RA affecting other joints

Starburst

Evening all,

For those that remember my frantic post a month ago, I'm pleased to report that my lovely mum is on the road to recovery. We've found inventive ways of doing household chores and have called in every favour from every friend. In the midst of all this, we are packing up 24 years of memories and rubbish as we are moving into a smaller but equally nice house on Friday. The last few weeks have been exhausting!

The reason I posted is that my head is all over and you wonderful people always know the right thing to say. I had MRI scans which showed I have widespread inflammation both feet. The results correlate with the scans I had at diagnosis nearly 3 years ago, how disappointing that not much has changed! The orthopaedic surgeon was crystal clear with me (and in the letter he wrote my rheumy) saying that unless we get the disease under control, I will begin to see deformities. So, I was dealing with that when I went to another appt. My physio/OT has examined my shoulder (which I thought was just sore from being weak) and decided it needs a scan before I see my rheum in Sept. I'm being discussed at the team meeting as she's sure it's RA. Then, I find myself at the maxo-whathaveyou surgeon to discuss removing my wisdom teeth. He tells me he will remove them but he thinks the symptoms I'm experiencing are RA and suggested an MRI scan as he reckons a wash-out procedure will be needed.

I had a moment of "what more can I take health-wise at the grand old age of 24?" and then felt guilty for being self-pitying because it could be much worse, so ate a lot of chocolate! At diagnosis, everyone told me that I would have a decent quality of life once I was settled on medication but here I am 3 years later, not only still with active RA but apparently getting worse.

I see my rheumy next month and have already decided that I'm content with adding leflunomide to the mix. So, at least the appt will be easier in that respect. Though, I do feel I should warn rheumy that my mother is on the warpath.

Thank you for listening to my indulgent complaining and reading my novel. You know how much I appreciate it. It's really important for me to get things out of my head or they fester and I spiral back in the black hole.

valval

hi sorry things are not under control it can take a while as we all differ in how the meds suit us but with luck it will be much better soon val

Numptydumpty

Hi starburst,
I'm sorry you didn't get better news.
It can take years to find the right mix of meds. Hopefully the Lef will help you.
We're always here to listen to you and help if we can.
Wishing you well,
Numpty

LignumVitae

Hey Starburst

We are always here to listen and help, no apologising please! I know that feeling of 'what else?' too. It can get you down but it sounds like you have already discovered a great medicine for that - chocolate! Yum, the best treatment for so many things. It took me a few years to get the meds right and that can be scary but it sounds like you have a wonderfully supportive group of medics looking out for you so I hope that gives you some confidence. Hope they sort that tailor made cocktail very soon.

Good luck with the house move, no lifting all the heavy stuff!

Love LV xx

stickywicket

That's a very short novel, Sophie You know you're doing the right thing in getting it all out of your head and onto 'paper'. It does help. We all know that.

You've been through a lot this year (Still going through it) and have done incredibly well on all sorts of fronts.

As for the RA - I dunno. Theoretically, at least, stuff should be better once we're established on meds but, better than what? What might it have been like without the meds? I'm really sorry other bits are joining in and I know you must be so disappointed. It happens sometimes, even when we're doing all the right things. I very much hope the lef will change all that.

As for the physio/OT and surgery - one day at a time, my love. Take things as they come. I guess it's all annoying, scary and disappointing but you are one tough cookie and you'll handle this, just as you've handled everything else.

A little self-pity is the normal, natural reaction when stuff goes not to plan. Lingering there is not a good idea but there's no chance of you doing that. (())

dreamdaisy

Oh dammit. Arthritis is not a self-contained parasite, once it's wormed its way into our bodies it enjoys spreading itself here and there. :roll: I began with one affected joint, now I have about thirty-eight or so playing host to my PsA and four with another lodger, OA. It does this Starburst, simply because it can. For most of us arthritis is a progressive and degenerative disease. I think the idea of the meds is to stop it but whether they can or not is another matter. Personally I don't think they do but that's only because I was given them too late to make any difference.

You have a great deal on your plate and I hope you can work your way through it all without too much damage to yourself. I am pleased that your mum is doing OK and hats' off to you for dealing with it all in such a mature and unselfish way. Has anyone on the rheumatology front mentioned anti TNF treatments to you? One of those may be an answer - or have I forgotten something? I wouldn't be surprised if I have. :roll: DD

Mat48

Starburst you have my full sympathy and admiration. I haven't been on here for a while but when I do and read posts like yours I feel humbled. My RA is playing hide and seek but it popped up in my knees today to say hi and seems to be staying for the night. I can't complain because I haven't had a peep out of it for a few months but have had to drop a dose on MTX last week and can't believe how quickly one less pill is making the bu**er wave at me from behind the scenes where it still largely is these days. I think I've been caught early enough to make a difference but I don't like saying this in case mine is being stealthy but wicked and I just don't really know it. I say this because my ESR is still pretty high at 58 and sometimes I think I've just stopped noticing the stiffness and pain by ignoring it stubbornly. But I hope I'm wrong and it just is mild.

I would like to know when you will be offered anti-tnf as DD suggests you should be soon. Good luck for your house move and next rheumy apt. Mat xx

Starburst

Good morning you lovely bunch of people. As always, I have tears in my eyes reading your kind responses. You are like my personal therapists, always know the right thing to say. I had a good night's sleep and a wonderful dream about being on holiday....on my own island! I think my unconscious mind is trying to tell me something!

My rheumy wants to give the DMARDs another try before trying anti-TNFs, although with this new information, she may change her mind. Part of the issue is that my DAS score is always between 4.8 to 5.0, so slightly below the magic number of 5.1 as recommended by NICE. We'll see, I suppose.

Thank you again for being a listening ear and letting me release my feelings. I always feel better after pressing submit. x