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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 just started Humira.
For the first 12 years, couldn't find a rheumatologist that could dx me, so I dealt with it all with everything but what I really needed, something for the inflammation. PT, chiro, ice, heat, muscle relaxant, ultrasound, a few cortisone injections.
Then for the next 2-3 years, tried doing it with LDN + flector patches + topical nsaid creme + occasional Aleve and occasional prednisone + fish oil and other supplements.
But still wasn't enough. I was afraid of losing my job. And was getting to the point that life was just too hard.
Hoping it works out for me. I've heard all the good and bad.
I was to try SSZ, but then we discovered I have NAFLD (due to metabolic syndrome).
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: May 2013
Posts: 37
Member
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Member
Joined: May 2013
Posts: 37 |
I would not touch them but if folks want them that's cool.
the jury is still out on these meds and God knows what will be revealed further on down the road. the TNFs have been out a relatively short time for ALL the data to be in...no thanks PS very often remissions can and do occur without meds or diet modifications.....my AS flew out the window in my 30s to 40s I am not here to stir anything up, but you should be more sympathetic in how you word your sentences, "but if folks want them that's cool"... nobody "wants" to take these drugs, people are usually in a dead end and don't have any other options. Just by looking at your two comments I can tell that you are one of the lucky ones, you are against meds and against diets, that could only mean that it must have taken a lot of will power and dedication to fall into remission naturally, well guess what? People aren't just going to wait around until they feel better, we all have lives to live and the sooner we are out of pain the sooner we can go forward with what we were intended to do on this earth. Correct me if I am wrong here Saltire. To Itas: I find your story very similar to mine and the more familiar stories I read or hear about, the better I feel that I am not alone. On the other hand though, these aren't always the happiest of reminders because they all come with consequences, everything matters and every decision is a result of positive or negative impact, that's why people in our situations can't just go with the flow of life, we need to take control because its our bodies in the end and we only get one chance to use it wisely. I am 22 and have been in a constant flareup everyday for the past three months, I was previously on Humira for two years with very good results and about 90% remission. Six months ago I started eating Paleo and eventually came off Humira because I was feeling so great. I was bodybuilding three times a week and rock climbing twice a week with no pain and I was in full control of my inflammation. Exercise has always been something I couldn't live without, so when I was diagnosed, all of my athletic career dreams came crashing down, but I have learnt to accept that and still use my body to the best of its ability. Back to my point though, coming off the Humira with successful remission naturally didn't last quite as long as I wanted unfortunately, the flareups came back and just as bad as I had them previous to Humira, this was my fault for not consulting with my doctor first. I saw my rheumy a month ago and he started me on Humira again, I started noticing tingling and prickle sensations in my hands and feet, I started worrying that this might be a cause of neurological problems or possibly MS, so I consulted him and we stopped Humira once again after two injections. I still am not sure what the tingling is from but will find out shortly from my neurologist I hope. I have an appointment tomorrow to speak with my rheumy about new treatment and man do I not want to have this talk over and over again, but it must be done and I need to decide whether biologics are going to be the right choice me again because I can't stand the pain any longer especially at our age where we should be out and about hanging out with friends and participating in physical activity, what a burden this illness can be. From my experience of taking an NSAID such as Celebrex for the past month, I would say it has helped mildly throughout the most of my day but by bed time I am in pain, I don't recommend NSAIDs for severe AS conditions because the results can be very misleading at times. I can definitely say that going on Humira for those two years really gave me my life back and I was in the best shape of my life with no pain in my SI joints what so ever, the only downside was the tingling in my hands which is still a mystery to be solved. I wish you all the best on your treatment journey and go with your gut when in doubt!
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Joined: Feb 2010
Posts: 589
Sergeant_AS_Kicker
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Sergeant_AS_Kicker
Joined: Feb 2010
Posts: 589 |
Interesting post Bigcrunch. I have had the tingling and occasional numbness sensations recently and have a doctors appointment tomorrow. I am also very fearful for MS right now, due to noticing a lot of the symptoms (fatigue, tingling/numbness, balance problems/dizziness, vision issues, sharp bladder pain occasionally, depression/anxiety...) It's scary that I have like 80% of MS symptoms. I wonder if the Enbrel has caused this or whether I've actually had these problems for a lot longer than I realized.
I hope you don't have MS.. and I'm hoping the same for myself.
I'm just about prepared to go 100% Paleo now.
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Joined: Aug 2012
Posts: 215
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Aug 2012
Posts: 215 |
I would not touch them but if folks want them that's cool. That's fine but I can't afford to stop working, walking and having a bit of a life, and that was what I was looking at before I started humira. The first five nsaids I've tried have all made me feel worse overall due to side effects and humira hasn't. And I know that uncontrolled inflammation is really really bad for us long term. I'm curious though saltire - how do you treat your inflammation? I note you don't use diet and obviously not anti tnf's?
Last edited by Shirley; 06/17/13 08:35 AM.
AS, IBS, reflux oesophagitis and dysphagia, PCOS/insulin resistance, asthma... Currently managing my AS with humira, methotrexate, low starch diet and exercises. Also taking omeprazole, metformin etc.
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Joined: Aug 2012
Posts: 215
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Aug 2012
Posts: 215 |
It's scary that I have like 80% of MS symptoms. I wonder if the Enbrel has caused this or whether I've actually had these problems for a lot longer than I realized. I hope it isn't MS. I was investigated for things like MS a few years ago (before the AS diagnosis) and I still sometimes wonder...
