sulfasalazine blood tests

[Brychni]

I've got my prescription for the above and although I feel like sh** today I feel better than I did a couple of weeks ago when I had a lot of pain at night especially - seems to have gone. So now I am not sure if I should take it or not. Also - was I imagining it when the rheumatology nurse said I need blood tests EVERY WEEK?? Anyone?

[Pinkypie2018]

When I started sulfasalazine I had blood tests every two weeks for 10 weeks.

[springcross]

I am starting Sulf tomorrow and had a converation with my Rheumy nurse on Wednesday regarding dosage (I also had a conversation with my Rheumy Doc last Friday and couldn't understand when he was explaining the dosage as he's foreign - very nice but hard to understand over the phone). The nurse told me that it's every two weeks for three months and I also looked it up and it said the same. I have booked mine for two weeks today.

[Brychni in reply to springcross]

thank you - every 2 weeks seems a bit more manageable!

[Hidden]

Oh definitely take your new meds. It’s a sneaky disease just when you think your on top it jumps back with a vengeance. You were suffering and it maybe a flare so comes and goes the aim is make it stay away. You have also been suffering with fatigue according to your posts a sign of active disease.

[Summerrain14]

Initially it is blood tests every two weeks from the date your start taking your Sulphasalzine. Mine went to every month after two months and then reduced to every three months after several months of monthly blood tests x

[stbernhard]

Hi Brychni, in my experience it was very helpful for the long term to take the drugs the rheumatology prescribed in the right dosage at the right time. RA can be fickle. You can feel better one day and the next it hits you like a pile of bricks. If you have been diagnosed with RA you must think long term. Your immune system is not working properly and if you don't manage your condition, damage to your body can be severe. Take good care.

[Brychni in reply to stbernhard]

It's so strange; came back from the shop today and the joints in my little finger were hurting from inside, to bend and to the touch. About 3 hours later it was fine! Last night it was in my hand, this morning my knees etc etc... it just seems to move around but today my feet have been OK.

Tried to explain what the creeping wrist pain feels like to my husband and the best I could come up with was toothache!

[stbernhard in reply to Brychni]

At the beginning pain was all over the place. For weeks I could not hold a knife or fork. Then it was the shoulders etc. No rhyme or reason. Have you visited the NRAS website?

There is a lot to learn about RA and NRAS is probably the best place to get the information and help. They have peer to peer phone support as well. Take care.

[Brychni in reply to stbernhard]

Hi stbernhard - I think I've read everything! 😂 At rest it's mostly twinges and dull aching but I've had a few episodes much worse keeping me up at night, but only 3 or 4 times in various joints. the worst was my left shoulder, I thought I was having a heart attack, happened twice but it responded really well to naproxen and eventually I got to sleep. a couple of other times it's been my left hand and the last 2 nights my feet, but that came and went and it didn't really keep me up. I've noticed that typing and using my laptop generally is beginning to be painful sometimes and driving. again, not enough to stop me doing anything but creeping and getting slightly more painful each time.

for a long time I have a had a very nasty pain on the outside of my left knee which is very painful I bend it. It feels like it's in the muscle but in fact it's in the bone there. It got so bad I was about to report it but now it's gone. Instead I have sporadic pains behind both knee caps, just above and to the sides of both knees and occasionally behind my knees feels 'fat' - I suppose that is swelling from inside. anyway, sorry to waffle but if I were to tell all this to rheumatology I think they would switch off!! It just all sounds so vague.

[Soreknees2016]

I recently started on sulfa 3 months after stopping mtx, and according to the pharmacist who rang me to say what rheumy had prescribed, I had to have a blood test before starting as a baseline measure, one two weeks later and the next one is six weeks after that. After that, all being well, I should have repeat bloods every three months. It may be that the frequency of bloods is dependant on what other meds you are on (I am only on sulfa now for my PsA) or any other conditions you might have, so might be a good idea to contact rheumy or nurse again for clarification, as weekly blood tests does seem excessive.

[Brychni in reply to Soreknees2016]

It turns out the GP was supposed to call me back last week and give me instructions and he didn't so I have a legitimate excuse for not starting the sulfasalazine tablets yet 🤨 I have to call tomorrow to hear what the results of the first blood test were although the receptionist did say it looked as though he was happy for me to start - but I still have to talk with him first.