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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, had an appointment with the specialist nurse today, when I told her how much pain I am getting in my hips/knees/ankles, and that the depo jab in July had done nothing, in fact, the pain is much worse, i cannot move in bed for the searing and burning pain. She said she would speak to the consultant. He came into the room and spent 25 minutes with me going through everything, its never been more than 15 before!! I told him the pain is getting me down, its interfering with sleep, and I'm having difficulty caring for the children now. He went over all my joints and said there is inflamation there. He sent me for x rays on hips pelvis back and chest. He says it could be a disc problem, and not the RA, or even the fibromyalgia. He does think that anti-TNF is the next step (we discussed it before, but didnt go any further than that) he gave me leaflets for Humira and Enbrel, and said he wants to see me again in one month. By then we should have the results of the tests. He has added naproxen, but as I am allergic to diclofenic he was unsure about this, and if there is any sign of problems then to stop it. I said I just want one night's sleep, its killing me getting up at 5.45 with hardly any sleep. I am also having an MRI scan on hips and back, appointment to be booked. I don't expect the depo to do any good, as I am working for the next two days. My appointments are usually Friday, so its ok, but apparently Laura only does these session on Monday and Tuesday. Feeling very down at the moment, sorry everyone x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Oh Barbara - of course you are down and depressed right now and you have every right to be. Being in unbearable pain day and night is no joke at all.
On the plus side - you have seen your rheummy who now understands how you feel and hopefully will be able to prescribe ant tnf to give you some blessed relief from it all.
If the Naproxyn doesn't suit you, can you go to the GP to get them to reassess?
Hope you have some sleep tonight and some relief fromthe grinding pain.
Much love
Jeaxxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Jean, he didnt say what to do if I have an allergic reaction to naproxen. I would see the gp I suppose. Off to bed now, to try and get some sleep, night night x x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Barbie,
Sorry you are feeling so down, but it's not surprising with that amount of constant pain.
Thank goodness the consultant actually listened to you today ,and he seems to have a plan of treatment for you.
Hopefully the naproxen will help, and the steroid jab ,if you get a good reaction to it, should tide you over till you see him again.
Hope you manage to get some sleep tonight and things start to look a bit brighter for you.
Love Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hope you managed some sleep, Barb and the pain has lessened a bit. Please let us know how you are
Lots of love
Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Barbara,
sorry to hear you're suffering so badly.
hope the depo has worked some magic for you.
maybe this chat with the Consultant will get you moving onto a TNF soon, i've just started on Humira two injections in.
let us know how you are doing,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Barbara
Hope things are much better for you today.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hello everyone, I feel a little better today, had a better night. Not so much pain, during day, but kicking in a bit now. Feet are aching and swollen, have to do a certain amount of walking as I don't drive, nor does my husband. Hoping this one will do more good than the last. Thanks everyone x  BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Glad you got some sleep and are feeling a little better. Here's to another good sleep tonight.
Take care
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Barbara
I am sorry that you are suffering so much at the moment. I hope that you start to feel a little better soon and that you can be moved on to an anti-tnf.
Take care
Jackie
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 Barbara So sorry to hear of your problems, I do sympathise, I know exactly where you are coming from at the moment. Constant pain just wears you down eventually and when you are unable to sleep you end up in a vicious circle of pain versus tiredness. I take Naproxen and it does work well for me. Have you got stomach protectors to take, Naproxen can be a bit harsh especially the 500mg tablets ... I have to break mine in two otherwise the ruddy great big blighters get stuck and boy does that hurt! Fingers crossed for another good night tonight. Let us know how you are Barbara? Lyn x PS I'm sorry your daughter didn't get her uni place, neither did one of my sons  On the bright side ... you get to keep her for another year  ... and after all that worrying too! xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Barbara
Hope you now feeling better. Glad that the consultant listened to you. I have had naproxen (now on
celcoxib) I had to stop as they upset my tummy. Make sure you have tummy protectors.
Good luck and I hope injection tides you over
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Thinking of you Barbara,
I totally sympathise with you at the moment
Hugs and best wishes, hope you feel better VERY soon
Trace xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, just a quick update. The depo seems to have helped, my hip isnt as bad. The other joints and stiffness are the same though. The naproxen have been ok, no sign of the allergy I have with the diclofenic. I am on a stomach protector, have been for ages due to another problem. Lyn, yes, I am happy that I have Georiga for another year, but don't tell her that lol!!! I have been sleeping better, had a three hour nap this afternoon, so fatigued all the time. I wish foot and ankle pain counted in DAS, mine are so painful all the time. Well, thats my complaining over for now. Hoping others are not feeling too bad, and wishing you all a restful night x x BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Yes I agree with you I wish the feet and ankles were taken in DAS scores as well. I went last week and my score was 6.75
but if my feet / ankles were included as well I think it would be more like 9. I don't understand why they aren't . Does
anyone know why ?
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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I would like to know that too Rose. In fact it hadn't occurred to me that they weren't but now I come to think about it! I would be very interested if anyone has the answer.
Sheila x
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Rank: Newbie  Groups: Registered
Joined: 7/31/2010 Posts: 6 Location: Nr. Dover. Kent
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sheila_G wrote:I would like to know that too Rose. In fact it hadn't occurred to me that they weren't but now I come to think about it! I would be very interested if anyone has the answer.
Sheila x I'm really interested too if anyone has the answer, because my main problems are in my feet...x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Guys Just picked this up, hadn't spotted it before now! The Disease Activity Score (DAS) 28, a shortened form of the DAS that excludes the ankles and feet, is widely used as an indicator of RA disease activity and response to treatment. The joints below the knee were excluded because they were difficult to assess using the DAS pressure technique and the overall accuracy of the individual's score was not affected by omitting them when the DAS was being developed. So I am informed by rheumatology! Like others, feet have been one of my main bugbears and this seems to be in keeping with majority of poeple with RA. The disease tends to start in the smaller joints of the hands and feet and typically the ones that get the most everyday use! I wrote a blog on Health Unlocked some time ago which explains the basics of the DAS NRAS also publish an informative booklet and DVD if you want more info. Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Lyn, thanks for the info, I knew there was a reason the feet and ankles were not included, but couldnt remember what that was. I have been for more tests today re Sjogren's, I ha the lip biopsy done months ago, today have had the eye tests, green and orange dye then a strange test involving some local anasthetic then a kind of swipe over the eyeball to collect samples. This is all part of a study which is part of testing with a hospital in San Francisco, where they will co ordinate results to see how Sjogren's affects people. Then I had to see a consultant rheumatologist to be examined and that is the last part of the tests. Whew!! thats done and dusted now. Feeling tired now, hip pain is back with a vengeance, the consultant I saw today says its the trachy something bursa, and that I need more physio. I have enough appointments to go to as it is, its really hard keeping up with eveythig now....... BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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just had my report from last appointment. my DAS is 5.2, the x ray shows a degenerative changes at the lumbar spine. Also sparse basal crackles on chest (no idea what this means) Tenderness at the lumbar spine SIJ and right greater trochanter???? Waitng for MRI results on lumbar spine. I will start on anti-TNF therapy I just wish he would explain this to me, he sends me this copy that goes to my gp. Getting an appointment with one of the gps I want to see takes up to two weeks as its a large practice and always busy. BARBARA
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