Hospital looming: Had a rheumy review today. Not... - LUPUS UK

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Hospital looming

whisperit profile image
40 Replies

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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whisperit
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Wendy39 profile image
Wendy39

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?

whisperit profile image
whisperit in reply toWendy39

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

Wendy39 profile image
Wendy39 in reply towhisperit

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

whisperit profile image
whisperit in reply toWendy39

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

Wendy39 profile image
Wendy39 in reply towhisperit

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.

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

whisperit profile image
whisperit in reply to

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

in reply towhisperit

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.

whisperit profile image
whisperit in reply to

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

Ladyuponthelake profile image
Ladyuponthelake in reply to

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.

🌻❤🌻

in reply toLadyuponthelake

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

Ladyuponthelake profile image
Ladyuponthelake in reply to

Best of luck!

PMRpro profile image
PMRpro

All the best

whisperit profile image
whisperit in reply toPMRpro

Thank you x

misty14 profile image
misty14

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

whisperit profile image
whisperit in reply tomisty14

thanks misty x

misty14 profile image
misty14 in reply towhisperit

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

whisperit profile image
whisperit in reply tomisty14

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

misty14 profile image
misty14 in reply towhisperit

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

whisperit profile image
whisperit in reply tomisty14

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

Fennella02 profile image
Fennella02 in reply towhisperit

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

misty14 profile image
misty14 in reply towhisperit

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

whisperit profile image
whisperit

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

Lupiknits profile image
Lupiknits

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)?

whisperit profile image
whisperit in reply toLupiknits

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

whisperit profile image
whisperit

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

misty14 profile image
misty14 in reply towhisperit

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

whisperit profile image
whisperit in reply tomisty14

Lol. Thanks Mum! x

Melba1 profile image
Melba1

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

whisperit profile image
whisperit in reply toMelba1

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

Melba1 profile image
Melba1 in reply towhisperit

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

X

leslieliesel profile image
leslieliesel

Wishing the the absolute BEST!!

whisperit profile image
whisperit in reply toleslieliesel

Aw thanks llll x

Fennella02 profile image
Fennella02

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

whisperit profile image
whisperit in reply toFennella02

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

Good luck, please keep us posted.

whisperit profile image
whisperit in reply to

thanks, I will x

panda2 profile image
panda2

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

whisperit profile image
whisperit in reply topanda2

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

panda2 profile image
panda2 in reply towhisperit

: )

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