Hi

I was diagnosed with RA two months ago (August 2011). The consultant started me on methotrexate and told me to come back in two months to see the specialist nurse. So I went to my appointment with the nurse today and was in there for all of 15 minutes! She asked me how I was getting on with the methotrexate, I said it hadn't started working yet, she asked about the pain, I said it was getting worse, she gave me a steroid injection and that was it, off you go. She didn't want to know about how I was stuggling with everything, she just wanted me in and out as soon as possible. My question is, is this what I am to expect? Is this is how it's meant to be? Here are some tablets now deal with it? I have another appointment with the consultant in december, but will I just get the same thing when I see him? I guess I just feel really lost by all of this and need some advise from people who have experience with all this.

Thanks for any help with this

Amy
Xx

Hi
Sorry that you got the rA

In all honesty I think your care has been pretty good
You wait much much longer here to see a rheummy nurse and they don't normally do meds and you have to wait to see a rheumatologist for that which is about 9 mths- 1 year.

That steroid will help you while that mtx gets a chance to work. Most do well on the mtx but not all and you might need to request a drug review.

I would ask to see an occupational therapist about joint and energy conservation and you will get a longer appt and get the chance to chat through the realities of living with chronic illness/ ra.

Some nurses are very 'conveyor belt' which can feel very harsh when you are newly dx.

Nras forum is a big support too- use us for friendly support- we know more than any professional what it's like

Jenni

Hi Amy

One of the problems is that Consultants and specialist nurses are allocated a certain number of patients each clinic and have to work their way through them. As Jenni said - your department seems fairly good in that you were given a steroid injection to tide you over and are going back to see the Consultant in December which is about 4 months after commencement of MTX. MTX can take a while to kick-in: in my case about 12 or 13 weeks before I started to notice a gradual difference. My guess is that at your rheummy appoinment, he/she will add in another drug if the MTX alone isn't making much difference and/or increase the dosage.

Can I suggest that you ring the NRAS helpine tomorrow and ask for a copy of the "RAise it with your doctor" booklet. It has just about all the information you need on how to approach and get as much out of your appointments as possible. It also has a diary section for noting pain levels, fatigue etc. If NRAS have none in stock, ask them for my e-mail (or add me a friend on FB Jean Boyd). You can then let me have your address and I will send you one immediately. I coordinate the NRAS Bolton support group and always have a few spare leaflets/booklets etc.

Keep in touch and let us know how things go.

Love Jeanx

Hi Amy, sorry you have RA, but as Jenni said, everything seems to be in line. I was diagnosed over two years ago, and have never been referred to OT, I had to do it myself. My specialist nurse is good, but again, they have to see so many people that you do only get a very short time for the appointment. At your next appointment in December hopefully the consultant will determine if the mtx is working for you.

Good luck, and I hope you do get all the right treatment

Hi Amy

Welcome to the forum!

Wow ... two months and you are on methotrexate is really excellent. Go that health authority

You have been treated as we would all like, with a disease modifying drug immediately. This is the only way to slow a progressive disease in its tracks. Methotrexate can take up to 3 months to fully kick in so please don't expect miraculous results straight away. The nurse will just have been checking you simply to make sure that you weren't experiencing side effects from the drug, of which there can be many. The steroid injection should help reduce inflammation levels and therefore pain whilst waiting for the mtx to begin working. Another tick in the box for giving you something to keep you going in the meantime

As Sheila says you will have an opportunity to fully discuss how you are feeling and your concerns when you see the consultant. Do go prepared though, it should be a two way consultation and a chance for you to get your questions answered. Now is the time to be making notes about how you are on a day to day basis, good days, bad days, fatigue, levels of pain and inflammation etc. The more information you can provide the better the consultation will be for you both. Definitely worth asking if you can have an appointment with an Occupational Therapist as they will be able to advise about daily living and joint protection.

Come December the consultant may decide to add in a further drug to bring you onto combination therapy; this will depend on how you are feeling and the results of blood tests. Whilst on mtx your bloods should be regularly monoitored and you should have received a book in which your results are recorded. I have re-started mtx recently, after a years break, and had bloods taken two weekly for three months and have just returned to monthly blood tests. It's important these are done to check important levels of toxins in the body, please do ask with the nurse if this isn't being done.

Just realised Jean has already said much of this so it serves me right for not reading through properly in the first place and before writing lengthy answers!

Do keep posting, asking questions and reading; you will find lots of helpful information buried within the forum which will quickly increase your knowledge of RA. That knowledge will become very useful to you

Lyn x

PS Here's the link to the publication Jean mentions!

Hi Amy.

I think the main thing will be when the drugs work for you and then this horrible shock might ease with time..

That's how i feel at the moment after being put on three DMARD drugs sequentially within 4 months of being diagnosed. My blood tests are OK..

- Best wishes...
Darshin