The good, the bad and the ugly

Starburst

Well, there are 2 pieces of good news actually! My RA is the best it's ever been, my DAS score is very low - no swollen joints, MRI scans have confirmed no inflammation, hardly any morning stiffness but the best news is that I have very limited pain. The other good news is that my colonoscopy and endoscopy biopsies came back clear.

The bad news is that the life changing, wonder drug cimzia appears to be the cause of my vomiting. The specialist was quite cross that my rheumy clinic won't allow me to take a long break; he feels I need at least 2 months off the injections to establish if cimzia is the cause of these symptoms. He's going to write to my rheum to suggest they allow me get the drug out of my system. Apparently, there may be a chance that I will develop antibodies to the drug but my rheum hinted that a longer break would cause a funding issue which is why she said it wasn't possible. He was quite cross that they made a fuss because he said I should have a choice in my own treatment. (He is also an NHS gastro, so he uses these anti TNFs for inflammatory bowel disease and knows that taking a break is indeed a possibility.)

The ugly news is that my rare autoimmune eye condition has flared up and my vision is poor, as well as getting horrible headaches again. I don't feel confident driving like this, which is making my life a little tricky. They've been a little unsure about how to proceed and I think they want to do a corneal biopsy which is scaring me a tad. I'll know more on Monday.

It's a mixed bag really but despite this, I'm in good spirits and feeling like I can cope with anything that life throws my way. I'm one of those (cheesy!) people who believes that there's a reason for everything, even if you don't realise it at the time.

mellivenelli

A mixed bag indeed! I hope you are otherwise ok x

barbara12

Oh Lovey that is such a mixed bag..why cant there be just good news for you for once...I am please your joints are not has painful..and your specialist seemed to know more then the rheumy...
And then the eyes ...gosh its never ending..I do hope they can do something to make them better..one things they are really moving on with eyes so hopefully in the near future..I do wish you well has always...((()))xx

Kittkat

Glad you are still in good spirits Starburst! Good news about the ra about the rest well fingers crossed things will get better asap X

As5567

Great news on feeling better, not so great news on the rest.

stickywicket

That's a very mixed bag indeed, Sophie. Oh the joys of arthritic life! Who needs challenges? We get them for free every day. I'm glad you're feeling OK but hope the rest can be resolved.

villier

Good on you Sophie for being so positive, lets hope they can sort the rest out for you pronto................Marie xx

Boomer13

Dear Sophie;

You do set a fine example of human optimism!! I really am wishing for some good luck for you.....Fingers figuratively crossed that something can be found that tackles all your problems. Good news about your endo & colonoscopies!

Starburst

Thank you for the support, my lovely fellow posters. I'm sure I'll have a moment of "waaah, it's not fair" at some point but in my heart, I already knew the cimzia was the cause of my unpleasant symptoms. That said, I'm glad we've ruled out anything else and it was the right thing to have the tests.

I'm adamant that whatever life throws at me, I will handle it because I'm so close to finishing my degree and nothing's going to get in my way! At the end of May, I'll have a break and I'm planning a holiday. 8)

stickywicket

Starburst wrote:

I'm adamant that whatever life throws at me, I will handle it because I'm so close to finishing my degree and nothing's going to get in my way! )

Crikey, that sounds serious! I'm glad I'm your friend and not your arthritis

dibdab

Sophie- great news about the RA- the rest sounds frankly pants! :?

Your positive outlook will I'm sure get you to the end of that degree- and you deserve to have your resilience and determination recognised. It seems to me that you have got a great gastro consultant who will battle for you- well done on coping with the tests that were worrying you so much.

Keep on keeping on................. and keep on talking to us.

Deb xx

Mat48

Ditto to all the supportive posts Sophie - sorry about the rubbish you've been landed with lately but great news about the respite from RA at least and also the clear GI tests. Sorry if I've missed this but haven't been around much lately - what's happening with your studies? Mat x

Starburst

Mat48 wrote:

Ditto to all the supportive posts Sophie and sorry about the rubbish you've been landed with lately but great news about the respite from RA at least! Sorry if I've missed this but haven't been around much - what's happening with your studies? Mat x

Thanks for your reply. Hope you're well? All is going well study-wise. I had a mid way review with my uni tutor and my placement supervision and they both sung my praises. Just 4 more months until I'm finished! I need to get my head around getting ready to apply for jobs but I'm not feeling motivated just yet. I'm really lucky that both uni and placement are very supportive of my health issues. I'm going to apply for extenuating circumstances when marking my final assignments. I'm fortunate that my course is 100% coursework based, so no exams. However, I need to get a wiggle on because there's lot of do!

Mat48

I'm glad about the continuous assessment rather than exams Sophie and so pleased that you get such good support from them too. How does the eye condition affect all the reading and writing though?

I'm okay thanks. I do feel like I'm going round in ever larger circles though. Was resolved to keep away from forums and throw self into work - and ignore all the silly old burnings and freezings of extremities until I couldn't as I'm still joint pain free. But for the last few days and nights the pain socks and gloves have come back with such force and I burn and thrash about all night and freeze and shiver with cold all day - despite layers of clothing - with stupid legs dunked deep in wet snow (this is the sensation rather than actuality!).

I feel that my doctors are all sitting on the fence thinking that it's not life threatening and probably Raynauds, probably Sjogrens and probably all relates to my RA (which I don't even seem to have currently). But the pain of the burning is so intense now at night that I'm not sleeping and end up trying to cool them down by soaking in cool bath water in the early hours. So being told that I just have to put up with it until my rheumy decides what to do - if anything - is just not good enough somehow? I need my sleep!

Mat x

bubbadog

Well done on the Uni review Sophie! You are working hard, sorry to hear all the c**p your having to deal with but I'm glad your R.A is better. The good has balanced the bad.

Starburst

Oh Mat, I feel for you. Autoimmune diseases are insidious little so and sos, aren't they?!

Thanks, bubbadog.