Hi Kary, and welcome to the forum, though sorry for the rather haphazard treatment you have had so far.

By "point of contact" I think you mean a specialist rheumatology nurse? The ideal is to have a rheumatology team, who can allocate appointments to the various people you may need to see, such as physio, OT, podiatrist. I know that treatment varies a great deal according to where you live, but yours does seem to be lacking in "joined-up care."

I was diagnosed in January 2006. I had follow-up appointments with the rheumatologist at approximately 3 - 4 months apart. I was also given a rheumy nurse, whom I could telephone if/when I needed. My rheumatologist organised X-rays, visits to physio and OT, and also the podiatrist to help with foot problems. I had a couple of intra-muscular steroid injections after diagnosis, to help until my meds kicked in. My bloods were monitored every two weeks at first.

You do not say what meds you are on, but you should be having fortnightly blood tests to check various things out, and your inflammation levels etc. Most meds take about 3 months to work, which I accept is very frustrating, especially when you feel no benefits from them.

I`m not sure quite what you mean by your GP not getting any response to his letters. My GP has `phoned my consultant on more than one occasion if he`s had a query - worth a try, but I`m at a loss to explain why a rheumatologist is continually ignoring a GP`s letter.

My best suggestion would be to ring the NRAS helpline, who will listen to your concerns, and give you some good suggestions to find a way forward and get some better care, even if it means changeing hospitals, which I decided to do to get the best care I could.

Good luck,

Kathleen x

hi Kary,

welcome,

i can only re-iterate what Kathleen has said.

i have always been given 3-4 monthly appointments with the Conultant but i do have good support from my Rheumatology Nurse. there is a direct line to her and she always gets back to me with 48 hours, i did use her a lot when i was first diagnosed in June 2010 .. she has a Clinic she leaves open weekly for emergencies like a flare and i am wondering if this is what you mean by "point of contact" she is almost like a friend to me and it's very re-assuring to know i can contact her.

do let us know what meds you are on,

and agree to give NRAS Helpline a call,

Suzanne

Hi Kary - I'm 54 and recently diagnosed - well it was back in May 2012 and since then a lot has happened and I've discovered a huge amount about how to tackle the NHS and get the care you deserve. I'm at the same hospital, under the same const as Naomi so my experience is similar.

It sounds awful that it took a year for you to start treatment, even though you had a diagnosis - that is totally unacceptable. The meds do work brilliantly for most people, but some (my perception is that it's a minority) do find that it takes a long while to get the best combination and have to try a variety to avoid unacceptable side effects.

The NICE guidelines suggest that new cases should follow a triple combination of drugs - initially pain killers and antiflammatory - typically steroids either injected or oral, or both - swiftly followed by one or more DMARDS. These are described as Disease modifying anti-rheumatic drugs - typically hydroxychloroquin and methatrexate. The steroids are intended to have an immediate effect but can ony be taken for a short duration of a few weeks or you get nasty side effects. The DMARDS take much longer to build up in your body and the effect is more gradual but longer lasting and the intention is to ultimately control virtually all symptoms.

In the early days it is very hard indeed, and the fatigue makes it all feel even worse. Sadly that is precisely the time when you will need to be at your most assertive to get the care you need.

I felt absolutely ghastly when I finally saw the rheumy and could barely walk, and I'd been pushed from one dept to another for 3 years. The const took a proper look at me and said "Yes RA - I can start to make you feel better by the end of today" - and she did! I had an injection in my bum which took effect immediately and followed by steroids orally for a month. Meanwhile I started HDX and a few weeks later started MTX - I had a bit of a flare when the steroids finished, but now after 3 months the DMARDS are working well and I'm almost back to normal - but wiser and more proactive in my care.

Ring the NRAS helpline for further advice, and have you read the various booklets provided by the NRAS? You will quickly find that if you are well informed then the docs and nurses take you more seriously.

Let us know what drugs you are on and you'll find lots of people here who can give you first hand advice and experience.

Very best wishes - Sylvia

Hi Kary

Welcome to the NRAS forum where you will make new friends, find much useful information and receive support from others with similar problems. My name is Lyn (I'm a Forum Moderator), I'm married to Mike and we have four 'kidults', Abby who is 24 and lives and works in Stratford Upon Avon, Ian and Jake who are 19 and Louis who's 17. We live in Thornton Cleveleys in NW Lancashire. I was diagnosed with Rheumatoid 24 years ago and have since run the gamut of medication and many surgical procedures along the way. Three months ago I was hospitalised and been diagnosed with Dilated Cardiomyopathy and Advanced Heart Failure, so a steep learning curve for me! Rheumatoid meds are all now up in the air and I'm waiting for them to crash land. Not sure what's next, decisions to be made!

Initially, as a newly diagnosed patient, I would be inclined to concentrate on getting through each day and familiarising yourself with medication and your own health issues. There's lots of information both on this Forum and on the NRAS website. The NRAS Helpline are available at the end of the phone and you can always be matched up with a telephone volunteer if you would like to speak to someone with similar problems. It can take time for a drug regime that works for you to be put in place. This can be hard but do hang in there and make sure you get the pain relief sorted through your GP, it's really important! For some patients getting the medication right can be difficult and time consuming but do hang in there. Rheumatoid is a somewhat unpredictable disease and meds may need tweaking regularly to keep on top of things. Being informed is more than half the battle! Do let us know what treatment path you are currently following. There may be someone on a similar regime who can offer advice.

The triple therapy (sometimes called combination therapy) Sylvia mentions relates to the Disease Modifying drug pathway. Initially one drug in this group is introduced, for example methotrexate, and then in the following weeks further DMARDS, usually up to two, are added until the disease is brought under control. These include drugs such as Hydroxychloroquine and Sulphasalazine, amongst others. Pain relief must be used in addition and regularly to achieve maximum benefit; anti - inflammatories and/or steroids are sometimes used in the early stages to help with symptoms (they do not change the progress of the disease in any way) until the disease modifying drugs kick in.

Be positive, there is a life with Rheumatoid, it's not the end of the world! Look forward to getting to know you.

Lyn x

Hi Kary,Have you tried to phone the hospital then ask them to put you through to your consultant secretary,give her your hospital number explain how you are feeling & suffering,see what she comes up with!!Me myself go to my hospital every three weeks that has been like this for over one year,as i am not too good at all.They have tried a lot of different drugs one day i will get something what will help me.Just do not give up.
All the best Valerie-R

Sorry kary! Forgot to say a BIG HELLO from me!

Welcome to nras

Hello Kary
Welcome welcome welcome!

There isn't much I can add from sylvia, naomi, suzanne, and everyone else!

I'm 40......sounds grown up!
I was diagnosed in 2007 after having a baby.

Just getting over foot op (hammer toes and bunion). Had three toes fused and straightened, bunion knobbly area removed and straightened so it doesn't point to the left.
I have to have my other foot done, not yet though because my other foot is still swollen and throbbing :-(

I have a party piece now, I can wiggle the toes on my right but not on the left - they have no way of moving!!

In a middle of flare up, gone back on methtrix - waitng for it to kick in!

All the people on the forum have given you good advice.

Take care
Jane
Xxx