Hi there am new to this forum and was hoping for some help and advice.

It all started 2 years ago, with pains in my chest and down my sides, I went to my local GP and was sent home with some anti inflammatory drugs, after a week of not getting any better I went back to my doctors who eventually after a few more visits he referred me to a rheumatologist who I have been seeing since about July/August 2009. I have had a number of blood tests, x-rays, bone density scan and many more tests done, however nothing was found apart from a raised ESR which I was informed this was around the 80 mark and told it was due to RA and that my bone density was a little low.

Since then I have been prescribed a number of different drugs including Diclofenac, Codeine, Tramadol and had a Corticosteroid injection and a few others, but none have been successful and also some I had a bad reaction to and was very ill. Currently I have been prescribed Hydroxychloroquine, Diclofenac and Paracetamol which I have been on for nearly a year now but again with no success.

Over the last 6 months the pain has also started in my knee joints and I am starting to get very stiff each morning. I have also noticed I have inflamed lumps in my chest and sides which can be very tendered to touch, I have been back to my local GP about the lumps and was told it was not serious and it should go, but there was nothing they could do about this. Now over the last month or so I have noticed it more in my hands too.

I have informed my rheumatologist of the lumps and the fact my knees hurt now, and all I seem to be told is that it is nothing life threatening and to keep taking the tablets.

When the pain in my knees started I decided to go and see an osteopath, who has been trying to help with my diet and advised my to try some supplements, which I have been taken for a few months now and my diet has improve alot.

I am only 28 years old, some times the pain is so bad I can’t do anything but lie down and it is starting to affect my family life. I have tried all the drugs I have been given, I have tried hot tubs, cold showers, ice packs for my knees, I have also tried different supplements I have read about on RA websites but no thing seems to be helping. I have read so many different website on RA that I don’t know where to start looking for more help, I was hoping you might be able to give me some advice of what to do next or who I could contact to for some help. I am not happy with the advice I have received so far from my rheumatologist for taking all the different tablets I am on now, am sure that it can’t be healthy to take too many ibuprofen and Paracetamol.

I was hoping someone may recommend a different rheumatologist to go and see or just any advice to help me really.


Thank you for taking the time and reading my essay, I only pop on to write a little message

Hi Anne

Welcome to the forum - but I'm sorry you have RA and are having such problems at the moment.

Having spent 6 years on paracetamol and ibruprofen, whilst my RA became more and more out of control, I finally researched the "best" rheumatologist within a 30 mile radius and went to see him privately. He then transferred me onto his NHS list and is just amazing.

As you are only 28, I feel it is vital that you obtain proper treament immediately. I KNOW we shouldn't have to go down the private route, but this is YOUR life and if you can afford the £150 or so the first appointment will cost, it will be worth EVERY penny.
You will also have an appointment (hopefully) within 2 weeks.

I appreciate that many Rheumatologists are cautious in their approach - after all, who wants to be pumped full of two or three different toxic drugs until it is perfectly clear that RA is the cause of the problems?

Which part of the country do you live in, Anne? Maybe someone on the forum can recommend or at least suggest an alternative Rheumatology Department.

Love
Jeanxxxx

Thank you both for replying, its nice to have some other people understand for once and be able to have a good old moan about the pain, as I don’t think my family really understands sometimes.

I have actually been to see the consultant privately a few times and he wasn’t much better then. I asked my dad to come with me and at every appointment the consultant talks to dad about me like I’m not there, asking him if he wants to try the tablets or asking him about the pain. And all he ever says is ‘oh well its nothing life threaten’. I’d like to have him feel the pain for just one day then see what he thinks about it

However I have just had a look at another hospital near to me and might try them now. Although I now have to go back to my GP to be referred and trying to get in to see him is hard work.

It is getting to the point now where it is all a little bit too much, it feels like no one wants to help you at all, or actually believes you. If I ever tell people I have RA they seem to think I can’t have it as am ‘too young’, which is why I try not to let too many people know. Although to be honest before I was diagnosed I though Arthritis was only for older people.

