Sorry, I'm just letting you all know so I can get it off my chest. So after being in start September my pred went up to 20mg daily and life was great. Slowly it deteriorated, I cut the pred slightly getting down to 13 but this wasn't good so back up to 15.
I started abatacept. A few days before I felt a bit fluey, I mentioned to the nurse when she demonstrated the injection but she didn't seem concerned.
Next week feeling a bit worse but variable then one day felt awful. This pattern continued.
Got bloods last Friday, Tuesday just couldn't get dressed to go work.
Rang rheumy nurse CRP 120 go to a+e..don't pass go etc etc.
So here I am. They think Maybe I have an infection.
Will I ever be ok? I can't believe I feel this crap on 20mg pred . I can't see myself getting better ever.
I'm just having a bad run but it's been an awful year.
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wilbertjellyfish
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I’m so sorry to read this and hop you get some relief soon, I had Abatercept fora while but it never did much except give me dreadful eczema. I stopped it as the skin was really painful and so sore. Will you be able to change ?
Really sorry you are feeling so awful. Hopefully now that you’re in hospital they will sort you out, if it’s an infection they can give you IV antibiotics that ought to sort out any infection. 💐
When you feel so crap and nothing helps it drags you down and down till you do feel as if normal service’ll never be resumed. If you’ve got an infection, though it may take longer than you’d like, it’s treatable. It’s usually a combination of factors that clobber you but with any luck, now you’ve been admitted to hospital they should be able to sort you out. Don’t leave till they have! All the very best and hope you feel much better very soon.
Poor you , you have had a bad time. It will take a little time to regain your confidence but I am sure you will feel a lot better when you are back home . I hope your hip is mending well and best wishes for the future.
Poor you. I've just got an infection of some discription but having been a healthy person I've now been in hospital three times in the past year.Be kind to yourself and give your self time to heal.
This is terrible and I really think having inflammatory arthritis is terrible and sucks big time for so many reasons. May you feel OK soon (I feel like OK is realistic).
Thanks. I could cope with the joint pain most of the time but the whole body inflammation and feeling like you've been run over by a bus is just hard to manage.
Im so sorry to read this. I hope they get you feeling much better very soon! The nurse that rang me to train me for benepali jab did the same to me, iitold her I had a bit if a cough and cold but she didn't bother. After 3 weeks of jabs I'm now off them and on antibiotics as I've got crackles in my lungs and the cough is worse. Xx
It is so frustrating to feel so unwell on 20mg prednisolone (I share your problem right now, usually, I too, feel hypomanic on that dose and it's concerning when you don't!). It's worrying and you feel as if the medical team don't share your anxiety that something nasty is going on in the depths of your immune system.
I do wish you a speedy recovery on this antibiotic course and a return to the feeling that you are in control of your body again.
I feel for u😭. Don’t think my ESR has ever been that high but no wonder you feel so so poorly. Annoying I know but at least u r in the right place for them to treat and monitor you and get back on track. 🙏
I am sorry to hear that the inflamation isn't yet under control . It is tiring and frustrating when there doesn't seem to be a let up and you don't get time off for good behaviour. I hope the hospital are able to find something that is really effective for you.
My son has been on prednisolone all year for ulcerative colitis,just come out of hospital for the 6th time this year. Every time they tell him he can’t have any more steroids but then give them to him as they don’t seem to know what else to do. He’s started on a biologic but has only had 2 doses before he got bacteremia and flu.
You will be ok one day,you need a nurse or dr to become your champion and find the right treatment combination but it’s very frustrating for you .
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