[CarolsymonsParticipant]

I was given a tapered course of dex to take after the 4 days on high dose, as my pulse rate on withdrawal dropped too low. i took 10 dex then 5 then 2 on the days following the high dose, which helped with the withdrawal symptoms.

Carol

[willjames2Participant]

Hi Jo,

I have struggled with this also on the Dex, especially at first. I have not been diagnosed too long and I'm a week into my 4th Cycle of CTD. Sometimes I find myself staring out of the window, feeling really sorry for myself and feeling weepy and there's nothing wrong with that.

Make allowances for that, remember that although its difficult you will usually have more good days than bad and remember its the meds that are taking effect.

Its got easier for me as I have gone along however I still get down days sometimes not just on the come down off the Dex either. It effects me more when I'm tired so I have to discipline myself to go to bed early and the difference it makes is huge the following day.

Try to keep positive. I take each day as it comes, try and stay away from negativity (without burying your head too much in the sand) and your mind-sets should change as you go along and you get to come to terms (although its difficult, I know) of the Illness.

I try and envisage the time a cure will be found and we will all be treated. Some may look upon this as being unrealistic however it helps me…so do whatever helps you best to get through it.

Keep Strong, you'll find a way.

Kind Regards

Scott

[JandKParticipant]

Thanks Carol all these messages are helping

Jo

[JandKParticipant]

Thanks Scott I know it's new and we have to work through it but I am a communicator where Keith isn't so knowing we are not alone really helps

Jo

[jeff605Participant]

Hi, all. What a relief to read this thread !! I couldn't understand why I have so many rough weekends,feeling very wobbly and shaking quite heavily and feeling generally out of sorts and exhausted. From what I have read it ties in with the " coming down " from the Dex. So that's one thing less to worry about. Whew !! Jeff

[JandKParticipant]

Jeff Hi…

It's good to know your not alone … my husband won't come on here and it's his experience really but as his wife I am going through it with him … He has really struggled with the 'come down' … Wobbly, no concentration, shivery, angry, exhausted, emotional etc etc … Apparently the dex has a nik name Dexatude (attitude)

Take Care

[tomParticipant]

Hi Jo and also Keith

Well if you wanted some positively well here I am a young 58 and in remission and drug free, Had my SCT in 2009 and fought the beast all the way, will he come back and bite me ?? too true he will but am I ready for it too true on that one also, I aint going nowhere till I see my youngest Grandchild Married 😎 and the youngest one is 18 months old he he.

Stick with it and as folk say its good to know what beast you are fighting and you all (being Medical) should be on top of it all the time.

Stick with it Keith you have it make the most of what you have and dont ever give up that Fight.

Tom Onwards and Upwards x

[JandKParticipant]

Thanks Tom I just read your reply to Keith and I think I saw just a little smile …hoping one if these days he replies himself

Jo

[tomParticipant]

Your Both more than welcome Jo and Keith, just make sure that smile you think you seen wasn't just wind lol.
and it would be great to have our very own GP on board (tell him this and see him smile again 🙂 )and I for one look forward to him joining us soon.

Love Tom Onwards and upwards xx

[EvaParticipant]

Dear Jo,
I don't know if I would use the expression 'low moods.'
My adrenal gland seems to stop working.
When I am on 4 days of dex at 20mg a day, then it takes me a full for days to get over it. Then I have another four days of the same, after a four day break. After the second time, I am worse, and there's a day when I can't walk and require a wheelchair. By the way, I am normally fit and can walk a mile without any trouble. The second time each cycle takes me five days to get over. The transformation is very sudden. I go from barely being able to walk to the bathroom to being able to walk again.
Eva

[JandKParticipant]

Thanks Eva that helps me understand things a little more …Keith is in hospital he has a stomach bug so not well at all at the moment … This is a horrid treatment but needs must when the devil drives

Take care Jo x

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