My RA started in February this year, and I have started on Mtx and have had 7 doses now with little change so far. I am also on 5mg of Prednisolone. My elbows have been sore for over 2 months now and stick out more than they should. I can’t straighten my arms fully. I asked my GP if I could be referred for an x-ray, but the reply was that RA is a soft tissue disease and an x-ray would not be helpful. Door shut effectively! Is this correct, and how can I prevent any bone damage?
I have also suspected I have carpal tunnel for about 2 years before RA started. My GP just puts it down to the RA and will not refer for investigations into that either. Yet I have read that early intervention for this is advisable.
I just feel powerless since getting this disease and that no-one cares. My rheumatology department are not great and only seem interested in drugs and getting me off the steroids - each time I stop them my symptoms go crazy.
Any advice appreciated.
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jubilee2
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My rheumy says that X rays are not particularly helpful in RD. I get sore elbows on the inside and it is due to tendonitis which is worse when my RD is not under control. In addition I have carpal tunnel syndrome, which my GP says can only be alleviated by an op. Have 2 friends who have had the op and said it was awful they would not go through it again and both have found that the problem returned. My carpal tunnel almost disappears when my RD is under control. So, in my experience, getting the RD under control needs to be the main focus for me. MTX can take 3 months to work, so there is still hope. If there is no improvement by 3 months, then you can nag your rheumy as there are lots of different drugs to try. There will be one or a combination for you. I am afraid that most of us have had the experience of having to nag.
Reduction of 5 mgs of steroids each week seems a lot. In the end, I was on 20 mgs. and reduced by 1mg. per month until I got to 10 mgs then had to do it by 0.5mgs per month as i just felt so ill otherwise. However, have never had such good pain relief as I get with steroids, but that is just me.
Hi yes I had x ray doc said nothing wrong struggled on for two years finally sent to ra specialist diagnosis ra put on same as yourself also have carpel tunnel in right hand which has got worse over 15 years I just inject 20 mg ot methotrexate and a naproxen in a morning plus a few heart meds otherwise I feel not to bad. You’ll have to persevere with methotrexate takes a while plus I had flu like symptoms every few months at first and mouth ulcers and skin rashes hope you feel better soon
MTX can take up to 12 weeks to be effective if you don't feel an improvement in the next few weeks it might be better to email or write to your rheumatology department, often writing gets action that phone calls don't. Prednisolone is not normally reduced until the DMARDs begin working, so you could explore your dosage with them just now. 5 mgs is a small dose.
Keep advocating for yourself, don't be fobbed off.
Thanks for your reply Mmrr. I often email rheumatology instead of leaving a message on the ‘helpline’ which is unreliable. I have had to fight to get even 5mg of Prednisolone and they don’t respond when I am running out until 10 days later which leaves me in agony and barely functioning for that time. I know there are risks with taking steroids, but I prefer that to being in such pain.
I've been on prednisolone for several years , I'm tapering down at the moment but was given the dose I needed to give me a quality of life that I would not have otherwise had.Normally your GP would provide the routine prescriptions for prednisolone after the hospital prescribed it.
Maybe you already are .....but I'm normally very to the point with the medics....I can't do without....are you aware that ?
Thanks. The only time I felt reasonably well and able was when they first gave me steroids, starting at 20mg. I just had pain in one toe on 20mg. But as I reduced down by 5mg each week (as ordered) my symptoms returned. I have been quite forceful with them and explained that every time they reduce them I have problems. They are ridiculously reluctant to help me be out of pain. I will try the GP next time, but they tend not to want to override the rheumatology department.Thanks again. Best wishes.
You could have OA as well as RA and steroids are best taken only for a short time. They are addictive and can be very hard to stop so your RA team are telling you the truth coming off is a very good idea. Most RA meds take 12/14 weeks to work so it is a bit early to assume that aren't working so try to be patient and hopefully it won't be long before you feel the benefit.
Hi Jubilee - you must insist on an MRI (they don't like to do it as it is expensive) - I think it also varies from area to area - a work colleague got this done with no hassle - yet it was not simple for me. I insisted and did not stop bothering them until I got it done. An MRI shows soft tissue. If you go private its can be over £800+ - so do insist and tell them how you are struggling.
Wow. I am sorry. Jeez my rhuemotologist sent me for X-rays on my hands, feet and I think lower back. I think she was looking for pitting. My family doctor sent me for an ultra sound which showed increased fluid in the joints and swelling of I think it was flexors of the hands. I think many doctors would order an X-ray of an arm that you can not even straighten. So ridiculous. Hope this helps with giving you courage to ask for an X-ray or something else to help you know what is happening. Hope the methotrexate kicks in for you for soon.
My first appointment was terrible and I was diagnosed with fibromyalgia . It took me over a year to see a different rheumatologist .I had just believed the first rheumatologist and I did not advocate for myself although inside I knew something more than fibromyalgia was happening. It is so frustrating and hard because we are at the mercy of the system.
MTX takes several months to become fully effective, plus it depends on the dose. I was on Prednisone for too long, and after MTX still had to wait long before I could get off the Prednisone (had to back off and do it much slower).
Other Factors:
1 There is a lot of individual difference in people
2 We don't all have the same type of Rheum (it is not very well understood)
3 Possibly other factors such as diet, exercise, stress etc. may also affect how you feel and how well the meds work.
Hi jubileeSorry you are having a hard time. I have been on methotrexate for about 15 plus years and on prednisolone. Both have been wonder drugs fir me and until recently kept me working full time. However it is fair to say that all medical people prefer to remove steroids for long term use if they can . I have just recently been diagnosed with osteoporosis on top of everything else . So in the long term prednisolone can cause bone damage so that is why they are keen to get people off it. Trouble is it is such a brilliant drug fir flares especially. Methotrexate takes much longer than a few weeks to be fully effective, so I hope it settles down for you . Good luck.
