Date: 02.04.2014
From: Deborah
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Subject: just wondering how everyone is?
Hello Everyone.
I have not been on for a while but was just wondering how everyone is?
I was off my drug golumamab for three month's due to me moving house and missing an appointment with my rhumy and not getting my prescription renewed and I can tell you it was the worse three month's then to top it off the supplier who delivered the bio-logic changed and it took forty minutes to get through to them on the phone so I rang my rhumy nurse and told her I couldn't be bothered with this and to take me off the drug.
Then the next day was in so much pain I had to ring my nurse back and apologise wish she said she understood and said that is what I am trained for and I am sure it is not easy to live with these disease's. I had to ask her if she would keep me on the bio-logic and if they could give me something for the pain until my drug got delivered.
Well I got a steriod jab not the one prescribed, as the chemist had not got it I know this because My husband had to collect it, but I wish I had noted down the name because it was the best steriod jab ever, it lasted two week's which makes me wonder do we get crap versions of steriod jab's at times?
It just lets you see how much these drug's do help even though we think they don't.
I am still on golumamab and 25mg of mtx a week but still feel crap a lot of the time makes you wonder how long can you stick it?
All the best Deborah.
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Date: 03.04.2014
From: rhona
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Subject: Re: just wondering how everyone is?
Hi Deborah, Nice to hear from you again. I have been thinking about you and was going to send you a post. Sorry to hear that you've not been having a good time lately. I do hope things improve for you. I am on rituximab now and have had 3 courses of it, I has helped me a lot although I still have pain and my ankles are giving me bother but a lot better than what I was before I got it. It is a very wet morning here in Scotland which doesn't help the joints. You take care Deborah and glad the steroid helped, I think a lot depends who gives them and how much they give you, I sometimes get great benefit from them and at other times I wouldn't know I'd had one. xx
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Date: 03.04.2014
From: Colin W
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Subject: Re: just wondering how everyone is?
hi Deborah , I was on golumamab & it never worked for me & they endded doubling the dose & think thats is why I had problems with it , would not recommend you go down the that route , there is other biologics they can try if it dont work had same think with them changing to Health care @ home , just hoping my new biologic will help when I start it
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Date: 03.04.2014
From: bsk
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Subject: Re: just wondering how everyone is?
I've just had a steroid jab. They generally work well for me. I've also had a couple of joints injected recently. It's great stuff but doesn't come without problems. I hope you get back on something that helps you soon.
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Date: 03.04.2014
From: Deborah
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Subject: Re: just wondering how everyone is?
Hi Rhona, Colin and bsk,
Glad to hear from you all again, Rhona glad to hear the rituximab has helped you and I know what you mean about the weather! I think in the winter I have as much pain as the summer I don't know which is worse we have such changeable weather.I hope you get some ease with your feet mine feel like I am walking on glass and are so stiff.
Nice to hear from you again. Colin yes I think golumamab is not that good feel not so bad for a 2 weeks after the jab but then start to go downhill again.Thank you for letting me know your experience with this drug and yes the rhumy did mention something about a larger dose I am on 50mg pen injections at the moment.So I know not to go down that route. It just feels like I am on a lot of drugs with the mtx as well but I know what I would be like without them.
Yes Colin it was Healthcare@home but thank goodness they seem to have everything sorted now.Although I miss my other delivery man he was so nice.I wonder do all the delivery people and all the people associated with our injections realise how much difference they make to our lives.I hope they realise how much it is appreciated.
How are you feel now Colin? bsk thank you I hope thing's will get better.Glad go hear that you that you have had some relief with the joint's you had injected.I hope you don't mind me asking what problems have you found with steriod jab's? Thank you all for taking the time to reply and hope every one is ok.
All the best Deborah.
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Date: 04.04.2014
From: bsk
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Subject: Re: just wondering how everyone is?
None but I think there is a long term cumulative effect, or so I am told. They are marvellous things!
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Date: 05.04.2014
From: Deborah
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Subject: Re: just wondering how everyone is?
Hi bsk,
Yes they are.
Thought there might be something if you have had a lot, I wonder is that why the doctor's don't like you getting to many jab's in a year?
Anyhow glad we have them.Deb.
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Date: 05.04.2014
From: bsk
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Subject: Re: just wondering how everyone is?
My hospital is quite generous, others less so, I hear.
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