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Date: 28.02.2012
From: Jeanette

Subject: Visit to Rheumy nurse

Hi folks

Had my first visit to see the nurse at the hospital clinic today and she was very friendly and really patient with my questions.

I start on MTX on Sunday starting at 10mg for first two weeks, then going upto 15mg the following 2 weeks and after that 20mg plus folic acid for the 6 days not taking mtx.

Had a steroid injection today, which was fine when it was given but 30 seconds later oooooohhh, hopefully that will settle down later.

Been quite good the last few days can cope with the pain and it does not seem to have gone into any other joints this week. Last week it went into 3 new different joints and admit I was upset when it went into my toes, but had a cry and bounced back again.

So don't see Nurse until 2 months time and consultant in 4 months just have to arrange blood tests now at my own GP.

Just wanted to let you know my news. Take care sll x
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Date: 28.02.2012
From: Jeanette

Subject: Re: Visit to Rheumy nurse

Oh forgot to say went over my results and x-rays as well. No damage is showing on my x-rays so very happy with that and she said my result on RF test was 70 and the anti ccp was 114.
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Date: 28.02.2012
From: Colin

Subject: Re: Visit to Rheumy nurse

Hi Jeanette

gl with methotrexate , bit suprise they are upping your MTX so quick , it can cause liver problems ( alt on blood test ) but the folic acid should help a lot with it

Mtx can work realy well & hope it does for you , make sure you get the blood test done
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Date: 28.02.2012
From: Jeanette

Subject: Re: Visit to Rheumy nurse

Thanks Colin

Yes it will be going up to a high level quite quickly, the nurse said my consultant likes to do it this way, but have been given the nurses phone number if any problems and am having fortnightly blood tests. Fingers crossed all goes well.
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Date: 28.02.2012
From: Paula

Subject: Re: Visit to Rheumy nurse

Lots of luck Jeanette, that you got to see a rhumy nurse was something, that is something that does not exist in my area. The fortngihtly blood tests will only be until the levels are stable then it will be monthly. Like Colin I am surpised they are upping it so quickly too. Mind you my starting dose was 15mg so who knows. How are you feeling that there is no damage on the xrays showing. Take it easy, at least you got through the first appointment. Take care xx Ps the steroid injection the first one was intersting for me too, xx
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Date: 28.02.2012
From: Jeanette

Subject: Re: Visit to Rheumy nurse

Thanks Paula

How are you feeling now as I know you are ahead of me with the MTX has it settled down. I hope so x
Oh that is such a shame Paula that you do not have a nurse. I felt very relaxed with her and was able to ask questions that I didn't feel I could at the time with consultant appt. Yes absolutely thrilled that there is no early damage as one of my knuckles is so big and red but not swollen, everyone says it looks like I have been in a fight. I have been given the nurses number to ring if there are any problems so not too concerned if problems occur at least I won't have to wait until I see a consultant. The pain in the posterior is wearing off now lol and must admit I am able to bend my fingers a lot more now.
Take care Paula xx
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Date: 28.02.2012
From: Paula

Subject: Re: Visit to Rheumy nurse

Hi Jeanette, hi am at week 4 with the mtx and the side effects in the last few days have been bad, but you might not have any at all, my brother is on MTX on 10mg and he has had none at all. I have only seen the consultant, all she did was shove a booklet accross the desk and get on with it, the two appointments were rushed, and interrupted by the nurse, you had no privacy to ask anything. My x ray at christmas showed the damage in my hands, still there but hey, the steroid jab was great fun the first one as i have bipolar and the jabs can mess up the moods and they did, she put her hands up to it, no pun intended when i went back and then gave me another one. My brother is under the same rhumatology dept as me for three years and he has never seen a nurse eihter, we get a consultant or a registrar that is pretty much it. Take it easy jeanette, take each dose one week at a time, that is what i am doing, not thinking too far ahead, hang in there and sending you my thoughts ,xx
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Date: 29.02.2012
From: Paula - R

Subject: Re: Visit to Rheumy nurse

I was prescribed MTX by one of the doctors in the rheumy clinic (not the consultant). I've just checked my booklet and I had to take it the following way:-
Week 1 - 7.5mg
Week 2 - 10mg
Week 3 - 12.5mg
Week 4 - 15mg
To start off with I had blood test done every two weeks and then at four weekly intervals.
I saw my consultant after a few months and he increased it to 20mg, saying that it was the maintenance dose. Again I increased it weekly and was put back on to two weekly blood tests for six weeks. I've been on MTX now since June 2010 and I have just been promoted to having blood test done every 8 weeks. (My bloods test have always been OK). I haven't had any side effects at all, I know I've been very lucky.