AS, IBS, reflux oesophagitis and dysphagia, PCOS/insulin resistance, asthma... Currently managing my AS with humira, methotrexate, low starch diet and exercises. Also taking omeprazole, metformin etc.
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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 |
BigCrunch, Good Post.  I hate to see such young people have to deal with all of this. I hope you can "get your life back" like it was when you were on the Humira. Hoping the biologics aren't causing MS in you and hoping you can either take them or something equally good for you. Though thus far, I haven't found anything as good, then again, I never got the chance to try the sulfasalazine. Have you tried that. My rheumy thought it might have been a good option for me before we discovered the fatty liver (due to prediabetes). If you haven't tried it and do, just make sure they test your liver enzymes as it can affect the liver, doesn't for everyone but can.
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: May 2010
Posts: 774 Likes: 1
Magical_AS_Kicker
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Magical_AS_Kicker
Joined: May 2010
Posts: 774 Likes: 1 |
I would not touch them but if folks want them that's cool.
the jury is still out on these meds and God knows what will be revealed further on down the road. the TNFs have been out a relatively short time for ALL the data to be in...no thanks PS very often remissions can and do occur without meds or diet modifications.....my AS flew out the window in my 30s to 40s I am not here to stir anything up, but you should be more sympathetic in how you word your sentences, "but if folks want them that's cool"... nobody "wants" to take these drugs, people are usually in a dead end and don't have any other options. Just by looking at your two comments I can tell that you are one of the lucky ones, you are against meds and against diets, that could only mean that it must have taken a lot of will power and dedication to fall into remission naturally, well guess what? People aren't just going to wait around until they feel better, we all have lives to live and the sooner we are out of pain the sooner we can go forward with what we were intended to do on this earth. Correct me if I am wrong here Saltire. To Itas: I find your story very similar to mine and the more familiar stories I read or hear about, the better I feel that I am not alone. On the other hand though, these aren't always the happiest of reminders because they all come with consequences, everything matters and every decision is a result of positive or negative impact, that's why people in our situations can't just go with the flow of life, we need to take control because its our bodies in the end and we only get one chance to use it wisely. I am 22 and have been in a constant flareup everyday for the past three months, I was previously on Humira for two years with very good results and about 90% remission. Six months ago I started eating Paleo and eventually came off Humira because I was feeling so great. I was bodybuilding three times a week and rock climbing twice a week with no pain and I was in full control of my inflammation. Exercise has always been something I couldn't live without, so when I was diagnosed, all of my athletic career dreams came crashing down, but I have learnt to accept that and still use my body to the best of its ability. Back to my point though, coming off the Humira with successful remission naturally didn't last quite as long as I wanted unfortunately, the flareups came back and just as bad as I had them previous to Humira, this was my fault for not consulting with my doctor first. I saw my rheumy a month ago and he started me on Humira again, I started noticing tingling and prickle sensations in my hands and feet, I started worrying that this might be a cause of neurological problems or possibly MS, so I consulted him and we stopped Humira once again after two injections. I still am not sure what the tingling is from but will find out shortly from my neurologist I hope. I have an appointment tomorrow to speak with my rheumy about new treatment and man do I not want to have this talk over and over again, but it must be done and I need to decide whether biologics are going to be the right choice me again because I can't stand the pain any longer especially at our age where we should be out and about hanging out with friends and participating in physical activity, what a burden this illness can be. From my experience of taking an NSAID such as Celebrex for the past month, I would say it has helped mildly throughout the most of my day but by bed time I am in pain, I don't recommend NSAIDs for severe AS conditions because the results can be very misleading at times. I can definitely say that going on Humira for those two years really gave me my life back and I was in the best shape of my life with no pain in my SI joints what so ever, the only downside was the tingling in my hands which is still a mystery to be solved. I wish you all the best on your treatment journey and go with your gut when in doubt! your reply is sooo predictable...in essence it reads YOU CAN'T BE IN ENOUGH PAIN OR YOU WOULD BE ON THE TNF'S..... how dare you! how dare you presume my pain levels lot of will power and dedication to fall into remission your lame sarcasm leaves a very bad taste in my mouth Bub...once again how dare you! very often remission is possible,and does happen, without meds diets or WILLPOWER as for my line I would not use TNFs but if they are good by you,that's fine.... so what? I stand by that line 
Last edited by saltire; 06/18/13 06:24 PM.
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Joined: Feb 2010
Posts: 589
Sergeant_AS_Kicker
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Sergeant_AS_Kicker
Joined: Feb 2010
Posts: 589 |
Satire, I think that many people with AS, including myself, can end up in such a bad state that we are willing to try the Anti TNFs and other medications despite the side effects, for the simple reason that functioning in life can be unbelievably difficult. Some people fall into remission naturally and that's fantastic, but for others, we need to exhaust all options to try and live the best quality of life. I am one of those people who is very very skeptical with medications, yet it reflects the situation that we are in by having to seriously consider all of them. Maybe there was some sort of miss communication somewhere but we shouldn't be arguing. Remember it's a support forum 
Last edited by seb; 06/18/13 11:38 PM.
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Joined: Aug 2013
Posts: 215
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Aug 2013
Posts: 215 |
I also had tingling in my hands for 6 months. It amazingly went away after pt massage of my traps and back (after heat), loosening of my pec muscles, combined with posture improvement and gentle back strengthening. Good luck.
Everything is okay. Trust yourself, and do not live from a place of fear.
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