Guidance needed for a noobie.

[BelaSen]

Hi.. I have just started RA medications 3 weeks back, SSZ at 500mg twice daily, with 10mg prednisone twice everyday..

My episodes started suddenly with my right wrist then left and then both the knees within 4 days I was badly incapacitated spoke to an orthopaedic and then finally a rheumatologist who started with prednisone and after taking anti CCP test, rheumatoid arthritis test.. put me on to sulfasalazine 500 mg twice daily along with folic acid and 10mg prednisone twice daily..

Ssz was increased to 1gm daily twice, with the intention of reducing prednisone down to 7.5 MG twice a day but that could not work as I developed a mild episode just few days back

I am very new to rheumatoid arthritis and what is the lifestyle going to be like.. the kind of tests that need to be conducted regularly.. the monitoring that needs to be done and the possible side effects that I can have... I am looking at practical support for these things and advice from this community.

I am a 77 year old woman till date very healthy and active extremely conscious of my diet have been having diabetes, have two stents and blood pressure but all have been well controlled and monitored..

Please help and share your inputs with me.. it would really help me...

Thank you..

[KittyJ]

Welcome to the group BelaSen, I hope you find it helpful. NRAS have a useful website, helpline and publications you can download which may help to answer your questions but feel free to ask away here. We can’t help with medical advice but we are all living with RA and there’s a wealth of knowledge here.

nras.org.uk/help-for-you

[BelaSen in reply to KittyJ]

Thank you so much for your reply.. unfortunately i was in the hospital fro a month due to hyponatremia and other complications, hence couldn't reply.

Now i am better getting rehabilitated and my RA is not relatively less of an obstruction. I had reached 1gm twice a day and now i am at 500 mg twice again. My steroid has been stopped after a 3 month weaning off period. but now i am focused of a healthy diet.

I live in Mumbai, India and yes fortnightly i am taking blood tests monitoring my kidney and liver with CRP Serum test.

Due to the steroid the results have now started becoming more accurate and CRP is at 19.69, i am hoping for pointers to reduce it to under 5 as the parameters suggest.

Thank you so much once again for your replies, i am ever grateful.

😘👍

[KittyJ in reply to BelaSen]

You’re very welcome. 🤗

[nomoreheels]

Hiya BelaSen, welcome. Sorry you've had the diagnosis but pleased you've found us. Hopefully things will improve once the SSZ has had time to work, as a rule & in common with all DMARDs that can be around 12 weeks or so & why you've been prescribed the corticosteroid, to bridge the gap & make things a bit more comfortable meantime.

I wonder if you're not in the UK? I only ask as regimes may be different. That said you will have drug monitoring blood tests, though the frequency may differ. This is to check two things mainly, that the SSZ is doing what it should & to keep a check that it's not troubling your kidneys (it's cleared through them), liver, or causing low blood count etc. Generally though with a new DMARD fortnightly testing is usual for the first 6 weeks or so & if all's well this can change to monthly or a little longer, depending on your Rheumy's preference.

Side effects can differ from person to person, you may not even have any. I find it's best to start a med not expecting them but if you do they're often tolerable. If not then a talk with your Rheumy often helps & if necessary there are options for him/her to prescribe.

I hope at least some of this if helpful but if you have any more questions do ask, we'll help where we can.

[BelaSen in reply to nomoreheels]

Thank you so much for your reply.. unfortunately i was in the hospital fro a month due to hyponatremia and other complications, hence couldn't reply.

Now i am better getting rehabilitated and my RA is not relatively less of an obstruction. I had reached 1gm twice a day and now i am at 500 mg twice again. My steroid has been stopped after a 3 month weaning off period. but now i am focused of a healthy diet.

I live in Mumbai, India and yes fortnightly i am taking blood tests monitoring my kidney and liver with CRP Serum test.

Due to the steroid the results have now started becoming more accurate and CRP is at 19.69, i am hoping for pointers to reduce it to under 5 as the parameters suggest.

Thank you so much once again for your replies, i am ever grateful.😘👍

[Tompark]

I’ve also recently been started on SSZ and am now taking 500mg three times daily increasing in another week to four times daily. I haven’t noticed a lot of improvement yet but I believe it can take up to 12 weeks to get the full benefits of sulphasalazine.

[BelaSen in reply to Tompark]

Thank you so much for your reply.. unfortunately i was in the hospital fro a month due to hyponatremia and other complications, hence couldn't reply.

Now i am better getting rehabilitated and my RA is not relatively less of an obstruction. I had reached 1gm twice a day and now i am at 500 mg twice again. My steroid has been stopped after a 3 month weaning off period. but now i am focused of a healthy diet.

I live in Mumbai, India and yes fortnightly i am taking blood tests monitoring my kidney and liver with CRP Serum test.

Due to the steroid the results have now started becoming more accurate and CRP is at 19.69, i am hoping for pointers to reduce it to under 5 as the parameters suggest.

Thank you so much once again for your replies, i am ever grateful.😘👍

[stbernhard]

Hello Belasen, Kitty already pointed you towards NRAS which is the best source of reliable information on RA in my view. I found that knowing as much as possible about RA, treatment options, self management, exercise etc. has helped me to get to grips with my life with RA. NRAS in collaboration with NHS and a company called Ampersand have developed an app on which you can record your symptoms on a daily basis. This is a fantastic tool to give you and your care team an overview of your condition. It's very easy to download and use. NRAS can help you if you have trouble with it.

Lastly, having RA doesn't necessarily mean a completely different life. Many of us are in remission. For the last six years out of ten, I didn't really think much about having RA and lead an active life. I hope you find a good drug combination that will help you over the worst to start with. It seems that you are in good hands with your doctors. All the best.

[BelaSen in reply to stbernhard]

Thank you so much for your reply.. unfortunately i was in the hospital fro a month due to hyponatremia and other complications, hence couldn't reply.

Now i am better getting rehabilitated and my RA is not relatively less of an obstruction. I had reached 1gm twice a day and now i am at 500 mg twice again. My steroid has been stopped after a 3 month weaning off period. but now i am focused of a healthy diet.

I live in Mumbai, India and yes fortnightly i am taking blood tests monitoring my kidney and liver with CRP Serum test.

Due to the steroid the results have now started becoming more accurate and CRP is at 19.69, i am hoping for pointers to reduce it to under 5 as the parameters suggest.

Thank you so much once again for your replies, i am ever grateful.😘👍