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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:I go to see the RA nurse on Tuesday but I've no idea really what for as I've had to stop most of my treatment, so there's nothing to monitor! Gogs  Gogs, I wonder if it might be an idea to turn one of the normal suggestions on it's head. So, instead of going along with a list of questions to ask, would it be useful to go along with a set of answers to the obvious questions the rheumy nurse may ask? For example 'Why did you stop your medication?' That way you'll be able to give rational, prepared answers, rather than having to 'wing it.' What do you think? 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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Thanks Paul. I've really not got off to a good start with either of these nurses. They are both script people, ask a question off script and they cannot answer it, and this has made me very frustrated and cautious about just how 'sound' their knowledge is. However, you have a good point Paul, I will allow her to lead and I will do the answering.  Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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it's such a shame you didn't get off to a good start with Rheumy Nurse Gogs, and the fact they read from a script .. sounds like customer service section where you get no where!
mine has become a friend to me, she took me under her wing big time when i was scared in the early days, and instead of my having a Community Care Nurse come out to administer my first Humira injection, because i was terrified and didn't want a stranger doing it, she booked me in and did my first one, hubby came along incase i couldn't do the next one .. she offered to do the second one as well so i felt much more confident about the whole thing.
try and have a natter as well as talking all things RA .. see if she has an exterior you can break down, might surprise you.
because if i need mine now, she know's me well enough that if i leave a message on the answer phone then i need her, and she calls back within 24 hours. fortunately not needed recently, although i am doubled up in lower back pain doing way too much yesterday . went trigger happy with our steam cleaner and blitzed the kitchen, also left hand and both top of my arms are aching .. i should know better!
anyway enough of my warbling,
let's know how Thursday goes.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi everyone, Today I went to respiratory medicine. The consultant thought that the RA team had acted too swiftly  He wants to restart another double whammy drug this time but because it's combination therapy I should hopefully only have to take it for three months. So today also I had bloods, then saw the TB nurse (whom I will be seeing at regular intervals throughout). They want me to have weekly bloods which I suggested I might be able to have at the GP's although they were prepared to see me weekly (who in their right mind would chose to go to a hospital weekly if there was an alternative!). I have to wait now for a phone call to tell me if it's safe to start them and then I have an appointment for three weeks time with the TB nurse and the consultant in six weeks. Tomorrow I see the nurse at the surgery and in the afternoon I go the see the RA nurse and on Thursday I see the GP (You're all envious I know  ) There was a whole and long discussion about my continued loss of weight and I'm now to see a dietitian so they can at least try and stabilise it. I did try explaining to him that I'm not seeing myself as others, it is as if I am no longer able to assimilate any further information about my health and so I've effectively closed my mind to it. On a good note (there's got to be be some in our lives) I've bought a new car, so I intend staying around a bit longer  I've booked two holidays after consulting with my carer who will look after my husband. The first is a short break to Amsterdam in mid April and the second is a walking holiday in Kranjska Gora, we went there last year and it's great walking/climbing in the Julian Alps. I had also mentioned to my RA consultant that if I thought I needed it I would want a steroid injection before I went and she agreed. Thirdly I've treated myself to a Paramo jacket (I've always coveted one of these) , expensive but well worth the money as they last for years so I'm going to need a lot more holidays to wear it out! Forgetting my health, all in all it has been a productive two days. Gogs 
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Good on you Gogs. I hope you enjoy the holidays - you deserve it 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
Good to hear everyone is on your case and keeping your already full diary even more full.
More positive though, is that you are planning on staying around for a while! New car,holidays and a lovely new jacket can all only be good for you and help boost your spirit.
Keep on looking for that laughter!
