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Discussion Starter #1
hope dr b can come up with somwthing today, he upped my steriods before xmas, then said he was going to review drugs later. so im praying something gets done, have to say though the seziures have gone better the the rise on pred.

Also going to take part in this Aetherosclerosis study in sle,so i havnt eaten or drank since 10pm last nite:mad:, going to have a neck scan and bloods. then off at 2 30pm to see rheumy so long day today hubby got holiday to take me.

will let you know how it goes wish me luck. thanks Lin xx
 

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Lots of Luck ((((Lin))))
Let us know what the atherosclerosis study is like, what you have to do for it and all that. And what Dr B says - I'm glad the seizures are better.
Love and hugs
Clare
 

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((((((((Lin)))))))))) good luck today, that's a big day ahead of you, you will be pooped when you get home. Make sure hubby gives you a big lunch to make up for not eating since last night ;):lol: I'm glad the pred seems to be helping the seizures. I too will be interested in the atherosclerosis studies.

take care,

lots of love
Lily
 

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Hi Lin,

I am glad things have improved somewhat for you. Hopefully the doctor has decided on a more longer term drug to help keep you stable. Let us know how it goes.

Take care,
Lazylegs
 

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Good morning, sorry couldnt post last night, felt so tired, and out of it, must be age lol!

Well i got to the Welcome trust clinical Research Facility, they check you in then show you to hte patients lounge, where there was coffee, mmmm hubby had i couldnt grrr!!

heading of letter was. Study of accelerated atherosclerosis in systemic lupus erythematosus (sle) lupus factors, telomere shortening and progression of atherosclerosis....

A nice male dr called me in his office, asked questions, then passed me over to a nurse who did loads of bloods,

then got passed to another nurse for a neck scan, then a nurse for weight height, bp,then hips messured.

letter i had says your being asked to take part in this study becaue you have sle and we wish to assess how factors associted with sle alter the risk of artherosclerosis over time this will be done by essessing sle at baseline ans aslo studying the thickness of the lining of the major blood vessel in the neck (carotid artery)

A repeat stifness scan will be also performed every 6 months and the neck scan will be performed every 2 yrs after the initian scan to assess the progression of the arerosclerosis and how sle factors including teloere lenght may effect this

In addition to the carotid scan a second scan will be also be prefomed, the second (pulse wave velocity) involes placing a small ultrasound probe at the base of your neck. above the collar bone to measure the wave-form, it does not invole any needles, A second measurement is also taken from the blood vesselat the top of the leg( femoral artry) using the same device, The distance between the 2 proobes is messured, Thescan compares the pulsation n your neck with that in the artery at the top of your leg again this is a painless prcedure and will be repeted every 6 months for 2 yrs...

sorry if that was boring but you asked, :hehe:

then went from there over the the main mri out patients for a coffee and something to eat.

After that over to see dr b , got weighed omg going on a diet, put loads on from last weigh in before xmas, i know the pred as given me the munches grrrr!!!. right dr b as decided to stop the Azathioprine now, not going to use the other drug yet putting that one on the back burner for now,

going to start Mycophenolate in a weeks time, he said i willl need bloods checked every week at first, dont know weather i like the idea of trying another drug, think its the fact im use to the one im on, but if the other is going to better things then i have to try i know.

he his also going to reduce my prednislone down,, by 2and half mg a week,

he wants me to see jo the lupus nurse in 6 weeks, then him again in 3 months i also have local rheumy in march, so at least ive got ppl on my side which i am greatiful for..just hope the manchester appointment comes when dd is off, as i cant drive now, and not the easy of place t get to from her on my own, cant keep using hubbys hols on me

thanks again for all your care you have shown me here, your good friends

take care Lin xxxxx
 

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Lin thank you very much for taking the time to share and explain all that happened......

xxx hazel
 

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Hi Lin,

Yesterday was a long day, you were bound to be worn out. Thank you for participating in the study. Their research may prove beneficial for us all.

Mycophenolate Mofetil is Cell Cept. Many of us on the site use it. In Lupus it is mainly used for Lupus Nephritis, but it is also helpful for those of use with neurological problems. I started out slowly with 500 mgs and worked up to 3000 mgs. I tolerated it very well. The first couple of weeks I experienced dizziness and abdominal discomfort. Once my body adjusted those symptoms passed. It took about 4 weeks before I noticed any change. I hope it works for you.

Good luck tapering the Prednisone.

Take care,
Lazylegs
 

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Discussion Starter #9
Lazylegs, yes they are going to start me very slowly going up to 2000.
i hope it works for the neuro stuff too.

thanks for your info it helps, its not as i moind changing, but was use to the Azathioprine, its been as i thought ok for nearly 4yrs. but he doesnt think its doing anything any more..


thanks again Lin xx
 

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Hi Lin,

Thank you for the update! It sounds like the appointment was a pretty OK one all considered. I really hope the MMF turns out to be effective for you. You deserve a break.

Thanks for the info about the study. It is a really worthwhile topic, and I'll be interested to hear what the outcomes are (in 2-3 years time I guess:wink2:).

All the best,

X C X
 

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Discussion Starter #12
Aw bless you, i really am hopeing things will now pick up, but will let you know how the study goes.
On the right side of the neck, i have already got the thickning starting, from looking at the scan. Hubby said it wasnt much looking at the scan. :wink2: thank god


thanks again
 

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Hello Lin

Yes we did ask and that'll " larn wuz" as they say where I come from. :lol:Seriously, good for you participating in the study. I'm not sure how this compares with the study some people here did at Tommy's to see if Cellcept helped with atherosclerosis but the information they gain can't but help everybody.

I hope the CellCept works well for you and no nasty side effects. If need be can't you get help with the transport? Of course it's not the same as being chauffeured by family but many places offer taxi services nowadays through the NHS round here at least.

All the best my friend

Clare
 

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Discussion Starter #14
Hi clare, the cellcept im going on is becasue the Azathioprine is not doing anything any more, nothing to do with the trail at mri.....

anyway hows you doing, not chated in ages, you look after your self my friend

hugs Lin xxxxxxxxxxxxx
 
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