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Rank: Newbie
Groups: Registered
Joined: 12/3/2009
Posts: 3
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Hey all,
I was diagnosed with RA in July 2009, and since then have tried a variety of treatments including MTX, Hydroxychloroquine & Sulfasalazine.
After about 18 months of trying various combinations, and delivery mechanisms, none of which seemed to improve my situation and gave me some serious side effects, my (then) Rheumy Nurse & I decided in November of 2010 that I should stop everything and let them all get out of my system and they would start me on something new in a couple of months.
However during this 3 month break (in which the first month of I felt great) my local RA dept. got closed/merged with another and my regular consultant/nurse were no longer available, so I had to see a new team. This took an extra couple of months, due to them having to deal with 2 departments worth of patients, with less staff, and I didn't get to see anyone until April 2011.
When I saw the new nurse in April, she examined me and stated that I had 11 swollen & 11 tender joints and a DAS of 5.3, but she couldn't start me on any treatments because I needed to see a consultant as I hadn't seen one since March 2010. Anyway an appointment was booked and I got to see this new consultant at the end of May. He examined me and said that I had no signs of inflammatory arthritis, and he'd see me in 6 months to see if anything had changed.
Obviously I was not happy with this, and after all the problems with appointments etc. I'd been having at this new department, I asked to be transferred to another unit at another local hospital. My GP was happy to do this, as he was getting a bit fed up as well with how much they'd been messing me (and I believe a few other of his patients) around.
So this week I went for my first appointment with my new consultant, and he has come to the same conclusion. I currently have no 'active' inflammation, so there isn't a lot he can do for me at the moment. He did some x-rays, and blood tests, but if these don't show anything then I go back in 3 months to see if anything changes.
Now I fully understand that treatment of RA is all about the inflammation, but I don't understand where this leaves me. I am in almost constant pain, my ankles, knees, hips and feet, along with my hands and wrists hurt ALL the time. I am also very stiff all the time. All I am taking at the moment is pain relief medication (max. dosage of co-codamol for pain, and max. dosage of etodolac for inflammation), and whilst these do help take the edge off the pain they don't even get close to getting rid of it.
So my question is, If I am having such problems with pain & stiffness surely there is some treatment they can give me, other than just trying to mask the pain? Why do I have to wait for the inflammation to return before I can get help?
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi
I am so sorry that you have been given such a run around by the medical profession and even more sorry that you are in so much pain.
If you looked at my blood test results for inflammation and x-rayed my elbows, shoulders and wrists you would not believe that I have extremely active RA. How wrong this is. I am in constant pain and my Consultant is going for full intervention. I am currently on Methotrexate and have tried Leflumonide and Sulfasalazine. I have also had two tries at anti-tnf's which have failed. Tomorrow I have my first infusion of Rituximab. In January I had a knee replacement and when the surgeon opened me up my knee was completely shot from the inside but looked slightly better from the outside (so x-rays do not always tell the truth).
You do not have to have high levels of inflammation showing in your blood tests or deformed joints on x-rays to be really suffering with RA. If you are in pain then this is the only thing your Consultant should be listening to and he should be trying you on something to see if this situation can be relieved.
I was diagnosed in January 2009 and this was privately by a Consultant Rheumatologist as I have medical insurance. I was then passed over to the NHS as it is too expensive to be treated for RA privately. 12 months ago I could barely walk and my NHS team did not seem bothered. I paid to see the same Consultant again. We sat and talked for over an hour and he examined me thoroughly, took x-rays and more importantly listened to how I felt. He realised that my RA was totally out of control and referred me on for knee replacements. He also wrote to the NHS rheumy team and now I am on the right track with medication and care.
I am not sure where you live but many members of this forum have very good Consultants and it may be worth you thinking about going as a one-off private patient to see a Consultant (it costs about £150). This will give you time to talk and discuss your possible options. If you could post which county you live in I am sure you could get some recommendations, even if it means travelling a little.
I hope you get something sorted soon.
Take care
Jackie
x
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Rank: Advanced Member  Groups: Registered
Joined: 7/6/2011 Posts: 65
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Hi,
I was sorry and sad to read your very distressing post.
