|
|
Rank: Member  Groups: Registered
Joined: 4/1/2011 Posts: 17 Location: cheltenham
|
HI ALL.
Well Dr Williams was fabulous, as soon as I told him why I was there, which was to be referred, he was in immediate agreement.
He also took quite some time in being very positive about the condition in todays world, which is very different to even as close as 20 years ago. He explained that I would be seen quite quickly and they would take over my care.
He did explain that the drugs were very strong and I would be on them for life, but the alternative of not being treated would be worse.
He also looked at my blood results and said it wasnt inconclusive from the results, but the symptoms which I was showing, it seemed pretty much like RA. I have been soooooo tired this week and I also get dry eyes and this weird pain is traveling round my body, stopping now and then to give me a 'rude poke' just to let me know its there, and the pain in my feet on monday was so horrid I had to get in the bath.
He also offered me some tablets diclafenic!!! not sure if thats spelt right. I left there feeling much more positive and happier after he reasurred me that my life is not over due to this condition, for which I was really grateful.
I also received a lovely welcome pack from NRAS today with lots of info in, so I know what my bedtime reading is tonight.
Thank you all so much for your kinds words and support, this last week it's been very helpful.
minxie xx
I am 48 who has been 'fit' for most of my life and I dont get ill very much (touch wood), so being diagnosed was quite a shock!!!!
I was diagnosed late summer last year. I think I have been in denial these last few months, but aches and pains are giving me a jolt into taking control.
I haven't been referred to a Rhumatologist, I didnt even know I was supposed to be seeing one.
My Dr said she wanted it to affect other parts of me before doing anything, which I think horrified the lady on the RA helpline.So I have now made another appointment with a different dr.
The more I read about other peoples journey's I get more anxious and worried 'hair loss' where does that come from.
Bald is not a good look for me I'm sure. I have never been one for taking pills, I never have done, but it seems medication to catch this disease early is essential in slowing it down. The list of medication is endless and seems very scary
I dont feel in control of my body at present as I dont really know what's happening to it.
Do i eat a different diet, to exercise or not.
lifestyle changes or just carry on.
I think it's the fear of the unknown which is most frightening, so I hope to learn alot from this site as well as all you lovely people as we strive forward together to live a happy painfree life.
As it's friday I hope you all have a great weekend..........
HI ALL.
Well Dr Williams was fabulous, as soon as I told him why I was there, which was to be referred, he was in immediate agreement.
He also took quite some time in being very positive about the condition in todays world, which is very different to even as close as 20 years ago. He explained that I would be seen quite quickly and they would take over my care.
He did explain that the drugs were very strong and I would be on them for life, but the alternative of not being treated would be worse.
He also looked at my blood results and said it wasnt inconclusive from the results, but the symptoms which I was showing, it seemed pretty much like RA. I have been soooooo tired this week and I also get dry eyes and this weird pain is traveling round my body, stopping now and then to give me a 'rude poke' just to let me know its there, and the pain in my feet on monday was so horrid I had to get in the bath.
He also offered me some tablets diclafenic!!! not sure if thats spelt right. I left there feeling much more positive and happier after he reasurred me that my life is not over due to this condition, for which I was really grateful.
I also received a lovely welcome pack from NRAS today with lots of info in, so I know what my bedtime reading is tonight.
Thank you all so much for your kinds words and support, this last week it's been very helpful.
