Date: 28.02.2010
From: sally
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Subject: hi everyone, I'm a bit worried
Am worrying as I had a steroid jab about 10 days ago to cover me while I drop down on oral steroids and wait for Mtx to kick in. It seems to have helped my hands quite a bit but my legs are really seizing up and my ankles are v painful. Don't feel very well in myself (maybe getting cold? maybe reason for this?) Dropped down 1mg pred to 5mg yesterday morning and am worried this is the reason. I really want to get off the pesky drugs but can't seem to. My legs just don't seem to work very well, which is what happened before.
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Date: 28.02.2010
From: Jae
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Subject: Re: hi everyone, I'm a bit worried
hi sally could be the mtx starting to sink in lots of water nice food give it a chance if mtx works its amazing
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Date: 28.02.2010
From: Sally
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Subject: Re: hi everyone, I'm a bit worried
hi Jae, thanks.I hope you are right.
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Date: 01.03.2010
From: Jae
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Subject: Re: hi everyone, I'm a bit worried
and if you need to just have a rant please go ahead i would completely understand regards hugs Jae p.s not very tight hugs my shoulders are bad at mo ;)
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Date: 01.03.2010
From: Sally
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Subject: Re: hi everyone, I'm a bit worried
Thanks so much! I am really holding out for the mtx to start working properly - I've got a life to live! However, the weather was so lovely today that it cheered me up a bit - feel much more like doing stuff, though hard to do some of it - though I often do more in a day than many people so a life at reduced capacity is still full. I'm sorry your shoulders are bad. I had a really nasty shoulder last year and it was soooo painful. So a gentle hug to you too :)
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Date: 04.03.2010
From: Kirsty
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Subject: Re: hi everyone, I'm a bit worried
Hi Sally I have had such battles getting off oral pred as well. especially the last 5mgs or so. I saw a really helpful dr once who was adament i needed to drop it very slowly and this would be more succesful so when i have to do it know i always do it like this and it seems to work. e.g. 10,9,10,9,9,9,9,8,9,8,9,8,8,8,8,7,8,7,8,7,7,7,7 I understand this may be difficult if you have only been prescribed 5mg tablets but it really helped me with getting off it maybe worth going to gp and seeing if they will prescribe you some to help you get off it. If I then had a bad couple of days i would just leave it on what it was on and not drop it. This really helped me and stopped me flaring. Hope this helps
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Date: 04.03.2010
From: Sally
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Subject: Re: hi everyone, I'm a bit worried
Hi Kirsty, thanks very much for your advice. I've dropped down fronm 7.5 to 5 but have one mg tabs. The theory was to drop 1mg a week but even that seems to much, sounds much like you. My rheumy nurse said to drop down 1mg every two weeks so stay on 5 for another week. Interestingly, things have improved slightly since Monday but am not going to rush it. Might go even slower now I've seen your plan. thanks again
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Date: 09.03.2010
From: Abbie
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Subject: Re: hi everyone, I'm a bit worried
Hi Sally I so see where you're coming from. 5wks ago it was decided oral mtx wasn't being absorbed hence not working properly because my pain was still bad and my CRP was 38.5. It was decided that I was to go onto mtx injections but as this takes a while to organise they gave me a depot steroid injection and put me on oral pred to try and give me some relief till mtx injections start and then while they take their time to kick in. Most of my joints improved except my left ankle and foot. As starting injections on thursday started reducing pred on Sat and ever since have felt reall under the weather and according to my GP, even though unpleasant this is normal and I just need to ride the transition out Argh! aswell as feeling under the weather other joints are very slightly begining to play up again. Just hope the mtx injections work for me as it's all really getting me down now.