Having had RA since childhood I have seen a numerous amount of consultants and would strongly advise you to get a second opinion, privately if you have to.
I am not sure whereabouts you are in the UK? If you were willing to say then someone on this forum may well be able to recommend you a good rheumy who will listen.
I do have huge inflammation but still 'atypical' RA but that doesn't make my DX any less of a DX.......I would be fuming if a rheumy left me to suffer for that long, it is unacceptable and unprofessional behaviour.
If you are not in any way satisfied with your DR, be it GP or Consultant, then you have every right to change. You are entitled to as many opinions as you like, it is your body and your priority!
With love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I am very sorry to hear you are in so much untreated pain. This makes me so angry. Although we shouldn't have to, I do agree that a private appointment, with someone of your choice, for a second opinion, usually gets to the root of the problem. A lot of us have had to do this. One of my friends from Bolton travelled to Leeds to see the wonderful Professor Emery. If you feel able to say on here which part of the country you are from, I'm sure the members would have one or two ideas.
Take care
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi,
I too was so sorry to read your post, the way you have been treated (or not!) is just dreadful.
The same thing happened to me with the rheumatology dept closing and 2 hospitals merging.
I have not seen a consultant since January 2008, but having said that, I have had RA for 10 years and I am established on treatment, for this to happen when you are newly diagnosed must be devastating.
I agree with the others, to see a consultant privately to get a diagnosis and discuss your options could be the best thing for you to do.
Welcome to the forum ,by the way, and keep posting . You'll get lots of support and information on here.
Looking forward to getting to know you.
Doreen xx
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Rank: Newbie
Groups: Registered
Joined: 12/3/2009
Posts: 3
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Firstly thanks for all the replies & information.
I'm in Central Lancashire, but going private isn't going to be an option at the moment. I've had to stop working due to all this, and (if you'll pardon my french) I haven't got a pot to pee in at the moment, in fact I am in the middle of sorting out bankruptcy proceedings so finding money to pay for a consultant is not going to be on the cards for a long time.
To be fair, this new consultant was very apologetic, and understanding of how much pain & stiffness I'm getting at the moment. However he was adamant that he wouldn't (as he put it) 'just continue another doctors treatment regime', he want's to deal with my condition 'properly' but at the moment there is nothing to deal with and whilst he accepts that I have RA, as from my file he can see that I have been diagnosed and treated by 2 consultants he knows very well, he has to also take into account the fact I have no active inflammation at the moment and my pain & stiffness may have another cause.
It all sounds very reasonable when he says it, but it doesn't help me feel any better!!!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I'm very confused Bob. If the nurse said you have 11 swollen and inflamed joints, where is this new consultant coming from? You are in pain and need help. Have you ever been to Wrightington Hospital? I'm not sure what it's like now, but I have been told that Dr Chandra Chattapadhuri (who may have retired) is just amazing. I haven't seen him myself, but a forum friend, who has one of the severest forms of RA and spends much of her time in bed - she can't stand or do anything unaided - sees him and whilst other rheumies have given up on her, he never has and continues to do what he can for her.
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Rank: Newbie
Groups: Registered
Joined: 12/3/2009
Posts: 3
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Dr Chatty is who I used to see at Chorley, but when they transferred me to Preston he wasn't available anymore. After all the messing around at Preston, my GP asked for me to be transferred to Wrightington which is where I had my first consultant appointment this week.
I think the problem is, because of how long this has all taken, the swelling/activity that was visible when I saw the Nurse in April isn't there anymore, and I guess I just have to hope that something shows up on the blood tests, or x-rays, or wait until I have some swelling and get an appointment asap when I do.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Just so sorry you are in so much pain. I'm stunned by Wrightington's attitude. It seems as though it may be going downhill. I had my hip replaced there. I wonder if you have tried the NRAS helpline? They may have some useful info and advice.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
I do find some drs can be dismissive of people who don't have more obvious/ severe RA. Any RA is no fun if you ask me!
I would try and keep a diary of the pain levels and take that along and go and see a rheumatology nurse.
