Hello all ,
i have seen people's journeys to where they are at now on here and thought i would just add my own .

Off work since October 2007 , and it started with extreme fatigue and pins and needles in my legs and hands ,and pain in coccyx and lower spine . I also had pains in my knees which i had put down to having Osgood Sclhatters disease as a kid.

Initially referred to orthopaedics , where i was told by the consultant that it was my age (I was 44!) , and given a single physio appointment.
Also sent to have an endoscope put where the sun don't shine whereby they found out i had diverticulitis (an added bonus!!). The consultant who was handling the endoscopy side was very good and i managed to get a sideways referral to Neurology( rather than having to go back to my GP) due to the loss of feeling in extremities.

The neurologist was very thorough and despite his lack of personal skills i had a great deal of trust in him . . He also ruled out Peripheral Nerve damage and MS.
He also did an x-ray of my hips and lower spine which showed damage to my lower spine and hips ( which reversed the decision of the previous consultant that it was just age!)

After nagging my GP , i was given a Rhematology referral and given diclofenac and pregabalin by him.

Initial contact ( not sure of date ) with Rheumatology (after blood tests) showed raised RA factor and low level infection.. given steroid injection and had MRI and X-rays of hands and feet.
After 3 appointments, each six months apart .. finally diagnosed with RA and placed on 3 months of steroids. 6 months later when i finally got the appointment i was placed on Leflunomide ( together with pregabalin and amitryptylene from GP).

Haven't got on well with the drug 4 months later , as it kills my stomach (despite lansaprazole) , gives me terrible headaches and also have a very bad rash on my lower back and legs , plus i see no improvement of my mobility or the extreme tiredness.
Had appointment yesterday expecting to see the Consultant .. and it was actually the nurse .. explained all the above to her then she is going to pass the info onto the Consultant to see if i can change drugs .I also explained that i was a lot worse than a year ago....

So hopefully i will receive a letter through the post with a prescription in it , and the information as promised .
Was asked to make a 3 month appointment and to go back to outpatients reception , and was told promptly that the reception could only make Rheumatoid appts from November 2011.
So looks like my Consultant's secretary is going to be getting lots of emails from me ;)
The nurse also raised the possibility that it could be Psioratic Arthritis despite the high RA levels .. oh well we will see:)
Is there a NPAS ? hehe

Anyway perhaps i should have put this in the steam room .


Rich :)

hi Rich,

what a lot you had to go through to get where you are now ... and a year on still struggling.

i was diagnosed pretty quickly with RA straight away last June and immediately started on Methotrexate, then added Hydroxy which unfortunately haven't worked for me.

i had my appointment with my Rheumy Nurse yesterday as the first step of going onto Anti-TNF, and have to say it was very sobering. the Nurse asked if my Husband would like to come in with me and have to say glad he did.

it has brought home to me the reality of this awful disease and i know my Husband came out affected by it as well. i felt like i'd been hit with a sledge hammer, he had to go on to work and was on Callout last night till midnight. have to say i normally hate it when he's out late but have to say i was glad of the time alone as i could have a cry without making him feel bad.

i told my Rheumy Nurse i feel much worse than last June like you do ... but have to say i get really good and quick support at my Hospital. i'm booked in next month for second lot of tests then will be put forward for the Anti-TNF's ( already qualified with yesterdays Tests )

i asked are we likely to see any major changes in our Department with all the doom and gloom news re the NHS ... and she told me that the 2 Rheumy Nurses jobs are under threat !! they want to down grade to normal rather than Specialist Nurses. this has really upset me as i know my Nurse is top notch re RA.

if it were me i would definately make a call to the Hospital and ask for an appointment with the Consultant as urgent, i have no idea if it does vary from area to area ... but as i speak i make my appointment when i leave for the next one. an appointment for nearly a year ahead for an on going condition just can't be right.

i hope you have support network around you too ... because i don't feel people know about this disease, i know i can phone my Friend of over 30 years and she know's by the tone of my voice how i am feeling and she listens to me which means a lot. ( a bit like the Steam Room on here .. lol )

hope you get somewhere soon Rich it doesn't sound like enough is being done.

it seems it's a Lottery as to where you live, the NRAS meeting i went to last year said the same.

good luck Rich, do let us know how you are getting on ... i am sure you'll keep knocking on the door.

