and started off on Sulfasalazine, Methotrexate and Hdroxychloroquine. Occasional steroid injections. Eventually, these medications did not work well and/or did not agree with me. Again, being pushy, I resisted RA nurses and doctors telling me that these were the standard medications and to keep trying. Eventually, I was put onto the more effective, if more expensive, biological treatments, and they have been dramatically better for me. I would ask about these. I am not a pushy person by nature, but have had to become so with the medical profession over the years. You need brass neck, but it's worth it. I hope you get some answers.
The thing I've had learned is you have to keep pushing...all the time. Ive just spent a week in hospital because I had a massive flare and partly didn't recognise it and didn't complain enough until I was very ill.There are no prizes for sucking it up and suffering in silence so start ringing the doctor and helpline and get treatment. If your consultant isn't listening ask for a second opinion or see a private consultant, it's not that expensive to have a one off private consultation.
Sorry, this condition is crap and it's hard to feel that you are always complaining but you do not need to live like this.
Hello Mr Jinks, one person already mentioned NRAS. That is the best advice I can give you.Phone their help line on 0800 298 7650. Not only will you get compassionate people who know exactly how you feel, but you may also be able to talk to specially trained people who have been in the same situation as you are. They can point out different ways of getting a second opinion. There's also a plethora of information on their website.
It's horrible when everything seems hopeless and noone listens to you. I hope you get the help you deserve very quickly. All the best mate.
Good morning MrJinks, I was sorry to hear you are having a tough time at the moment. Please do reach out to our helpline, and we will be happy to see what support we can offer you. We are open Monday to Friday, 9.30am-4.30pm and can be reached on our freephone number 0800 298 7650. Kind regards, Rosie @ NRAS.
Hi Rosie, thank you for that. I will call the helpline. I should have done this a lot sooner. Thanks for the details, and I'll try the line on Friday when I know I'll be in the house on my own for a few hours. Thanks so much.
It feels as though you could do with a second opinion on your treatment. When I lost confidence in the RA consultant i sought recommendations and asked my GP to refer me to my present doctor, This has worked well as they take time to explain the options for treatment. It may take time for the new medications to kick in, but it is worth persevering. Hope you can find a solution.
Well your rheumatologist is an unfeeling idiot! When they tested inflammation levels when you were on sulpha and hydroxy did they not mention that the drugs could be masking the inflammation?
And have you had another blood test to check now? Or ultrasound to look to see whether there is inflammation? I have never had raised inflammation markers, even when hardly able to get out of bed. But it shows up on ultrasound.
And have you at least been offered new prescriptions for hydroxy and sulpha?
Depending on where you are it could be easy or difficult to get a second opinion, so find out as a different rheumy sounds a good idea. If not, as others have said, push, push, push! You could write to the PALS at the hospital explaining saying you don’t feel that you have been given satisfactory investigation and treatment, and ask for a complete review and imaging.
You will get there eventually. The fact that sulpha and hydroxy did something for you suggests that you could respond to treatment - you just need to get some!! Good luck.
Hi sorry you are going through this. It took me 9 years to get a diagnosis as I had no swelling. I did however have & still have a lot of tendon pain. Eventually my GP asked me to go privately & I was diagnosed with sero negative inflammatory arthritis. They wernt sure which type. Possibly Psoriatic but without Psoriasis. 25 years later I still feel that I have Psoriatic Arthritis but about 9 years ago my RF changed to positive so diagnosed with sero positive RA. Every time I ask what if I have Psoriatic instead but they say the treatment is the same for all types of inflammatory diseases so it dosnt really matter which one I have. I never have much joint swelling but still have a lot of pain. Basically we can all be different. You may have an overlap of different types of inflammatory arthritis but the treatment is the same. You really need to get back on some medication as soon as possible to get things under control now & prevent problems further down the line. It wouldn’t do any harm to ask for a second opinion which you are entitled to or go privately ( your GP can still refer you privately) You need to be happy & trust your Rheumy team. Please get some help before things get out of hand.
Firstly, thank you all so much for taking the time to reply to my post. I'm a bit overwhelmed to be honest. Like I said, I had to be pushed into this, as my experience of online forums in other subject fields has been less than enjoyable. I'm glad I did it though, I had no idea that so many people would be so supportive. It's nice not to feel quite so isolated any more. So again, thank you all so much.
I will call the helpline in a few days time when I know I'll be on my own in the house with some peace and quiet. In the mean time, I think the advice to try and go back on the Sulfasalazine and Hydroxychloroquine is good advice. I've learned the hard way that it was doing way more than I thought. Maybe I have to live with the small amount of pain I had whislt taking it. It was certainly better than the pain I'm in now!
As far as changing my consultant goes, I haven't actually seen the same one twice since this all started. I'm on my 5th Rheumy now in just under 2 years. The 2nd one, who diagnosed me with the RA was a really lovely lady, but she left. The rest have been locum consultants who don't stick around. I don't know about you all, but they look at my blood tests and see no elevated inflamation, and then just can't wait to get me out of the room. So I'm not sure what asking to change will do. Maybe the private route is good advice, I have some savings, so myabe I'll have to admit defeat and use them to see a private consultant. The lack of any elevated inflamation on the CRP and ESR seems to be enough for them to send me packing. I would have thought that the >200 on Anti-CCP and 25 on the Rheum Factor along with the pain in all of the places it should be would be enough. It seems that looking around this forum, there are lots of poeple who get Methotrexate with a similar situation to me...
