Being stubborn!
suzygirl
Member Posts: 2,005
Hi all
I am off the sulfa, must be over a month now. I felt better off it to start with, as mad as that sounds. Allergic reaction gone, still trying to get the cracks at the corner of the mouth to heal. Every time I stop the steroid cream, it comes back. :roll:
Am still determined to reduce the pred and am down to 2.5mg for 2 days then 5mg for a day then 2.5mg for 2 days till I can get down to 2.5mg all the time. I know I should do it slower but I am impatient to be off the meds. :oops:
So, what is it like with out the meds???? :shock: Ouch, ouch, ouch :oops:
I am in agony, hot, swollen joints, feel like I have the flu, feverish, so tired and so so stiff. Not good, at all. I know the waether isn't helping I am always bad at this time of year. Even so I am determined to be off pred altogether, horrible med.
So, I wonder how long it will be till I give in?? Will I be begging for pred in a month?? Begging the rheumy nurse to put me on another DMARD?? Got to be honest I am not keen, after my sulfa reaction it has put me off. The meds can be as irritating as the disease.
I wonder how much willpower I really have, Its such a cruel beast arfur, puts in difficult situations, you don't want to deal with, but have to.
Anyway, thats my rambling update, how are you all doing??
I am off the sulfa, must be over a month now. I felt better off it to start with, as mad as that sounds. Allergic reaction gone, still trying to get the cracks at the corner of the mouth to heal. Every time I stop the steroid cream, it comes back. :roll:
Am still determined to reduce the pred and am down to 2.5mg for 2 days then 5mg for a day then 2.5mg for 2 days till I can get down to 2.5mg all the time. I know I should do it slower but I am impatient to be off the meds. :oops:
So, what is it like with out the meds???? :shock: Ouch, ouch, ouch :oops:
I am in agony, hot, swollen joints, feel like I have the flu, feverish, so tired and so so stiff. Not good, at all. I know the waether isn't helping I am always bad at this time of year. Even so I am determined to be off pred altogether, horrible med.
So, I wonder how long it will be till I give in?? Will I be begging for pred in a month?? Begging the rheumy nurse to put me on another DMARD?? Got to be honest I am not keen, after my sulfa reaction it has put me off. The meds can be as irritating as the disease.
I wonder how much willpower I really have, Its such a cruel beast arfur, puts in difficult situations, you don't want to deal with, but have to.
Anyway, thats my rambling update, how are you all doing??
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Comments
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Hello, my name is DD and I am a pred-head. I know exactly how you feel suzygirl, we know the stuff is bad for us but hey - it dunnarf help matters. Typical, isn't it? :roll: Impatient DD was ruling the roost recently and not making too bad a fist of it but I have had (reluctantly) had to increase it to help me cope with a painful heel and the prospect of a few days away next week. I am now not regarding this as a defeat or a setback: it's a matter of need and I have little say in that.
I reckon you are doing fine, girl, it DOES take time, it IS an up-and-down kinda thing, but on the whole you are doing the right thing and heading in the right direction- and coping with the problems. Well done, my lovely. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Hi Suzy
Well I have to give it to you, you are giving it a blooming good go, I think stubborn can be good sometimes, I do hope everything eases for you very soon, and you come out the other side in less pain....Love
Barbara0 -
Hi Suzy
thanks for asking l'm ok pulled my back today knees and ankles growling quietly, but not as bad as you are feeling :sad:
I am so sorry the one mediaction which helps you is one you want to get off :sad:
As for the reaction from the sulfa - l can't remember which other DMARDs you have tried if any but am sorry getting over your reaction to it has been so hard too.
A hug from me to you and hope that things ease for you soon.
Love
Toni xx0 -
I just wrote a reply and then my router went down & took my reply with it. So, that's two of us who are frustrated, Suzygirl.
Pred is a seductive little monster. I do hope you get away from him successfully and permanently but, if that's your aim, I'd advise against a sprint finish.
Also, try not to take against all DMARDS just because of the sulph experience. Horses for courses and all that. Some of us have found a near perfect match. It's just trial and error.
Willpower, stoicism and stubborness are useful arthritic tools and will get you a long way. But don't overdo them, Suzygirl. Take care.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Thanks guys
Althought the pred is good, it has given me weight gain, diabetes and I have high bp, which the pred aggravates. So I think it is better if I am off it long term.
I can't take mtx due to liver function, again a pred/diabetic reaction. So it is complicated what next maybe aza??
I bumped my knee against the bed this afternoon and realised that my knees are inflamed as well my hands, wrists, elbows, shoulders, hips, ankles, heels , toes, neck and back bizarrely. This has made me slightly wary as I feel rough today, like I am coming down with a cold and have ended up in hospital before with a full joint flare a few times. :oops: So am going to try to be sensible as the last thing I need is a whacking dose of pred again. :shock:
I did have a lovely sleep this afternoon though which was nice.
DD, enjoy your week away with Mr DD, be careful with the heel.
Toni, sorry to hear you have pulled your back. Hope it eases soon for you.
Sticky, I am trying not to sprint past the pred, it is so hard to be patient. :oops: Not my strongest point, I am afraid, although learning!!
Barbara, how are you doing??? It is nice to hear from you.
DD, I just realised your joke :oops:
I am suzy and I am a predhead and a . . . . few other things0 -
suzygirl wrote:it is so hard to be patient. :oops: Not my strongest point, I am afraid,
Mine neither, Suzygirl. Now, do take care of yourself. Let's hope it's not a flare....or a cold....just a 'blip day'.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0
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