Hello!

Today I feel very cross and very upset! Shall I tell you why?

For the last twelve months my RA has been anything but under control. Following a bout of neutropenia lasting 4 or 5 months, brought on by an increase in methotrexate from 10mg to 15mg, I was taken off methotrexate and left with Enbrel and 3mg prednisolone! Yes, that’s it apart from a stomach protector and pain relief.

During these last twelve months my rheumatology appointment went from the routine 6 months to 15 months. Do you know why? It’s because of the government’s criteria to see all ‘new’ rheumatology patients within a given time meaning the rest of us have to sit it out ... move directly to jail, do not pass Go, do not collect £200! No matter that we too have our problems! Never mind that they would rather spend ‘our’ resources on people they can actually make better! That’s not me. I don’t fall into that category

Great, the rheumatology dept are getting an additional consultant, well, that should relieve some of the pressure. Guess what? I am moved from my usual consultant to the new one (who has absolutely no idea of my history) and my appointments continue to be put back. Quite by chance I find we actually have a Rheumatology Nurse Practitioner! Seems only the newly diagnosed get to know this, alongside their routine appointments for O.T., physio and podiatry. For years I have struggled and gone round in circles trying to get these services!

My GP gives me Naproxen, to try to help control things. Then I have an op on my knee which means stopping Enbrel. Result, RA now further out of control, I have a massive flare, and the decline continues when I restart. Consultant decides it would be a good idea to put something with the Enbrel ... at last, and if I could I would jump for joy, but alas I can’t, so I don’t! However, I have failed on most DMARDS so not much left and she won’t retry methotrexate despite my protestations. So it’s back on with Leflunomide ... had this 10 years ago and failed after 10 weeks (exactly where I am again!). Now I am off Leflunomide again due to side effects, no improvement in my joints and I’m going to see the RNP tomorrow.

Today I visited my GP in the hope of getting something to deal with the mouth ulcers and nasal sores created by the Leflunomide. What does he do? Almost throws his arms up in the air! “His hands are tied”, I wish, he might then understand how it feels to have parts of him not working properly or indeed at all! I can’t have stuff for my ulcers. There’s nothing. They stopped making Orabase because it doesn’t make enough money!! S*d the fact it’s a brilliant medication and provides great relief to many!!! I can have stuff for my nose. I wanted advice about pain relief ... I don’t get any. I’m given a prescription for Nortryptyline but I don’t want to keep trying out stuff to find something that works!! Exasperation ... followed by tears ... and a trip to the pharmacy!

The moral of this tale is if you are newly diagnosed make the most of what you are offered, in fact grab it with both hands. If you don’t, in the belief that “RA will go away”, you are fooling yourself; it doesn’t go away; it may improve. If you are prescribed methotrexate it’s because it will likely halt the disease process. Take it, don’t moan about side effects and not being able to have a drink of wine or whatever. Just swallow it/inject it. Feel better! When you sit in the waiting room, after a four week wait for an appointment, bear a thought for the person sat next to you who might have had to wait 12 months or more for their appointment. They are in as much pain as you. They too need treatment. Their mistake ... they acquired RA too long ago and no-one’s bothered now! That person could be me and I am not one happy bunny

Onwards to the Rheumatology Nurse Practitioner ...

Miffed, fed up and in pain!

Lyn x

Dear Lynn.

Gosh how miffed you must be. Everything you say, try and make a joke out of, is really a VERY sad
state of affairs.

I am sure that you quite rightly are feeling sorry for yourself tonight. I think the time is to contact Pals
if tomorrow you are not giving the relevant advice, drugs and appointment - It is dreadful.

Good luck for tomorrow.

Sheila you are lucky having a great RA unit in your area. I am afraid I don't get that . I have a follow
up appointment with the RA nurse to check on my humira (but not even started it yet ?)


Love Rose (sending you a hug Lynn)

Hi Lyn,

I totally agree with all that you say! It is dreadful that appointments keep getting put back so that they can meet the government targets for seeing new patients.
As you know, the whole rheumatology team disappeared from my hospital over a year ago and despite reassurances from the management that they will get the department up and running again, there are no signs of any progress.
It is 3 years since I saw a consultant, oh sorry, I did see a locum consultant in November. He did not know me, did not want to know me, and looked as if he would rather be anywhere but in that consulting room! He didn't examine me at all, didn't know what drugs I was on and didn't try to find out. Then to cap it all, he couldn't work the computer to get my blood results.
After 10 years I have just had enough of this disease. I refuse to go begging for appointments any more and in fact I am thinking of ditching the drugs and just take whatever happens.
I have a fantastic GP except where the RA is concerned. I feel he has really let me down with this, I am his only patient on Humira and yet he hasn't even bothered to find out anything about it, just says "oh I'm not familiar with humira " if I ask if something could be a side effect.
I think there are many of us on here who are not getting the care we should. Why should it be luck of the draw if you just happen to live near a teaching hospital so that you can get proper care? Before long it will be like the schools, people moving home so that they can get to the hospital of their choice.

