I am about to start Enbrel. I know it's been about for a while, but could anyone tell me what to look out for. What side effects have people had with it? Does it affect your hair? Do you need to watch what you eat and drink? I have had Psoriatic Arthritis for 7 years now and tried everything! Recently had bad flares with skin and joints, so consultant has suggested I try the biologics. Starting Enbrel next week.
View 3 RepliesAfter 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?...)
View 22 RepliesI am on my second week of Enbrel injections and my second week of taking Celebrex, I have been on MTX for the past 3 months. So now that I am taking 3 different medications I seem to be having some new side effects. Mostly night sweats and I mean drenching night sweats and a moderate sore throat. Feels like half my throat is swollen and it just stays on the edge of moderately sore. Both of these symptoms started about 3 days after my first injection of Enbrel and my first dose of Celebrex.
My question is does anyone have any experience with these side effects and how long until they subsided on these medications?
Pills for RA are not working for me so rheumatologist is suggesting self-injected Humira or Enbrel. I read the side effects and they are scary. Especially it can cause heart failure even if you don't have a bad heart. I'd like to hear from any of you who are on these drugs and your experience with them.
View 2 RepliesI 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.
I have been to the hospital today. I have been treated for psoriatic arthritis for about 5 years. My consultant says that as I have tried everything else, without success I now have to decide whether to have Enbrel. I am a bit concerned about the side effects especially increased chance of infection. While I was on methotrexate I had quite a few infections including shingles.Also not keen on giving myself injections
Not taking anything is now causing deformity in my joints and tissue inflammation so an important decision.
how are you finding it? I am a little concerned about some of the possible side effects, in particular the one with abdominal problems and having to take antacids, as I take lansoprazole twice a day.
View 19 RepliesI'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.
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.
View 4 RepliesI 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.
View 6 RepliesI've been taking the Enbrel injection for the past 4 weeks and this last week I have a red raised itchy rash where I inject myself. My nurse has told me that this is normal and usually around the size of a 50 pence piece but mine is a lot bigger than that! So I'm looking to see if anyone else has suffered from this and which creams can help? My nurse said an antihistamine cream will help but I want to make sure I get one that will work because it's so itchy!
View 1 RepliesIs anyone else out there taking Enbrel 75mg per week?
For years, my doctor has had me on three 25mg injections per week. I know that the recommended dose is 50 mg per week, and I know that studies by Amgen showed most people got no added benefit from the larger dose. But I also know that for a very small group of us, the larger dose is what's needed (out of all my doctor's patients, he said only 4 responded to the higher dose, and responded well).
After years of paying, my insurance company now has a problem with this. Which puts me in a situation where I risk the stability of my RA or pay an enormous bill.
So, I'm just wondering how many others are like me, responders to the higher dose? And if anyone has found a cheaper source of Enbrel (besides the Enbrel Assistance program which is like a catch-22 -- they only help on insured Enbrel, not Enbrel outside what insurance covers.
My Dr gave me a sample of Enbrel to try while waiting for my insurance to approve treatment (they didn't but that's another story).
The Rheumy nurse attempted to show me how to use the pen and pulled the pen out too quick and squirted most of the medication on the floor. My Rheumatologist gave me another pen and told me just to do it at home since I was comfortable doing it myself. That was two weeks ago. Today I have these huge red spots a small one where the nurse tried to inject and a huge one where I injected.
It's very sore and is getting more bruised looking as the day goes on.
I had been on a prednisone taper and have been off prednisone for 2 days now. Has anyone had a delayed reaction like this? Or maybe the prednisone was keeping this at bay? Your thoughts please?
I have been diagnosed with Diverticular Disease but I get a lot of pain in my right side' also at the bottom of my tummy it feels like I have pebbles rolling around. I have also had a gastric bypass 5 years ago so eating bran is something I can't do and to be honest don't need as I go too much as soon as I eat I am in the loo and I am so scared when I go out because I know if I get a little anxious I need the loo and I won't eat out because of the same reason. It feels my life revolves around the loo day and night and I am getting so drained and tired by it all. Can anybody help please my doc don't seem to know what to do Thanks for reading x
View 22 RepliesI am taking one 5mg Prednisolone every morning. The shoulder pain is now bearable and goes after about an hour. I have no problem with swimming - no pain at all and the sauna is bliss! My beany bag is indispensable and very comforting if the shoulders ache during the evening.
What is the real cause of this ailment? Stress? My GP has put me on to Mindfulness and I am going to to go in for meditation as I am sure it will help.
What about diet? I have stopped drinking tea and coffee and do not touch alcohol. A friend has recommended red vegetables ...
I had another bad night's sleep last night even though i took my medication before i went to bed at midnight. At about 6pm I had my last meal which was Ham off the bone new potatoes and baked beans.I later had a cup of tea and later still some Wine Gums as a sweet treat. So in your experience I am i correct in assuming that it was the ham that caused my problem rather than the other things I ate. By what I have read I think I am lucky in what problems I am having compared to many of yourselves but it seems to me that as time is going on my illness is getting worse.
