Saturday
Didn't sleep last night again .. still not going for sleeping tablets though. Got up once I realised that I wasn't going to sleep and read through a lot of the forums that I'm most interested in on a message board I came across a week or so ago.. Bit sad now that there's not all that much more to read in those forums and I'll just have the new posts now. I like the board so much cause the people are so open about their feelings.
Wish I'd been able to go to sleep .. well .. I'd wish that without the message board .. but I'm definitely feeling sad that I've not got much more to read of what I was reading.
No spiritual or religious in depth discussion .. the spirituality forum is more a support forum of hugs and friendship and empathy which is very spiritual .
Maybe they don't need to discuss much else.
My mind is still full of the story I posted here a few days ago .. has kept me up while the illness has been as it is. Yeah good stuff. I've heard of quite a few stories like that.
And to the guy that asked .. yeah that's it. I don't have the cancerous form. It was quite bad before they managed to get it under some kind of control .. not as bad as some of the photos on the net .. but my scalp , the mucous membranes, circles on my neck, under my eyes, lips, a bit on my arms. A bit of my back and quite a lot on my calves and some toes. I almost lost a couple of my toenails but the pills just got there in time.
Think I started on 60mg prednisolone .. can't remember if it went up slowly .. can remember I had a test dose .. then that was reduced and I was put on a steroid replacement drug too instead of most of the pred when the illness became more active again .. about six weeks in from being put on the lowest dose of prednisolone that they tried then. Didn't respond to the first steroid sparing drug they tried very well .. stiffened up a lot .. can't remember which one it was now though. It was changed to Cellcept and things were much better. Maybe they'll just keep me on a high dose of Cellcept now and try to put it into remission with upping the prednisolone for a few days every so often .. though have to be careful with that.
They might try rutiximub or whatever it's called .. something like that .. it was mentioned before I think a couple of years ago. Bit nervous after the chemo .. as we're into the last resort meds now I guess .. and I didn't react to the chemo at all well .. even for chemo!!!! But there you go. Had to be nursed in bed for three days when I tried it .. through infusion .. and now this reaction to a tablet which I was meant to take every day. The expected reaction is to feel sick for a couple of days .. think the dose was 120mls so quite low .. something around that anyway.
I didn't feel ill while I was having the infusion .. I was already in hospital .. had it about a week after going in last time .. just as well I was there really cause I suddenly became very ill the day after having it. The day before I'd been OK .. and after meeting the other two people having it there felt reasonably confident about it .. was already on intravenous fluids cause I wasn't able to drink much because of the problem I'd had to go into hospital for anyway. Probably, with the help of my mouthwash etc managed to get a little food down before the numbness wore off. Had visitors and didn't feel any worse talking. Went to bed .. probably slept on and off as usual .. no really noticeable change anyway. Then about six o'clock in the morning got up to go to the loo .. was alright getting there .. turned round to flush and there was all this extra pain and I started retching and drooling .. was in bed like this hardly able to move or talk for the next three days.
Then I took a tablet .. 50mg of the same about a week ago .. felt quite ill .. same sort of symptoms but not as bad ,, I was retching, drooling and in extra pain and it obviously affected my immune system rather badly as well .. and my mouth was worse than it had been before I took the pill .. the bride of Dracula syndrome .. didn't eat or drink much .. so should've gone to hospital really but I did get some water down and luckily didn't develop cystitis which was a possibility they warn you about with that pill. Hardly managed to drink anything the next couple of days though. Guess I should've gone in really. The doc wanted to know if I felt I should go in on Thursday .. six days later!!! Um!!!
Anyway .. that's how it is. I'm taking 3000mgs of cellcept a day and 20mg of prednisolone along with all the other stuff that goes with treating the side effects and pain.
The saliva has dried up again today .. dunno why.
Wish I'd been able to go to sleep .. well .. I'd wish that without the message board .. but I'm definitely feeling sad that I've not got much more to read of what I was reading.
No spiritual or religious in depth discussion .. the spirituality forum is more a support forum of hugs and friendship and empathy which is very spiritual .
Maybe they don't need to discuss much else.
My mind is still full of the story I posted here a few days ago .. has kept me up while the illness has been as it is. Yeah good stuff. I've heard of quite a few stories like that.
And to the guy that asked .. yeah that's it. I don't have the cancerous form. It was quite bad before they managed to get it under some kind of control .. not as bad as some of the photos on the net .. but my scalp , the mucous membranes, circles on my neck, under my eyes, lips, a bit on my arms. A bit of my back and quite a lot on my calves and some toes. I almost lost a couple of my toenails but the pills just got there in time.
Think I started on 60mg prednisolone .. can't remember if it went up slowly .. can remember I had a test dose .. then that was reduced and I was put on a steroid replacement drug too instead of most of the pred when the illness became more active again .. about six weeks in from being put on the lowest dose of prednisolone that they tried then. Didn't respond to the first steroid sparing drug they tried very well .. stiffened up a lot .. can't remember which one it was now though. It was changed to Cellcept and things were much better. Maybe they'll just keep me on a high dose of Cellcept now and try to put it into remission with upping the prednisolone for a few days every so often .. though have to be careful with that.
They might try rutiximub or whatever it's called .. something like that .. it was mentioned before I think a couple of years ago. Bit nervous after the chemo .. as we're into the last resort meds now I guess .. and I didn't react to the chemo at all well .. even for chemo!!!! But there you go. Had to be nursed in bed for three days when I tried it .. through infusion .. and now this reaction to a tablet which I was meant to take every day. The expected reaction is to feel sick for a couple of days .. think the dose was 120mls so quite low .. something around that anyway.
I didn't feel ill while I was having the infusion .. I was already in hospital .. had it about a week after going in last time .. just as well I was there really cause I suddenly became very ill the day after having it. The day before I'd been OK .. and after meeting the other two people having it there felt reasonably confident about it .. was already on intravenous fluids cause I wasn't able to drink much because of the problem I'd had to go into hospital for anyway. Probably, with the help of my mouthwash etc managed to get a little food down before the numbness wore off. Had visitors and didn't feel any worse talking. Went to bed .. probably slept on and off as usual .. no really noticeable change anyway. Then about six o'clock in the morning got up to go to the loo .. was alright getting there .. turned round to flush and there was all this extra pain and I started retching and drooling .. was in bed like this hardly able to move or talk for the next three days.
Then I took a tablet .. 50mg of the same about a week ago .. felt quite ill .. same sort of symptoms but not as bad ,, I was retching, drooling and in extra pain and it obviously affected my immune system rather badly as well .. and my mouth was worse than it had been before I took the pill .. the bride of Dracula syndrome .. didn't eat or drink much .. so should've gone to hospital really but I did get some water down and luckily didn't develop cystitis which was a possibility they warn you about with that pill. Hardly managed to drink anything the next couple of days though. Guess I should've gone in really. The doc wanted to know if I felt I should go in on Thursday .. six days later!!! Um!!!
Anyway .. that's how it is. I'm taking 3000mgs of cellcept a day and 20mg of prednisolone along with all the other stuff that goes with treating the side effects and pain.
The saliva has dried up again today .. dunno why.
posted by Zeb at 11:09 PM
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