Bone erosion whilst off methotrexate

[Teapotts]

Hi All, looking for some advice or other people's experiences on how proactive rheumatologists should be. I have RA since 2010 and it had been fairly under control with methotrexate, sulfasalazine and hydroychloroquinine. Anyway I came off the methotrexate about 18 months to try and get pregnant. All has been going well (apart from not being pregnant) and my symptoms haven't been too bad. In June my rheumy even said disease activity was low and I was in remission. In July I had an x ray on hands and feet and didn't think too much about it. I have had my rheumy appointment today and there is a massive difference between my July x ray and my one back in 2012. The gap between both wrist joints have gone, my toes have lots of erosion and some of my fingers are going the same way. I am a bit in shock that despite the x rays dire results no one thought to contact me back in July, so my joint erosion now will be even worse. I obviously knew there was a risk of this happening but thought the rheumy's were supposed to be monitoring me closely and I feel completely let down. They now say this will lead to deformity and pain as it progresses. The weird thing is I don't feel too bad in the joints, but am now so worried for the future pain/disability.

[Hobbits]

Hello, well that is disappointing news indeed. where you able to ask the Rheumy why no one contacted you about your xray results? Yes, they should call you if there is any changes, especially any significant ones. You may have chose either go back on DMARDS or continue to try to get pregnant, but at least you would have had a choice to know your options.

Don't panic about deformity just yet. You have to have severe erosion before things go deformed, and if your not deformed now, then its likely not severe yet. I do understand you shock and your concern. Lots of us, including myself have lots of bone erosion but no deformity.

We all know that even if you are pain free, and your RD feels under control...if your not on DMARDS then the RD can still be active and continue destroying your joints, its why, even if you feel better, you still have to keep taking the DMARD drugs. This part makes me sad when I see people who feel better, stop taking their meds and then just change their diet, thinking they are cured...this is a life long disease with no cure, and absence of pain and inflammation does not mean absence of bone erosion.

I feel terrible that this has happened to you, I feel angry for you. However there is no going back now.

You will have to make a decision regarding staying off the drugs and trying to conceive, or going back on them. This is a very, very tough decision, especially since you are so looking forward to

having a family.

The best advice I can give is go and talk to your GP or GNY and find out if there is anything you can do to increase your chances of conception more quickly (sometimes RD remissions and slows when a woman is pregnant) so this could work in your favor. I would also let the Rheumy know to please call you if there are any changes in the future...I know your not supposed to call them, they are supposed to call you. Unfortunately this somehow got missed. also find out from your Rheumy, just how bad it is, ask if you still have time to try to conceive, try to get an opinion on how fast your erosion is occurring.....this info can help you and your partner to make a better informed decision.

Yes you always need to be proactive in your own healthcare. doctors are overworked, and there are not enough of the specialists, so they end up with more patients than they should have.

I have had a similar (but not the same) experience as you, which also led to bone erosion. I was pretty angry about it, then I got over it, because you can not un-do erosion, you can only stop it form progressing further.

I wish you all the luck in the world...and if your still trying to conceive I send Good Luck and good Vibes so that you can be successful to achieving your family goals!

[Teapotts in reply to Hobbits]

Thanks that has made me feel better about the bone erosion! I will try and contact them (although they try and remain uncontactable outside clinics) to find about speed of erosion, although I suspect they won't be able to say with 2 yearly x Rays. I was a bit in shock at the time as thought everything was fine, so didn't ask at the time why didn't contact me. Probably going to give myself another 3 months to conceive and if not I will be going straight back on methotrexate. It is not my first child (pre ra) so I am lucky really, so will be happy with what I have!

[Hidden]

I feel very angry for you. I got osteoarthritis very quickly in swollen joints, much more quickly than 'wear and tear' osteoarthritis happens, and it's severe. Unfortunately I think we do have to keep on top of things ourselves unless we have a rheumy who we know to be vigilant and thorough. If you were too shocked to voice your feelings to your rheumy, perhaps you should write to him or her expressing your views and concerns and asking for a clear treatment plan if that hasn't been sorted out already. Getting a new doctor is sometimes the only way forward.

Might this be the time to start discussing biologics with your rheumy? My personal view is that for some of us biologics are the only drugs that can be truly disease modifying. I realise you've got difficult decisions ahead, given that you're hoping to get pregnant. I wish you well.