Suzanne x

Hi Rich,

So sorry to hear of the struggle you are having .
You really do need to see the consultant soon. Or could you ask for a second opinion?
My daughter had Osgood Schlatters when she was 11 , it has left her with a large hard lump on her right knee.
Hope that you can get some effective treatment soon.
Keep pestering them!

Doreen xx

Hello Rich

You certainly have had a rough old time.

I echo Lorna statement and hope you really do see light at the end
of the tunnel very soon

Rose

thanks all for your kind words ,

Still haven't received a reply from the Hospital , so am going to email the secretary :)

Problem is , as i have been told , that the Nurses line is no longer in proper use as the Nurse is actually covering the Consultants appointments due to demand.
Hence i think it is purely a funding issue , which when you think about it objectively is ridiculous , as a bit timely work now will stop or delay further costs to the NHS for joint replacements and or more invasive action .
Even the talk of NHS reform seems to have made departments not want to "rock the boat" , when in fact they should be fighting their own corner!
Unfortunately two and a half years on benefits have wiped out any savings i had and therefore cannot consider going private :(

As a patient i do not think i should have to worry about funding and political decisions , however i am me and i will always have concerns above my own treatment . i.e if it is happening to me then there must be others affected!.

Any way this is not a whine , it is just the way it is . I do have a contact on the Board of Trustees at the Hospital , however i will need to do a bit of research first so as to be correct in any assumptions i may be making .

Onwards and upwards :)

Rich :) .. and looks like a photography day today .. with the sun smiling :) first in ages :)

Hi Rich
i also could have P.A its hard for them to find out .I also have other overlaps including mild Scleoderma ( mild crest tpye )
i have odd tiny patches of scales which come and go .
i have double appomeoments sometimes with the r.a and skin people but coming up with p.a even then after biopsys and double appoments
no one knows .I also have ridges on my nails but also show up R.A as well .
i think i have grand mixuture .

Who cares as mtx does its job ,

i also went from working full time to not working i never went back as almost a year of sick but things have changed i would not manage a shift or keep speed up for long so no point going back i did careing i now do it vol .

CHRISTINE

Thanks all ...

and thanks Fiona .. half the battle is realising that you have rights , and what exactly they are . And together with those rights .. go responsibilities.But when you have to fight for everything , including healthcare and benefits it does grind you down. However frustration for me leads to action rather than giving up , and i am lucky that i have days when i do get the energy to be able to take action :)

well i was still waiting for a letter and prescription for new drugs as promised but none had arrived .
Run out of leflunomide tomorrow ..so have made an appt with GP..can't get one til Thursday (and not with my regular one).
Tried ringing the RA Nurse helpline and it has been closed since October ..and tells you to see your GP :O
Telephoned RA Secretary and left a message at 0900 and got no message back .

Then at 1500 .. i got a text on mobile saying ......This is a reminder that you have an appt on 14/02.2011 at 1600 .. if you are unable to attend pls call blah blah blah ..
Rang them to ask what the appt was about..... answer machine ,,, left message .. no call back..
So here i am , running out of leflunomide , not able to get through to anyone , and have an appt which i don't really know what for (is it a referral to dermatology ? , is it Rheumatology Consultant?Did my Bloods taken last week show anything?)
I have GP's on Thursday so will ask for a weeks worth of Leflu , though am tempted to stop totally as it isn't dong me any favours .

Anyway all details have been recorded here and pasted to a word document .. to show the state of play of Rheumatology at Darenth.And i know these are funding issues not staff issues

Rant over and the saga continues :)

Rich :)

Hi Rich

What a bummer this is! I have been on Leflunomide for 8 weeks now and I'm actually getting worse not better, clearly doing no good whatsoever. Yesterday I collected another prescription for a further 8 weeks. Someone (other than me) should be monitoring this. Whilst I am able to monitor my blood results (much experience!) many people can't nor should they! In effect, like you, I will carry on with Leflunomide until my rheumatology appointment in May, oh now June, oops no it got moved again its now July! Beggars belief!

