I've had RA for about 5 1/2 years. I have been taking Humira for more than 5 years and recently had to stop since I was having some weird reactions. It had also seemed to lose its effectiveness the past year or 2. Me and my Dr. decided that I would start Orencia or Cimzia soon and I've been researching both. I was excited to try Orencia since I read somewhere that it might also help with Sjogren's syndrome. I read many great reviews, and then I came across a few that said after they started Orencia they developed a bad cough. I read through the many responses and became scared to try it. Now I don't know what to do... I really want to try Orencia but I dont want to chance getting a bad cough or having lung problems in the future. I know the risks are greater if you have COPD. Right now I dont have any lung problems, but possible mild asthma or allergies.
Has anyone taking Orencia developed a bad cough? Would you suggest that I still try it?
Thank you so much for any help or advice. This website has been very helpful!
Written by
LFraser
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Hey there I don't k now Orencia or Cimzia from personal experience but a friend of my mum's has started Orencia recently and as far as I know she hasn't had any side effects from it yet!! I think with biologics the hard part is finding a way to manage the fear around their side effects as they're fairly new drugs. I'm on Simponi and I was too scared to take it for almost 6 months despite very active RA. I started taking it eventually because I didn't want to live with my RA being so extreme anymore so I decided to take the risk. I'm especially scared because it says Simponi can increase your skin cancer risk but now I just see the dermatologist fairly regularly to have check-ups.
I think you shouldn't be too scared of biologics (I know easier said than done!!). Your rheumy has all your medical information and can make a good decision for you! Mine suggested both Simponi and MabThera but thought MabThera was safer to begin with as I have some Lupus-like symptoms but he said Simponi's fine as well as I was too scared of having an infusion and preferred injections.
I'm feeling better about wanting to try Orencia again, and I know all of them seem scary. I had no problems with Humira for years, and I know if I do develop a cough with Orencia I can try another one. I just hate to risk being in pain while waiting before I start another biologic. But I'm very hopeful that it will help me.
I hope Simponi is working for you, and you have to remember that all kinds of things raise our risk of cancer. So hopefully you'll feel safer as time goes by.
I prefer injections as well and I'm going to miss Humira's injection pen. It was easy...
Your response was very helpful. Thank you!!! Right now, even the slightest good thing about Orencia would give the ok to try it. I just want to feel better again.
I can call my mum's friend tomorrow and ask her about Orencia some more and about the coughing if you like?
Yes, Simponi is working extremely well I am just trying to take real good care of my health and I read a lot about cancer prevention through diet & lifestyle! Thing is they found polyps during a colonoscopy and my gastroenterologist was a bit worried because I am statistically too young to have stuff like that. So I am a bit scared about tumors and cancer in general (who isn't!!) But Simponi has given me back my life and I think I couldn't have decided against biologics if I didn't want to risk joint damage.
Thank you for offering to call. I may just choose to try something other than Orencia for now though.
I think diet is very important its just hard for me to stick to a healthy one all the time. I've been trying to eat foods rich in Omega 3.
I have borrowed a few books from the library on the anti-inflammation diet recently when I had a flare up. It is really good for preventing cancer, allergies and inflammation. I would definitely recommend checking it out.
No worries, good luck with whichever biologic you choose !!
Yeah I've read about the anti-inflammatory diet and it seems really good except it says to cut down on full-fat dairy and cheese as well as eggs and I need all of these things for calcium, protein and vitamin D. Plus I really like them Same with coffee and chocolate. But maybe if I stick more to it I'll find it makes a difference to the joints?
I don't eat meat anymore nowadays and I tend to eat a sort of Mediterranean diet (sadly without the wine lol) without the grains because I don't tolerate them very well. I'll definitely read up again on the anti-inflammation diet though and I think I should give it another go, more determinedly this time
Yep. I had a hard time diving into the diet and taking it on 100%. I just couldn't do it, but I tried to eat and drink the things they suggested. I'm definitely addicted to coffee.
The Mediterranean diet seems nice as well, and I guess from what I remember they are similar. I also wish I could drink the red wine which is mentioned in both diets. You'd think we could at least have that with these meds, oh well...
Good luck and thank you so much for sharing your experience with me.
I read the comments at the website I referenced in my original question again. Wow. They are really bad, but of course we don't know if they had an illness prior to starting Orencia. The website is rawarrior.com/reliable-sour.... And here’s the post they commented on - rawarrior.com/reliable-sour...
I will do more research. In case anyone is thinking about taking Orencia, I've compared Orencia and Cimzia at the sites below. I noticed that while searching the document for Cimzia, cough was not listed as a side effect and COPD was not mentioned either.
I don't think it's thick and it doesn't take long, 10 - 15 seconds. I was advised to let it reach room temp before I took it. Bit scarey at first but it is now second nature. I had a Nurse from Healthcare at Home sit with me for the first couple of times to ensure that I did it properly.
I also consider quality of life to be important and being in constant pain is no fun. At the end of the day you need to make an informed choice and try not to stress/worry because I find that the more you stress the worse the pain becomes and once you are in that circle of pain it is very difficult to exit.
I think its important to remember that even some very common drugs can have rare nasty effects, and that the anti-tnfs and new drugs may not actually have much more risk that things that we don't even think twice about. Also you have to balance up the risks of uncontrollled disease against the risk of treatment. In the past a lot people who weren't treated adequately for RA ended up with secondary amyloidosis as a consequence, but that has become really rare now in RA because people are being treated. You can also end up with heart problems and other things from inadequately controlled inflammatory disease. I'd personally take the risk of side effects every time over the risks of complications from uncontrolled inflammation.
That's very true! Thank you. I think I just got emotional a bit since I was so excited and hopeful about trying Orencia and what I later read scared me. But I do understand no matter what might happen on the new medicine, the benefits will most likely weigh out the cost. I just feel more comfortable trying something that others didn't mention someone passing away soon after trying it. I should have mentioned that up above.... But of course, who knows if it was the medicine or something else that hurt the person more. What I read in the reviews where someone later passed away, they didn't explain everything about the persons health and circumstances.
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Same with coffee and chocolate. But maybe if I stick more to it I'll find it makes a difference to the joints? 
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