New to all this: Hi everyone, Im new here and also new... - NRAS

NRAS

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zodiac01 profile image
17 Replies

Hi everyone, Im new here and also new to RA im 51 and i was diagnosed in April, for me it came on very suddenly almost over night but i think i have been lucky to be diagnosed and to have started treatment so quickly. I am a self employed builder and during March i started to notice that my knees were getting tender and stiff, it was getting worse for a couple of weeks then one night i went to bed and the next day i couldnt get up, my knees were locked and my ankles and the balls of my feet were so tender i couldnt bare to touch them on the floor, i spoke to my GP she gave me some Naproxen and some codine which made me feel really sick. I got some blood tests done the GP said she suspected a virus of some sort!, while i was waiting for the results i was stuck in bed for 2 weeks and by now my shoulders, wrists and fingers were as bad as my feet, i was now taking Tramadol and paracetamol but i just couldnt get into any position anywhere  that was pain free, I hadnt even considered RA as an option at this point but i knew something was very wrong. The Gp called and said my tests showed my anti-CCp as way high and she had refered me to the rhumatologist, I got seen on a cancellation on 18th April where he confirmed that i had got seropositive RA :-( . He gave me  Depo-Medrone and prescribed prednisolone and Methotrexate, Im just starting into my 3rd week of treatment, took the 3rd dose of MTX 6 tablets yesterday working up to 8 and im now reducing the steroids to 3 a day for two weeks after taking 4 a day for the last 2 weeks, Since receiving the depo i have had almost complete relief from the pain and restricted movement although it seems that achy bits are starting to come back slowly now each day, im not sure if this will get better as the MTX increases or get worse as the steroid decreases. I have been helped very quickly and im grateful for that but i havent been able to work for the last 6 weeks and while im waiting to see what i end up with in terms of pain and ability the days are passing sooo slowly.

Its a lot to take on, ive read lots on here i know it could be worse, but it certainly is going to change the way we live from  now on !

Martin

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17 Replies
bella-bailey profile image
bella-bailey

Helo zodiac Martin it's a shame you have had to join this group but there are lovely people on here who can give you some advice and we are all good listeners x

Welcome to this site Martin!! This group is very friendly with helpful advice on how to manage the difficulties living with RA.

You were very lucky to get a quick diagnosis and get started on the meds right away. My RA came on slowly and only presented in the balls of my feet. I went to 4 different doctors and none of them knew why my feet were painful and deformed. It took about 18 months for me to finally get diagnosed and start the RA meds after my first symptoms appeared.

I wish you well

Sue

sylvi profile image
sylvi

Sorry to hear you have joined our band of merry raers Marting and to say yours came on suddenly is an understatement you poor thing to be struck down so suddenly like that. I wonder though if you had symptons and not realised it darling. I hope your new regemen of treatment soon gets nyou back on your feet.xxxx

minka profile image
minka in reply to sylvi

ive asked him to get his blood checked for tb syl that is to bloody fast like i was the longer its left the more damage the body has to fix

look how long i whent

wishbone profile image
wishbone

Hello Martin,  Sorry to hear you've had to join this group, but welcome all the same. Us blokes are in the minority here, which is no bad thing as in general as I find the fairer sex to be a bit more caring and understanding when you're going through a rough patch, especially the motley crew on here. ;-) I think you've made a wise move joining this forum as you will get some good  advice and support when needed. I've been here about 2 years but probably should have joined earlier instead of doing the man thing of thinking everything will be ok if I just stick my head in the sand for a few years, at least that's how  most menfolk behave in my neck of the woods. Not the right thing to do if you're experiencing problems that's for sure. 

I got diagnosed around the same age as you - I'm 65. This crappy disease crept up on me more slowly though, then hit me with bit of a bang. I was on methotrexate for the first 9 years and it worked fine with little in the way of side effects.  It can take some time (approx 10 weeks with me) to kick in though. Hope it works ok for you and you get some sort of normality back in your life.

nomoreheels profile image
nomoreheels

Hiya Martin & welcome. Like you I was diagnosed promptly, seropositive back in 2008, when aged 48 though I had nowhere near as many joints affected, only my feet at that time so to say the least that must have been so difficult for you. Pleased though that your whilst your GP was initially unsure just what was going on the correct bloods were tested, you were referred & given a cancellation to be diagnosed.

I'm pretty confident that my early diagnosis has stood me in good stead though & hope the same for you. MTX was my second DMARD & I've had increases & reductions in dose in 7 years & only in the last few weeks needed another adding, sulfasalazine, though I am taking a low dose steroid which also keeps my inflammation at bay. I hope you respond well to MTX, give it another 10 weeks & you should know. Once you do things won't be quite so difficult & you should be able to work out how much (or not) you'll be able to manage, though do take things easy to begin with. Anything's better than how things were relatively recently & your Rheumy will be keeping a close eye on how you're reacting to your treatment.

