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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hello everyone! Firstly may I offer my apologies for not being around for ages - work is very stressful at the momen, have been travelling a lot and not getting on with my immediate line manager as she is completely inexperienced (ten years younger than me), doesn't understand what I do, and thinks her solutions are better than mine and the project team I work with! Anyway that is a whole different story. After a few successful weeks with humira, I am not getting along with it at all. The morning stiffness, flares, problems with hips - ra has spread to hips since being on humira - inability to walk without any aids has all come back  . I had wondered whether it is just slow with me. My last injection was last Wednesday and a week on I am not doing good at all. I had found that humira wore off around day 9/10 and this time its at day 7! I am not at work this week so can't blame that either. The only other thing I can think it could be is the reduction in prednisolene from 10 mg to 7.5 mg. I know its not a big reduction, but might be sufficient enough to cause me difficulties. I have decided to call my rheumy nurse today and ask whether I can increase my prednisolene back up to 10 mg. I suppose if I do and the stiffness et al stays away, then we'll know whether it is that or not as opposed to the humira completely not working. My appt with biologys nurse is not until 9 Sept and I don't want to wait until then. We're off on hols on 24 August and I really don't want to be how I am at the moment then as I will not be able to have any fun with Cameron. Its bad enough I'm hardly doing anything major with him this week, thankfully he has a little friend next door - they are inseparable - dead cute! I am slowly catchng up with messages so please bear with me. Take care all, Nina xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Nina,
I'm sorry you're still having such difficulties.
When I was on Humira, I found that the effectiveness of each jab got less and less until the rheummy decided to try another anti-TNF instead. It was probably after about ten months of being on the drug.
I would agree that waiting until Sept isn't ideal and I'd definitely have a word with the nurse if you can. She may be able to bring your appointment forward.
I hope you'll be OK in time for your holiday. I find that one of the most frustrating parts of RA ... not being able to do things with the kids.
x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Nina
I'm really sad to hear this as you seemed to be doing so well.
Doreen found that her dose grew less effective and I am almost sure she now has more frequent doses. I'm sure she'll come on when she picks up your post. If my memory serves me right, Julie also had her dose freqency increased too.
You really do need to be seen befoe September when you are in so much pain.
Much love to you
Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Nina,
Yes, Jean's right. I found it was "running out" about day 12 and I now have injections every 12 days and this has been much more effective for me. You should ring your rheumy nurse, she might change the prescription for you.
Another possibility is, do you think you could be having a flare? I had one around week 6 and my rheumy nurse said it was very common to flare after starting a new drug.
Hope things improve for you soon.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Nina Sorry to hear of the problems you are having both with the RA and work. It must be so difficult for you; you are in my thoughts. I have not had Humira and know little about how it works but I have been taking prednisolone for 22 years! I'm now on 3mg, hardly worth bothering with but I can't even drop by 0.5mg without severe problems. It could be that the reduction has started before the Humira has fully taken effect and perhaps increasing again might sort things again. I found the most I could tolerate was small decreases of 0.5mg every two weeks. I think that's quite unusual but you never know. Just a thought! Hope you get something sorted soon so you are not in pain. I think not being able to play with the children is one of the worst things; it really used to get to me. Cameron is such an adorable little boy, it's great he has a buddy next door! Take care Nina, Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Aw thank you all for your kind words. I have spoken to my rheumy nurse and she thinks humira is not effective and that I may need to change it. She is going to talk to my consultant and discuss the matter with biologys nurse (she is on leave this week) and revert back to me next week. I think I am having a flare, right elbow, left knee and both hips are very swollen, sore and painful. And also the soles of my feet - am really struggling to find decent footwear. Had my feet measured in Beatties on Sunday, and my left foot is 8.5 and right is a 9! I have been wearing size 8s since about 15! I did wonder though whether it was size 9 - 43 or 42 - as 42s fit me better. Lyn thank you - Cameron is very adorable (I am of course completely biased  ) - very kind of you to say so. Much love to you all Nina xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Nina
You are going through it, good they are coming back to you next week, always helps everything when you know there is some course of action underway. I m having problems as leflunomide hasn t worked, so until I get back to consultant ( waiting to hear ) I am on pred. juggling from 5mg - 10mg its incredible how finely tuned they seem to be trying to keep to 5mg but makes it quite alot worse when I do. I think I ll take 7.5mg daily now til I go back to be sorted out ! if I can.
Take care Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Nina, sounds like they need to sort out the meds for you, preferably very soon!! It must be hard to cope with your son and work while you have uncontrolled illness. Also as you are having problems with your line manager, it causes stress and then hey presto!! a flare!! I hope you get it sort soon xx Julia, I am on 7.5 pred too, cant seem to lower it from that. I was doing 10mg then 5mg, but its better with 7.5mg daily, hoe you are doing ok x x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Aw, I am so sad to hear this Nina, I was hoping so much this would be *the* one for you...
It may well be the tiny drop in steroid? Perhaps you should seek medical advice about upping it again or just increase if you feel happy doing so. It sounds as if you're in so much pain and with a little one it makes life intolerable at times.....
Much love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Hi Nina. sorry things are not going too well for you ,is there any chance you could have a depo? just whilst they sort things out or is this not any good with yr pred?? hope you get to enjoy your holiday with little pain,soo hard when you have little ones to take care of too take care love corinne xx
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi everyone, rheumy nurse left message on voicemail to the effect that the biologys nurse will be in touch with me asap early next week and that all in likelihood it will be a change of anti tnf. But that will be her decision as she is the expert.
Corinne - I don't respond well to depo injections - I lose a couple of days as they completely disorientate me and then they are not effective.
Amanda, even though I reminded rheumy nurse that prednisolene had been reduced, they haven't suggested I increase it ..... suppose I could do that anyway ... hadn't thought of that - thank you.
Will update once I hear further.
Hope everyone has a good weekend xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Nina
I agree with Lyn that reducing the steroids by 2.5mg is quite a big drop. I've been reducing mine for a year now, and it's taking along time to drop down half a mg, but I seem to be getting there slowly, and am now down to 2mg.
I hope you get your anti-tnf sorted.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 84 Location: Northern Ireland
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Hi Nina Sorry to hear Humira is not doing the job for you. Any chance you can switch to Enbrel? Joy
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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I hope you get something sorted out, and are bearing up under the disappointment OK . Much love xfx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Nina,
So sorry to hear your news and hope you get something sorted out before your holidays.
Hang on in there, sending tender cyber hugs and lots of well wishes,
much love,
Barbara
XXXXXX
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