Early Remission!: Thought I'd share some recent good... - NRAS

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Early Remission!

philfen profile image
20 Replies

Thought I'd share some recent good news.

Thanks to everyone for their support when I first posted, I was pretty scared at the time, I suppose we all have the same reaction at first .To go from having a pretty active life to then being in pain from just picking the kettle up is a difficult thing to deal with ( I know I didn't do a very good job of coping).

~I was diagnosed with RA earlier this year, I was surprised to be told last week I'm in remission. I still have join pain. but nothing I cant deal with, and haven't needed any Naproxen for a while, only the occasional Paracetamol or Nurofen. a great improvement from the 4xdaily Naproxen I was taking. My mornings are OK as well, nothing to bad.

I've only been on Sulfasalazine (plus one steroid injection) since May, 3xdaily, had to reduce from 4xdaily due to dizziness and the strangest of feelings (kind off like being disconnected from my surroundings).

I know my original blood test results (April) as I got them private: CRP 7 : Anti-CCP >500 : RF 55 : and my latest results (October): CRP 3 : Anti-CCP 231 .I don't know what the intervening results where as my GP and Hospital don't communicate very well.

I wrongly assumed that my anti-CCP results where related to disease activity, but my consultant said they will always be high, more of a diagnoses tool than anything else. Apparently The CRP results are used to monitor disease activity?

Wishing everyone well, and hope that I'm in remission for a good while longer.

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philfen profile image
philfen
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20 Replies
philfen profile image
philfen

P.S. I am still having bouts of tiredness and fatigue, I could sleep for England some days, lol. Consultant says it could the Tablets or maybe the RA disease, my thyroid has been tested, but waiting for results from a vitamin D test....

sylvi profile image
sylvi in reply tophilfen

I am always fatigue Philfen by lunchtime i am cream crackered and i struggle to do much in the afternoon,so anything i have to do has to be done in the morning.xxxx

philfen profile image
philfen in reply tosylvi

Its hard to deal with at times Sylvi, I'm fortunate to be able to do a days works before the battery's empty. My Friday nights are now a blissful evening on the sofa, how times change :)

sylvi profile image
sylvi in reply tophilfen

Your lucky, i am trying to put up decorations and all i have managed to do is put lights on one tree and now i have had to stop.xx

philfen profile image
philfen in reply tosylvi

I'm sure it will be looking proper festive in good time, good luck Sylvi.

Eiram50 profile image
Eiram50 in reply tophilfen

Fantastic news and long may it continue x

Marie

Downtime profile image
Downtime

Really good to hear!

Ali_H profile image
Ali_H

Great news, thanks for sharing and here’s hoping these better time continue for you.

Ali

sylvi profile image
sylvi

My bloods always are low despite the pain. The bloods never show anything abnormal,yet here i am in pain from the ra. xx

helixhelix profile image
helixhelix

That's great news, and so good to hear. Also must make you feel that you did absolutely the right thing in getting a private appointment to start with so you got treatment as early as possible. Who knows, maybe you'll be able to come off all drugs eventually.

However, the medical definition of remission can be very different from what the patient would consider to be remisssion! Especially with low CRP numbers as this can unbalance the way the scores are calculated. I have low CRP and at one point the doctor said I was in remission when it was completely obvious that joints on one hand were bright red, hot and swollen. Not what I call remission! I say this just to encourage you to tell your doctors how you feel if you don't think the progress is good enough.

philfen profile image
philfen in reply tohelixhelix

Thanks Helix, I'll never know if the private helped, but I don't regret a penny of the money I spent.

I was a little surprised at first, I did look up what the medical definition for RA reemission is (bit of a grey area to say the least) but I have improved a great deal, I am able to lead a fairly normal life at the moment, if things change I will be the first to mention it.

Also I've also been transferred from Hospital to a local centre to be monitored as my condition is stable. I will still see a rheumatologist? ( I'll update you when I see them) and have blood tests done every 3 months, I can be referred back if my condition worsens.

Fra22-57 profile image
Fra22-57

Great for you.This doesn't mean the next appointment it will still be the same though. I was gob smacked when heard my rheumy dictating letter to my GP long time ago that I was in remission. Made me angry and puzzled as joints still swollen and in agony etc.Low and be hold next check up he was dictating latter saying I am sorry this lovely lady has extreme RA etc.

helixhelix is right ...report any changes

philfen profile image
philfen in reply toFra22-57

Totally agree Fra22, I'm happy to be stable at the moment, but this is a life long thing, so my fingers are crossed that I can ride this wave for a good while longer.

Fra22-57 profile image
Fra22-57 in reply tophilfen

Stay well😊

Mhairi54 profile image
Mhairi54

Great to hear! Always good to hear good news on here. Thank you for sharing!

Apparently I'm in remission too... I'm like, really?! Doesn't feel like it sometimes

philfen profile image
philfen in reply toMhairi54

Thanks Mhari54, just read your post on underlying anxiety, it does resonate with me as well, I'll do some Google searching on in later.....

Gnarli profile image
Gnarli

That's really good news and long may it continue! Thank you so much for sharing, it gives us all a boost. Hugs

Jan

Cherub198889 profile image
Cherub198889

I'm glad to hear you are getting better.

As for your question about your CRP, the CRP measures the inflammation in your blood. Having said that, different labs use different calculations to find what is the "normal" number. I would suggest you find out the CRP reference range that your lab uses.

My lab is called Lifelabs and a CRP <1 is the number that I aim for.

philfen profile image
philfen in reply toCherub198889

Thanks for the reply.

The 2 labs I've got tests from NHS and Nuffield both show a normal range of 0.1 to 5 mg/l

Never been easy to define Normal'

Rosiek90 profile image
Rosiek90

Congratulations! It’s refreshing to her some positive news on here 🤗

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