Bilimumab infusions

[englishrose67]

Starting bilimumab infusions soon for my SLE.Was having rituximab infusions but kept getting neutropenic after it.Anyone else having bilimumab?

[Freckle1000]

Looks like you're a pioneer. Hoping all go's well with the infusions.

xox

[englishrose67 in reply to Freckle1000]

Thankyou just been told I've got to have daily injections aswell because bone density scan showed bones in hip and lower back are worse despite being on tablets to strengthen them.x

[Freckle1000 in reply to englishrose67]

Really sorry to hear about the bone density test. Sounds like you're going through a period of real uncertainty - wondering what the hell's going to happen next.

Me too really. I'm up to my eyeballs with medications that have a horrible psychological effect (abnormally drug sensitive) but If I don't take them I loose my kidneys. Also some freaky weird autonomic neurological stuff going on - stomach not really working and blood pressure and heart rate doing the wrong thing and the wrong time. Everything's all over the place.

This illness is a real........I'd love to swear right now.

xox

[englishrose67 in reply to Freckle1000]

Oh dear sorry to hear your really going through it too at the mo.I've been to Hosp today to get checked out as so poorly in the night with a very high temp and joints killing.been put on antibiotics for. Sinus infection in face.got to go back to own gp tomorrow too .I hate lupus and all the problems it causes.hope you get sorted soon.where abouts do you come from.I'm in england x

[Freckle1000 in reply to englishrose67]

Ah. Yes. I'm a foreign devil. From Australia.

I'm really sorry to hear you're going through such a grindingly bad time. Also hoping the antibiotics kick in and that infusion will help.

And always have the stronger than normal antibiotic with Lupus !

Again, weirdly - I have a lot of muck on the lungs but don't have a cold. Undoubtedly another Lupus thing to deal with.

& Yep....I'm absolutely burnt out from it all. Equal burning hatred for Lupus. Really tired of constantly chasing down care and feeling 'orrid all the time.

I live in western Victoria - ie. the middle of nowhere. And recently copped a real earfull from my Specialist who's based in Melbourne for not going to the local hospital when things became hairy not so long ago. I had to explain - not a premium emergency center here - they have no hope with complex Lupus symptoms. There's a youtube clip 'Inquisitive koala saunters into emergency centre' I've gotten about as much help as this marsupial.

Thankfully my GP has slowly learnt to be available and helpful. Hoping yours is too and your appointment gets you somewhere ?

xox

[englishrose67 in reply to Freckle1000]

Blimey I can see your battle over there trying to deal with lupus.bet it costs you a fortune for medication etc. Luckily we're on nhs over here.think I'd be housebound if it wasnt as wouldn't be able to afford treatment and prob wouldn't be able to move.

Are you able to work ? I had to retire from work on medical grounds .I was a staff nurse on a paediatric ward

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[Freckle1000 in reply to englishrose67]

Indeed. Blimey.

: )

Not much money put into rural medicine.

Although we do have a public health system similar to yours - people who are reasonably wealthy are somewhat obliged to pay for private health insurance and cover a lot of their costs.

Apart from the odd greedy specialist, most Doctors are free and drugs are cheap - eg. I take micophenolate which is worth squillions of dollars but I pay about $6. a script. (a lot of good people negotiating with drug companies and government keep a lot of medications cheap)

I had to give up work (art teacher) about 14 years ago so I qualify for the public safety net. Another lovely aspect of Lupus - loss of a normal productive active life.

I'm pretty sure I would have died from renal failure when I was 15 I were a poor American. Made it to 48 thus far. If I was in the USA and with Obama care taken away, i'd be dead within the year.

Thank god my ancestors ended up here.

How did the GP go ?

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[englishrose67 in reply to Freckle1000]

Good job medication is cheap for you.because of my epilepsy I don't have to pay for any of my medication thank goodness .I had to have blood test today Dr said that's all I needed as on antibiotics now.

Shame you had to give up your job too.lupus has a lot to answer for.👎

Your 48 little bit younger than me I'm 49.the big 50 in July.my hubby and daughter have been making plans but all a surprise. Are you on Facebook at all?

Take care

Michelle

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[Freckle1000 in reply to englishrose67]

Wow. The big 50. Congrat's !

I'm a bit wonky at the moment so I'll keep it short today.

Nah - not on facebook. Propper Internet connection here is quite new (ish) and I'm still mildly freaked out by it - this is pretty much code for 'I haven't learnt to use it yet'

Getting a semi fast internet connection here was a bit of a recent shock for everybody here. Everyone's over stimulated and bamboozeled. Whenever we see a kid with a blank stare gazing at their mobile phone we all get a bit edgy. No doubt we'll all be doing the same thing soon.

I better plonk for now.

Hope that nasty sinus flu thing is getting better.

: )

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