Hello. I just want to sound you all out as I am fairly new to RA and in pain almost every day. I am seeing my nurse to have my bloods done next week ( on my 8th week of Sulfasalazine) but last time I saw her she seemed to get me in and out very fast. I had a bad rash and pain in my neck and shoulder as well as the usual pain in my hands and wrists but she just said " sometimes it progresses". Well I know that but I expected her to check my joints as it was my first check up since starting the Sulfa. How will they know if the drug is working (I don't think it can be yet as the pain is still there - will it still be there even if the Sulfa halts joint damage?) My RA is seronegative so how can they tell if I'm improving if bloods don't show anything? I know it can take up to 12 weeks for the drugs to kick in but it's hard to believe I will ever feel better. Sorry to be so negative but I am really struggling at work. I don't even know if I should take my pain meds every day even if the pain is only mild (most days it's constant and the meds don't have much effect but there is the odd day when I don't feel quite as much pain) - I feel such a nuisance to my gp, consultant and nurses because I know there are people who can't even walk whereas, to look at me, you wouldn't really know anything was wrong unless I have to wear my hand splints. But the pain is just as bad as ever, worse some days, and my hands are stiff and sometimes feel numb. I am so frightened. I don't know what to say at my appointment in a way that will make them know things are as bad as I say they are when blood results may tell a different story.

HI Julie,

It's very hard to accept when you are told you have RA. The pain is like nothing else and you can still look great but your body tells a very different story. If it's a nurse at the doctors doing your bloods she may not know much about RA. The blood tests tell them how it is affecting you with RA. You may need a steroid jag to help you through if it's a bad flare. Don't be thinking you are always going to be like this because the chances are you WONT. Once the drugs get sorted out and your body starts to cope with them it's a whole different story.

Regards to the rash, this is common on Sulph, I came out in a rash when taking this too. I was on the triple therapy at the start.

My name is Lorna, when I was hit with RA 4 years ago, it was so aggressive and in 5 weeks I was bed ridden and unable to do very little at all. I could not even open the tablets I was taking, on 14 tablets a day and still in agony I remember it well. I could not get up without help or hold a cup or brush my hair, this list is endless. I had lost the use of my right arm, could not turn my head was bent over because I could not straighten and my hands were decoration ( they didn't work at all ). Every joint in my body bar my knees was affected even my head and jaws. It was a living nightmare for me.

And like you said yourself, I looked great and healthy once I was showered and organised. But I felt like I was dying on the inside I hurt so much. Point of my story is I am not like that now.

I am as good as before as long as I don't over do things, try to look forward and be positive you will get on top of this. If I can there is every chance you will too. Try to pace yourself and do only a bit at a time.

I feel for you as it is so difficult to cope with when your so low in yourself.

Sending you a big hug and a we have all been there it will get a bit easier.

Thinking about you Lorna xx

Hello Julie,

A welcome from me I have just caught up with this post. So sorry to hear that you are feeling
so low and in pain at the moment. It is a horrid thing and definatley can give you a low mood. Are you
on any anti depression tablets ? I am aware that they are not the answer but they can give you
a bit of a lift at this time. Apart from MTX , which eventually I had to come off as it up upset my
liver, they are finding it difficult to get mine in check, and this in itself certainly gives you a low mood.


I'm glad your appointment yesterday was good and informative. You will always find someone ready
to help on here so do not be afraid of posting. What may be a big worry for you someone on here
could have the answer and your big worry could be made very small.

Rose x

Hello Rose and Ellie,

You are both so right about this forum - it makes me feel very safe (if that's not a silly way of putting it) knowing that every single person in here has been through the same or similar things and, therefore, the advice is always going to be sound and worth taking on board. I wish more than anything that I didn't have to go to work while I'm feeling so low but I love what I do and pray that I will get control for my painful hands. That's where you all come in to show me that things can, and very often do, improve dramatically
Rose, I really hope that they can get you sorted very soon. I am not on any drugs for depression though I take one Amytriptiline at night to help me sleep. I get ever so tearful but try hard to pick myself but, who knows, it may be that I will need some help.
Ellie, it's good to know that you are managing well at the moment - it gives me real hope! You're right, I find that even a short rest helps me to keep going - it's a new concept to me but the tiredness, as you'll know only too well, is overwhelming.
My thanks to you both for your support.
Julie x

Hi Julie

Sorry I have only just picked up this thread. I am afraid that some nurses are not as thorough, sensitive or sympathetic as others. Your next visit may be completely different. Never feel that you are being a nuisance to your Consultant, rheummy nurse or anyone else in the clinic. You are paying their wages. That's what they are there for. I hope you get some satisfaction soon.

Sheila x