Ankylosing Spondylitis - Enbrel
Jul 27, 2012
I'm 34 years old diagnosed with as last year after over 10 years of agony with no one listening. Finally I got the diagnosis and my rheumatologist started me on enbrel last Nov. The change was unbelievable. Since then I have put on 21lbs even though I have improved my diet. For the last few weeks pain has been creeping back in and I've started using co dydramol again. I've also started with chest pain (not the as pain I had before in my chest). This has resulted in having ECG and being put on aspirin and statins. I've also had an echocardiogram today as there were minor abnormalities in my ECG. Wanting really to talk to people on enbrel. Have they had any of these side effects? Did the drug stop working as well at any point?
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I have recently been diagnosed with AS. At my last hospital visit the consultant gave me a self assessment form about my level of pain and mobility. I have to complete it again in 2 months when I go back to see if there has been any change - the consultant did say it was very unlikely there would be, but there is a process to follow. Anyway, she said when I return I could choose between Enbrel and Humira, and gave me some literature on them both. I understand that everyone is different, but wondered if anyone else could comment on the highs and lows of both drugs. I am 44 years old, and the main problem is in my neck. I can look left and right, with limitations, but cannot tilt my head to the side or look up. The anti-inflammatory drug that has so far worked best for me is Naproxen. Also do you have to continue with painkillers or are the injection a replacement for the anti-inflammatory drugs only.
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I'm 30 years old and have suffered back pain and knee pain to an almost debilitating stage and the fatigue can be immense. I've had this since I was 17 ish. Quite often out of nowhere my knees will 'pop' or 'crack'. This can be when I'm walking, starting to sit, try to kneel or even stand still! Sometimes the pain is horrendous. I've also noticed my back has become less flexible over time (in fact my whole body). My calves feel heavy and my feet hurt like crazy. I find it hard to sit for very long without my spine hurting. My wife has tried massaging my back, but she hates it because she sees the pain I'm in. I have been to a Chiropractor, but I seemed only to get worse! I have been to the Dr and they seem to only want to look at one thing at a time rather than collectively. However, I do get some violent jolts or shakes which has been diagnosed as Myoclonus. It has been suggested by one Dr that I may have Fibromyalgia, however, I read through the literature and although some of it sounds familiar I'm not so convinced. By chance I then read an article in my local newspaper drumming up awareness of AS. I'd never heard of this before so I googled it and I would say the symptoms described struck a chord with me. I'm yet to discuss this with my Dr. Has anyone else found the same awkwardness in regards to getting to the bottom of what their suffering from? I'm convinced my mother also had it, although it was never confirmed. I can remember how much of a struggle daily life was for her. One Dr even tried telling her she was a bored housewife and that she needed to get out of the house more! Unbelievable. Anyway thanks for reading this, just trying to build up more of a picture of what it is I have :'
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Hi. I have recently been diagnosed with spondylitis and I also suffer with spondylosis. I was in a lot of pain, so took myself down to A&E. A doctor came to see me and sent me off for an x-ray. When the x-ray came back I was told I had spondylitis. I asked was there some kind of mistake as I already had spondylosis, I was told no, this was just something else to add to my list. I was gobsmacked to say the least. This bout of pain hahas now eased. I have done some research on this, not realising that the pain would come back. I would like to know how other people cope with the pain?
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I am 45 year old female, since my late teens I have suffered from what I always thought was sciatica, I would get bouts that could last weeks and although no proper diagnosis, DR agreed with me that was what it could be. Ive managed that through the years (and believe sometime the pain has been excruciating) with various pain relief concoctions. I would also always have an aching back, and if stretch too far its feels like something in lower my back has been ripped. As a florist for nearly 30 years I put most of my aches and pains down to the job (floristry is a hard, cold and very physical job).
Also at 19 I had my first bout of iritis, I've had it four times now in all, the last time being in 2009. The eye doctor I saw though it would be a good idea for me to have a blood test as he said iritis is a symptom of something else.
So I had the blood test and it showed the HLA marker, I was then sent to a rheumatologist who took an xray, told me I was hyper mobile and that was it...
To cut a long story short, I have been back and forwards to the docs since then. Various referrals to physio who give me exercises (which I do do) and then dismiss me. My legs now hurt sooo much, all the time in fact, I'm not unfit and not overweight (I did leave the florist 2 1/2 years ago) and although work from home, I walk the dog three miles every day. But this is more than aching legs - I can't get up the chair and as for getting up from the floor, forget it. I have to hold on when I go upstairs and lower back is constantly aching
My body feels like that of an old lady.
Incidentally, I developed a frozen shoulder in January and a lump at the base of my neck which physio said was down to posture!!!
Was back at the docs today who finally said she would refer me again as its sounds very much like AS
Does anyone have any tips on how I can get them to take me seriously, I have only ever had one x ray in 25 years but I just can't cope with my body feeling like that of 90 year old.
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I have read on several message boards lately that there could be two new anti-tnf drugs coming to the market soon. Would that make the total 5? If so then does anyone know when these will be available to the UK market?
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Has anyone suffered a bad reaction following a spinal MRI scan?
I suffered (and am suffering) terrible muscle pain and muscle weakness following an MRI scan one month ago.
My scan was standard (i.e. without a contrast dye being injected into the blood - I know the dye sometimes causes problems) and I have so far found two people who have suffered a similar reaction.
It feels as if the scan has "stirred up" my immune system to produce inflammation in muscle and joints in my right leg and right arm.
