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Went to see my consultant first day, Lisa my daughter came with me, alway's a wait there,at mri hospital but always someone to chat too,

Dr as upped my prednislone to 30mg for a month, and i thought i might come down them, He had bloods done again, want's the mri scan results from my local hospital, he thinks Azathioprine is not working now, So when back in one month he is to review things again,

Wants to change i think he said to a drug begining with m mofetil something like that, but first said he may give me cyclophosphamide,by drip or did he say injection over a few months every two weeks,

Lisa as to remember all this to tell steve, he thinks all thats gone on as made things worse, said need to get inflamation under control . will see.

Neuro, Lisa came yet again, bless and her a nurse on annual leave ,this time it was early, so that was good, on time , we were in and out, Lisa also thought he was good dr, he's writing to gp, upping the drug Keppra to 1000 at night, 750 is what im on at the moment twice a day, so up from 750 at night to 1000, then after xmas up to 1000 moning aswell, doing it slowly, as it will knock me out me sleepy, then can up again a little more if needeed, and said dont worry if it doesnt suit we can change, he commented that i had already gone threw about 4 different ones, i said tel me about it........

thanks for always being here to listen to my moans, and tammy thank you for being there too mate

Lin xxxxxxxxxxxxxxx
 

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Hi Lyn,

It was wonderful of your daughter to go with you to the appointments. Two heads are better than one when it comes to remembering all the things the doctor has said during the appointment.

The mycophenolate mofetil the doctor was talking about is Cell Cept. Quite a few of us on the site are on it.

Let us know when you get your mri results.

Take care,
Lazylegs
 

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Hello Lin :)

It is very kind of your daughter to come along with you to your appointments. Good for her! :)
I hope the new meds will prove very helpful.

Many hugs
Clare
 

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Thanks clare and lazylegs, no i didnt know it wqs that drug, with it not being that name, i dont know about that now. He said that it helps in skin lupus and Cns lupus, well i take it he meant that and not the injections he was chtting about, will know in a month when i next go,

Only thing that does scre me is changing drugs, i know its gone worse, but how worse is it gonna go, I know i can hear you now how longs a picece of string, its just me, i still keep thinking the old me is goona come back,

thanks for all your support you give me here hugs Lin xx
 

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Dear Lin :hugbetter:

Im sorry to hear things are still so unstable for you. Its always very worrying when we have to change meds or doses as we can never predict the impact or side effects. It does sound like your consultant is considering several options though and thats good. It sounds like he is attentive and keeps a good eye on you and he is right when he says that they must get the inflammation under control. Thats the ultimate goal.

Your neuro sounds lovely too and its good to hear that there are more options there for you as well.

I can understand how scared you must feel Lin and wanting the 'old' you to come back without any more interventions. Sometimes that just isnt possible Lin and it takes some stronger meds to dampen things down again. I have no doubt that the 'old' Lin will be back and fighting fit! Sometimes we just have to trust in the experts and, of course, lean on the support of your friends here.

Much love and strength to you
Joan:rose:
 

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Hi Lin

I keep hoping things will at least get under control for you(((hugs))).i do also think the news meds will be okay and really hoping things will get back to somewhat normal for you and very soon,It does sound like you have some wonderful doctors for sure that care about you and will get you back to somewhat normal.I am so glad you have such a sweet loving daughter that cares about you so much to go with you.I am far from surprised though when she has such caring loving mom to teach her how to be that way ;)right.Just remember lin you definately have a lot of support and mostly frineds in here:).Please keep us posted about the new med and you know i am here for you as many others((((hugs))))Take care of yourself young lady :p.

Tammy
 

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oh bless you your post is so sweet, thanks your such good friends, that i know DO understand whats its like, and i thank you for that, you always make me see it all different thank you...

I will let you know what dr says, when i go after christmas thanks again
i know i pull it out of contents get my self in a tiz

cheers Lin xxxx
 

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(((Lin)))

What a sweet daughter you have.:)

I am sorry that things are not stable at the moment.:hug:
It does sound like your doctor is up on things and trying to change a few meds around.

I do know how it feels to take new meds.
Take care Lin.
Love,
Lyn
 

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((((((((((Lin))))))))))
 

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Discussion Starter #11
thanks for your well wishes, i hope things start to look up soon too, wish Christams was far away right now ,party pooper aint i :)


thanks again for all your on going support Lin xx
 
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