I too can talk to the specialist nurses more than I can to the consultant, I always feel rushed when I see him, doesn't help matters when I can see him glancing at his watch while I am talking to him. My hospital runs clinics everyday and there is three specalist nurses there, also a telephone helpline to leave a message for them to ring you back, normally the same day.

Paula I don't know if anyone else as mentioned but if you are having problems with MTX you can take it by injection. This way it bypasses the stomach and any tummy problems (sickness etc) normally stops.

Hope things are getting better Jeanette, unfortunately there is no quick fix for RA, it is a waiting game, but things will get better for you.

Take Care Paula - R
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Date: 29.02.2012
From: Jeanette

Subject: Re: Visit to Rheumy nurse

Hi Paula

That made me really sad to hear the hospital does not offer this speciality for you and your brother. Maybe it may be worth mentioning to find out why they are no offering this service. My consultant was very nice but found most off the time he was studying notes and looking at xrays. I only remember him saying You have RA, what joints are you having trouble with and just examining my hands and knees. I had heels on so I guess he guessed that I was not having any problems with my feet lol. I was given a leaflet on mtx which he said the nurse would go over. The nurse was so thorough explained all the way through the pnky/purple book. Really sorry to hear all the trouble you are having Paula with the steroid and the mtx, the nurse said if I had troubles could change to the injection, maybe if you give it another couple of weeks and if no change see if they can put you on the injection.

Have to admit that today I am feeling very very well. No pain and the fatigue that I have had for a few years has just disappeared I feel like the old me, in one way it is quite cruel as it will be only short term but still comforting to know that if I become very bad there is this option again of the steroid. Take care Paula and thinking of you xxx

Hi Paula R

It is good to hear that you are n ot having any problems with the mtx I do have to say the first time I take it I will be feeling a bit apprehensive so just hope I will be one of the lucky ones with the tablets at least I know there is the other option of injections. My Nurse gave me a really good talk of her experience with RA she has been doing it for many years and she says she see's the elderly patients with all their deformities because there was no treatment for them in their day but her patients from the last few decades are not like this and says mtx is a really good drug.

But thanks for letting me know how your experience with it is.

Take care Jeanette
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Date: 29.02.2012
From: Paula

Subject: Re: Visit to Rheumy nurse

Hi our local centre does not give us the offer of seeing a nurse and asking questions, it is something they don't do, money i guess, i have asked to see the rhumy dr earlier and the answer is no, have to wait until April, maybe it is still early days, today though upset tummy again, and the pain stiffness etc is off the scale is all the fine movement stuff having problems with, as i am only just had week 4 too early to say maybe, just got to give it longer, is is supposed to take 12 weeks before you notice the benefits, so see what happens, hang in there, and hope it works out for you x
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Date: 29.02.2012
From: Jeanette

Subject: Re: Visit to Rheumy nurse

Hi Paula, some of the posts on the forums have said they have gone back to their GP when they have had problems and no nurse support like you have maybe worth a try. Do take care it is horrible to hear of someone suffering x
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Date: 29.02.2012
From: Paula

Subject: Re: Visit to Rheumy nurse

Hi Jeanette, my GP bless her is one of those when you are under a consultant it is there problem, and also this was the GP who when I first went to her at the beginning of dec with problems gave me a cream and did not investigate, last week she gave me a prescription of paracetamol and tramadol to take for the pain, Eight paracetamol tablets a day and tramadol three times a day. Most of the GP s in the practice are like that, and to be honest I cant change a lot of them in my area have closed their lists. Am having problems with my CPN over this as well, have managed to type him a letter for when i see him next week, and someone will come with me, my brother is in the same position as me, I feel more for him, and all of you than for me to be honest, he the poor thing has PA and he is in agony, he was told the mtx is not working, and they will not increase it for him, and they are trying lots of others, plus he is type 1 diabetic with other probs, so he is going through it. When I met someone at blood tests this week, a poor lady there had her mtx upped to 30mg for a type of athritis, and she has had no support at all, i guess it depends what area you are in and the trust. Lets just say my trust has been in the news lately, and we may not have two hospitals for much longer! Gps try really hard but they are not specialists and they have not got the time, I'll get there, the mtx has made me feel crap this week, hope it wears off, the injections are already off limits because of some of the other meds, they will not risk it because I am on liquid lithium. Thanks Jeanette, hang in there and a big hug to you. x
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Date: 29.02.2012
From: Jeanette

Subject: Re: Visit to Rheumy nurse

Don't know what to say Paula it seems so unfair that my trust has support in place and others do not. So all I can do do is send big healing hugs to you and your brother xx
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