I see my new rheumy for the second time tomorrow morning. The first visit, two months ago, he put me on Cosentyx. I’ve finished my loading doses and seen moderate improvement of my plaques, but no real reduction in my joint pain.
So here’s my question:
For people who are still on Cosentyx, when did you know it was working for the pain? Did you have relief immediately and it got better over time? No relief at first and then building over time?
Telling it like it is is not whining so go for it.
Pain may not improve to quite the extent you’d wish. Disease control and improvement in function (e.g. by lessened stiffness) are often the main benefits as gauged by your own experience and indicators such as reduction in swelling. Pain control may be a somewhat separate issue, but again, your rheumy needs to hear your experience to date.
Per the human trials for Cosentyx: PROVEN TO PROVIDE LESS JOINT PAIN AND CLEARER SKIN. Up to 60% of patients in a clinical trial saw at least a 20% improvement in psoriatic arthritis (PsA) symptoms at 16 weeks.
SIXTEEN WEEKS… so with just finishing the loading dose you have at least another eight weeks to go before you see the true impact of the medication.
Not to discourage you but sometimes the pain is not greatly reduced either due to damage or continuing issues related to the disease. It is a tricky thing. During my journey I gave most drugs a 6 month stent. I think most info. I read was indicating a 3 month period but that is just a generalization. It may be that symptom treatment needs to be pursued but overall you should in theory noticed a decline in pain but that is not always the case. For myself, I can feel what appears to be a difference in pain levels but it is a matter of degree. I figure it relates to how the disease is different depending on what stage and other factors relating to personal health. Concerning Cosentyx , I noticed differences by the third month and by the 6th month my blood levels showed good signs.
Those I know on it in the UK all say it works but did take some months like the research says. And @Sybil is right pain is often so separate an issue which takes some major dampening down of the disease to effect but can be helped along the way with more than just this. And every rheumy needs to hear precisely how you’re doing at every appointment so none of that is whining at all, it’s allowing him or her to their job properly.
Thank you everyone! Taking your advice, I spilled all to the doctor. After listening to my experience so far, the Doc and I decided to carry on for another 8 weeks and then reevaluate. They also referred me to a gastroenterologist to explore the reason for a recurrence of previously controlled diarrhea, bloating and gas, since I started Cosentyx.
A pretty good visit, even if I still don’t really have a concrete answer as to whether it is for sure PsA or something else.
I have struggled to verbalise my pain because my swelling is pretty good now. I still struggle badly with stiffness & joint pain though. I have a Rheumatologist who will actually sit and listen to me & try very hard to help. Iv been my own worst enemy in not communicating to be honest. We are getting there now but it’s taken me the best part of a year. We shouldn’t be feeling like it’s moaning, Drs need to know because they can’t see pain. This is all just a very difficult path to navigate & you need the help of a good Rheumatologist to do it and keep your sanity
I have taken it for a year and a half now and I saw joint relief after about 10 weeks. I now only have very very slight joint pain when the weather changes or I over did it. I have zero psoriasis. Keep going! I hope and pray it works for you like it has for me!
I have taken it for about a year now. At first I really couldn’t tell anything other than I didn’t seem to have any side affects. It took some time for it to sart working, I want to say a couple of months or so, but even then I still couldn’t go more than 2 weeks or so before it wore off. I am now on 2 pens which has been life changing. It seems like my rheumy said it was one of the slower ones and could take up to a year to feel full effects.
It is important to distinguish pain from damage vs. some other pain that may or may not be related. Obviously if you are not taking any biologic to stop damage the pain could in theory get worse. I think the disease is too complicated to simply say yes pain is reduced. What has been reduced the damage or the symptom?
It becomes quite hard to apply normal thinking to such a problem hence the science involved. Who is to say if the perception of pain is reduced or not. We can not assume all the factors involved on a personal level are known. The common sense version is yes pain is reduced due to the lack of damage but it would depend on the persons personal health situation. There are many scenarios where it could be or not be the case.
In my personal experience I notice my perception of pain is less when I am on biologics, nsaids, and prednisone. Is this causal connection real? Who is to say. Managing symptoms is important as well so never at any point do I ever stop taking pain medications to reduce pain. The right medication for you and works is what is important measured against the diagnosis and symptoms.