progress update

katat1

Hello all,
I have not been posting recently but I have been reading your posts almost daily and hope you are all doing ok.

I thought I would post an update on my progress in the hope it can be an encouragement to others, especially newly diagnosed RA people as it has been less than a year since I was diagnosed and I can remember all to well the despair and frustration I felt at the beginning of all this.

I was diagnosed in April this year with RA after going back and forth to my GP and being fobbed off with increasingly strong pain killers despite the pain and stiffness getting rapidly worse over the course of a couple of months. Eventually I made a fuss and was given a referral to a rheumatologist.

I was very lucky and was seen by an excellent rheumy in London who treated me like a person not a disease. Her approach was to hit the RA hard from the outset with the aim of bringing it under control and prevent joint damage occurring. (X rays showed that the rapid onset and quick diagnosis indicated that there was no erosion of joints).

I was given methotrexate (gradually increasing from 5mg to 25mg) and hydroxychloroquine (plaquenil) to start immediately and a general cortisone jab to help reduce pain while the drugs kicked in as they take several months to have an effect (patience required by the bucketful!)

Blood tests every 2 weeks to monitor any side effects made sure that nothing was left to chance and the only blip was once when my ESR went very high and I stopped the metho for 2 weeks and it went back down again so I resumed the metho at a lower dose, gradually increasing it again over several weeks afterwards. I learned (the hard way!) to pace myself - resting when necessary and exercising when I could - mainly gentle walking and cycling, nothing too strenuous but enough to make sure I stayed mobile.

7 Months later and I am feeling near normal apart from the odd twinge, not in the joints but more like a bit of sciatica. I have just come back from seeing the rheumy after latest blood tests. All the tests show that levels are within the normal ranges in the little book they give you, including ALT, ESR and CRP which is less than 2. Rheumy also told me that 'disease activity is very low'.

I am currently still taking the hydroxy and 15mg metho per week plus folic acid. The only side effects I have had has been slight thinning of my hair. I will now have blood tests once a month and see the rheumy again in Feb 2010.

I feel optimistic that things will continue to go well. 7 months ago I could never have imagined how different I would feel by now as I had read so much information that made me think it was not possible.

I am writing this because I want to let others know that huge improvement is possible and to encourage those who feel the despair that I did at the beginning so they do not think, as I did, that our future is going to be one of constant pain and increasing debilitation.

I have been lucky - quick diagnosis, a great rheumatologist, drugs that worked without too much experimentation, negligable side effects and access to a fantastic website here for information.

I am very grateful to all who have posted encouragement, support and advice, all of which have helped me to stay positive and I hope every single one of you is as lucky as I have been.

Very best wishes to you all and I will keep reading the posts as I am sure there is more I can learn.

Kat
xxx

wibberley

Hi Kat,

That was lovely to read, so interesting and rather timely for me as I'm still absorbing the mtx leaflet my rhemy sent to me. The leaflet sets things out in black and white....and scared the wits out of me but then I read of all the positive things that come with it from people like yourself and realise that the good bits weigh out the bad....for most, and I'd be very stupid not to try it.

Instead of covering my ears next time he mentions mtx, I'll listen to what he has to say!

So pleased to hear it has worked well for you and fingers crossed I'll gain as much from it as you have!

sharmaine

Hi Kat

It's always good to hear that someone is feeling better!

Long may it continue! Thank goodness you've got an understanding rhemy.

Sharmaine

katat1

Hi Wibberley,
Like you I was really scared when I read the mtx leaflet at the beginning and debated whether or not to take it. I had a good talk with the rheumy and she explained that the doses given for RA were low compared to other illnesses it is used for and that often RA patients do not experience severe side effects. I said I was worried about the hair loss (vain as I am!) and she said I might notice more of it in my hair brush than normal but it was very unlikely that anyone else would notice.
I have read on here that some folks suffer nausea when taking mtx orally but felt better with the injections, though in my case taking it orally was no problem and hopefully you will be the same as me.
I am glad reading my previous post has helped you come to terms with the idea of taking mtx and I agree with you that the good bits outweigh the bad!
I would rather take a drug like mtx than live with worsening RA!

Good luck and stay positive - it really helps!

xxx

Hi Sharmaine

Yes, I was really lucky compared to some of the stories I read on here! It is sad that NHS treatment depends so much on the luck of the draw when it comes to doctors. :?

I hope others are encouraged by my post and will be hopeful of an equally good outcome. All things are possible!

xxx

jackie1955

Nice to hear of your successful treatment, I've been on MTX since April, now on 20mg, but still get pain and stiffness not to mentiion the damned tiredness which comes on so suddenly!

Long may your improved health continue

Jackie x

woodbon

I am glad that everything is going well for you. Its so nice to read such a positive post and it much be good for anyone who reads it and finds they are just about to have medication for RA.

I hope that you contiue to go well for you, love Sue xxx