I have now passed by 1 year anniversary of my diagnosis and I have been on Cimzia for about 9 months now. After months of saying I don’t feel as better as I think I should at this point my doctor is listening. Apparently the magic phrase was that I don’t feel like the effects last a whole month.
I’ve said since I started this journey that I do not want to be on more that 1 medication. I’m being sent for some MRIs of my spine and if they show more damage he wants to think about changing my biologic but in the mean time he wrote me a script for 500mg of sulfazine twice a day.
I know it’s safe and I know I need it and I know it’s a super low dose but I still don’t want to. I’ve talked to my husband and my mom and my best friend, but I’m sure as you’ve all experienced, as patient and understanding as they try to be they just don’t understand it.
Anyway, tell me I’m being silly and to take the sulfazine, please. I haven’t filled the prescription yet because I’m worried I’ll get sick at work but the weekend is coming up and I’ll have no excuse.
Morning @Bluebell
Yes you are being silly. So, so, so often things work better with a DMARD added to biologics and for some biologics it seems it’s manadatory to add them in order to stop you developing antibodies to them.
And out of all the DMARDS he could have chosen, he’s chosen the most benign one. With this disease, I’d take all the medications offered to keep it at bay and to keep me functional. I do get your wish though to keep medications to what’s necessary but if it’s not lasting the month and adding this one might help that, boy would I give that a shot and see. Simply because it’s sounding like it’s necessary.
Sulfasalazine was my first proper DMARD which actually worked but at 3000mg per day. However it was built up really slowly - first week one 500mg tablet per day, second week one twice a day and so on. So build it up that way, rather than lash out with 2 per day. Initially I took an anti-nausea tablet to halt any sickness (never felt sick on it - no idea if that was due to the anti nausea or not though!). So why not just give it a go and see, if it doesn’t work, if it’s not the drug for you, then you just stop it and it’s back to the drawing board. But at least then you’re one step further to finding a combination or just new drug that just does work better for you. And getting to that point surely is the object of the exercise?
Sulfasalazine didn’t like me adding a biosimilar to enbrel (Benepali) to it and threw a wobbly about 5 months after. Just seen my rheumy this week and she said it was a extremely rare issue, but not unheard of, but stressed it was extremely rare. And later if needed in order to make Benepali work better, we might try adding it back again but at your low dose instead of the mega dose I was on. But up to that point I thought sulfasalazine was a brilliant drug, no side effects, no lifestyle changes, no much of anything except my wee was bright yellow (which was something which was just amusing especially when asked for a urine sample for something else and the doctor or nurse stood there looking at the pot in awe!)
So please take it and hopefully after a few months as it does take its time to get going, you might find the Cimzia is working better and how good would that be? And indeed how easy would that be? Trying it just has to be a win win situation whatever the eventual outcome doesn’t it? Best of luck.
You are not being silly to worry (feelings are not silly!) but, you are being silly to base decisions on feelings instead of evidence and the advice of your Rheumy, so in the geltlest way possible, I’m going to tell you to fill the script, and take the sulfasalazine
I like my spouse and talk to her a lot, I REEEEEEEEAAAAAAALLLLLY miss my mom and truly wish I could talk to her. BUT at the end of the day, the only person I talk to regularly that went to medical school and can give me true advice is my Doc(s)
Cimzia is a wonderful med. But it like all Bios for PsA works only on axial issues (spine) and actual P. For all the peripheral stuff (arms, legs, fingers toes etc) one needs a DMARD (you can get by often with an NSAID if you don’t mind eventually frying your liver and kidneys. NSAIDs have the worst side effects of all the meds we have available to us BAR NONE. We forget that fact because we can buy them OTC and think they are safe - they are not. Remember we used to be able to buy cocaine OTC.
Oh one other thing Bios do lose their steam over time which is why we switch. The DMARDs extend the time most Bios work. We don’t have that many Bios available to us. so the longer we get out of one the better. Despite all the “brands” out there, there really are only three types of Bios.
Well, reason won out. I took my first dose this morning! My rheumatologist didn’t mention it but I asked the pharmacist and she told me to start taking folic acid so I started that last night too.
Will I definitely get sick? I’m such a baby about throwing up!
Congrats No you definitley won’t get sick BUT you can make the whole process much easier on yourself… It is best to take this medicine right after meals, at evenly spaced times throughout the day and night. Try not to let more than 8 hours go by between doses, even at night.
Swallow the entire tablet whole. Do not crush, break, or chew it.
The most IMPORTANT thing is to DRINK extra fluids (that means water not beer, despite the extra risk of rusting your pipes LOL) so you will pass more urine to help prevent kidney problems, not to mention getting the med out of your GI tract and into your system more quickly.
Your pharmacist is right about a folic acid supplement BUT check with your Rheumy and get a script. DON’T use OTC supplements EVER. Folic acid inhibits the effect of SSZ (as it does with MTX) too much and the med doesn’t work OR you end up increasing the dose (and side effects) to get a therapeutic effect. FWIW most of the world thinks us USA folks are medication wimps. They use far fewer pain meds and things like folic acid. In fact several international protocols say NO folic acid.
Again CONGRATS on taking control of your disease. Remember all these meds (DMARDs, Biologics) have far fewer side effects and long term effects than the OTC NSAIDS we use to avoid them.
Congratulations! If you’re worried about throwing up (I’m utterly paranoid about it - of phobia proportions) get an anti-sickness med to take initially. That’s what I did and I never threw up not once. And after a couple of weeks I dropped the anti-sickness med and also never threw up.
Day 13 on sulfasalazine and I have not thrown up! I did wake up this morning with a sore in my mouth and a painful, swollen lymph node under my chin. Of course it’s a long weekend so I can’t reach out to my rheumatologist (just keep telling yourself it’s not an allergic reaction!). I think I might go to an urgent care at some point if it doesn’t feel better by Monday.
Well done! It is such a relief when a new med doesn’t give you your worst nightmare isn’t it?
Never got mouth sores or swollen lymph nodes though so hope they just pipe down and go away for you.