Good luck for tomorrow Lyn, I really hope you can get some better , more effective treatment when you see the rheumy nurse, though you sound so angry that perhaps I should be wishing the nurse good luck!

Love, Doreen xx

Hi Lyn,

I could cry for you when I read your story of what is going on. It's your body and it's up to you to make the decisions based on your past history on 10mg, how dare she tell you to stay in pain because she thinks you should. I wish some of these high and mighty doctors could feel the pain we have felt......... they would may be think twice about refusing treatment.

You are one truly lovely lady, you have been a tower of strength to me over the last few days, and you have your own private hell going on. I wish you could come up to me for a time and be seen by my Rheumatology Doctor. She is wonderful and so thorough, my husband was referred to her and was seen within 1.5 to 2 weeks. I am sure she could help you.

I really wish I could do something to help you.

Take care Lorna xx

So sorry to hear of your troubles Lyn,

Yet still you are a pillar of strength in my eyes , in fact the above post strengthens that opinion .
It is a disgusting state of affairs , and should be highlighted to all who have an interest in protecting or changing the NHS.

After my last appointment i don't think it makes a difference who is my consultant , as even though i had the same one i had to go through my story yet again , and highlight errors in the notes , not helped with appointments 6 to 8 months apart. In fact the only time i thought i had been listened to and taken notice of , was the one and only appointment with the RNP a month ago,and this fast tracked me to a further appointment two weeks later.
I hope this happens with your RNP. Tell the RNP everything !

I have lost confidence in PALS , after i wrote to complain that the cashiers office was closed , meaning people who get their travel paid could not get their fares refunded for 11 weeks. I received a letter back from PALS which started " Sorry you felt the need to complain about his matter......" i was angry for a day :O.

Good luck with the Nurse :)


Rich :) X

Morning Lyn

I was very upset to read your post and totally understand your thoughts its not acceptable to be treated like this and something seriously needs to be done. It is morally wrong to be basically discarded and put to the bottom of the pile just to deal with the newly diagnosed, we all know each patient is as important as the next. When you are as poorly as this, it is very difficult to fight your corner, you really could consider writing to some hierarchy - even Andrew Lansley , you have a very strong case. Is there any possibility of changing hospitals no doubt alot of aggravation but might be worth it if you can.

I hope it goes well with the nurse today, thinking of you.

Julia xx

hi Lyn,

i am so sorry to hear of what you're going through.

no one deserves treatment like this ... but sadly the NHS seems to run on getting the funding right rather than patient care.

there is nothing i can add to all the above or nothing you don't know already having suffered for so many years.

but it does seem a lottery as to where we live and the care we get.

we have 2 Rheumy Nurses who are fantastic and worth their weight in gold, and i know they are " under threat " for lower ranking Nurse's.

and my Consultant and her Registrar's are second to non, of course non of this helps you but it makes me feel grateful ( not that we should have to feel grateful where our health is concerned )

i really hope you get the help you deserve tomorrow,

you give so much to this Forum which must be tiring in itself, but i know i have learned so much from reading your Posts.

sending ((( Hugs ))) Lyn and fingers and toes crossed as best i can for a good outcome tomorrow.

we are all here for you,

Suzanne x

Hi Lyn - kept thinking of you today and wondering how you have got on with the Nurse? Hope you have managed to at the very least get the pain relief you need and effective treatment for the nose and mouth sores, which alone can make life miseable. xx Ailsa

Hello Lyn so sorry you have all this hassle . Its terrible the way you have been treated. Its a disgrace the way you are pushed aside and i hope you had some success with the nurse practitioner. You are so very helpful on here and help everyone with their problems.I do hope you get something to help you soon .
Love Kathleen Mc.

Hi Lyn,

You have so much information on this disease and have been a tower of strength to me during my dark days, I only wish someone could wave a magic wand and make things easier for you.

With respect to mouth ulcers which I seem to have suffered from since taking MTX, my dentist told me the best thing was rinsing the mouth with warm salt water, it certainly does the trick for me.

Really hope someone helps you soon.

Anne x