Hi All

I was diagnosed three weeks ago by a rheumatologist who my doctor referred me to after receiving the results of a blood test. He prescribed me MTX 20mg weekly, which I started that day. After taking two doses still hadn't heard from the doctor so I phoned him and asked whether I should have a blood test and chest x-ray. I had the blood test yesterday at the local hospital, but nothing was mentioned about a chest x-ray. Today I had a smear test with the nurse and raised my concerns to her, as I felt if I hadn't mentioned anything to my doctor then I would have just been forgotton until my tablets run out. She said to make an appointment to see the doctor which I have done, they do not have a nurse at the doctors who looks after patients with RA, but she believes they should and will raise it at her next practice meeting.

I don't want to be a pain but on the other hand need to know what I should be doing and looking out for. The appointment is tomorrow.

Had an awful day today very stiff and painful, took my third dose of MTX yesterday how long on average before it starts kicking in.

Once I know what I should be doing and get used to having RA I think I will be able to handle it better.

Have not been told to take Folic Acid which most of you seem to be doing.

Anne.

Hi Anne,

As Lyn says, you should have had a chest x-ray and blood tests before starting on mtx, and you should be having blood tests at least every two weeks to begin with.
You also should have had chance to discuss the mtx with the rheumatology nurse before you started taking it but I don't think all hospitals do this.
Did they give you a booklet to keep a record of your blood tests in? There is also a lot of useful information about mtx in there.
Your GP should be able to sort out your blood tests for you if you will be having them done at the surgery, and the folic acid.

Doreen xx

Hello Ane
yes should have chest x ray,bloods,full examination before commencing treatment,i however have not been given chest xray,bloods yes and folic acid i took im not on myx any more.
im on planequil,good luck thats great your clinic nurse gonna raise about rheumy nurse being appointed,ps good you ahd smear best to keep ontop things.
welcome to nras.
melly

Hi Anne

Just to add to what I said previously (thought about it overnight!) and confirm what the others have said.

You should be on blood tests every two weeks for the first 2/3 months so that the medics can check that you are 1) not having adverse reactions to the drug causing kidney and liver problems and 2) responding to the drug.

You should have been given a Drug Monitoring book. This is kept by you and each time a blood test is done a few days later you can go into the surgery and ask the receptionists to put the results in. This is a record of your ongoing treatment and tests and should be taken to all appointments. This is important when you see different people in a team, rheumatologist, rheumy nurse, phlebotomist, GP and basically anyone else you may consult. It is full of good info too ... well mine is, but I don't suppose they are all the same!

As Kathleen has said if you have a pre- existing lung/heart condition you will be given Lung Function tests BUT EVERYONE must have a chest X-Ray. They need to check for latent TB because it can cause significant problems when Mtx is used. Anne, I can't remember how old you are, I'm 53, and TB was quite prevalent when I was at Primary school, at least two members of staff had it and we all had to be innoculated. So it is really important that you have the X-ray before you take any more!

I am really concerned that you haven't been given all this information and hope you pick this up before your appointment. If you want to get in touch with me about all this or if I can help in any way please give NRAS a call and ask them to put us in touch. I would give you my email but posting email addresses has caused problems of late!!

Good Luck today Anne and keep us posted.

Lyn x

Checklist:
1.Folic Acid
2. Chest X-Ray
3. Monitoring Book
4. Fortnightly bloods to start, then monthly for .... ever!!! (or whatever!)

Hello

I do feel that the system has let you down -poor you.

I can not add what Lynn has said I to had chest x ray, before even starting mtx (although not taking it any more)
Hope gone well tonight

Wow, the difference in standard of care is amazing. My GP, rheumatologist, rheumatology nurse etc have been fantastic. Whether it's because I go in armed with a list of questions, make notes and query things I'm not sure of/not happy about or because I really am very lucky I'm not sure.

I'll be taking my fourth dose of MTX tomorrow - 10mg. I started on 7.5mg for two weeks, this will be my second 10mg dose. I go back next week for a review. I didnt' need a chest x-ray as I'd had one not long before for something else plus I'd had a CT scan for swollen glands as a result of a severe allergic reaction to sulfasalazine. My rheumy was being uber-cautious that it wasn't something worse thank God. More blood tests than you can shake a stick at but now I'm on the fortnightly tests at the hospital and will revert to my GP for monthly tests when my dose is stabilised.

I have my book and my rheumatology team write to my GP after every appointment, copying me in each time so I have a full history in a lever arch folder.

Good luck with the MTX and ongoing treatment. It's a disgrace they've not told you what you need to know. Next time go in wiht a list of questions and don't be afraid to challenge them. This is your health, your body.