I have practically the same problems, but swap the elbows for the shoulders, then add my hips, back and knees. It as been very difficult since February last year to see anyone including my GP's who seem to be hiding behind closed doors. But in the last few weeks some of my outstanding Hospital appoints FtoF have been made, I go to the local Arthritis special Hospital and you are often sent for rays there, I have one that should arrive shortly While I was there I was sent for a load of blood tests and a chest ray before going back on MTX. for the third time. My prednisone was increased to 30mg. with a weekly drop of 5mg. until I'm back on 5mg. Currently on Tramadol which was good at first from 6 weeks ago but now only effective a few hours a day, taking maximum allowed. I intend to stop this on Monday to see what happens. I may have to go back on the dreadful CoCodamol.
I think you should give the NRAS help line a call 0800 298 7650. They may be able to advise you on what the GP has to provide and what not. Some things you can insist on! Good luck.
We have a specialist hospital for all arthritic and bone structure conditions it as been there for many years. The Haywood Hospital, Stoke on Trent. My wife is expecting a phone call today from Doctor Dowson who is head of the department. Unfortunate she did have a brilliant consultant that was in charge, Professor Hassell but he has gone teaching the subject at Keele University.
Yes, as others have pointed out X Rays do not reveal the soft tissue damage of RD; ultra sound scans are the best at revealing that but damage is something your doctor will be trying to stop with drugs. It's a worrying time for you; you are feeling bewildered by the onset, but do give the MTX time - it has been tried and tested over many years.
Also carpal tunnel ops are not always very helpful and often don't last. You are just starting on your treatment for this disease, and MTX is the usual first drug of the DMARDs type to be tried. It is important to get you onto the drugs that will help control the disease - and steroids can be helpful in the first instance but are not the answer for the long term.
Listen to the rheumatologist, keep a diary of symptoms and also of the results of your blood tests which you will be having regularly.
It's a learning process and you will become more informed as time goes on - the NRAS are very good for any information about the disease. And this forum has contributors who have had long experience of the disease - they will be happy to share it with you.
My Very Best Wishes
RA is a progressive disease and bone damage happens over a period of time. The drugs given to you, aim to slow or halt the progress and this is the main objective of the Rheumatology teams. They should also be aiming for pain relief. Damage over time can show outwardly in joint damage. E.g. the ball of my foot was operated on a few years back to flatten it and also a first finger has been fused even longer ago. Both caused by RA. It would be very difficult for Rheumatology teams to monitor your bones constantly- but they should be checking you every time you see them for an appointment and referring if necessary. I was referred to the appropriate surgical department for my own ops after x rays. I hope it never comes to this for you - ( I have had RA over 20 years)
1. If you are on steroids for any length of time you should have a bone scan for osteoporosis. This is standard advice. 5mg is unlikely to have a major effect on bone strength and my rheumatologist has been happy to continue me on that low dose.2. Carpal tunnel is serious and can cause permanent damage to the muscles in the hand. Don't be fobbed off. But the rheumatologist should be addressing this, not the GP. Splints, steroid injections into the wrist, exercises for the hand muscles - you should be discussing all these.
3. Your elbows will stick out more if you are losing muscle. If you can't straighten them it suggests they are affected by the arthritis. An X-ray would not give useful information, but an ultrasound might. Again I think you should be pressurising your rheumatology team! "The dripping water wears away the stone" technique is the one I find works best. I go on and on until they do something.
I am so sorry you are struggling so much and having difficulty getting tests. I had carpal tunnel a while back I don't know if it was due to RD or years of keyboard work it was really painful especially at nightI had it operated on and the relief was amazing once the stitches came out obviously it's not the same for everyone but for me it waswell worth having done. Some brilliant ideas from the previous comments so I really hope you can get the support you need.
Thank you everyone for your comments and advice. This was my first post although I have been reading everyone’s posts daily for months and gaining from your knowledge and experiences. What a great and supportive community this is. I do not feel so alone and powerless now.My best wishes to you all. 🙂
Hello, methotrexate does not usually damage bones but steroids can usually these are used for flares with sometimes an ongoing low dose. Been on Methotrexate for12 yrs had a dexa scan recently no sign of bone density loss and as l have been on a low maintenance steroid that was a bonus as well. I would agree about your wrist ask for a referral to the RA occupational hand therapist who could help you with exercises and wrist splints if these fail she can ŕefer you to the specialist hand surgeon. Do you have an RA help line? the RA specialist nurses usually run these and will consult with a RA consultant for answers they cannot give themselves.
Hi, I was diagnosed with carpal tunnel in December, told to get some splints...went straight to chemist and bought some. I’ve found them really beneficial. To confirm this diagnosis, a different GP requested xrays and nerve function tests of both hands. At the end of March I was diagnosed with RA, and consultant also requested xrays of my feet. So yes it is important to have xrays, to see how much damage has been done, but also for future reference point. The nerve function tests did confirm carpal tunnel and damage, thankfully not too bad..hope this info helps you, think your GP needs educating!!! Good luck..xx
Thanks for that info. Before RA was suspected my GP was going to refer me for nerve conduction tests, but later on decided it was just down to the RA. I’m using a splint at night which seems to help. I think I’ll wait until my RA is better controlled and take it further if my wrists is still bad.
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