Anyway, thank you all again for the words of support and advice. I'm glad I've found this place
Hi again, was just wondering if anyone mentioned Fibromyalgia as a potential cause? It just occurred to me that March to June I had a few blood tests with nothing showing, but I was sore all over, including joint pain and visible inflammation. Finally a rheum consultant diagnosed Fibromyalgia (I do have RA, but with biologics and nornal bloods, they said its under control). Re the different rheum doctors all the time, yes, I think is common. I would still ask to speak to someone else, perhaps more senior / longstanding.
I wouldn't say I have pain all over, mainly in my finger joints, wrists, elbows, shoulders, knees and feet. I don't have widespread pain all over my body. The lady who lives opposite us has Fibromyalgia, and she has pain pretty much everywhere. Mine also improves over the course of the day, and then gets worse in the evening when I sit and do nothing. It's also 95% now I've stopped taking the Sulfasalazine, which makes me thing it was being held back by the med, which wouldn't happen in Fibromyagia right?
Hi, I'm not all that sure, to be honest, I don't fully understand Fibromyalgia, and am still not fully convinced it is the correct diagnosis, but in the absence any other explanation, I have accepted it for now. I did ask the consultant why my prominent symptom was fatigue over pain (also a range of other symptoms), and she said it is a "spectrum" condition, that the pain can fluctuate and can travel anywhere in the body (it doesn't have to be 'all over' at the same time, according to her). I definitely was getting some inflammation, which didn't show in blood tests, so I'm guessing a medication like Sulfazalazine would help? I have also read some reports recently that suggest Fibromylagia may also be an autoimmune condition, which makes me wonder if that is also why Sulfazalazine works for you? It is all very difficult to understand, and the doctors just do not seem to have enough time to look fully at individual patients, so it is very difficult to get answers. Perhaps going private would help after all. I have also become a reader of reports online (good ones!, E.g. medical) to learn as much as I can, and I also contacted Action for M.E. As a result of these things, I have been able to present information to various doctors that they would not have discussed with me otherwise, and have managed to therefore push them to do different types of blood tests and answer a range of my questions better. So it seems you have to become your own expert, or go private. This forum is also a useful information resource. I really hope you get some relief.
Everyone has said pretty much everything but I will add that givne that u were trying for baby and have one..u may want another down the line....I was in same boat and was given cimzia...a biologic inhection...I was put on it when I couldn't take mtx....it was safe the whole way through my pregnancy....and baby no.2 is here. I dont know if its the same for men ...but it's worth asking.. stick with it...and ask and persist dor meds...until u find thr one for u
Hi , It sounds you are having a rough time ,?we all know our own body and the pain we feel , go back or ask for a second opinion, it might sound mad but I rubbed a raw onion on my foot and rested up , I have to say this worked for me , try any tips , don’t suffer pain 👍
Hello, Refusing to continue with the advised treatment puts you in a difficult position with your present consultant. It is your right to do so but not a wise thing to do if you feel that you do not want to return to that one a visit to your GP and explanation of your situation in your regards to this they could refer you to another one that may be more sympathetic. The fact you no longer had swelling in your joints may be due to the fact that the drugs were on the whole working but just needed adjustment or changing to another one but until you are seen again you will not improve . If you can afford it a one off private appointment with another Consultant who also works in an NHS hospital could be a quick way forward to be seen and start treatment as they can transfer you to their NHS list after that.Good Luck
Hi. Have you tried gabapentin? I found that naproxen did nothing to help, but gabapentin has definitely eased the pain. You build the dose up until it reaches the key point of the pain being under control. I also found a steroid injection helped which the consultant needs to prescribe.
Another recommendation would be to take someone with you to the appointments as they can also push for the answers / help,
Gosh, what a trauma for you! Please ask for a second opinion. Methotrexate is usually first gold standard choice. I was given Plaquenil that did nowt. Methotrexate was added 12months later but I had joint damage by then. Sulfasalazine was added 4 yrs ago together, worked well for about 2. Now on a Biologic too. Hope you get sorted soon, phone the RA nurse or Dr s secretary re a review sooner. Good luck as not easy with a little one
About 3 months ago, I had an MRI to look into my hands and see if they could see any inflamation/synovitis after the Untrasound came back clear. Two months after having the MRI, I called the Rheumy Secratary to ask, and she said "I would have heard back if there was anything wrong," so I assumed it was also clear. Hence the emltdown that lead to me posting on here.
So I just got on with life and forgot it. Then two weeks ago I called my GP to get some more pain medication and she was surprised that they weren't putting me on MTX as all of my markers were positive etc. I told her the MRI was clear, and she opened the Radiologist report and said it was anything but clear. It was showing inflamation across both hands and wrists. She was pretty annoyed at the Rhuemy Department and went off to call them to give them a talking to. Two days later, I got a call back from her saying that I was booked in to see the Rheumy Nurse to get my MTX amd Folic Acid. That was yesterday. So now I can start my MTX on the 12th of Oct, as I had a Covid Jab and it takes 2 weeks before you start MTX.
So that's the good bit. Finally! The bad bit is that all of the consultants were on strike when I went to get the MTX, so the nurse couldn't give me a staeroid pack to help me until the MTX kicks in. The pain is pretty bad, and she said she would email the consultant and see if he would write me a prescription for the steroid when they get back from the strike. So I'm in limbo waiting for that, but getting the MTX after all of this time is a win that's for sure.
Just wanted to update everyone who kindly offered me advice.
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I'll take that though...
Need some educating please
Need some advice please.
I need your expert help !!!!!
Please help I don't know what to do for the best