Julie
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Good morning to all of you and especially those who have continued to support unfailingly Life is still uphill by my finger nails, but I'm getting there slowly but surely, and believe me there are a lot of people I can thank for that. I would like to ask those in the know - why, when you've had an IM injection of steroids (rather than joint injections), for a flare, some joints remain extremely painful. My wrists are exquisitely painful, I don't know what to do with them or how to position them for comfort. I am unable to hold a towel (too heavy and painful!!), squeeze a tube of toothpaste, dry a cup etc. etc. I am wearing splints but the whole hand is affected. Thanks Paul - I knew you'd be the man for the job but I've forgotten how to include someone else's comments to my comments now  Gogs xx
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:Good morning to all of you and especially those who have continued to support unfailingly Life is still uphill by my finger nails, but I'm getting there slowly but surely, and believe me there are a lot of people I can thank for that. I would like to ask those in the know - why, when you've had an IM injection of steroids (rather than joint injections), for a flare, some joints remain extremely painful. My wrists are exquisitely painful, I don't know what to do with them or how to position them for comfort. I am unable to hold a towel (too heavy and painful!!), squeeze a tube of toothpaste, dry a cup etc. etc. I am wearing splints but the whole hand is affected. Thanks Paul - I knew you'd be the man for the job but I've forgotten how to include someone else's comments to my comments now Gogs xx I can't answer the question re IM injections but as for the one about quoting someone else, look for the 'QUOTE' button way over on then right and then follow your nose. 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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I understand exactly where you are coming from regarding your wrists though only one of mine is affected. Ridiculous but so true that we can't even pick up a towel or squeeze toothpaste, or hold a mug of coffee!
I think you are due to have injections soon in your wrists? I have had several over the years and the first few were very effective but the later ones were not. I eventually had surgery to cut some of the nerve supply but two + years down the line and I am back to having a lot of pain again.(Sorry to be gloomy! ) I find those soft beanie bag cushions good for getting a comfy resting position especially during the night. I also use a lot of ibuprofen gel on my wrist which helps a bit (especially the one with menthol in it) Sorry if this is not much help but maybe worth a try
Julie x
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thanks Julie for your info.
Picked up my new car yesterday but there's no joy as it's really difficult to handle
with the amount of pain in my wrists.
Sincerely hope the injections in my wrist joints work (going on Monday for those), the IM injection didn't make a great deal of difference this time.
I was thinking this morning that if I had more than the two wrist joints painful I would stay in bed because the pain is excruciating, and I'm worn out
and doing nothing!
I will go and buy some Ibuprofen Gel this morning and see if it helps a bit.
Gogs
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:Sincerely hope the injections in my wrist joints work (going on Monday for those), the IM injection didn't make a great deal of difference this time.
I was thinking this morning that if I had more than the two wrist joints painful I would stay in bed because the pain is excruciating, and I'm worn out
and doing nothing!
I will go and buy some Ibuprofen Gel this morning and see if it helps a bit.
Gogs Hi Gogs Fingers crossed that the joint injections work for you. You might want to ask the doctor if, as well as the hydrocortisone, he could include some analgesia. Some doctors do, some don't. The analgesia won't last that long but will give you a blessed release for a couple of days so you can recoup. I am not surprised you feel exhausted. Active RA causes tiredness in and of itself. And do does pain. It seems to me that your priority at the moment is pain relief because you are so uncertain about the underlying causes and the treatments for the RA and the Latent TB. What pain relief are you using? My GP prescribed some oral morphine for me that I can take in extremis. Do you have access to something like that? If not a conversation with you GP (a telephone consul;t to avoid the pain of attending surgery) might be a good idea. Above all else don't let the pain drag your mood down. I think we spoke before about some CBT which I would strongly recommend to you - it did wonders for me and might 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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It seems to me that your priority at the moment is pain relief because you are so uncertain about the underlying causes and the treatments for the RA and the Latent TB. What pain relief are you using? My GP prescribed some oral morphine for me that I can take in extremis. Do you have access to something like that? If not a conversation with you GP (a telephone consul;t to avoid the pain of attending surgery) might be a good idea. Hi Paul, I went to my GP this morning and did mention the pain, he didn't suggest anything else and my guess is because of my liver problem. I'm seeing the consultant in the joint injection clinic on Monday and he suggested I talk with her. I am waiting for some ?CBT, sadly these things are not quick. Thanks for your input, it is valued. Gogs p.s It didn't work Paul!
