first appointment : Hi I had my first appt with the... - NRAS

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first appointment

LIZMAC10 profile image
9 Replies

Hi I had my first appt with the rheumatologist on Thurs and I was diagnosed as having RAZR in both my knees and feet and ankles!! And starting in my hands . I have to wait now for 10 days to see my own Doctor , he has to wait and see what the results of my x - rays arand bloods that I got taken .

He said he was going to start me on Sulfasalazine! I really don't know what to expect from this ? I have read so many things about it ..It helps some and not others.

I am 53 and I wonder how long I will be able to keep at my job? I'm a support worker and I love my job,a I also look after my grandson 3 days a week . So as you can imagine I have a busy life . But I wouldn't have it any other way .

And I hope to keep doing so .😊

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nomoreheels profile image
nomoreheels

Hiya LIZMAC10. I'm pleased you now have a definitive diagnosis, but unsure what RAZR is I'm afraid. The wait to see your doctor is common, these things take time on the NHS I'm afraid! So is it expected your GP will prescribe the SSZ, with a follow up appointment to see your Rheumy again once you're established on it? It is not a DMARD I've had, mine have been HCQ & MTX but I'm sure someone will be along soon to share their experience of it. In the meantime maybe a read of this will help you understand the importance of DMARDs & their place in treating us. nras.org.uk/getting-establi....

We all react differently to drugs so I would think it's impossible for anyone to know, but I think you've an idea how it is by saying you've read how it helps some but not others, that's true of most everything but it's a start of treatment at least!

Don't think this is the end, although I know it probably feels that way just now not even on your meds yet but this should be the worst you'll be, once your meds start doing their job you should see some improvement & with that an indication of how much you can & can't do. But, a little patience is required, there is no quick fix, save for steroids or a steroid injection but unfortunately they don't treat the disease but do work on inflammation so can give short term relief usually pretty quickly. If he deems it necessary your Rheumy will probably suggest this for you to ease your pain until the SSZ reaches it's potential. Pacing yourself will aid your meds to do their best too so taking it easy when your body tells you will stand you in good stead, particularly important if you've normally a very busy life. You'll learn to understand the signs!

I hope this helps & someone who has experience of taking SSZ replies. :)

LIZMAC10 profile image
LIZMAC10 in reply to nomoreheels

That should have said RA....... not RAZR . .sorry x

LIZMAC10 profile image
LIZMAC10 in reply to nomoreheels

Hi thanks for your reply , I guess I'm just worrying about things to much . Sitting thinking the worst, I should be more thankfull as there are a lot of people out there a LOT worse of than me . Thanks again x

nomoreheels profile image
nomoreheels in reply to LIZMAC10

You're welcome. Just take it in baby steps & as long as you're prepared not to see results for a little while you'll be fine. It's entirely natural & it must be a facer for you, it is for all of us in the beginning but there are lots of treatments available nowadays so don't worry. Do keep in mind as well that forums like this see all manner of stages but often it's those struggling who tend to use them more. I don't think helix will mind me saying but we both do well on our mixes & I certainly choose to be here as a connection to others with the disease. I ask the odd question if something crops up I've not experienced before but generally I'm doing well! :)

helixhelix profile image
helixhelix

Try not to anticipate the worst - for many people the meds work brilliantly and in a few months time you'll wonder what you were worrying about, as you'll be pretty much back to normal. That's assuming that RAZR is just a typo for RA?

Unfortunately the only way to work out which drug will work best for you is trial and error. As yet there's no test that will tell the docs which one to try first. But I take Sulfa and it works fine for me with no side effects now. The first few months were a bit wobbly, as gave me a rather lively stomach, but fine now.

LIZMAC10 profile image
LIZMAC10

Thanks for taking the time to get back to me, your right once I'm on my meds I'll be like a new 😀x

The way I think about inflammatory arthritis (which is correct, I believe) is that it isn't really located in any particular joint, it's an autoimmune disease i.e. affects the whole body. It can affect different joints at different times but the good news is that joints can go back to normal as long as no damage is done. And one of the main aims of the drugs is to protect joints from damage.

Sulfasalazine didn't do much for me, but in time I found the right drugs and I usually feel pretty good these days. Don't fear the worst - this is probably the best time ever to get this rotten disease because treatment options are increasing all the time. Lots of people with inflammatory arthritis lead full lives but often the early days are the hardest. So hang on in there and stay positive! And I hope Sulfasalazine works well for you.

Beverley-NRAS profile image
Beverley-NRAS

Hi LIZMAC10,

If you do have any concerns or worries, please feel free to call the helpline and have a chat. We can offer information on RA, the drugs used, work, everyday living and many other aspects of RA. You can call us on:

0800 298 7650 Monday - Friday 9.30am -4.30pm

Regards

Beverley (NRAS Helpline)

LIZMAC10 profile image
LIZMAC10 in reply to Beverley-NRAS

Thanks Beverly I think I might just do that phone up for some advice . Thanks again 😊

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