Cheetah7

Im thinking more of halving the steroids to be honest, I have 2 more weeks till I see the specialist and I dont know if I can hold out that long.

eddie007

Honestly? You see a specialist... He advises a certain dose of medication... For a certain period of time for your benefit and you're going to change his regieme???

Ffs wait til he tells you to, if you are struggling with the side effects contact his secretary... Ask for an earlier appt or telephone advice...But dont just mess with your treatment plan....

(And before anyone jumps on me for being brutal to this poster... We ARE brutal with each other in real life.... And love each other for it....)

Cheetah7

(we have always been able to be honest with each other - and that is something that is important to me)

Eddie the side effects are now unbearable, I am getting by on less than 2 hours sleep a night, I cannot sustain my sugar levels, my driving is being affected, the fluid retention is awful, I am so bloated and horrible and worse thing is, the dose I am on does nothing for the sjogrens breathing issues, I need a minimum of 20mg of Preds for that which I cant take.

Rheumy cant see me before this date but wanted me to stay on it till the next appointment, so you are right, I will call his secretary because right now, I am looking pretty sick and feeling worse.

I am on them for pain control and whilst that is working, the fake energy they are giving me is having a bad effect. I cant take any time off work at all - not an option but if something doesnt give soon, I dont know what I will do.

I know he will want to go higher due to the breathing issues but I cant go higher - at all, and even on 2mg of Dex it is shite.

Never have I felt so tired and exhausted yet so full of energy.

But you have a point, I shall call his secretary or see if GP can sort something.

In the meantime - I now want to eat something in the region of a small child - or even my dog.

eddie007

I'm offerring kevin... She would last you several meals...

Sometimes getting used to a dose whilst building up to appropriate therapeutic levals is shite... Or It MAY be a period you have to get through.... Or he may say..ok enough.... But let him make that decision mate....

Cheetah7

Some water tablets would be nice, I feel like a bloater

Not long to go I guess, another couple of weeks and may I say the steroids give you wind as well.

carolinephillips

You both have my sympathy.

I only woke up 5 times last night, but when I had to get up at 6.15 to take DD to school, I was just dropping off again, having woken when OH got up at 5am.

My arm is painful again today- doing the new exercises the physio gave me has made it worse this week, after last week's improvement. Might not do the neural stretches as they seem to trigger it.

I've been getting hot flushes for the past few days. Wonder if I'll be building up to another period??? Had one last month, but before that hadn't had one for 13 months and thought I was past all that. Maybe the change in diet has made my body start getting younger. Who knows? In 10 year's time I could have the body of a 40 year old, instead of a 70 year old, (as it is atm.)

Cheetah7

I was graced with a 2.30am wake up this morning, when I lie flat, especially on my left side I cant breathe very well and I got up and made myself a hot drink of milk and then fell asleep around 5.50 am and got up at 6.30am.

Im calling the specialist today, my face is huge and so are my feet and I need to talk to him about reducing the tablets.

carolinephillips

Hope he is helpful.

Got to spread my karma before I can give you some more.

Just made chocolate brownies- now I have to resist them as they are for tomorrow's Mahjong class. Oh dear, one broke, now I'll have to eat it.

yummmmmmm