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Date: 10.03.2010
From: Sally
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Subject: Re: hi everyone, I'm a bit worried
Hi Abbie, thanks for your post, it's really helpful. I know what you mean about it getting you down as am beginning to wonder if I will ever feel normal again. I've been feeling really 'fluey/coldy' for several weeks now - am convinced am coming down with something but nothing happens - which is just how I was when this pesky disease started last summer now that I think about it. The fatigue is terrible, am walking round in a fog at the moment and am trying to do what I can. I hope the injections work for you, I really do just as I hope the tabs work for me :) It is so hard coping with this day on day - couldn't do without this lovely forum!!
take care. x
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Date: 10.03.2010
From: jill
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Subject: Re: hi everyone, I'm a bit worried
Hi Gals, remember MTX can make u feel 'off it', my rhummy told me that recently, just general unwell, sicky feeeling, and sally6 ya right,ive had that a good few times where u feel your going down wioth a cold, but nowt comes of it...crazy , remember tho, IF u do grt sick, let nurse or rhummy know immed, cos if ya bad, they take u off MTX for a week or two....tc x
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Date: 10.03.2010
From: Jill
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Subject: Re: hi everyone, I'm a bit worried
Hi Abbie, good to see u here again, just a thought, I know there is a process with MTX, if u find that it hasnt helped after its kicked in etc, there are always the Snti TNF bio meds, combined with MTX they r gr8, help better, less flare ups, etc, so dont get too low, they wont leave u too long on MTX without thinking mb u fit the criteria for the Bio meds, i,.e. Enbrel, which I take 50mg each week
Jill x
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Date: 10.03.2010
From: Sally
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Subject: Re: hi everyone, I'm a bit worried
Thanks for that Jill. Felt really rotten over past few days plus really down too. Lots of changes in my life, none of them much good lol!
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Date: 10.03.2010
From: jill
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Subject: Re: hi everyone, I'm a bit worried
Hi Sally, hate feeling low, I felt unwell but also felt i was getting depressed at the weekend, ive had enough of things, health wise. last year back was more painful than normal(had spine op 2003) anyway, felt jarred,so surgeon said have MRI, I didnt think it wld show anything, then the waiting game for the results etc , saw surgeon to be told that the disc above my op in 2003,has also gone, so either have more bolts put in, or Fusion...he agreed that I go away and think about it, in between the back probs, my neck and shoulders got worse(neck has 3 discs gone, we only have 7 to begin with, anyway, rhummy gave bio nurse info to ring me to say that looks like I have impingement of the shoulders, meant 2 more ops(had that done 2007, both) so felt peed off that had to have those done all over again, more waiting, went to clinic, saw shoulder surgeon and rhummy at same time, turned out it was Not impingment(thankgod) Rhummy got that wrong, turns out my Tendons r shot to shi**, degeneration of tendons, now that was a huge blow, means my shoulder tendons r thin!Already have Disc Degeneration disease, cervical spondy(posh word for disc disease in neck... what with the regular Inflamatory Artha, I also have soft tissue disease due to Reiters,(kinda rare) then had stint recently in hosp, also waiting for results, hd neck MRI last Tues, cant have spine op until neck results!! so im feeling pity for myself, angry, and sooooooo tired!..... it seems that im getting lots of Individual diseases or conditions, all becos I have Inflamatory artha.....that is bad enuff, but other separate stuff on top is overwhelming, thats y im always at the hosp, seeing diff ppl, waiting lists, grrrrrrrrr...and now all this bliddy gall bladdder rubbish......Mite get Infla Artha under control, but the other stuff is Non ending, so guess im right to feel peed off......know others in here have a lot of other complicated health issues, not saying 'oh poor me' but im Sick of myself!! lol...
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Date: 10.03.2010
From: Abbie
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Subject: Re: hi everyone, I'm a bit worried
Hi Jill! Yeah the Rheum has said about that. If mtx injections aren't effective will stay on them but introduce a biologic. I hate going into the unknown. Just read ur last reply, God we go through it don't we. (((Jill)))
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Date: 10.03.2010
From: Sally
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Subject: Re: hi everyone, I'm a bit worried
hi Jill, not surprised to hear you feel depressed sometimes, you really have a lot to deal with. I'm amazed at your good humour generally and can tell you it is much appreciated here! Sending you a big hug((((()))) Keep your chin up girl! And I'll try and keep mine up too lol! Abbie, you are so right!! We do go through it!
xx
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Date: 11.03.2010
From: jill
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Subject: Re: hi everyone, I'm a bit worried
Awwwwwwwwww Sally n Abbie, fankoooooo so much u lovlely chicks... yep chin up always xxx
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Date: 16.03.2010
From: Abbie
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Subject: Re: hi everyone, I'm a bit worried
As I always say. . . "tomorrow is another day!" X
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