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:p.s It didn't work Paul! When you select the quote button and then edit the text to delete the sentences you DON'T want, you have to be careful to NOT delete the commands at the beginning and end of the quoted text that tell the system where the quote starts and ends. It uses those commands to figure out where to draw the box that goes around the quote. These commands will be enclosed in square brakets "[]" and will say quote=name of poster at the beginning and /quote at the end. I'll lay good money that you deleted those commands? 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: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:I went to my GP this morning and did mention the pain, he didn't suggest anything else and my guess is because of my liver problem.
I'm seeing the consultant in the joint injection clinic on Monday and he suggested I talk with her. Maybe it is because of your liver but I hate to think of you being in pain if something could have been done. If you can't bear to wait till you see the consultant, give the GP a call? Whoever you get to speak to about it, GP or consultant, stick to your guns. These days no-one needs to be in that much pain. 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: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Gogs,
sorry to hear you're struggling with your wrists and unable to enjoy your new car. hope you get some joy on Monday.
sorry not posted, been in excrutiating pain myself since Sunday, over did things with a steam cleaner, my back and left wrist/hand have paid the price .. lesson learned when i first joined the forum, to pace yourself.
to sit at my computer chair for long isn't comfortable at the moment, and i have a very good chair. things easing up slightly each day now.
anyway back to the plot,
as Paul says contact GP for help with the pain seems best port of call, although i know you see him regularly.
Suzanne x
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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:p.s It didn't work Paul! I'll lay good money that you deleted those commands? I wonder if I managed it this time  Gogs Yes sir I did - until the next time
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Suzanne, Really sorry to hear that you too are in pain. This is a monster of an illness and only those with experience can possibly understand the misery of it. It just stops us from being 'normal' people anymore. 'Pace yourself' is all I hear. You certainly did go a bit overboard though with the steam cleaner - that is really hard work for th fittest of persons. Glad to hear it is quietening down for you - and yes, using a computer when your hands and wrists are painful isn't fun. Take care and good night. Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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Hi Gogs How are your wrists today? I do feel for you, they are my main focus point with RA & Carpal Tunnel. Went off to work in London for a couple of days and forgot to take medication. As I'm in remission I didn't worry too much but boy did I pay for it! Gobbled up those pills when I got home. Is the pain because you had to come off your medication for the TB tests etc? Like the others, so pleased you are planning to stay now and going on holidays to boot - good for you! Love how strong you are, even though you deny it. Hope the pain subsides soon for you. Angie x Be yourself - everyone else is taken. XX
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Angie, No idea what caused the flare, started around mid February and has just got worse  Slightly OK today - at least I can hold a tea-towel! Got some pain in my ribs now, especially on inspiration which my doctor feels is connected with the RA. Starting again on TB treatment on Sunday, then blood tests twice a week for goodness knows how long. Don't think I'll be able to restart my Leflunamide again for some time, but will get a chance to speak with the consultant on Monday as I am going to the joint injection clinic, also going to ask her about the neurosurgeon who hasn't replied to her letter yet, nor has he sent me an appointment. Never say you're in remission!!! Fancy just two days without treatment and it lets you know it's still around  Glad it soon settled again though. Going to get my hair done at the hairdressers tomorrow as I can't manage to do my own hair this week. Have a good weekend. Gogs
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Gogs - hope you enjoy the boost of a trip to the hairdressers. A new car and holiday to look forward to sound so exciting! Hope your wrist jabs are ok and work wonders for the pain. It is a miserable pain, like bone toothache. Good luck for Monday, I will be thinking of you and hoping you get relief.
You have done so well to come through these last weeks. When you look back to how low you were, you should feel really proud of yourself that you have survived all this and are making plans for good things to come. Let us know how you get on on Monday xx Ailsa
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