just diagnosed: Hi after 2 years of pain and discomfort... - NRAS

NRAS

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just diagnosed

15 Replies

Hi after 2 years of pain and discomfort have finally got a diagnosis of ra and put on suphazalazine. Will this be the wonder drug and make me feel normal again? or do I have very high and unrealistic expectations. Sorry for the negativity but just feel a bit scared by it all at the moment. any comments would be greatly appreciated

15 Replies
olive2709 profile image
olive2709

At this time of day everyone's brain works overtime we should be sleeping everything takes time try to relax easier said then done ,iam the mother of a RA suffer who was diagnosed December 15th day after her 40th birthday

I take high dose steroids that's why iam awake. I hope you are keeping you family and friends informed and learn to take help

Hobbits profile image
Hobbits in reply to olive2709

olive, lol Im awake for the same reason! :)

bingochristine profile image
bingochristine

Hi Mummystiff

I started on Sulphazaline when I was diagnosed worked well for me for over 12 years. So good luck and hope your feeling better soon

Sunflower62 profile image
Sunflower62

It's a very good drug are you taking it along side an anti inflammatory it's also good to look at the foods that trigger off your pain.

Hi,it's a fantastic drug and works really well but I was elllergic to it. Hope it works for you and start feeling better soon x

magglen profile image
magglen

Lots of people have been treated well with sulphazazine so I hope it works well for you too. However there are plenty of other things to try if it doesn't. Take courage. Things have changed dramatically for RD over these last few years. I was diagnosed ten years ago and from being virtually bed-ridden I am now up and about and walking miles every day. xx

Traceyanne profile image
Traceyanne

It's understandable that you feel scared. I was when I was diagnosed 3 years ago. Luckily the medication I was on has helped and I have been able to work and lead a relatively normal life. I hope you have the same experience as well. This site is very good and I have found people extremely supportive. Good luck.

hatshepsut profile image
hatshepsut

It's so scary when you are first diagnosed, you don't know what's ahead. This is a great place for support and advice, and it's worth looking at the NRAS website, which is full of information. They also have a freephone helpline if you want to talk things through.

I do hope the sulphazazaline works for you. I can't use it, but I have heard that it can work well. However, if it doesn't do the trick don't panic, there are many drugs which can be added in, or substituted.

Good luck and do keep in touch M x

Scottishlad profile image
Scottishlad

I was put on Sulphasalazine when I was first diagnosed. It certainly helped me but as my RD progressed I had other drugs added.

I hope it works for you, don't expect overnight changes all DMARDS tend to take a while to work and initial doses are low in case you have problems with them. The tablets will make your sweat yellow and this can cause stains on light coloured clothes. They made me more sensitive to the sun, so use a stronger Sunscreen to protect yourself.

Cecil

nomoreheels profile image
nomoreheels

Welcome mummystiff. I'm sorry you've received your diagnosis but you've come to the right place for all things RD! Without wanting to sound negative the earlier we receive a definitive diagnosis the better the prognosis. Sometimes it simply does not work that way if we put up with the aches & pains thinking it's something that will pass or our symptoms aren't recognised by our GP early enough. I was fortunate & I was only 6 weeks from the first signs to being on DMARDs, steroids, NSAID & pain relief though mine was pretty obvious textbook RD to me (though not to me I was clueless!) & was referred & on meds very quickly.

RD is a tricky disease, it can take a few different meds to find the one that controls you, there's no point denying that but many people do become controlled, myself included, though I tried different mixes & two DMARDs to settle on one & additional meds to get there. I still have blips but that's the nature of the disease. With luck on your side you'll find in a few months things become easier & a definite improvement should be seen. It's natural to wish for your sulfasalazine to be the one to work first time & hopefully it will but do be prepared, many of the meds we need to take in an effort to control us can be sluggish before they reach their potential. Although it's working you might not notice immediate changes. It's frustrating but given time you'll start to notice subtle improvements.

I don't know if you've been reading up but please do keep to the rreliable ones such as NRAS nras.org.uk or Arthitis Research arthritisresearchuk.org

We're a wealth of all things RD here, & related autoimmune diseases as some overlap, so ask away if & when anything comes to mind that isn't covered on the above websites or you prefer personal experience. :)

Hobbits profile image
Hobbits

Hello mummystiff: There is nothing wrong with being optimistic about a treatment as long as you also keep in mind that the drug also, may not, be the one for you. Sulphasalazine is tried , tested and true and works for millions of people, and others not so much. Some drugs work, then stop working. Some help a little and we need another drug to bump things up. Some drugs take a very long time to build up in our systems before they work. I hope that the Sulpha works well for you and helps you get your symptoms under control! Good Luck!

Thank you for all your replies. They have all made me feel more positive and thank you for being very welcoming and supportive

Franm profile image
Franm

Hi mummystuff

Welcome to our very elite club!! You have done the right thing coming on this site. From personal experience the people on here are wonderful and have a wealth of experience and advice to give you. I see RA as an unknown journey. Some meds work for a while, some dont work at all, some make you itch!!. I see the treatment like finding a perfume you like then go off it. I have had a diagnosis for about 12 months, but had over 3-4 years of pain and pushing medical staff to explore my 'aches and pains'!! and part of getting 'older'!! explanations. Never think you are asking a 'silly' question on here, thats what we are here for. Finally the support of friends and family is the most important thing and dont forget everyone on here will have gone through the excrutiating pain of a flare up, the not sleeping and feeling of frustration. When that happens talk about it, come on here, theres always someone awake and logged on, and we always get back to you even if its just to say we understand and have been through what you are going through.

Keep smiling xx

johnjohn profile image
johnjohn

It was for me I Been great on it ,but a word of warning do not stop taking this even when when you feel better there s every chance you may have to take this for the rest of your life. I was on it 16 years then started to get stomachs issues and stopped ...no told me their was an entic coated version of it !

I'm back on it now not working now both knees are now affected never had a problem before been almost bed ridden for 3 months back to the reumy Thursday hopefully try something else

So good luck with hope it helps you as much as it did me but like I said before stick with it even if you feel fine RA will most likely always be lurking around waiting for its chance

sheltielife profile image
sheltielife

Hi, Well, it certainly made a huge difference to me. However, like people have said it does take a while to benefit from the full effects of it. My rheumatologist said that RA can take 80% of your energy levels apart from the pain and stiffness. I also had a bowel problem over growth of bacteria, which I have since found out is related to RA and not only did it help my energy levels and pain but I no longer have my bowel problems either. I believe it's a drug that they use for IBD not IBS so that's why it helped my bowel problems as well. So, good luck I hope it suits you. I have to have regular blood tests to check any damage to other organs my rheumatologist said this I am not sure what but up to now I am fine.

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