And if so, plase supply some feedback.
Also, is it true that remecade is the choice of drug for AS patients?
I was on humera for a short spell and the results were not good so I went back on remecade.
Eventually once again I would like to "try" something else, humera was not the answer and embryl will probably not work either.
I have just finished the loading phase of Remacade and have noticed no real change. Time will tell I guess. Remacade was the only med I have tried. Wish I could be helpful.
Best of luck,
sosume.
Hi there! How long were you on Humira for? I'm considering it. Cosentyx was suggested to me by my rheumatologist, but apparently it's fairly new to the market (only couple of years) and there isn't a ton of research or studies behind it. I mean they are all pretty much the same, but atleast with Humira, it's been around for a while and we are aware of side affects (which scare me). Did you experience a weakened immune system or get any infections?
Was on Humira for 6 months. I would like to add that I temporarly switched rhume's and the new one was clueless to my issues, concerns, or setbacks...just the line of BS that the insurance co, will not allow increased dosage or frequency until I have been on the drug for 1 year. It was the advise of an ENT dr. that I switched rhume's. Anyways to make a long story short I am with my old rhume dr. and back to 7 weeks intervals of 750 mg. remecade. I am coping much better with the remecade vs humera. My current rhume could not understand why I was on such a low dosage of humera when I was on the upper limits of remecade. Changes in weather play an important factor in how I feel.
I fatigue easily even on good days. Trying some vitamins to see if that will get me out of this slump of tiredness. Any advise from members is welcome.
ALL of the bilological meds weaken the immune system, and YES I get sick more frequent and for longer durations
I know - and that's what worries me! Were you sick with common cold / flu or something more severe like the infections they talk about in the warning / side affects? How long have u been dealing with AS? Are you fused or starting to fuse? Luckily, my spine is ok. I have to get X-rays at 2 year intervals to ensure that I don't fuse.
Take vitamin C. It may alter some of your blood tests after a while (kind of saying that the test shows a high level of vitamin C so the test is not conclusive) but it helps. Especially high dosage.
Yup! I do - along with other supplements . Fish oil (especially the "EPA" in it) and turmeric are said to be good for reducing inflammation. Although, I don't know for sure if it helps, I still take them anyway.
I think I know about the fatigue. Have you had your iron and B12 levels checked? I was borderline anemic and decided to go on an iron supplement. I feel much better. My iron pill has b12 in it as well. I know when both these levels become on the lower side that it can cause fatigue. Do I still have a bit of fatigue? Yes I do, but I find its more manageable since I've been taking an iron pills and I don't get that overwhelming fatigue that overtakes your day. Talk to your rheumie about getting these levels checked. Might do you some good! :-)
had double pneumonia earlier this year which started as influenza.
Almost did-me-in was in hosp for 4 days and missed 2 weeks of work. just got over a spell of Clostridium difficile (C-diff) from taking antibiotics that kill off the good bateria in your gut. 1st time with that!.
Have had AS for ~20 years and generall do fairly well. Exercise and healthy eating are key. I just cannot shake the fatigue, although I started taking multiple vitamins which seem ? to help.
spine is mostly fused.
hjave had B vitamin deficency checked and YES everybody is low including me. I sometimes take a liquid "boost" which has mega of vit. B6 and B12, including caffeine. strated taking vitamin (multiple) and jury is still out on that.
Thanks for the input! :-)
Hi I was prescribed Enbrel for psoriasis a couple of years ago. After a few months on it I got really sick and was in hospital with viral pneumonia and other life threatening problems. I did not connect it with the drug at the time as it was diagnosed as a 'mysterious virus'. I did not respond well to the Enbrel so Doc changed me to Cosentyx. During the initial stages of the treatment I got diahrea and was diagnosed with collageneous colitis. Symptoms gradually got worse and I became very sick again and to cut a long story short ended up having my whole bowel removed and now have a colostomy bag. It is a very difficult thing to prove but I am totally convinced that the drug lowered my immune system so far that I was attacked by a virus which destroyed my bowel. Has anyone else (or know of anyone else) who has had that problem or similar? I believe I am in the minority but still it is certainly something to be considered.
Vitamins seem to help me. Automatically take a 1-a-day in the am with my other happy pills and I seem to have more energy than normal. Have infusion next week and normally by this time I am feeling achey and tired, but not this time.
Hey there! Thought you'd be interested in this. Novaritis, makers of Cosenxtyx issued a press release in June of this year stating that it may be better than Humira and that up to 80% of ankylosing spondylitis patients treated with Cosentyx at two years had no radiographic progression in the spine or joints. There will also be a head-to-head clinical trial planned to compare Cosentyx versus Humira. Search this article title: "Novartis presents new scientific evidence for Cosentyx in ankylosing spondylitis and psoriatic arthritis patients at EULAR 2016". Interesting read!
Great, thanks. I e-mailed them asking how their drug works verses remecade. Remecade works by blocking the TNF while Cosenxtyx works on the IL-17A marker. Want them to put it in laymans termonology.
Being on Remecade, are you also on methotrexate? I've heard that it's quite common to be on this while taking Remecade.
YES, taking 25 mg. per week. Most people on TNF inhibitors are on Methotrexate. One of the drugs works with the DNA and the other works with the RNA (TNF inhibitors/methotrexate) Essentially they work in conjunction with each other. Thats the extent of my knowledge on this subject. Never had any issues with the liver function with taking methotrexate, although my rhume insists on me getting blood work done every 2 months. It can be hard on the liver, even more so if a person consumes large quantities of alcohol: Not me 
Hi Jim
I dont know about Remecade. I am on Enbrel and Sulfasazadine. Only 2 weeks on Enbrel and feel pretty awful for 3 days after the 50 ml pencil injection and no change to the back and SI joint pain nor fatigue and headache and chest pain. Can you tell me about your experience with Enbrel? I have been told Humira is good? (by a Rheumotolgist) though Enbrel has less side effects. All the best.
Never was on Enbrel. Tried Humera with disastrous results. Our bodies all react differently to the biological drugs out there. I was on Sulfasazadine about 12 years ago but built up an immunity to it. Next line of defense is methotrexate. After that an combination of methotrexate and biologicals. been on biologicals for ~12 years with methotrexate and occasionally have flare ups. Considered many times to switch to something else and one of my choices would (possibly) be Cosenoix. That's how this discussion originated: me asking about users of this drug.
The ONLY dislike for Remecade is the infusions every 7 weeks with the driving and 2.5 hour downtime.
Thx Jim, sorry I misread that you had been on Enbrel. You are right it is difficult to find the right medication. I think part of it is understanding the progress of the disease and managing your lifestyle (and the pain) as well as a drug that helps with all that! So far neither NSAIDS Sulfasalazine and now Enbrel seem to have little benefit but maybe they are doing alot more than if I was on nothing at all! 12 years is a long time to be on Biologicals and I hope they continue to help you with minimal adverse effects (which ever it may be). K