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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Oh Ailsa, you are so kind, I wish I could give you a big hug  You have your own battles, and they are hard one's too. Gogs 
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Had my wrists injected yesterday - wow that was a bit painful  This evening I cannot believe how much better they are and how much more cheerful I feel, confirming how relentless pain drags you down. I just hope now that the effect will last a few months as I was told by my doctor that I wouldn't be able to start any medication for RA until the TB treatment was completed.  So, remembering last year I could be in for a rough ride again. Yesterday morning after taking these new TB drugs I experienced for about twenty minutes two periods of syncope - I felt really unwell.I phoned the TB helpline who got back to me later and said those side effects were unusual. I then decided to read all the info on these drugs and sure enough it said - 'Serious side effects that you must alert your doctor to' - guess what those side effects are!!!! I'll be showing him next time I see him. He had said he thought my neck was the problem. Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Blimey Gogs, you don't do things by halves do you? I had to go look up Syncope and OMG what a nasty side effect. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 9/15/2013 Posts: 125
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Hi Gogs So pleased your wrist joint injections have brought you some much welcome relief Though painful yes, the relief it brings is worth the doing if successful. Long may it last!  Julie x
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Yes Paul, it is certainly OMG!!!! I haven't heard how you are getting along with your steroid reduction? Thanks Julie for your good wishes, hope these injections do last longer than shorter - hope you are OK. I have just entered the logistical nightmare at my surgery of trying to arrange bloods twice weekly for the next however long. They have days I can't do, I have days they can't do, then there's a whole week when no-one at the surgery is available!! I've just tried contacting the TB clinic and they haven't put their answerphone on, and no-one is answering the phone!!!!!  Gogs 
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:Yes Paul, it is certainly OMG!!!! I haven't heard how you are getting along with your steroid reduction? In a word, SLOWLY. I am currently on 13 mg dropping to 12.5 mg on Friday. The pain is so so. I have good and bad days. Today's bad and having taken the dog for a hobble, the extra codeine has led to me sleeping for nearly 2 hours this afternoon. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Paul Barrett wrote:gogs wrote:Yes Paul, it is certainly OMG!!!! I haven't heard how you are getting along with your steroid reduction? In a word, SLOWLY. I am currently on 13 mg dropping to 12.5 mg on Friday. The pain is so so. I have good and bad days. Today's bad and having taken the dog for a hobble, the extra codeine has led to me sleeping for nearly 2 hours this afternoon. You've got a slow process going on there. Do they want you to get to zero - or will they be happy with 5mg daily? Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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I think it's a zero game. Pain won't be sufficient. I was in loads of pain last June when the MRI showed no inflammation Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Paul Barrett wrote:I think it's a zero game. Pain won't be sufficient. I was in loads of pain last June when the MRI showed no inflammation Ummmmmmm, oh dear Paul, sounds like steroid withdrawal pain, oh poor you. Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Yep - the next year (which is how long it will take) is going to be interesting. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Paul Barrett wrote:Yep - the next year (which is how long it will take) is going to be interesting. Don't know if you've read this link I've left below. I was trying to see if there was anything you could take to help the withdrawal period. http://www.medicinenet.c..._withdrawal/article.htm
Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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That's an interesting article. It looks as though the steroid withdrawal symptoms are almost exactly the same as the enthesitis symptoms. So now the question is which am I getting or is a mixture of both? Thanks for finding the article for me Gogs - that's really helpful. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Sorry your injections were so painful Gogs but hope they do the trick and give you some relief for a good long while. Twice weekly blood tests will be a problem to arrange I'm sure. I usually go to the hospital at the end of the day as it's quiet and no need to book. Which hospital are you with Gogs? Is that a possibility or not?
Hope you are feeling better - fainting is horrible. Wish things didn't have such rotten side effects! Take care xx Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Ailsa, Thank you so much for your continued support, it really is valuable. I feel so much better now the pain has reduced. The left wrist is not as good as the right one, and I have developed more nodules. Everything I've read about these extra-articular manifestations say that strongly sero-positive patients who get them will have severe RA I'm looking for an article which says that's a load of rubbish I've had no further episodes of syncope and hopefully there wont be any more. Ailsa, I go to MRI and Macc hospitals, about 25 miles apart!! Gogs
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Here's an update to this never ending saga - do you think the BBC might like serial rights  1) started new TB treatment - bloods twice weekly and now regularly going to the TB clinic (for my sins!) 2) The neurosurgeons letter appears to have got lost, nobody in Macc or Salford know's anything about it  . 3) Saw my GP today (lovely man) I'm going for endoscopy re weight loss and sadly/painfully haemorroids due possibly to all the medication!! 4) Being referred to dietitian by Chest consultant, again re excessive weight loss. Still going down. 5) All RA immunosuppressive drugs have bee stopped until TB treatment complete - 3+ months. No doubt my RA will flare and flare with no treatment. 6) liver is behaving itself at the moment, and slight syncope on Friday, but manageable. 7) I don't have a death wish but I'm not a very happy person, life is much, much harder than I am able to cope with. It would take only something very small to tip me over the edge again. Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Makes Holby City and Casualty look tame by comparison! I suppose the one thing that you can say is that you have a plan, which is something. Keep your chin up and keep posting and let's see if we can make that 3 months go a little quicker for you. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thank you Paul - you have a wonderful turn of phrase Gogs
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Rank: Advanced Member Groups: Registered
Joined: 9/15/2013 Posts: 125
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Who would you choose for the leading role? Seriously hoping your RA will behave itself for the next 3 months Julie xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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Hi Gogs I think, if BBC can afford her, Judi Dench should play you as she may look sweet and gentle to start with but she's one strong woman when she has to be and has the same sneaky humour that you do. Hoping nothing else comes along to challenge you and that you progress to a solution! Your virtual support group are all willing you well so it will have to work soon. Keep posting Angie X Be yourself - everyone else is taken. XX
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Gogs - i hope you are managing to get some rest among all your appointments and other responsibilities. You really do have your hands full. Being 'split' between hospitals is also vert hard to manage. Hope you get the scope investigation soon and some relief for the pain at the other end too. Poor you.
I know you must feel overwhelmed by everything that continues to happen. You have managed so well to come this far and still be posting and supporting others. I really hope you get a break soon and some relief from so many issues and stresses. keep posting so we can keep supporting. xx Ailsa
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