I live on the Wirral, in the Northwest, so if anyone knows of any good consultants that who be great.


And I seem to of nearly written another essay x

Hi Anne,

Welcome to the forum! You can come on here and moan any time you like, we all know what you are going through!

Your consultant doesn't sound at all helpful, you will be better off asking for a change.

Looking forward to getting to know you.

Love, Doreen xx

Hi Anne
Welcome to the forum, I'm so sorry you are having such a bad time, poor you. I am also a newbie here on the forum and have found it very helpful. Everyone understands here and you will get lot's of good advice.I'm Shenac 53 years old,married with 3 grown up children and 5 grandchildren. I really do think you MUST see another consultant I know patients have done this before. Have you tried calling the helpline here on nras? It really helps to talk with someone who understands. My family are great now but initially I think they all thought that I would be fine again in a few weeks. Things are pretty bad right now, but I have a good GP and I do like my consultant and I hope to have an appointment to see him again soon as my pain level has gone sky high. Hope things get better for you soon, keep positive things will get better, and the people on the forum are always so helpful. take care.x Shenac

Dear Anne.

A big welcome from me. Sorry to hear though you have this dreaded RA at such
a young age.

I do think that you have every right to have a moan. Your Specialist does not
appear to be on the 'ball'. This type of thing does happen quite often I beleive.
However that does not help you at all does it. I would ring up RA helpline and
get names etc of local Specialists.

Do you have a RA specialist Nurse ? If so I think you should also contact her
to see if she can enlighten you more advice. You have to get checked out sooner
rather than later. Diclofenic is not a paticular strong anti inflam so they ought
to be trying you out on something else , plus a DMARD to stop this wretched RA

I am Rose from Somerset aged 56 diag late 2008 , been on mtx, hydro, suph
and leflun all of which failed or caused problems to my liver. Waiting to go on
TNF / Humira.

Keep posting ( it does help )

Rose

Hi Anne.

Your story sounds like mine. I had a slightly positive result a few years ago then it seemed to fizzle out. It sounds to me like yours isn't fizzling! Like everyone says demand a second opinon, keep plugging and bugging them You know how you feel. It's good you feel more positive and I hope you get somewhere. Keep us posted indeed Good luck and take care - Julie x

...and don't forget the amazing rheummy department at Bolton who have been held up as a place of good practice in the House of Commons. I see Dr Vasireddy there and he is absolutely the best!

Hi Anne,

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, 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! Struggling at the moment after knee surgery last summer, a major flare in Cyprus of all places, two lots of knee aspirations and joint injections in 7 weeks, a depo injection that didn't work and basically RA that has not been controlled for the last 12 months! But heyho...

I think the thing with rheumatologists is that they mostly have good training in what they do but for several reasons their knowledge and expertise doesn't make it across the desk they sit at when they see us. Its pretty typical from what I've seen of the world of medicine ... if you have the ability to get the grades, do the stuff at medical stuff you're in! Great work if you can get it :) Their ability to communicate with their patients is barely considered in the scheme of things. If you don't feel you and your rheumatologist have a future, and it doesn't sound like you have, the time has come to move on. You shouldn't need to go privately you are entitled to help on the NHS. Be careful you don't jump out of the frying pan into the fire!

Arthritis is a misnomer as far as RA is concerned and I wish to goodness someone would do something about changing its name! Not only does it send out the wrong impression but it doesn't adequately describe the disease either. As Jenni says it is an auto-immune disorder and as such is basically an overactive immune system. In RA the immune system is attacking the synovial membrane between the joints. However it can affect any joint or any organ.

It is important that uncontrolled RA is brought under control quickly to avoid irreversible joint damage. I think for now I would go back for an urgent appointment with the current rheumatologist (takes time for a new referral) and go armed with information. Sometimes when they realise you know more about it than average Jo they do actually take more time with you. Explain that you need a change in medication, better pain relief and something that will work on the RA itself such as methotrexate.

Hope you get something sorted very soon.

Look forward to getting to know you

Lyn x