Starting meds today need help

[bubblyalex]

Hi I’m starting Salazopyrin (Sulfasalazine) this morning ... I have a feeling the consultant said something about taking folic acid but I am not sure and with everything got confused yesterday. Do any of you know if it standard to start them with folic acid. I have gastritis so would like to avoid throwing up if I can. 😊

[sylvi]

Are you also taking MTX if so then yes you will be given folic acid. I am not sure about sulpha though so i can't answer your question. xxxx

[bubblyalex in reply to sylvi]

No just this one. My consultant said MXT carries an increased infection risk. I’m brand new to Dmards. Steroids and steroid injection into the knees yesterday.

[helixhelix]

I was never advised to take folic acid with sulpha. Don’t be alarmed if your pee turns bright orange - that’s normal.

[bubblyalex in reply to helixhelix]

That’s good to know 😳😀

[Hidden]

Normally folic acid is taken with methotrexate but your bloods may show your deficient it won’t do you any harm. Do take notes if any side effects. You maybe one of many who have no problems but some people have problems. Good luck don’t expect it to work straight away x

[bubblyalex in reply to Hidden]

I’ve started in earnest a diary today. Thankfully apart from the crp and iron my bloods are all ok and she has given me the enteric coated ones as well? I really liked her.

I’m in a strangely really good mood today. Am able to get up on my knees this morning without the same level of help I’ve needed so far... thinking that must be the steroid injections. Need sleep though... like us all eh🤗

[Olderguy in reply to bubblyalex]

Hi, there’s no requirement for folic with sulfasalazine, only if you take methotrexate. I was switched from meth to sulf last year. Does turn your pee bright yellow though, and apparently will stain, ...... so, steady, aim, fire!! 😀

[bubblyalex in reply to Olderguy]

😳🤣

[springcross in reply to Olderguy]

😀 Ooops, missed - Damn!

[Hidden in reply to bubblyalex]

Steroids will definitely be kicking in. As iron level is low that’s why your on folic acid. Your good mood is probably relief stress makes RA much worse. A good consultant makes all the difference. You can sleep in peace now.😴😴🥱 try and keep a note of your bloods ask when ever you get results if it’s not shared on your nhs app. Now you know you are low in iron you can help by eating lots of green veg and lots of fibre.

[Brikel in reply to bubblyalex]

I was never told to take Folic acid and I have been on Sulfasalazine for a number of years at maximum dose

I have recently come down to two twice a day

It does work. The yellow pee is about the only disadvantage

[nomoreheels]

As has been said MTX is the only DMARD that folic acid is usually taken with, unless you're anaemic, then folic acid is often prescribed as first line treatment. Did your prescription include folic acid when you had it filled for SSZ? If not then that should tell as the dose we take with MTX (5mg) isn't available to buy over the counter, if that's what you thought you needed to do, buy it separately, the otc amount is only 400mcg.

[bubblyalex in reply to nomoreheels]

Hi ... so I am severely anaemic?

[nomoreheels in reply to bubblyalex]

I’ve no idea! I don't know your levels or if you were prescribed folic acid. What were you told?

[nomoreheels in reply to bubblyalex]

Were you given a prescription for folic acid Alex?

[bubblyalex in reply to nomoreheels]

No but I had this vague feeling she spoke about it.

[nomoreheels in reply to bubblyalex]

She probably mentioned it when you were discussing MTX. As you’ve chosen not to take it in favour of SSZ you don't need folic acid, MTX is the only DMARD folic acid is prescribed to take with. But what concerns me a little is that you say apart from your CRP & iron you’re bloods are ok. As your iron level is depleted did she say to see your GP? You see your Rheumy isn't necessarily responsible for prescribing for that.

[bubblyalex in reply to nomoreheels]

I have iron infusions regularly via my GP. It’s interesting because it is quite possibly linked to the RA. They haven’t been able to find a cause for it for two years. It will be interesting to see if treatment for RA alters this now... along with the costochondritis.

I completely messed/muddled up a few things the lovely consultant said to me.

[nomoreheels in reply to bubblyalex]

I'm afraid RD can cause different types of anaemia, most commonly chronic inflammation & iron deficient. I've had severe iron deficient anaemia, treated first with ferrous fumarate (not folic acid as normal as I’m taking 30mg weekly anyway), then after repeat bloods I was fast tracked to Gastro for a colonoscopy & gastroscopy, which came back ok'ish. Have you tried Floradix? It was mentioned a few times when I posted here about my anaemia. I didn’t try it but those who had said it worked for them.

It can be muddling when you're newly diagnosed, don't worry. There's so much info to take in. I would check though, just to be sure whether your Rheumy did want you to have folic acid, for anaemia. Did you go alone to your diagnostic appointment or did someone go with you? Just thinking if someone did accompany you they may remember?

[bubblyalex in reply to nomoreheels]

The app went so much better than hoped for. I forgot to talk to her about the anaemia. The infusions have been doing their job so I imagine that may continue. I went on my own. I’ve left a message for the rheumy nurse to ask a couple go questions so I guess I can ask her.

[nomoreheels in reply to bubblyalex]

Hopefully the infusions will set you right, & once under control will mean they'll no longer be needed. My h had to have two (plus magnesium) after his heart op & has remained within values since, saying that he's not been tested for a while. Your Rheumy Nurse should be able to answer all your questions, including if you should be taking folic acid.

[Maggie_May]

I have been on Sulpha for years, never had to take folic with it. I only had to take folic while I was on mtx.

[AgedCrone]

If your Doctor wanted you to take folic acid he would’ve given you a prescription ......the dose most people take is 5 mg and you can only get that on prescription.

It is more usually prescribed you are on Methotrexate.