We're a wealth of info between us so whatever you need help with someone's bound to be able to give their experience so don't be shy, there's little we've not discussed. Even though it's predominantly females we do have other males here some of whom I'm sure will be along to introduce themselves & be glad to have you aboard! :)

Snooze-Master profile image
Snooze-Master

I was a bricklayer, I now drive a van delivering drugs for the NHS (no, I can't give anyone any lol). Welcome to this site, I've found it invaluable and the people are charming.

minka profile image
minka

hi martin have they check ya for TB and it dosnt need to be coughing   mine was check cos mine hit fast Ad ges what tb was showing up my body ached all over one min it was this next min it was that i could not controle where the bugger was hitting

im not trying to alarm u but they have to check SPECIFICALY FOR THIS IN YOUR BLOOD AT A CERTAIN TEMPRATURE im not a grate beliver in this came on so fast in a lot of the parts of your body.

regards john

Matilda7 profile image
Matilda7

Hi Martin, welcome to the forum! My RA came on very suddenly too and I spent 3 weeks in hospital while they made a diagnosis and tried to find the right drugs to stabilise me. That was almost 40 years ago and for a lot of that time I've been in remission and not on any drugs. 

However I have made lots of lifestyle changes and that might be worth considering. Many of us here have changed our diets (eg cutting out meat, wheat, sugar) and try to keep as fit and healthy as possible by doing gentle exercise like swimming. It all helps to keep on top of the disease process.

Go well!

Ali_H profile image
Ali_H

Hi Martin and welcome

RA and building... That's a tough one. The meds will definitely take a couple of months to get up to speed. Most of us here try to help our systems by keeping a cleanish diet as sugars and processed food can encourage inflammation. Turmeric is a good supplement or spice to add to soups, stews etc as it helps reduce inflamation. 

I hope things improve for you and you get back to some kind of work soon.

All the best

Ali

smithfield profile image
smithfield in reply to Ali_H

Hi Ali I take the Turmeric in tablet form ( but check with GP first in case it works against any prescribed medication) 

I think using at a flavouring does not give you enough to be an anti-inflammatory.x

Jacki08 profile image
Jacki08

Hi Martin--- bit  of a shock getting a diagnosis  of something you probably  didn't  know  much about until it hit you like a ton of bricks. I was diagnosed  in sept 2014 after 4.5 years of strange pains and symptoms- to me  it was quite a relief to start on the meds. .As others have  said- it can take a while for them to work , some quicker than others. In spite of  a few side effects I feel better than I ever thought possible   

It is scary-- but the thing that kept me going was the advice given on here- and believe  you me , I asked some questions. ☺

smithfield profile image
smithfield

Hi Martin Just to say welcome from one of the Motley Crew on here.

A lot has been said already but I hope you find this group as helpful and friendly as I have.

I have only been a member for a few months. I think I rumbled on for a while with confused symptoms as I have SLE as well and their are similarities. One thing they have in common they b....y

hurt.

All the best.

P-jay profile image
P-jay

Hi Martin. Welcome! This is such a useful and friendly group. My RA came on over a couple of weeks. I was used to dashing around on my high heels looking fabulous 😀then one day had a sore knee then the next day the other one joined in and within a week I just couldn't walk and was crying with the pain. That was 2.5 years ago and I was diagnosed within days of going to my GP, saw a rheumatologist and started treatment and thank God I've not had another really bad flare up since even though I was off work for a while I'm back full time and try to keep going. I'm still fabulous just not wearing high heels!

This does mean lots of adjustments and getting your head round that takes time but chin up.   Keep asking your rheumatology team questions as no question is a silly one. Let them know how you are tolerating the medicines and feel free to come on here and ask questions or have a moan. Take care of yourself and be patient with yourself as you adjust and the treatment starts to help.

CloudTreeDrive13 profile image
CloudTreeDrive13

Hi ya Martin and welcome. It does come as quite a shock i know. It did me some 30 years ago. Your job is very physical and you may well have to change this. You were fortunate for your R A to be picked up so quickly. Good luck to the future. Lesley.

Hello there. Really sorry for you 😞 your illness came on pretty quick just like my hubby's did. He only started feeling rubbish in the New Year. Your blog struck a chord with me as very similar experience to hubby. We also got a cancellation appt thankfully. Our downfall was not receiving his prescription for a further 3 weeks and he was in such pain. Don't hang about being polite like we did. Shout loud and clear. No joy then ring PALS. I hope you improve asap. All the best. Sue 😊

zodiac01 profile image
zodiac01

Thank you everyone for your replies and support, I have found lots of information looking through the posts on here, I'm feeling so much better than I was 4 weeks ago when I didn't think I would ever be out of pain again! I'm taking my 4 th dose of mtx tomorrow and next week I'm hoping to be able to go back to work for a day or two, I'm managing without the tramadol for now which makes me feel better in itself, I am starting to get achy knees sometimes but I wonder if it's the transition between steroids which I'm reducing ( on 3 a day now was 4 ) and the mtx which I'm increasing take 7 tomorrow started on 4, I suppose until I'm finished the steroids I know for sure what's doing what.

Martin

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