In early disease swelling does go up and down.
annoys one joint then 2 more and then back to 1 but in a different place then you just ache and are tired!
I wonder if you have had a look at fibromyalgia with the dr- it might explain a lot of the non joint related pain and fatigue.
The GP is the quickest option and I would book a double appt and explain all that you have here. I think you need an urgent drug review and in the meantime that pain needs to be better controlled. The GP can chivvy things along and find out what is happening!
take regular pain killers (co-codamols) and then have some bigger guns ones if you need them. It stops the peaks and troughs of pain that make it unbearable.
I have some slow release morphine (zomorph) in the day and evening that works in the background too- I have severe RA so that might not be needed for you- but you need to ask.
Finally, ask for the GP to refer for physio and occupational therapy. the OT can advise you on making life more livable including a section on energy conservation.
all the best to you
Jenni how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Bob
So sorry to hear that you are feeling so poorly but not being treated for it.
Like the others I belive you can still have active RA and it not show in your
blood tests.
Good luck I hope you get sorted soon
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Bob
My Consultant was Dr. Chattapadyah too. He has left Preston but he is still at Wrightington. As you say, all rheumy patients from Chorley are now going to The Minerva Centre in Preston which is where I go. I don't know but I would think that you would have to be referred to him from Preston. I have no idea who you see but like Jean says, if your rheumy nurse says you have inflamation, you perhaps need a second opinion. My new Consultant at Preston is Dr. McFee and she is great. See if you can get a second opinion from her, although you will probably have to wait a long time. She is booked up for months. Good luck
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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I rarely swell now, if I do it's not terribly noticeable. I do get tremendous heat in the joints, but very little redness. Yet the pain and stiffness levels are increasing. My bloods rarely show elevated inflammation levels even when I've had joints so swollen I can't flex them.
My rheumy counted far less than 11 affected joints when he started the proceedigns for Humira. Unfortunately for me the leflunomide I'd been taking gave me severe nerve problems so everything's been on hold until those symptoms have cleared.
Tell them to pull their fingers out and demand treatment. Tests aren't the be all and end all and any doctor worth his/her salt should know that.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Mairead - any chance you could e-mail me jeanmboyd@yahoo.co.uk? I would like a quick chat with you. Love Jeanxx
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Sorry Jean, I only just saw your message. Will do 
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Update: When i saw my consultant on Monday he stuck to the 11 joints and RAS score religiously.
I've been in agony for the last two weeks. I can barely walk, can't bend, can't crouch, can barely tolerate using my walking stick and spend my days sleeping and yelling at people but I still have no swelling (other than one finger), no redness, no heat and buggerall showing up in my bloods. I'm still RF negative. Meanwhile I'm on 30/500 codeines, 1000mg naproxen and 15mg depo (may have to zip up to 20mg) to get through the day. To all intents and purposes there's nothing wrong with me but God help the person who had the stones to say that to my face.
My consultant says typical of seronegative versions which is why it's a swine to treat. And it's just my luck to be landed with it.
You don't have to be swollen up like a bunch of chorizo sausages to be in pain, I'm with you on that one, believe me.
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Hi Bob and Mairead-H, I am like you guys, No RF no swelling etc. What I think we all find is that when we are flaring we cannot see a RA professional!
I have just paid to go privately for ultrasound to see if my pain is mechanical or active RA and was told there was nothing to suggest RA at all! The problem is that last Monday I was in agony so I made phone calls and got a referral letter faxed over to the private hospital. They didnt ring until Wednesday afternoon only to be told that the radiographer that does the ultrasound only works on a Wednesday morning and I had just missed him. Also the quote for £350 was only for 1 set of joints and I needed 3. I agreed to wait another week and went yesterday. My flare ended on Sunday 10 days after it started but 4 less that I needed.
I am on 25mg Mtx inj, folic acid and co-codamol aswell as depo when i'm bad. But I get the impression that not all Dr's are sympathetic to RF neg patients. There has to be a reason why we flare and not show symptoms! We are not frauds!
I am trying to be positive and think that the Mtx is doing its job by keeping and swelling and damage down!
Chin up! You are not alone!
Lxx
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