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Joined: Jul 2013
Posts: 4
New_Member
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OP
New_Member
Joined: Jul 2013
Posts: 4 |
Hi, I'm writing to ask for some advice Having been diagnosed in 2004, my AS has only recently started to become a painful problem which appears to be slowly spreading. My rheumatologist has suggested I move from Naproxen onto Cosentyx, but having read about the different side effects people are suffering from - and they seem to be plenty - I'm not so sure. What do other people take and what are the pros and cons you've faced.
Many thanks Paul
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Frederick
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Frederick
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Naproxen and Cosentyx are a couple of drugs I haven't been on so perhaps I am not the one to answer this. However I have always taken the attitude that as long as my rheumatologist is happy for me to try some new drug or other then I will give it a go. If you are on medication for A.S. long term the chances are that sooner or latter you will get side affects from your medication. You then decide what is the worst is it the side effects of the new drug or the pain of the A.S. assuming that is that the new drug is of at least some benefit to you. Phone your rheumatology helpline if you have such problems and they are sure to put you right on such things.
Over the years I have on the whole been rather lucky as I have had very few side effects from whatever medication I have been on. It takes a while for most drugs to take affect be that good or bad. So if possible try and put up with any side effects at least till you have spoken to your clinic or G.P. Read the literature that comes with the medication and obviously stop immediately if you read of any possible dangerous side effects that you start to suffer from. As a matter of interest what country are you posting from?
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Joined: Jul 2013
Posts: 4
New_Member
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OP
New_Member
Joined: Jul 2013
Posts: 4 |
Thanks for your comments Frederick. I live in the UK.
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Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
Hi Paul - I have been on Cosentyx for three months and it is helping my AS. It took over two months to really kick in. I went through four TNF biologics prior to Cosentyx. Prior to Cosentyx, my body was a mess. I was requiring high dose steroids and cortisone shots for flare ups, couldn’t sleep and was having difficulty walking, doing basic chores at home, etc.. I was giving up the fight. I am back to doing things I enjoy again, can sleep at night, walk for exercise and I can do housework again. When I over do, my body is recovering with sleep now. I wish I would have had Cosentyx 15 years ago but glad I have it now. My only complaint is that it has caused constipation because I have irritable bowel syndrome but doc put me on Linzess and no more constipation. I would recommend giving it a try. Keep us posted.
Meds -Hizentra, leflunomide, Prednisone
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Joined: Jul 2013
Posts: 4
New_Member
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OP
New_Member
Joined: Jul 2013
Posts: 4 |
Thanks very much for your comments Winter. Very reassuring to read such positive stuff. I think this will be the drug I'll opt for so no doubt I'll send a future post. Paul
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Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
Paul - Hope you get to feeling better soon. .
Shari
Meds -Hizentra, leflunomide, Prednisone
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Joined: Jul 2013
Posts: 4
New_Member
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OP
New_Member
Joined: Jul 2013
Posts: 4 |
Many thanks to everyone for your comments. After a lot of thought - coupled with a rough few days and the belief that the condition is worsening - I'm meeting my Rheum. next week as a first step to taking Cosentyx. Overall I feel positive about things and look forward to my beloved AS being held in check. Thanks once more. ​​​​​​​Paul
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
I've been on Humira for my spondy since june 2013 and have only had good results. The shot hurts, but that's it.
It isn't perfect, sometimes my flares are stronger than the Humira, and then I take some Aleve (but that quickly causes gastritis and edema for me) and once or twice a year I seem to need a short course of methylpred.
but stating how much it has helped every single symptom would fill up several pages.
i am cautious (maybe too cautious) about taking it if I think I might be getting sick or when taking the methylpred, so maybe that is why I haven't had infection issues. I also take vitamin C (500-1000 mg daily) and LDN (low dose naltrexone), eat a healthy whole foods diet, try to get enough sleep, try to walk most days and stay as active as I can, all things to keep my immune system healthy so that the Humira won't depress it too much.
So, really, I only have good things to say about it; Humira gave me my life back.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Jun 2018
Posts: 1
Lurker
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Lurker
Joined: Jun 2018
Posts: 1 |
Hi, I am very new to this site. I was diagnosed six months ago with undifferentiated spondy and rheumy put me on sulfa drug which has helped with the pain that is mainly manifested in my heel. I had a discussion today with the doctor about switching to a tnf-blocker, but honestly, it scares me. I am HLA-B27 + I recently went gluten free but am considering going no starch, but it is so hard. I am so grateful that I found this site and to know that I am not alone.
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Frederick
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Frederick
Unregistered
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Hi,
I had a discussion today with the doctor about switching to a tnf-blocker, but honestly, it scares me.
Whatever medications we are prescribed by our doctors they are bound to be some risk of side affects. So we balance out the risk against the benefit. The more the level of the pain then usually the more risk we are willing to take. Personally I just swallow whatever they give me. I have suffered from A.S. for over 60 years and so far I have had very few side effects. Whenever I have had any such problems the medication is changed and I get on with my life as best I can. We must have some trust in these doctors or there is no point in us seeing them.
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