In 2 days I have a follow-up appointment with my rheumy since it is just over 3 months since starting on Simponi. 3 weeks ago I was bragging about how well it is working but after 10 days off of 5 mg prednisone, all the foot, knee, hip and hand pain is back…it seems that without prednisone, the Simponi hasn’t progressed very far. Is 3 months long enough to decide on the effectiveness of Simponi? Should I jump back on the prednisone? (I went off of it 1 month earlier than prescribed due to a persistent sinus infection which is now under control due to antibiotics) Experience and thoughts are welcomed.
No three months isn’t long enough. All the science shows that biologics of the nature of Simponi really don’t reach full efficacy for a year. Also your body presently is reacting to no pred, again. Give it another three weeks or so before assessing to see what you feel like when the ‘no pred’ reaction is over. What was your PsARC score before starting Simponi? That will be key when comparing it now, as to how well or not Simponi might be starting to work for you.
When I started Enbrel - not unlike Simponi, it did nothing positive pain or capacity wise until month 6. Sadly it decided to quit again come month 9 and so we decided at month 11 it wasn’t my med. So even though I was checked again at month 3 there would have been no way I would have stopped it then solely because it wasn’t helping. The only reason I would have been permitted to stop it would be for nasty side effects of which I wasn’t suffering at all. I had a different reaction to humira. Those nasty side effects set in after two weeks and I was whipped off it by week 8. So we never knew if it had any capacity to help me at all.
Thanks @Poo_therapy for that explanation. It’s a good reminder and helpful to more than just me. I was surprised at how normal I felt on 5mg prednisone, not an exaggerated good, just pretty normal able to walk longer and without limping, waking up with little stiffness or pain. Slept better too which always helps. Oh well, back to the waiting game. Along with all of the joint pain, psoriasis started to return after a few days without prednisone. You would think by now the RX companies would offer something like Prednisone Lite! I’ll find out ARC exam in a few days.
Poo you always get me in trouble with the ARC exam stuff. Had my 3 month appointment with rheumy today. So asked, “hey I have this cyber friend named poo who wants to know my PsARC score…her last name is Therapee” She gave me a funny look and said, “I have no idea what you are talking about, what’s an ARC score, a friend named poo??” Seems like it just isn’t commonly used around here.
But she did do an extensive exam of all joints and then increased my Simponi dose to every three weeks instead of once per month and told me I need to stay on 5mg prednisone for 3 more months. ( I hope @Seenie is smiling a wee bit.)
Doesn’t anyone in Canada know how to use google? Have a look on psoriatic-arthritis.com. It’s not an ARC (that appears to be something different) it’s a PsARC exam.
The good news is that she at least examined all your joints. So hopefully she counted them up as well as to which ones were swollen and which ones were tender. So ask her how many of each and then you have your PsARC score.
All rheumys use the DAS score for rheumatoid arthritis. The PsARC simply includes further 48 joints beyond the 28 joints which RA affects. It’s that simple.
Simponi in one of those helpful bioloigcs which can be adjusted for your body weight. However I’ve never heard of anyone going every three weeks. I hope it helps you.
And remember after yet more steroids you’re likely to get the steroid kickback yet again.
Well, she went to the same university and got all the necessary education and training but PsARC was not a term used. When i read up on PsARC it seems to be highly subjective with variables…likely 5 different rheumy’s would come up with 5 different scores, patient input as to how they “feel”…not overly precise. Each would feel inflammation differently with more or less experience and sensitivity. It would be helpful as one more tool to throw in the bag diagnosing this goofy disease and if the rheumy is consistent, it gives a comparison and base line to work off of.
Agreed. That’s why since 2016 the same person has always PsARC-ed me. In the UK the PsARC is important for permitting a change of med as an increase permits the change. There are some great videos out there showing practitioners how to do it properly.
I saw in your other comment today on someone else’s thread that at least new rheumy can see your blood tests show you’re seronegative which is at least something in the right direction.
While I’m not getting the relief that I was a few weeks ago from the 5 mg prednisone, I’m also not noticing a lot of results from the Simponi. My pharmacist who specializes on biologics and high end meds said it would be unlikely that I will be on Simponi past 6 months if there is little relief. Especially on a higher dose.
Your pharmacist is most likely right. Remember @Amos I had to try 5 meds before I found one that worked for me coherently.
Too bad there isn’t a more scientific method than hit and miss.
Agreed. Between the biologics and the juggling of dmards it’s a bit much
Well they are finally now able to tailor cancer meds to the cancer and now the patient. The science on the ‘hit and miss’ stuff is slowly evolving but it will be a while yet before they for the likes of us which med will suit which patient first. Meanwhile we’re are lucky we have an array of meds to at least try.