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I have been diagnosed with Spondylitis in the top of the neck it's not the tightness or the pain it's the way it's affecting my balance! I also have a inner ear problem so not sure what is causing the Vertigo or could it be a bit of both can anyone out there help before I go crazy thanks!
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I am new to this forum so I apologise if I am doing things wrong. I have have AS for many years, well controlled with NSAIDs but plantar fasciitis is causing me a lot of pain at the moment. Does anyone have any ideas about the best sorts of treatment? Most web sites seem to concentrate on PF caused by running, being overweight etc rather than AS? If this has already been discussed, could someone direct me to the relevant threads?
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After a two year battle with every drug going and being so terribly ill with AS my consultant has decided we need to move onto anti TNF after trying everything else with very little or no success.
Can you please tell me everything you know about anti-tnf. Was it is successful? Did it give you a life back? Does it stop the pain? Does it help with the fatigue? I am so worried about trying it, but need to urgently do something, as quality of life is very low and nothing else seems to work.
I need both my hips replaced, does anyone know if it helps with hip pain?
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I wanted to hear some of your experiences with pain management doctors. I have been involved with pain management doctors (usually anesthesiologists that have branched off into this specialty) for about 5 years now. Frankly I continue to see them since they have provided me with hydrocodone during that time and this does help to some degree. However, I have also tried many of their various treatments. I have had epidural injections, nerve ablations, trigger point injections etc. etc. Most of the results have been very minimal if anything and any results that I did get certainly didn't last very long at all. I was wondering if it is very common for people suffering from AS or one of the other related inflammatory diseases to seek help from pain management doctors. Have any of you actually been helped to any significant degree by them? For the most part I don't believe they really understand the inflammatory process. They ask me where it is hurting and when I tell them everywhere in the lower back they look at me like I'm just a hypochondriac. They assume that the pain has a specific source and their treatments should be able to fix it. My pain is severe but cannot be localized to one source. Have any of you worked with pain management people and has your experience been different?
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I am a vocal coach, and around about 30 students a week. I have developed Spondylitis in my hips and my Dr prescribed Enbrel after a 2 month period of taking large amounts of Aleve and cortisone shots in hips and sacroiliac joint. I am terrified of the side effects. I teach voice all day and that is my income. I am afraid of getting sick and losing work but the pain from the arthritis can on some days be very depressing. Feel between a rock and a hard place.
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I'm started bending forward due to AS, my neck has also bent slightly rightwards. Will back brace assist in keeping my posture.
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Does anyone else have flare ups of a sore throat and sore oesophagus, the Dr thinks it's acid reflux, ppi's aren't doing anything, now being tested for h pylori bacteria, but can't help thinking that it may be connected to my ASR
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My mom has been suffering from rheumatoid arthritis for 10 years now and her new doctor prescribed Enbrel injections. I’m trying to help her out since she’ll need to inject herself and I’ve been reading up on guidelines how to use this medication, but I’m not sure what effect on will it have if it’s been kept on the room temperature before we realized it should be almost always refrigerated? It was outside only for two hours at most and I’m hoping this won’t make it completely ineffective since it has to get adjusted to the room temperature first before it can be injected safely? Or could using not refrigerated Enbrel cause some side effects? I’ve been trying to reach the pharmacist, but no luck so far.
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Acquaintance with a different condition has had success with it. Just wondering if it is prescribed for PMR?
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I'm hoping to start a clinical trial for Enbrel beginning in May (they need me on MTX for 3 months before I can start the trial) and am wondering if anyone that has used it or is on it currently can tell me how they're doing on it?
I woke up this morning with that heavy duty exhausted, malaise feeling that I felt for so many months before being diagnosed last summer. I had to work a mandatory training 40 hours last week, played catch up over the weekend and worked another 8 hours yesterday. I woke up to that heaviness in the chest; not a sick like heavy as in bronchitis or chest cold, but literally like someone was draining my insides out. I am emotional today and that's what happens when I get these episodes.
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Hi everyone, I has been take Enbrel (Etanercept) 50mg for few years.
I've got many boxes with 25mg now.
The medicine manual prescribes the only way - to take 25mg every three days (instead of once a week with 50mg)
I think there will be twice more holes in my belly I don't want it.
So does anybody knows can I combine two doses 25mg into one 50mg?
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After 8 months only on pain killers and a visit to yet another rheumy (who happens to be a head of the department and a boss of the last two that I saw... Sorry, semi vegan diet. Ha. Not funny... plus, he lost my medical records from the past visits...) I am switching to Enbrel as soon as it's approved. What side effects should I monitor except for the obvious ones? Does anyone apply ice before the injection as with Humira? (does it help?...)
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I started Enbrel 4 weeks ago. For the first two weeks I had no rash at all. After the 3rd injection, I got a rash of size of say 2cm over 5cm with swelling that disappears after 24h. The rash itself disappeared after 6 days. After the 4th injection (this Saturday) the rash appeared and is now about 3.5cm over 6 cm and is lasting 2 days with swelling. Itches, hot and bothering. I wonder if it is going to get worse or if the size of the rash and this semi allergy reaches a critical point and that's it... Saw some scary pictures on the net. Wonder if it really gets to the face and back, etc.
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I started the Enbrel injections yesterday and the only way to describe me today is a zombie - hardly keeping my eyes open. Sugar and coffee intake improved nothing. Taking ibuprofen yesterday eve (I thought that it might be a flu) made it worse. After a quick browsing, I found that some people experience such effects but I did not find if this is a temporary thing or is this a permanent side effect.
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