[Hidden]

I feel angry for you too. I've been off MTX for nearly six months and have tried and failed to tolerate 2 other dmards over three years.

When I last saw him 5 months ago my rheumy just shrugged and said to stay off them for the time being as a laid back approach would be fine for now and disregarded the fact that my ESR was and still is too high and I have severe nerve pain.

So I've had to push to see a neurologist who is at least being thorough and looking at my nervous system closely in the way my rheumy should be monitoring my joints having told me to stay off dmards.

So story makes me scared for myself but it also makes me very sad for you. However, as Hobbits says, the deformities usually take many years to form. But please push hard for this not to happen to you again and for them to be properly on the ball about your RA from now onwards. As others have said we shouldn't have to fight for ourselves always but many of us do. It's all so hard when you are also trying for a family I can see.

You have however made me sit up and realise I need to watch that this isn't happenjng to my joints too because I've just assumed it would be obvious if RA was actively attacking my joints again. But judging by your experience maybe not?

Take care,

Twitchy

[helixhelix]

That's awful, I can understand that you would be speechless with shock. And I think you've been let down badly, so I'd talk to the PALS at your local hospital to get a proper response and hopefully an apology!

But as others say there can be quite a bit of erosion before there is real loss of function - an important thing now will be to see a physio to understand how you can best protect your joints by maintaining good muscle support, and what you shouldn't be doing in terms of putting too much stress on them. And now you know you have an erosive type of RA you'll know to really push your rheumy for the best possible treatment. BUt I hope you fall pregnant ASAP so can go back on the drugs!

[cathie]

This sounds horrible, I'm so sorry. I was on methotrexate between about 2002-2013. The oA in my knees has got much worse. There was a research reported in arthritis research uk on this.

[nomoreheels]

I agree with all that's been said Teapotts. Welcome here but so sorry the reason why you've had to reach out although now you've found us you can be sure you'll receive support & help from many members here all with differing experience. To quote Rene Zellweger, you had me at hello...... the first line as I don't think on the whole they are. It's a sweeping comment as obviously some are but most Rheumy departments are overworked & do think important imaging results etc can be overlooked, even missed down to us generally only seeing our named Specialist yearly & often a Registrar at the 6 monthly appointment at best. Seeing Nurse Specialists is all well & good but they still need to consult with your Rheumy, they aren't Rheumatologists basically. I had very different treatment under a different healthcare system seeing my Consultant every 3 months. Continual treatment with the same person I feel is the key to well controlled RD as nothing is missed & any changes promptly attended to, you don't need reminding all important with RD.. Since returning to the UK in April 2013 I've seen my Rheumy twice & a rubbish Registrar once who pulled me off two of my meds which sent me into a tailspin, thankfully one was reinstated by my GP until I was able to see my Rheumy, but I had a bad 3 months waiting to see her.

As Hobbits says even though your images show further erosion if you've no visible deformity that is a good sign & you shouldn't have suffered long term mobility issues. I would hope from now on you will be watched carefully, particularly if you remain off MTX if you're intention is to continue trying for your family.

I could go on & relate my concerns but this isn't about me & I'd only become grumpy so will save you from that!! Do try contacting PALS as helix suggests, they can be very helpful in such cases & please do let us know how things go.

Take care & please try not to worry, PALS will take care of things for should you decided to seek their help.

[jeanjack]

Sorry to hear about your experience Teapotts. The hospital has let you down badly I think. I find these days you always have to be one step ahead of the medical people to get the best treatment at the right time. It's a pity that medical care has come to this but what can we do other than chase after what we need ourselves.

I came of MTX earlier this year after taking it for about 2 years. Whilst waiting to be started on new medication (leflunomide ) which I have had for 4 weeks now, my elbow became swollen and painful very quickly after stopping MTX and remained in a permanent bent position. I could neither bend nor extend my arm fully. Although I mentioned the problem to my Rheumy he seemed to think it was osteoarthritis but did not investigate further. I thought it was all to do with my RA symptoms coming back but who know?

I fear this elbow joint will never be the same again as although I have no pain now and feel much better since starting Leflunomide , my elbow is still permanently bent with just a little stiffness on bending.

So maybe there is some connection between coming off MTX and bone erosion. This disease seems to throw up all sorts of complications and connotations!!