January 3rd 2013 RA Nurse appointment

[verena]

Hi

Thank you

I have gained huge confidence and courage from reading everybody's blogs, questions and answers.

I was diagnosed with RA and Sjorgens in September 2012, I was given a steroid injection and this was very effective and I then had /hydroxychloroquine prescribed to be taken daily. this hasn't been totally effective as the pain, swelling aches and fatigue is still here but not as bad as previously.

I am still coming to terms with all that this means but after my December appointment with the RA nurse she asked me to come back on the 3rd January to start on MTX.

I am worried about the about the whole RA thing and the amount of meds I will be on already, is this the same for everyone?

I am starting to list all the questions I should ask and wondered if you all might have suggestions I might not have thought about?

Happy New Year

Verena

[Hidden]

Hi Varena and welcome. Sorry that you have this RA diagnosis. I was diagnosed in November '11 and have been on MTX ever since - which I now take by weekly subcutaneous injection (just now!) and last April I started Hydroxichloraquine too. This is a very good combination for many people whose RA is caught early and I'm no exception. I had a few teething problems when my MTX dose was raised and I got bad nausea so this is why I now take it by injection. I find the two drugs are controlling my RA really well but it didn't happen overnight so give them a chance as DMARDs can take up to 6 months to properly take effect.

I think you should ask about how often you will have your blood monitored while on MTX - it should start off weekly and then move to 2 weekly until you reach a stable place and can start only being checked monthly. You could ask what your nurse says about alcohol and MTX if you think this might be an issue that will affect you because MTX puts an increased strain on your liver. You could ask when and how quickly you should report side effects of the drugs if you have any - which many don't so try not to expect them. And yes most people are on quite a cocktail of drugs but hopefully you will just get used to this and even learn to love them for keeping your RA in check hopefully. Good luck and happy new year! Tilda

[Tillytop]

Hello Verena

I am sorry about your RA/Sjogrens diagnosis but glad the Hydroxy is helping some, Coming to terms with your diagnosis will take time and I am glad that you have found confidence and courage from reading other peoples experiences - I wish sites such as this one had been available when I was diagnosed many moons ago.

Your worries about the amount of meds you are taking are completely understandable but unfortunately multiple meds are pretty much par for the course with RA.

Tilda has said exactly what I would have said about the specific MTX questions. The only thing I would add is to ask what the advice is regarding stopping the MTX if you are unwell for any reason (eg with a cold or infection). The advice seems to vary between doctors - some people are told to miss their normal dose if they feel at all unwell, others are told to carry on as normal, so it would be worth checking because it's one less thing to worry about if you do find yourself in that situation.

You should also ask about a flu jab if you haven't had one already. I don't know if it's too late for this year, but usually an annual flu vaccination is advised if you are on MTX. And usually people are offered a pneumonia vaccination too. You would probably be told to go to your GP for these but I think it's worth checking with the nurse what is recommended.

The other information which might be useful for you to know is how to get help and advice if you need it before your next appointment. For example does your hospital have a rheumatology helpine telephone number? I think most hospitals do these days and hopefully, if yours does, you will have been given the information already. If not though it would be a good idea to ask, so that you have the details to hand if you need them.

One final thought re the Sjogrens. I too have Sjogrens and, although Sjogrens comes under the umbrella of rheumatology, referral to other specialists (eg eye specialists, ear, nose and throat specialists) may be needed for help with specific Sjogrens related issues. So you might also find it useful to ask how you go about getting that specialist help - in my experience sometimes the rheumatologist will make the necessary referrals, at other times it needs to come via the GP.

Really good luck with your appointment tomorrow Verena. And I really do hope the MTX helps you.

Tilly x

[verena]

Thank you Tilda

It's very reassuring to hear that I am not alone! I realised that my original post is very much a list about me - how selfish of me.

I had forgotten about the alcohol issue! Since the children have grown up my social life has become important to me and although I don't need to drink I do enjoy it. The glass of wine over a meal will be the hardest thing to give up

I have found my memory a little unreliable, do you think it would be acceptable to note key points?

Verena

[Hidden in reply to verena]

Don't worry about putting a list about yourself - its your blog after all so its not one bit selfish. I don't have a rheumatology nurse to ask things of so just have to ask my GP and its been very useful reading of what people are advised by their rheumy nurses for me so do come back and tell us how you got on. Tilly is completely right - you should try and have a flu jab before starting MTX because once you are on it yor immune system may be a bit compromised. Tilda x

[Hidden]

Nras do helpful booklets on what questions to ask and what to expect at first appointment.

[shirlthegirl]

Hi I'm Shirley, I would just like to say welcome, and also sorry that you have had to join this site, There are some really friendly people on this site, I joined in September after being diagnosed by my GP, then it was confirmed by a rheumy on the 14th November, it is really worrying about taking all these drugs, but i am now seeing a big improvement over the last couple of days. the drug do really out way the pain, So try and not worry, you are in good hands....Shirley xx

[Kathyfitz12]

For people who are just starting MTX - please approach it with the attititude that it is going to help you,and don't get all tense looking for a problem that probably won't arise. I, and many people I know, started taking it before I saw this site and didn't know the problems it can cause. I have now been on MTX for about 4 years and apart from a recent hiccup when I had to stop taking it due to other health problems, I have had no trouble at all and bless the day I started taking it and got my life back.

[antibes]

Hi im Monique, welcome and am also sorry that you have had to join this site but it really is so good to have somewhere to reach out and see you are not alone i i was diagnosed in october and started methotrexate and plaquenil december 1st its really scarey reading about it but dont be most people dont have side effects and cope very well . my advice would be to take it in the evening then go to bed and preferably with some food a banana or porridge also taking folic acid will reduce any side effects too and dont worry xxx