Yes, follow up costs money, but do they not realise an effective system could save a fortune! There's you chasing your tale with no meds, a closed helpline, a different GP, an appointment that you don't know about and no response from anywhere!!!

No bloomin' wonder we get driven to distraction! Good luck on Thursday Rich

Lyn x

Thanks for all the posts ,

and Paula .. travel is an issue and i don't think it's the Health care team's fault that the system is like this , it appears to be a funding issue . And like anything unless they can get extra funding then it would mean taking money from other departments such as oncology etc etc .

Lyn .. i think you have to press the issue , otherwise they could assume it is all going ok :(

Anyway .. finally got the letter and it is an RA appt on the 14th Feb , presumably to change drugs , but could be the bloods , who knows? They do fall short in that respect too :(

Deliberately had a double 10 min appt with GP this morning and have now got the extra leflunomide and Dovonex cream (calcipotrial) and had a good chat about what has been happening . He will support me if i decide to take health care issues any further. Also both ears are really blocked so am going to have to feed my ears olive oil for 5 days and then go and have them syringed :) hehe i might be able to hear then .... pardon ?

So went to get my prescription at the chemist , and they were doing yearly checks on medication .. so had blood Pressure done , and a run down of all meds i am taking , also picked up my repeats ... in a carrier bag :O Just glad i am not paying for them .

Leflunomide 20 mg
Lansoprazole 30 mg X2
Lyrica 75 mg X2
Amitriptylene 10 Mg x2
Dovonex Cream 60 g x2
Movelat Gel 125 g

and from Tesco ... Finest Olive oil 250 ml ;) lmao although he refused to write out a prescription for that :) lol

So i have Dentist and RA consultant on Valentines day :( c'est la Vie

Onwards and upwards :)

Rich :)

Well ...

Hi all ... had the appointment .. waited there over an hour on horrid seats .. and had to book in the outpatients with their new electronic system which gave me an appointment number (like in a supermarket)
Then a tannoy calls you by number to "Orange Zone Room B".

The Consultant then asked why i was there , so i had to repeat all that i had told the nurse three weeks ago , and told him there should be some notes there in the ever growing bundle :O
I told him that i was very concerned about really bad headaches i was having , to which he replies "ahh it's probably your spine" ... but he said nothing else.
Showed him the rash and explained the extreme tiredness and inability to walk too far etc etc.

He stated that the leflunomide should have worked for both the Psoriatic and Rheumatoid Arthritis (an optimist), and asked if i had taken MTX before, which i said NO.

So upshot is .. 5mg weekly to start , staged upto 15mg Methotextrate , folic acid 5mg on every day i don't take the MTX , carry on with 20mg Leflu until i'm taking the 15mg MTX , then drop to 10mg leflu. Monthly bloods done locally , and another appt in 3 months (which will be 4 or 5 months in my experience . And a free leaflet on MTX and a little book to write down my doses and put my latest bloods in (hang on a minute .. i don't get my blood results !!)

I asked why the nurse helpline was closed , and all he stated was that if in problems contact his secretary , with no explanation of why there was now no nurse support .
No further mention of reason for headaches , 2 1/2 stone weight gain , total fatigue etc .
At one point he asked whether i was sleeping ok , to which i replied NO ( and explained in detail), then he went onto something else .

I have had this before with them , something is said then you miraculously get a letter from X-ray or MRI or another department saying you have an appointment but with no explanation as to what exactly it is for :(

Sorry for ranting but i have to post as to write it down and have others comment seems to turn it into an objective problem , rather than a subjective one .I will also probably cut and paste from this into emails to wherever i decide to take these issues.
Due to all of the above i cannot recommend this particular hospital in Dartford.

Rich ... onwards and upwards ..triumph through adversity and all that gubbins ;)