A little bit gutted

[emma36]

Just been to see my consultant, wrists still swollen despite methotrexate. Totally gutted as after 10 years of living with RA, my X rays have shown significant damage for the first time. Right wrist joint looks terrible. Sounds ridiculous, but cried all the way home. Have managed to avoid any damage for this long so feel so dissapointed.

[Hidden]

It so does not sound ridiculous. It's so upsetting to hear that. On the practical side - What have they said about your treatment, are you changing meds?

[emma36]

Hi there, yes they are adding Hydroxychloroquine to my meds, fingers crossed it helps x.

[dweezle]

You just want to say 'Why me?' don't you. I do sympathise - it's a disease that just keeps on trying to get back at you. It is important to stay positive though and stress free. I know mine gets worse when I get worried or even when I don't think I'm worried but there's some situation going on. Your CRP level is the indicator I think. Keep smiling Emma.

[Hidden in reply to dweezle]

what is the crp levels ?

[kazp]

Its not ridiculous its what happens to joints to us who have RA. No need to say that!!

Stay positive as you've had a good time with no effect in 10 years now that's definitely something to be very very chuffed about.

Stay strong & positive.

[dweezle]

C-reactive protein - it's produced by the liver. The level of CRP rises when there is inflammation throughout the body. When I have my regular blood test because of taking Methotrexate, my doctor lets me know if the level is increased and depending on the level, she may suggest me coming to see her or having a re-test in a week or so to see what might be going on. Hope that helps - I'm no expert but I've had RA since I was 23 or so - I'm 58 now!!!

[Hidden in reply to dweezle]

thank you for this information still learning about rd

[thenortherngal]

It is worth saying that not everyone shows variations in the crp level. I have an esr of 6 and a crp level of 9 but still manage a disease score of 6.2 and am on biologics. Just in case that doesn't give you the feedback you expect!

Keep persisting Emma, it's really important that you keep talking to your rheumatologist and you can get advice from the occupational therapists on joint care so that even if your disease is active you can protect the joints and minimise the damage. I completely get the tears though, this disease can leave you with a real sense of helplessness, particularly when you think you've got on top of it. It can also leave you feeling very lonely as it's hard for people aroundyou to understand chronIc illnesses and how a change in your condition can leave you as distraught as the original diagnosis. You have my sympathies - go easy on yourself for a bit and be ok with being upset - in some ways you're coming to terms with a bit of a loss which can knock you for six.

[Slumberparty]

I hope you soon find some relief Emma. I don't have joint damage so far, but in the last 3 or four weeks I've developed nodules, and I'm gutted. That's nothing like as bad as you, so no more of this ridiculous talk x

[emma36]

Thanks all, still totally gutted but feeling a bit better knowing you are all out there. I am going back to OT and have a long list of equipment I am going to ask for!

Yes, CRP can be a good marker but I have never had a raised CRP in 10 years! According to my dr this is not typical but certainly not unique.

Thanks all x

[helixhelix]

I do feel for you, as you do build up hope that you have worked out how to keep this disease under control, and how to live with it. And then it pulls rug out from under your feet. I really hope the Hydroxy puts it back in it's place and no more damage. And my inflammatory markers are pretty stable too, even when I have loads of hot and swollen joints.

[earthwitch]

So did your rheumatologist offer any additional treatment or change in treatment? If not, get your GP to contact them and ask what they are planning to do - whether that is changing the dose of MTX, adding in another DMARD, or even considering anti-tnfs.

[emma36]

Yes, they are adding an extra DMARD so fingers crossed it works.

[Hidden]

There's a lesson here for me. I was feeling reasonably complacent about my RD - thinking if it hasn't caused erosions so far (3 and a half years in) it probably won't now. My GP did explain that if I am undermedicated because I can't tolerate the three DMARDs I've tried so far that there's a risk that the disease might still cause damage in the long term. I do know that he's right in theory but your story shows that he is right in practice too. I'm really sorry your wrist has suffered in this way and hope the Hydroxy makes a difference. My ESR is usually pretty high but my CRP has only ranged between 35 to 10 ever. My ESR can come back high at 60s but my CRP is almost normal. I was told by a rheumatologist that the CRP is the better marker for RD but the GP surgery disagree (could be because it's more expensive I think!). Twitchy x

[emma36]

Lets hope your story is different to mine. I guess I do have to be thankful that it has taken 10 years to get to this point. I am however only 37, so joint damage this early in my life feels pretty grim. Fingers crossed for all of us out there that the future holds something much brighter x

[wiliby in reply to emma36]

Hi Emma, can I ask, were you aware of damage? Did you have pain in your wrists? And (sorry!) how often are you offered x rays, I really feel for you, hope the new dmard helps. I,m over 3 years into diagnosis and thankfully under control pretty quick but I am suspicious that things are 'crumbling' x

[emma36]

Hi there, my RA has always been really well controlled but for the last 12 months i have had a lot of pain in my wrist plus swelling around the joint and some restricted movement. I guess i knew in my heart that there was damage there if i am honest. There is still some swelling present, and as we all know that is when the damage occurs. Hopefully with the new meds we can get the inflamation under control.

I last had x rays of my wrists 12 months ago. My consultant usually x rays if i am having problems with a specific joint. He is very good as always slots me back in between patients to discuss them so i dont have to have another appointment.

What makes you think things are 'crumbling'?

[wiliby]

Hi, thanks for replying. Sort of constant 'clicks' in a couple of joints and a wrist constantly weak/tender, sore knees....sore feet....

I understand what a shock it must have been for you, hard to face up to the fact that this horrid disease is progressing despite feeling okay.

I do get that it's never the same for 2 people, your consultant sounds great and readng your experience helps as normally when I go for my appointment I,m so grateful that he treated me so quickly and brought RA under control that I don,t want to let him down and admit to the niggles!!

So, I see him in a few weeks and will tell him all my aches

What beautiful children you have (looking at your pict!)

[zannie]

Hi Emma,

Hopefully you are feeling more cheerful, and in less pain. It is such a good feeling to have so many people giving you the comfort and encouragement which you need at this time. God bless. XX