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Rank: Member
Groups: Registered
Joined: 12/20/2009
Posts: 15
Location: Warwickshire
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Hi All
Well i kind of need some advice as im at a dead end and do not know where to go.
For the last year and a half i have been treated with RA. I was first diagonised with RA through a physical examination of my hands which were swollen and could not move my fingers. Following this i was sent for tests which showed that my CRP was high and that this would be treated with a mxt which started off at 5mg and was slowly built up.
Throughout this i had steriod injections to help when the pain was really bad and it had now started to spread to my other joints such as my knee, hip ankle and half the time i spent time not being able to do anything for myself. Had to give up sport and at the age of 26 was relying on my mum and dad to do everyday things for me.
Any my CRP continued to rise and my MXT was increased and my joint pain continued. I was then sent for a number of xrays, body scans and ct scans, lung function scans which all came back clear other than maginal errosions on my hand which he said mean nothing cus u can hardly pick them out!
I have seen my consultant twice now who the first time decided to take me of MXT and leave me on medication at all other than morphine for the pain. Both times that i have seen my consultant he has basically told me there is nothing more that he can do for me and that i am just suffering from Cronic pain! So was sent for some more blood tests to look at the CCP (Ceroline Protein i think) which is an indicator of the RA antibody - well mine came back at 75 and it should be under 11.
With this he wanted to me to see a pain management consultant which i did and she told me it was not Cronic pain that it was to do with my joints and that the RA consultant really needed to put me back on some form of medication.
So Friday had another appointment with my consultant who again told me that it was nothing to do with my Joints and that i am just again suffering from Cronic pain. All the blood tests that i have had done with the CRP being high and the CCP mean nothing and that if i had errisons then i would have RA and he would treat me with medication but as i dont then i just have to get on with it.
So as you can see im majorly confussed and other than going for a second opinon im in limbo because i cant keep taking morphine and the consultant wont do anything for me and i really dont know what to do!!!!
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Rank: Member  Groups: Registered
Joined: 12/4/2009 Posts: 28
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Zobo,
Welcome! Not surprised you're confused but help is at hand. There are people on the forum who have tons of experience with the disease, hospitals, tests etc and they will almost certainly be on tomorrow and will offer you some sound advice. My advice would be to talk to your GP and explain the situation and ask them to find out what's going on, to talk to the rheumatology nurse (have you been given his/her number?) and also talk to the NRAS helpline. Thought I'd reply quickly as this is your first post, and I happen to be up. Welcome to the forum - most of them are barking mad but they do have lucid intervals!
Helen
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Dear Zobo! In the first place welcome to the forum. I am so glad that you have found us as it sounds as if you are in need of help.
This is a dreadful story! No wonder you are distressed and confused. My advice is to telephone NRAS first thing in the morning, telling them who you have been seeing and telling them what you have told us, and ask them to advise you. You really do need to see another Rheumatology specialist as soon as is possible to get a clear understanding of what is wrong with you and some direction for your future.
I would hope that the x rays would have been clear as you hadn't been diagnosed long enough, i would have thought, for too much damage to be done. The slight erosion in your hands appears to me to be an RA symptom.
Please phone NRAS in the morning. This is urgent.
Keep us up to date.
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hello Zobo,
Sorry things are so difficult for you, I agree with Helen and Eleanor to contact NRAS without delay and seek some support ~ you are being seriously fobbed off!
I'm sorry you have been diagnosed with RA but glad you are using this forum. The last thing you need is mixed messages from professionals who should know better. You will find you are not alone in this kind of situation and I hope that this gives you strength to shout out and gain the treatments you need.
Take care, stay strong and keep in touch ~ Liz xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hello and welcome
Hope that I can help you a little.
First of all the CRP (C-reactive protein) - the CRP is a level of activity of the RA measured in your blood. I can go up when you have things like infections but in someone with a chronic immune system disorder (which RA is one of) then it can show in the CRP. This is a much more sensitive marker than the other inflammation marker they look for in your bloods called an ESR. The ESR will also go up with lots of RA activity but is a much more general indicator of swelling and takes a while to react to the drugs etc and can remain higher for longer periods of time.
anyway, the CRP in most people is about 2-5.
I have very severe RA and this means for me it is normally about 45 (which shows a lot of uncontrolled RA in there) It has been a lot higher. When I was first ill it was about 18. As things have progressed and severe disease developed this is where I am now.
The anti- CCP test is one they tend to do when they are not sure that it is RA for definate that is causing the probs and it is also a useful indicator of how severe things are. For me, the number was too high to record. This means that my RA is officially crappy!
I wonder if your blood results have come down at all on the MTX and how long you have been taking it now?
There are lots of other drugs to try other than MTX if it isnt helping you. Lots of people on here are on sulphazalazine, hydroxycloroquine, anti-tnfs etc.
As for pain relief, I do have some advice but you will need to discuss it with the GP. I do take morphine but I take one called Zomorph which is long acting. This means I can have 1 x 10mg in the morning and 2x 10mg at night. I also take gabapentin in the morning 1x200mg and 2x 200mg (which helps with my nerve pain mostly) and another drug called celebrex (but most have diclofenac nowadays) to help with inflammation.
On top of this the main thing is taking regular and often paracetamol and codeine (Co-codamol) I take max dose through the day. It takes a few days to really kick in but then you dont get the huge pain peaks when you go mad with the pain it evens out and is much more livable.
