Feeling c**p

joon51

Been coming off the pred for quite a while, almost done had a 2.5mg today and will have a 2.5mg on Friday then bingo all done. Looks so easy when you see it on a pc screen (well it's not) not at the moment anyway. Been struggling for about a month now, not like some of you guys, I am very very lucky do not seem to suffer like some of you, I feel a fraud alot of the time, still wonder if there diagnosis is right. Seeing rheumy on the 28th March having an mri on the 29th silly I know but a different doc has sent me for the mri. I have been cutting the pred down since early Dec the last couple of months have been really hard I am still managing to go to work full time, but am finding it harder all the time. Some days my hand or fingers might lock up but I push my self till it passes. Luckily when I get home from work oh does everything I am so shattered, most weekends I spend recharging myself. What I wouldn't give for a goodnight's sleep I wake up with shoulder and leg aches . Well anyway someone at work has had a bad cough with turned to a chest infection guess what think I have got it now going to the docs tomorrow at 5 usually take my mtx tomorrow guess I had better wait till I see the doc, any of you free could sure do with some help in my pockets.

Take Care
Junex

julie47

Hi June
Sorry you are feeling so rubbish at the moment...I will be in your pocket tomorrow when you go see the doc. I hope you haven't caught the cold from your collegue, or have a chest infection.

Good luck with the rhummy appointment on 28th and mri the day after.
I hope when you tell them how bad you are they review your meds.

take care
sending a hug(((((((())))) I think you are doing marvelous working fulltime when you feel so bad. I am glad though that you have the help from your OH when you get home.

juliepf x

skezier

Hi June,

Oh I so empathise and agree with your post title. Its horrible isnt it to always feel tired and full of concrete.

Fingers crossed you haven't got the chest infection thing as well.

Is there any chance you could ease back on the work front June? Even if it was for just a week or so? I know how hard it can be to have to work but you do sound like you need a few days rest up.

I was only on preds 4 months and they reacted with me and I came off them ok. That's probably cus of the reaction they had to me. i know a few here are also having to come down or off them and hopefully they will be able to help you more but when you see the doc mention it to them flower cus it might be your reducing faster than your body can cope with. Hang in there June and leaving you a ((( ))) Cris x

caterina57

Hi June
Sorry your'e feeling so C**P, Cant help with any of those meds issues as I dont have them, but I'll be in your pocket at 5 tomorrow - nothing else happening, got my hydro in the morning but on hol from work so I'll be with you!
Cath

dreamdaisy

Cutting down the pred is not easy: how long have you been taking it? I think the longer you are on it the less your body is inclined to make its own, hence the struggle when on the very lowest doses. Perhaps the alternate days dose of 2.5 is still too big: if you don't feel ready or able to stop then perhaps ask your GP for the 1mg tablets, then you can drop even more gently. I empathise: it's miserable at times dealing with it all. I wish you well. DD

joon51

Hi Julie47, Cris and Cath thank-you, yes think I have caught something I have been coughing so much my throat is sore. Cannot believe how much I have changed in a year think my moment of truth happend over Christmas I bent down to pick my grandaughter up who is 2 and it was only luck I didn't drop her I thought what the heck, that was when I got my wake up call. I do worry about work what if I can't manage although don't think I am managing to brill at the mo anyhow, seems all work and no play, keep hoping that the meds will give me some go, the only go I do is go to bed lol. When I see the rheumy doc will tell him how I feel. Is there anything they can give you for this damn fatigue, even after a nights sleep I still feel lacking in energy.

Take Care and thanks for taking the time to read my rant

Junexxx

tjt6768

hi June.. Will be ready for pocket duties tomorrow, the 28th and 29th.... Ra will be coming too, doesn't like being on his own now Cleo has gone..

Be well hun

joon51

Hi DD I have been taking pred for 10 months my highest dose was 20mg for 2 weeks, I really want to be off them by the time I next see the rheumy, I keep asking myself if the pred I took in the begining got my imflammation figures down, why do they start going up when you cut them back even though you are taking other drugs does that mean the meth and hydroxy are not working OR could it mean if I didn't take them I would be in a worse state than I am now. Any-how enough of me and all this rubbish, how are you are you still cutting down on your pred?

Take Care Junex

ironic

Hi June,
I do hope you have not picked up the chest infection but may be you could get the Dr to sign you off for a week? You really do need to charge up you batteries. I work part time and I find it difficult enough.
Will be in your pocket tomorrow,
Lv, Ix

joon51

Cheers Tony, Ironic would love you to be in my pockets RA as well the more the merrier

Take Care Junex

tillytop

Hi June

Sorry you are feeling so rubbish at the moment, but I think you have done really well to get the pred down as far as you have. I too am on the pred reduction bandwagon so I know how hard it is. In terms of the inflammation getting worse as you reduce the pred, I don't think it's that the other meds aren't working for you (or I guess you wouldn't have managed to reduce down to 2.5 mg daily) but it could be that they are not doing enough for you and the pred has been "propping them up". I'm finding the same thing.

Really hope you don't have a chest infection June. Good luck at the docs and the other appts. I will be thinking of you.

Love Tilly xxx

chris7

Hi June

Oh how we are all drawn to, and sorry to see your topic heading which seemed to sum things up for you there!
Do hope things improve soon and I will be in a pocket for you tomorrow with my fingers crossed.
Leaving a few gentle hugs ((( )))
Chris

skezier

Hi June,

Sorry you have caught something, these drugs don't half flatten your immune system flower. Will be there for pocket duties as well and so hope you get good appointments.

Hopefully this will be a bit better day for you. Cris x

julie47

Hi june

Just popping in to see how you are today.....Hope the chest isn't any worse and that your appointment with the doc goes well.

Take care
thinking of you
Julie x

dreamdaisy

Hi joon51, sorry I haven't answered before. Why do the figures go back up? 'Cos the other meds aren't cutting the mustard would be my response. I was on sulph and enbrel and regularly had figures in the upper tens - 60,70,80 and more for both CRP and ESR but as those figures were better than the 150+ everyone deemed the meds a success. Which suprised me, but there we are, I only live with the reality. I cannot remember how much they fell when I was introduced to pred but I know those lovely little pills made me 'feel' better, a feeling I kinda like. After four years tho enough is enough and that is why I am taking the whole year to get off them. With my previous attempts I have tried to do it too fast, gotten as low as 5mg then had to go crashing back up as everything went wrong. Not this time. If it takes a year then it takes a year. If it takes longer then it takes longer. Typical, isn't it? You find summat lovely and have to give it up! I wish you well. DD

joon51

Afternoon to you all thank-you all for your replies. Went to work this morning lasted for 3 hours then I had to come home, phoned the gp to see if I could go any earlier yes came the reply you can come at 4.50 instead of 5, story of my life. I didn't take my mtx this morning just incase and a colleague at work said oh you are just getting on track and you have missed a dose, if only she knew. Can't seem to stop coughing whilst I am typing hope the germs all stay clear of you all. Think I will try and have a nap now, will let you know how I get on later.

Thanks again

Take Care Junex

tillytop

Hi June

Sorry still so rough but sounds as if home napping is best thing for you today. Really good luck at docs. Will be thinking of you.

Tillyxxx