Comments on: About RA

By: pollyannapenguin

pollyannapenguin — Wed, 31 Mar 2010 12:44:53 +0000

Hi Nadia, Thanks for your comment. I’m always badgering people to put up their sources when they say things like ’75% of people with RA always have a mild version’ and now I’m guilty myself! Oops. I thought it might be the NRAS site but I can’t see it on there, so it might also be a book I’ve got at home. I’ll try to remember to pull it out when I get home later and see if it’s in there! I would GUESS, and this is a guess based on a small amount of experience with my consultant, that anyone showing little swelling and very little joint damage would be classed as mild, regardless of pain levels, fatigue etc.

Actually there is a very good description of what’s officially mild, moderate or severe here – about half way down the page. http://www.uptodate.com/patients/content/topic.do?topicKey=~GkGXu1_1nD_nbN

By: Nadia

Nadia — Wed, 31 Mar 2010 12:10:31 +0000

Hey there, loving your blog – nice to have a UK perspective!
Just read this page and I found what you say here interesting: “Apparently 75% of people with RA always have a ‘mild’ version”. Where did you get that figure, because Im recently diagnosed and my symptoms seem mild to me, so I am curious to know what doctors perceive as ‘mild’.

By: Clare

Clare — Thu, 19 Mar 2009 15:28:09 +0000

I guess I am very lucky – my pain is not as horendous as most; I get bad nights and wake up stiff and still tired but my real reason for writing this is a HUGE warning: DO NOT TAKE NSAIDS. I was on methotrexate and NSAIDS for about five years until a year ago when the latter finally exploded an ulcer and I nearly died. I had a mild kind of upset stomach for a week and then all hell was let loose and I ended up comatose in our local hospital – intensive care for ten days and when I finally came to I was told what had happened, all brought about by NSAIDS. My poor family. So please pass this word around.

By: pollyannapenguin

pollyannapenguin — Sat, 07 Mar 2009 08:33:28 +0000

Heavens, have I really been blogging for nearly a year? It’s whizzed past!

Joysan, sounds like you and I think alike! ;o) I hear your frustration with the “mild (so they tell me) RA” – been there! I’m glad to hear things have got a lot better for you; they have for me too; if only I could learn to pace myself with my new levels of energy (or lack of it).

I envy you your doctor who listens, I must say! Many of us could do with one of those. Any chance you can clone him?

Penguin

By: Joysan

Joysan — Sat, 07 Mar 2009 00:44:25 +0000

It’s almost 1 year later from orig post. Wonder if anyone will see this? Anyhow, I have mild (so they tell me) RA and have been under treatment for 3 years. It’s getting a LOT better because I’m proactive. Am only seeing my rheumatologist every 6 months now! Was so much better that I asked about reducing the Methotrexate from 8 pills once a week back to 6. He said to try it, but go back SLOWLY and not to go less than 6 pills without seeing him first.
I went down to 7 and in about 2 weeks my elbow started to have a twitch of pain, so I stopped at 7. I exercise at CURVES every day, walking uphill to the “gym” and walking home, I’m having massage and acupuncture regularly, neither of which are covered by Medicare (USA), so don’t know how much longer I’ll be able to do that because of the economy but believe me, all of this has helped so very much. When I started CURVES, I could not touch the top of my head because my elbows were so bad. Now I don’t even have to think about taking my pulse rate under my chin. I even had my earlobes re-pierced last month, since they had grown back together since I couldn’t put in earrings. I’m 79 years old and this hit me bad about 3 years ago. The barometric pressure and weather seem to have a serious effect on my joints, also. I’m tired a lot and still having to learn to pace myself. Anyhow, do NOT go off your medication without talking to your doctor. Mine is wonderful…he listens. Stay as active as you possibly can.

By: pollyannapenguin

pollyannapenguin — Tue, 29 Jul 2008 08:35:13 +0000

Hi Judi,

Osteo and rheumatoid are very different in symptoms and effects and believe me, the docs very rarely make the mistake that way round, though they might sometimes tell someone they have osteo to start with and then find it’s rheumatoid.

Many people have ‘serionegative RA’ which means that they have all the symptoms but negative blood tests. I’m lucky in that I’m seriopositive so it’s clearcut for me.

Don’t just come off your meds without having a serious discussion with your doctor – you might be fine for six months or a year and be absolutely delighted, only to find you have a huge flare after that and with no protection from meds it could do a LOT of damage.

Plenty of people will tell you all sorts of diets work and throw your meds away and try them, but the problem is that some diets work for some people – you need to investigate and experiment carefully to see what, if any, work for you – and do it while you’re still on your meds!!

Good luck!

By: Judi

Judi — Tue, 29 Jul 2008 05:00:04 +0000

I have been treated for the past 10 years for R.A.with Methotrexate and Hydrochloroquine but all of my blood tests have come back normal every time. Rfactor and the CRP and ESR tests are all normal and I am beginning to wonder if I really have RA or if something else is causing my joint pains. I wonder if it could be osteo. I am thinking about going off my meds. Have any of you gone off of your meds. and found out that you indeed do not have R.A.? Thanks for your input. Judi