minxie xx
Minxie
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
|
Hi Minxie Welcome to the forum. Sorry to hear you have RA - I thought only Consultants could actually diagnose it - so I was interested in your post. I would definitely see a different GP and get referred as soon as possible. Early treatment is essential as it aims to PREVENT damage. There are lots of different preventative drugs that can be tried. My consultant keeps telling me there are lots more to try if this one fails - she keeps saying this and I'm now on my fourth major one!! Mine has been caught before there is any damage to the bones. I am 49 and was diagnosed last year. It has taken me a while to come to terms with it, but I have been very grateful to my hospital - and this site. I have tried numerous drugs and at least seem to be getting some that work now! It can take a while. My daughter has just been diagnosed by her hospital, and has got all the drugs ready to start this weekend. Her GP referred her and she was seen within a month. As she is still so young I am pleased that they are looking to prevent joint damage rather than waiting to see what happens. The hair loss can be a side effect from one of the drugs - MTX - but not in all people - and taking Folic Acid alongside it seems to help. I am now on Leflenomide and Humira, which have given me some hair loss - but I decided that the benefits of the drugs have outweighed this. My hair dresser gives me a good cut, that hides any thinner bits! This did distress me initially, but now my joints are getting the benefits of good treatment and the pain and swelling has all gone; I have a slightly different perspective on it now. I agree that fear of the unknown is scary, and the more you post on here and keep asking questions the more knowledge you will gain, which will help you when you see a Consultant. I have learnt so much in the last few months and now feel in control of what is going on and I know so much more about all the options, side effects, advantages and disadvantages. By November when they were asking me about various options I was quite happy to do Humira injections myself, as it would give me more freedom - something a year ago I would have been very scared of doing! I now eat a healthy diet, following slimming world in fact (to prevent me putting on weight while I am on steriod tablets) - the whole family eats the same. i also do hydrotherapy once a week. I go for walks when I can - and stop before my knees get too painful. The advice for sore joints is to rest them when they are inflamed but keep them mobile. I was told not to push myself too hard and listen to my body. When the swelling has gone down, then it is ok to exercise. I am hoping to get back to kayaking this summer. I know one person who rock climbs! I really hope you get sorted out soon and the Doctor you visit is more helpful. If it was me I would insist on a referral to a rheumatologist. Have a good weekend too. Anne 
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
Hello!
Welcome to NRAS. Yes, you need to see a consultant and get some treatment on the go that slows the progress of the disease.
the hair-loss isnt normally baldness (!), its a bit thinner in places after some of the meds thats all.
I am 35, afraid I have been ill for the last 14yrs, severe RA so have been on most of the list of meds.... most people do great on MTX.
Jenni xhow to be a velvet bulldoser
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
|
Hi Minxie, welcome to the forum. Like Anne and Jenni i too agree that you need to be referred to a rheumatologist to start on some treatment. As for being in denial i think we all go through that to varying degrees, at first.
Bevxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Minxie.
Welcome to the forum however sorry that you diagnosed with RA. It is a difficult time for you
just having been diagnosed.
I am Rose aged 56 from Somerset diagnosed in 2008 been on lots of diff drugs to stop
the progression of the RA and minimal damage.
Like the others have said it is very important you get referred to specialist and demand it
quickly you must be sorted quicker rather than later.
Let is know how you do Good luck and don't worry about writing on this forum you will
always have a reply of help or advice on this forum.
Rose
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
 Hi Minxie Sorry to hear you have RA. It is an awful time when first diagnosed because you don't know anything about it and it all seems very scary. Obviously it would be better if we didn't have this illness but it isn't all doom and gloom. You can still do most of the things you could do before as long as u get the right medication. I am really sorry that you had a rubbish doctor. You need to be seen by a Rheumatologist straight away. I have had RA for 9 years now, diagnosed at the age of 51. I am on 20mg of mxt but have gradually built up to that. everyone needs different treatments and amounts. You will find your rheumy team to be very helpful and will see you pretty quickly once you have been referred. I have only joined the NRAS forum this week and honestly, it has been the best thing I have done regarding RA. I have learned such a lot from lovely people who actually know what I am going through. It helps so much to be able to compare notes and get and give good advice. We all need friends and I have found some great ones on this forum. I hope you get sorted out soon and look forward to speaking to you again soon Sheila G x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
|
Hello Minxie,
Yes those early days are a minefield, so many thoughts will be going through your head at the moment, I agree you need to see a Rhummy.
Come on here share your worries and you will feel better I can assure you. I was diagnosed last May, don't know what I would have done without the lovely people on here.
I am currently on 25mg MTX and fingers crossed all well at the moment.
Welcome
Anne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
hi Minxie,
Welcome to the forum ,where we all know exactly what you are going through!
You definitely need to be referred to a rheumatologist, it's no use waiting till the damage is done.
Hope you can get a referral very soon and can start on some effective treatment.
Looking forward to getting to know you.
