Hi everyone
after being diagnosed in September was told I would be seen monthly by a nurse at least ,well that didn't happen ! have been on MTX for 10 weeks now , no improvement , in fact I am worse , also on pred. but on GPs advice trying to reduce it as having problems , feel bloody awful , tired , dizzy , weepy ( can't imagine why ! ) and now after counting the days till I see the consultant in January I get a letter postponing it till march and not seeing nurse till april !! anyone else feel like they are floundering about on their own ?

Oh dear Julie - how awful.

Let's try and offer you some advice based on my experience. MTX can take a minimum of 3 months to take effect. You don't say whether you are on tabs of injections, but for me the tabs were ultimately no good as I was noit absorbing them. It sounds like you are from the side effects you are listing.

MTX requires monthly blood tests. Have you been having those? If you are then next time explain your problem and insist on speaking to the rheumy nurse (often the nurse specialist does not do the actual blood tests but is present in the clinic).

Next you need a tw-pronged attack re your consultant appointment. Call your rheumy nurse and tell them you have problems and get you GP to take up your case too.

It's a shame you have to expend energy like this when you are feeling low, I hope you are feeling better soon.

Dear Julie,

Your 'care' is totally unacceptable and needs challenging soon by you.
Admittedly when we are feeling very low and unwell that's the last thing we want to do.

I have given you here a link to the NICE guidelines that every patient should have and know about.
Read it carefully then take it to your GP and point out that these guidelines are not being met.

If you get no joy there then phone the helpline at the hospital, speak with the nurse and tell her the guidelines are not being met.

http://www.nice.org.uk/n...e/14198/64284/64284.pdf

I wish you all the luck, I had a similar experience, fortunately for me my GP agreed, I went for a second opinion and the consultant also agreed with me,
I am now being looked after in a way that can only be described as first class by an amazing and hugely sensitive consultant.

Best wishes,
Gogs xx

Hi Julie,

That`s a most unsatisfactory state of affairs - no wonder you are struggling. You definitely need to contact your rheumy nurse, as you deserve better monitoring. Most people are given fortnightly blood tests when first beginning MTX, at least they are where I live. I also think a call from your GP to your rheumy consultant is in order, if only to let him/her know about the reduction in prednisolone. My own GP wouldn`t make any changes to treatment without checking with my rheumy - indeed he has done so in the past.

You could also contact the NRAS Helpline, as they will provide support for you.

Like Gogs, I changed rheumies because of poor treatment - in fact I changed hospitals, and now I have the best possible care. Incidentally, that was my GP`s suggestion, but NRAS were very helpful too.

Good luck,

Kathleen x

How's it going Julie? Did you go in all guns blazing and get the help you needed?

hi Julie,

i know how each area varies with the care from Rheumatology Departments. this was made very clear to me from an NRAS meeting i went to nearly 4 years ago now.

i had to phone my Nurse this morning .. left a message just after 8 a.m. on the voice mail, and she had phoned me back before 11.00 a.m. i know i am lucky in this respect but luck shouldn't come into it.

is your GP good with all things RA. maybe call the surgery for help on Monday.

are you feeling as awful as when you first posted? i know how vunerable you can feel when suffering, hope to hear some positive news from you soon.

Suzanne

still feeling pretty grim but not so bad as before. GP seems fairly clueless regarding RA and she's a bit of an old schoolmarm , don't get warm fuzzy feelings about her.. my last GP was lovely but have recently moved. got an appointment to see her in a week anyway. will keep trying helpline. the nurse I saw before was lovely , it's the system that's wrong isn't it ? just makes me mad that they don't think that something as simple to them as rescheduling an appointment has a huge impact on our life. will keep you posted x

Hi Julie
In the past when I have gad problems getting appointments I have rung the booking centre and asked about cancellations. It often means ringing every day but if you are able to take an appointment at short notice it can work. I always found them sympathetic and helpful. They were pleased to fill what would otherwise be empty appointment slots. It is worth a try.
Good luck
Sue

I am glad you were able to get through to the Rheumy Nurse. They are great simply because they have access to consultants as you found. Hope you soon feel better

Hi Julie, glad to hear that you finally received some help! I was diagnosed with RA in 2001 & over the years
I have definitely become more assertive regarding my treatment. All too easy to feel overwhelmed & abandoned.

I have been taking Methotrexate for 8 years & at first I felt sick, knackered & basically unwell. Then at 12 weeks, almost
overnight, I felt amazing. No pain, no swelling, increased energy, brilliant. It didn't last for ever & has been a bit up & down
over the years & I am now on anti tnf meds but hopefully you will find MTX helpful. I do take 200mg of Hydroxychloroquine daily
& my consultant said that for some patients, adding this drug to MTX can work very well.

My GP, who at least had some grasp of RA retired 2 years ago & now patients basically see anyone who is available. When
I wanted some advice after my injection site swelled when I first started Cimzia, the GP I spoke to said, he'd never heard of it,didn't know anyone who took it & couldn't help!! (Eventhough I had been to the surgery & spoke to a GP to advise that I was starting anti tnf - you would think, just out of curiosity, the Gp's would spend 5 mins reading the info on this site!!)

My consultant, who has been fab, especially over the last year when I have had a lot of problems, has just left & at the moment, there is no replacement. I'm about to change from Cimzia to Humira but I would be surprised if everything went to plan!

Hope you do well on the MTX & if not, I'm sure you will find the right meds in the end. Trial & error sometimes,
take care,
Jayne x