I do understand very VERY well what it is like to get RA as a young woman. I was 20 when I got sick. I am now 33 and have had a very active (never dull thats for sure!) life and done an awful lot.
Where abouts in the country are you?
One more thing- if the pain/ movement is really awful, get along to the GP and ask for a depomedrome injection- it is a big whack of steroid and it serves to calm things right down for a while. The GP will obviously check with the hospital- so try and go when you guess the hospital rheumatology dept is open. Or the rheumatology nurse can stab you with it.
Anyway- have waffled on-
I hope I may have been some help
Jenni xxhow to be a velvet bulldoser
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Rank: Member  Groups: Registered
Joined: 12/3/2009 Posts: 21 Location: Aberystwyth
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Hi and welcome to the forum. I must agree with the previous posts about phoning the NRAS helpline for advice and support. Jenni has also pretty well summed up the pain relief available. It's maddness that they've told you to continue with Morphine without making much of an effort to give you a definite diagnosis. I know from experience what it is like to be sent from pillar to post and back before a diagnosis is made - my RA was put down to postnatal depression to start with!. Which part of the country are you? There's probably someone on here that is near to you and may be able to give advice about different Rhumatology Teams available in your area. Having a good GP also makes a difference, I have found. Hope you get some answers soon and keep posting - the support and advice on this forum is great. Take care, Sara x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I have to say agree with everyone on the forum.
PLEASE RING THE NRAS HELPLINE- and don't wait until after christmas - DO IT NOW.
I also think you should obtain a second opinion - pay and go privately if you can - that way you will be seen almost straight away.
Please don't despair - many of us have been in this awful position but have then been correctly diagnosed and treated.
Love Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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hI Zobo,
So sorry to hear how you are suffering.
I agree with all the advice you've been given .....ring NRAS and change consultants!
I hope you can get this sorted out soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Zobo
Sorry to hear you are suffering so much but glad you have found the forum. I agree with advice everyone has already given. Take care and let us know how you get on.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Zobo I'm speechless reading your post-it sounds all wrong! No RA professional should leave you like that. I would strongly suggest you ring NRAS who will have someone there who can help and point you in the right direction. Don't settle for this. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Zobo,
I agree with the excellent advice already given, you should phone the NRAS helpline ASAP for advice. I cannot understand why your rheumy has left you like this without having discussed alternative treatment options as there are other medications available that could potentially help to manage your RA
Good luck and hope you manage to get something sorted soon,
Love,
Barbara
XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Zobo, I`m so sorry you`ve had such a messing around by the people who should be helping you. I have nothing to add to the advice already given, except to welcome you here, where we all understand what you are going through. Please do as others have suggested, and ring NRAS asap - they were a huge help to me when I needed a new consultant. You need treatment now, not sometime in the future. Take care, & good luck, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 Hello Zobo welcome to Nras so sorry see you suffering so much and made feel so confused as to what happening not right treatment etc for RA. sure can relate. im 38 my woes started age 17. do hope u ive go phoning nras they are so good at helping especiallywhen see someone with ra who not being taken seriously thats what they here for to hlep fight for us. lots lv warm hugs inky07 cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi and welcome. I'm sorry to hear about the way you've been left, they wouldn't do that to an animal. You obviously need help urgently, and I can only reiterate what's already been said. I know NRAS will help you, and if you decide to change consultants, then a private consultation would help to get you sorted out in the first instance, then you should be able to see the same consultant at the NHS clinic afterwards.
Please don't hang on hoping things will improve, you need to get started on some proper treatment asap.
Lyn
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Rank: Member
Groups: Registered
Joined: 12/20/2009
Posts: 15
Location: Warwickshire
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Hi All
First of all can i thank you for all your lovely messages of support and advice. I have only just signed on tonight so havent been able to phone the NRAS yet but it will be the first thing that i do in the morning!
I came on here before when it used to use the old forum and just havent posted on here for a while as been in alot of pain and confused alot about what is going on!
Im from Warwickshire I live in a village called Wellesbourne which is like 5 miles from Stratford!
Once again thank you for all your lovely messages and i will definately let you know how i get on with the NRAS and with my gp once i have spoken to both of them.
BTW my name is Zoe if you dont want to call me Zobo - family nickname!!!!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Zoe so it should be welcome bac ahh u take care now glad u re joined us all best for tomorow lv inky07 cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello and welcome Zoe, I agree with the advice that you have been given, you shouldn't be suffering like this you need sorting and I hope it's soon. Glenys.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Zoe
Good to hear from you again. Now you know u are not on your own. Good luck with your calls tomorrow & let us know how you get on xx there's a map on here somewhere that lets you see who is nearby. I'm from Gloucestershire, I'm pretty sure there will be someone near you who may be able to give some more insight into services local to you.
Stay in touch, love from Liz xx
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Rank: Member
Groups: Registered
Joined: 12/20/2009
Posts: 15
Location: Warwickshire
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Ah thats cool Lizzie I actually work in Cheltenham at the Racecourse!
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Rank: Advanced Member
Groups: Registered
Joined: 12/6/2009
Posts: 81
Location: norfolk
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Hi Zoe,
I was gobsmacked when I read your post - I agree you should chat with someone at NRAS tomorrow as you dont appear to be being treated correctly. You have been given excellent advice above.
I look forward to reading your future posts and hope that some progress will be made without too much delay.
Keep posting
Sue
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