Love, Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Hi Minxie, and welcome to the forum. I hope you can get a referral very quickly to a rheumatologist - it`s bad that your GP has taken no action on this, as you need to be started on a drug regime to minimise any joint damage. Do keep posting - there`s a wealth of info on here. Take care, Kathleen C x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Hi Minxie
Could I suggest you visit your GP again, this time armed with NRAS literature, which spells out very clearly how essential it is to get immediate treatment. Insist that she refers you immediately to a rheumatologist and if she still refuses, ask for a second opinion, which you entitled to. You could always get in by the back door, as I did, by going privately for your first appointment. I know you shouldn't have to, but sometimes, it's the safest way of getting a quick diagnosis. Things like this really do make my blood boil.
Please keep us up to date with what happens.
Good luck and keep pushing.
Love Jeanxxxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
|
Hi Minxie,
I'm Sara, 45, diagnosed last November and have had really good support from my GP, rheummy team but most of all the people on this forum! It does seem to vary so much from area to area but get yourself armed with some info and bang some heads together (only if it doesn't hurt mind you)
Good luck
Sara
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
|
Hi Minxie Welcome to the forum from me. I can only echo what everyone else says........you should of been referred to see a consultant and put on the right drugs to slow down RA. I am so shocked that your GP hasn't done this. I was diagnosed at 50 (three years ago) and I had always been fit, didn't do junk food, didn't smoke (do drink and still do wine ) and had always expected to be fit and healthy in my old age............but obviously not to be. I was the sort of person who had to have the headache from hell before I would even consider taking one pain killer and now I find myself popping 70 odd pills a week, but I know I would be in a state without them. At first I wouldn't take them in front of my husband, I didn't want him to see me doing it. I have what I call a love/hate relationship with my drugs. I hate having the need to take them but I love them in the fact that they keep me well. They have become my 'best friends' and I take them everywhere with me. Holidays, meals out, visiting friends etc etc, they are my constant companions, I won't even put them in my hold luggage on plane flights in case my bags get lost  . Don't get too worried about side effects from the drugs, I am taking two DMARD's and I haven't had any problems at all, I've still got a thick head of hair and it still takes me an age to dry it. No sickness, nothing at all. Everyone is different in how they react/tolerate drugs. As for the future......well......take everyday as it comes.........don't worry about something that may never happen..........Yesterday is history, tomorrow is a mystery..........today is the present......a present from God.............so enjoy it!!!!!!! Keep posting. Love Paula x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Hi Minxie
Welcome to the forum but sorry you have been diagnosed with RA. I am so shocked that (a) your GP diagnosed you and (b) said wait until you are worse before she refers you to a Rheumatologist. She is obviously not very up to date on her medical training as it is imperative that RA is treated at the earliest opportunity to avoid joint damage. Either see a second GP immediately, or if you can afford it, perhaps consider a private appointment with a Rheumatologist (approx £120). I did this and I was seen extremely quickly and was with the Consultant for about an hour going through everything. You are given the time to talk about all your concerns, whereas on the NHS there are always time constraints. Whatever you decide to do, a Rheumatologist should be the person to diagnose RA, not your GP.
It is a big shock when you are diagnosed and you grieve for the life you had. You just need to listen to your body over the next few months. If you are tired after doing something, then rest. You will soon learn what you can and can't do. As for diets, there are no proven diets for curing or helping RA. As my Consultant told me, if there were, they would be available on prescription. Do not panic about going bald. Yes you can have some hair loss, but with me it is a few more hairs in the plug hole each morning than there used to be. If you are given Methotrexate, the most common medication for RA, they will also prescribe Folic Acid which acts as a sort of antidote to the medicine.
The best advice I can give you in dealing with RA is to read this forum and post and ask questions. It is the only way I have been able to get over the last two years physically and mentally intact. The other thing I have found is that having a hobby (perhaps more sedate than you have previously enjoyed) goes a long way to keeping your mind away from what is going on with your body. I have taken up card making and I can honestly say it has been my salvation in keeping me busy but also allowing me to rest.
Please do not delay in getting proper help.
Jackie
xx
|
|
|
Rank: Member Groups: Registered
Joined: 4/1/2011 Posts: 17 Location: cheltenham
|
Morning, thank you all for your lovely replies.
I have made an appointment with another Dr for this thursday, and I am just going to ask straight out to be referred. I won't take no for an answer!!
I had a blood test which came back positive with RA apparantly. Gayle one of the helpline ladies from NRAS,asked me about other thing about what blood counts etc was and I had no idea what she was talking about.
