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LUPUS UK
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Hospital looming

Had a rheumy review today. Not much to say, as we are waiting on a muscle biopsy and MRI scans next week. I got swabbed for MRSA as I will probably need to be hospitalised once the results are in, so that they can keep a closer eye while I am treated with some new nasties. He added that he is a bit puzzled about what to do atm, as I have a very unusual presentation. Which was reassuring. :P

A new "adventure" lies ahead. Hahahahahahahaaaaaaaa

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Hello. I’m sad to say I’ve completely lost track of where you are right now. Sorry. What new treatments are they going to try Mike?

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No need to apologise, Wendy. I seem to have developed myositis, so the investigations are to pin this down. Rheumy said the first line of treatment would be steroids, but in view of my apparent hypersensitivity he wants to speak with the endo to discuss this. In any case, he'd be thinking in terms of rituximab or methotrexate on an inpatient basis because of my atypical presentation and steroid reactions. x

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Oh no, I’m really sorry to hear that. Am I right that myosotis is caused by having other AI illnesses? Must all be very daunting. I hope your Rheumy is taking good care of you and I hope it all goes as smoothly as possible for you. Take care. x

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Well, its all a bit unclear atm. I have a high CK (1800+ versus top normal of 180) and the "right" symptoms but negative anti-Jo (which is apparently a key marker). So who knows what is going on? I have gotten exhausted trying to keep on top of it all x

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I’m not surprised. As much as I try to read and educate myself about my illness some of the finer points go right over my head. Let’s hope the biopsy results clarify it all then.

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Mike - I realise the main emphasis is on diagnostic confirmation and fairly heavy duty treatmemt for you just now - which is as it should be of course.

But, out of curiosity, did your rheum address the fact that he’s been telling you that you had Fibro for all this time? And also have you got any further with the Addison’s and Pred v Cort issue I wonder?

Also, why is your rheum saying you have an unusual presentation of Myositis and are there experts in your area who can take over from him in the event that his apparent cluelessness continues? I’m a bit concerned for you I admit. X

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Thanks, Tt. Yes, I suggested a switch to hydrocort, and he was happy to consider this. Fair play, the endo has agreed to see me again this Friday, so that (and my longstanding issues with pred) will be the focus of our convo.

With luck, this is the point at which there some serious thinking may go on x

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Well I think it’s probably wise to be outwardly generous towards your rheum and the endo about all this awfulness Mike.

I’ve allowed for an awful lot of spilt milk and water under the bridge and all this kind of metaphoric shizzle. On the whole it’s better to rail with each other here for the most part (excepting the “heightened health awareness” neuro comment which I felt couldn’t be allowed to pass by unaddressed).

I’m learning this daily - today’s bummer was finding that I’ve been unsuccessful with my first big application for PhD funding. Not as surprised or as crestfallen as I was expecting to feel.

My potential supervisors are advising me to carry on applying as I’ve secured a place and academic sponsorship but I’m seriously wondering if I have the energy to bother.

There’s something rather appealing about being chief dog minder, teetering about, gazing whistfully out of the open front door at trees, flowers and bees and falling back into bed at regular intervals. And I’m resigned to living vicariously through my 3 young adult sons these days too.

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Ah, thats a shame tt. i dont suppose its unusual esp as you're coming from an unusual background/perspective here. good luck with more apptns though x

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If I may, words of wisdom from an older similar situation. If you feel you really want it and have the energy to push through all the pain and dare I say crap that goes with your illness, fight for it! Obviously only you can choose but I would be sorry had I not succeeded in prrvious years. It brings me vert low not able to do it now. But again I say it's individual choose. If you want it.... do it! And I am ever so sorry your first go application was declined.

🌻❤🌻

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Thanks L. I’m waiting until the further investigations I’m scheduled for have been and relevant clinical letters have arrived with results. This seems a sensible approach that will buy me some much needed time at least. X

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Best of luck!

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All the best

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Thank you x

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Hi Whisperit

Best of luck with your myosotis treatments and forthcoming tests next week!. At long last they are finally having to work out what's going on and it's good having two specialists working together!. Two heads are better than one!. Fingers tightly crossed for you that it all goes well. Keep us posted. X

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thanks misty x

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I've got two specialists working together Whisperit so I speak from experience! It can be very beneficial but it's tough that your not following the ' norm' I must admit that doesn't surprise me with your steroid struggles. I hate it when they say that though as all we want are easy answers. I may be doing a similar thing myself as got strong abdominal pain and nausea that I'm trying to decide what's best to do.Hopefully a Gastro appt is in the post but maybe too far ahead!. X

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Horrible for you. Nausea is evil. I do hope something gets sorted soon x

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Thanks so much Whisperit. I've got a GP appt on Thursday. That's a good start!. Good luck to youX

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In terms of symptom control, the only med that I have found at all effective for nausea is metoclopramide, but I use it only sparingly x

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Ondansetron is extremely effective and GP’s can prescribe it although they will be quick to tell you they can’t!

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Thanks Whisperit for that. Will be interesting what he suggests. I've been taking domperidone as had some from previous problems and I checked there not out of date. They do help but it keeps returning, need my appt!. X

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Wishing you the very best of luck next week. Lou xx

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thank you lou. i had a terrible time i that hospital when I broke my femur, so i shall be doing all i can to avoid it! x

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Think I know the one. Still might be different this time. Lou xx

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Just had a phonecall bringing forward my MRI - my rheumy said he wanted to get treatment started asap. So that's good. (he said, in a wavery voice). But if I can walk at all, I shall be absconding at the earliest opportunity...! x

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Sounds good but make sure you are able to cope after leaving. Otherwise you could end up with a longer stay than originally planned. Glad things are moving quickly too, Lou xx

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You've suffered for a long time Whisperit, it's time for speedy action which I'm glad your Rheumy realises!. Be brave!. Deep breaths!. X

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Lol. Thanks Mum! x

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You've gone through so much just to get to this point Mike, I'm hoping so much that this will be the starting point for some treatment that actually works. Cyber hugs as ever old chap x

Make sure you have clean jim-jams ( how can you tell I've had the rarest of weekends when both sons were with mum at the same time)?

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Aw, that must have been nice. Yes, new pjs on order! Thanks for the hugx

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A bit scary and daunting BUT this could be the diagnosis and treatment that will finally get you at least a bit better and more of a normal life?? 🙂 Massive lots of good luck to you and keep us informed. At least you get sponge puddings and custard in hospital - I actually quite enjoyed my time in hospital in that respect. Just hope you have some fun non snoring non beeping etc ward companions! Xx

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Thanks Melba, I need to practice that positive thinking! x

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Always easier about someone else! But at least it’s action

X

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Wishing the the absolute BEST!!

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Aw thanks llll x

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Hi Mike. I too had lost track of quest for answers. I imagine Myositis with such a high CK is utter misery for you. We all struggle with muscle pain but yours must be quite dreadful. I hope things can move a little faster than Rheumatology’s customary ‘snails pace’ after next week, you’ve suffered long enough.

I will be thinking of you x

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Thank you. I had a call this very morning, bringing the MRI scan forward, so I should have all the results by the end of next week. I practically needed a forklift to get me out of the armchair to answer the phone though! x

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Good luck, please keep us posted.

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thanks, I will x

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Just chiming in to wish you the very best too. And also second Clareb67 regarding Ondansetron. It is very effective. I was told by chemo nurses that it was prescribed for almost everyone on chemotherapy. x

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Thanks, p2. I have ondansetron prescribed too, but for some reason, I haven't tried it yet and funny enough was just looking it up when you posted. x

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: )

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