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Date: 09.11.2013
From: Damian

Subject: RA Statistics and Forums

Hi,

My wife has just been diagnosed with RA at 35, and is just about to start MTX at 10mg, with progressive finger joint pain in 3 fingers over the last 2 months after having our first daughter last year. Although it seems pretty much a no-brainer to start MTX, we did try some googling and researching to find statistical probabilities of each of the MTX side-effects, and also what to expect with RA over time.

It does seem hard to find definitive, relevant statistics, despite the fact that it's a disease which must be relatively easy to track regarding disease progression, treatment effectiveness, etc.

Can anyone recommend where to start with any resources?

Many thanks,


Damian
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Date: 09.11.2013
From: Colin W

Subject: Re: RA Statistics and Forums

hi Damian

Methotrexate is a very good drug for RA , its used at 10x that dose for cancer & some of us been on the drug a long time , over 15 years myself & now with no side effects , folic acid will help with most the side effects , no one likes taking drugs but its not a option for us with RA because of the damage to our joints , they can control RA a lot better now compared to when I started & with new drugs in last ten years some people can live normal lives

in the link section above you will find National Rheumatoid Arthritis Society , Arthritis Care & Arthritis Research UK , they have lots of information on anything you will need & the first two has free help lines
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Date: 09.11.2013
From: Denise

Subject: Re: RA Statistics and Forums

Hi Damian

I guess this forum is a good a start as anywhere. This RA is a mine field cos what drugs work for one don't always work for others and there doesn't seem to be any straightforward answers. I'm not convinced that methotrexate is working for me. Been on it almost a year now and since weaning off steroids things have not been good. Will be chewing the cud with the consultant in a couple of weeks. But I think being newly diagnosed, you just have to go with the flow for the time being. You have to have tried two disease modifying drugs before you are considered for anything else.

Interesting though that this has all started since your wife had your daughter. I think it is a fact that more women get RA than men and although there are no answers to this, I have a feeling, from my own experiences, that hormones may play their part.

Be positive and good luck with the meds.
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Date: 09.11.2013
From: Chris

Subject: Re: RA Statistics and Forums

Hi Damian,
I would think it's hard to find definitive statistics because they are almost certainly bound to be misleading.
It is such a wide ranging disease (or in fact in all probability a group of diseases), that the data may be useful to say what is likely to happen to 'a' random woman (in a population), but is no use when saying what is likely to happen to you (the chance of your wife being 'average' in a wide ranging set is unlikely).
As said it is a wide ranging disease, it may only cause 'minor' discomfort to your wife, or may be more serious.
I have a female friend who has had RA for a number of years and it only effects one of her fingers, she takes MTx, and seems to have had no progression, others on this board are less lucky.

I know i appear to be being sod all help here, you want answers, the best place to find stats is probably the NICE website: http://www.nice.org.uk/ - they're the people that weigh up a drugs effects against the population.

As for MTx: the list of side effects is ghastly, i try not to read them for fear of my focus being on them. Whilst the placebo effect has a rather disparaging name, it is a medical effect nonetheless.
However i have had side effects from the drug, your wife should be taking folic acid with it, if she suffers with nausea, she should take it every day that she isn't taking the MTx, i.e. 6 days a week.

Fatigue is one of the hardest things i found to come to terms with. It's an effect of inflammation (i.e. arthritis), she'll need rest if she is suffering with it. It's mind numbing and debilitating. I have found 'mindfullness' meditation courses useful for both chronic pain and fatigue.

I do feel for you both, you are doing the right thing trying to find everything about it that you can.
All the best,
Chris
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Date: 28.11.2013
From: Damian

Subject: Re: RA Statistics and Forums

Hi Chris - thanks!

Yes, she does feel nauseous, but it seems to be not terrible... she does feel it present the day after MTX, but I don't think it is strong the entire week.

And she does feel quite bad fatigue - as well as the various flare-ups (today one ankle and one knee were particularly bad), it's tough to wake up feeling like you want to go to sleep.

I think we'll consider meditation or other management options too, so thanks for the feedback on that. I was thinking T'ai Chi might be good, although it does place pressure on the knees.

All the best,


Damian
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