I have had dry eyes for the last year or so, and didnt know til I read on this site that it's also a symptom of RA, I had even been to the Drs with it and they didnt know what was causing it.
My shoulder hurts quite abit today, so I know its on the move so I will also take my literature with me to the drs, so I shall be armed and dangerous.
I mentioned to Gayle even though I thought it sounded weird, that sometimes I feel as if its travelling around my body and she said, it's not weird but a sympton of RA. I have learnt quite abit from this site and I'm quite glad I found it by accident and don't feel quite so alone. I made my OH Martyn sit down with the NRAS booklet, A guide to your next steps, so he can try and understand what is happening to me.
Marty has just had cancer this last year and at the moment is ok, that was a really bad time, and we have been told that it will come back. We coped with a positive attitude with his cancer, so I intend to use the same positivity about my RA, ( when I am out of shock).
The sun is shining and it's Mothers Day, so I hope all you mum's out there have a wonderful day, and again thank you for your lovely replies.
I will let you know what happens at the Drs this thursday.
minxie xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
|
Hi Minxie
Im Ceri 43 and diagnosed almost 2 years ago.. just wanted to say welcome and to echo what everyone else has said! Good luck for Thursday and I hope you get the treatment you deserve Take care of yourself
Love Ceri xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Minxie Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS! I'm Lyn, married to Mike, we have four children (well I call them children but perhaps it's time to stop!), Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA nearly 23 years ago and have since run the gamut of medication and had lots of surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a wagon load of pain killers! I am amazed that 1) you appear to have been diagnosed by a GP of all people (they do not have access to necessary tests nor are they qualified) and 2) having dropped the bombshell proceeded to do absolutely nothing about it! I appreciate you have other things on your mind right now but a letter of complaint should be winging its way in a certain direction. It is negligent and unprofessional behaviour. Long term damage (for which surgery may be the only corrective procedure) can happen very quickly with uncontrolled disease. You need to be adequately and quickly assessed by someone who knows what they are doing and if you do have RA prescribed treatment to slow down the progression of the disease. I hope all goes well with your appointment on Thursday. Do keep posting. Looking forward to getting to know you, Lyn x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Minxie,
just wanted to welcome you to the Forum.
and glad you have now made an appointment to see another GP.
all the advice has been given ... you will always get help on here. i would be feeling very alone had i not found the Forum although i do have a fantastic Rheumatology Department. it is an awful lot to come to terms with when diagnosed .. i managed to lose over half a stone in a week with the stress of it.
my Rheumatologist has complete control of my meds for RA along with my Rheumy Nurse and i think this is the general rule. my GP is a good back up if i feel the need to talk about it and he does have good knowledge of RA and the Drugs.
i'm married aged 57 with a grown up daughter.
i was diagnosed last June and currently not under control yet. will be going onto the next stage of Drugs i.e. Anti-TFN.
do let us know how you get on,
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
|
Hi Minxie, Welcome to the club no one really wants to join. We are a friendly crowd with a wealth of tried and tested experiences, don't worry we have all been where you are at the moment, ( bar the doctor who does not know what the score is with RA ) I am absolutely appalled at the treatment you received. I am Lorna, I was diagnosed also at 48 and if I had been treated the way you had been I dread to think where I would be now. To let you understand in the course of 5 weeks I went from being fit and active to bedridden and unable to do very much at all. Each week I went down more and more. My hands were decoration they did not move at all, I lost the use of my right arm, could not turn my head and was bent over with the agonising pain I was in. And I was put on the triple therapy as soon as I was diagnosed. I am happy to say it worked for me and I am almost as well as before. As long as I do not overdo things. You see how important a quick diagnoses is, I really hope you get the treatment you deserve as soon as possible. It's lovely to hear from you keep posting and keep yourself armed with all the information. You will be fine when you get on the correct medication. Good luck with your new appointment. Lorna xx
|
|
|
Rank: Member Groups: Registered
Joined: 4/1/2011 Posts: 17 Location: cheltenham
|
well I am armed with my nras booklet, its in my handbag, and ready for my appointment for tmrw.
So wish me luck and I am not coming out of there without a referral.
what a gorgeous day it has been here today. Hope it's been just as fab where ever you are
minxie
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Minxie Be knowledgeable of your problems and determined  All the best. Do let us know how you get on ... Lyn x
|
|
|
|
|
|
|