View 36 RepliesI'm 40 years old, mum to 2 girls 16 & 11. I just been diagnosed with psoriatic arthritis and I'm so scared and confused, I'm looking for people in the same boat to help me understand what I'm going through. I have suffered with scalp psoriasis for about 10 years. For about a year I had the odd pain here and there, but nothing I thought was worth going to the doctors about, but 6 months ago my knee started to hurt more regularly but I still put it down to getting old. One night I woke up in excruciating pain on my knee, could not move it at all, took a couple of hours with a bag of frozen peas to ease the pain and after taking painkillers the pain went and I carried on with my life. Just under 2 months ago that same pain came back but not just my knee, my shoulder, my elbow and my neck were affected too. I felt like I was paralysed by pain and had to be practically carried to the GP. That was the first time I ever heard of PA...I didn't even know it existed. My GP suspected it and sent me to loads of blood tests, and prescribed a load of tablets. A week later the pain was not easing so back to the GP and this time he gave me stronger co codamol and the pain started to get better. Another week and the blood tests results came back and showed inflammation, very low vit D and folic acid, so GP gave me supplements and decided to give me a 3 vial steroid injection, which he was hopeful could relieve me of pain for a month, while I was being referred to the rheumatologist. I was pain free for 3 days and then it came back with a vengeance. Back on the co codamol and naproxen but the pain was easing just a bit, I couldn't sleep as I any position made something hurt. GP asked for an urgent referral, but that got lost and despite me trying to get things moving, nothing was happening fast enough so I went private, got an appointment within 2 days and a diagnosis. I started methotrexate 2 weeks ago, which makes me very sick and diarrhoea for 3 days, then it settles. Still on co codamol for pain as I refused the steroids the rheumy wanted to prescribe. My life has been turned upside down, almost every day I wake up with different joints hurting. I feel like the pain is eating me away, it's so disheartening when I can't even prepare my child's lunch box because my hands won't allow it. I work through an agency and they are on the verge of getting rid of me because I have taken the odd day off when the pain is just too much. I have been on anti depressants for years and I feel my depression getting worse, I don't want to leave the house or see anyone because I feel so so low. Will it ever get better?
View 32 RepliesI am a 46 yr old female - presently suffering with sjogren's. I was diagnosed last year and didn't feel any real symptoms coming on at first. I'm now suffering with painful wrists, dry eyes and
dry mouth, I have thrush and also fatigue. I've had 12 teeth removed. I read up that any stress can make sjogrens symptoms progress. I believe it's also affecting my concentration too.I am trying to stay stress free at the moment. Although it's difficult as I have just lost my job, through illness. My doctor has confirmed that everything I am suffering with at the moment is down to sjogrens. I feel quite overwhelmed. I was wondering if anyone knew of any dietary changes that I can make.
I am a woman of 56 and have never been overweight and up to these eleven years ago enjoyed good health.
My first symptoms started eleven years ago whilst on holiday in France. My elbow and knee joints became difficult to move and painful, particularly when carrying shopping. A fortnight later on my return to England the pain had increased, my ankles had started to swell and I felt generally very unwell, not unlike an onset of influenza. My doctor thought it may have been an insect bite and prescribed a course of antibiotics which had no effect. He then tested me for Lyme's Disease and put me on a further two courses of antibiotics, none of which made any difference. The Lyme's Disease test was negative.
By this time, six weeks from the first symptoms I was almost bed-ridden. The joint pains were almost unbearable, I felt itchy all over and isolated little bumps that were extremely painful to touch appeared under my skin, two on my hand and one on my rib bone. After a couple of days they disappeared and I was left with bruises. Some of my knuckle and finger joints were swollen and started to become slightly deformed. I found that I was passing water about every 30 minutes and had pronounced anxieties, insomnia and depression....I had never suffered from depression before. I also started to experience heart flutters and eczema in my ears.
In desperation I began searching (pre-Google days) for clues in some home medical dictionaries. I came across gout and one of the recommendations for managing this affliction was to cut out all rich and fatty food. Although I knew I did not have gout I thought my problem may have been related, particularly with my swollen ankles which by then had turned a rather nasty brown colour. I decided to experiment and immediately cut out cheese, butter, mayonnaise, oils and fatty meats to achieve a very low fat diet.
Within two days I was feeling much better and over the course of the next month I continued with my experiment and found that within about 24 hours of starting on a higher fat diet again my symptoms would begin to return. Over the next four years and after spending a lot of money on private consultations with no diagnosis being given my doctor eventually referred me to the Royal National Hospital for Rheumatic Diseases in Bath. The consultant diagnosed Poly-Reactive Arthritis. I told him about my very low fat diet (under 20 grams a day) which I had been trying. He said if that worked for me I should keep doing it. Subsequently I developed lactose intolerance. Symptoms from this appear two hours after eating any dairy but I have not found any known connection between this and Reactive Arthritis. I also developed problems in my lower back and X-Rays confirmed that this was caused by arthritis. I am unable to lift even fairly light weights and cannot operate a vacuum cleaner without getting severe back pains for a couple of days.
The diagnosis of Reactive Arthritis was six years ago and if I keep to my very low fat diet I am able to lead an almost normal life. However, I now find that in the past year I have had an increasing amount of urological problems such as cystitis and what were though to be bladder infections, although all the urine tests proved negative. I have also been investigated for possible kidney stones but again this has been negative although on one occasion there was blood in the sample. I have found out in the past few days through Google that symptoms like this are often associated with Reactive Arthritis and called Interstitial Cystitis.
Recently I found the web site for the Arthritis Research Campaign which has a very good information booklet on Reactive Arthritis and in an answer to my questions advised me that cutting down on fat can make a difference in most types of arthritis including inflammatory arthritis, particularly saturated fats which can increase pain and inflammation in the body.
They directed me to their information booklet Diet and Arthritis on their web site at www.arc.org.uk. In this publication they recommend concentrating on oils such as olive oil, walnut oil and oil from fatty fish. I thought I would again experiment and only eat the fats they recommended even though I felt sure that too many olives and olive oil dressing would cause a reaction. Twenty four hours after crossing my 20 gram threshold my symptoms reappeared then slowly subsided after I returned to my strict diet.
In all of my research I have not come across any suggestion for treatment of Reactive Arthritis by a low fat diet. I only know that it has worked for me so far.
For those that have tried the gluten free diet, how long before you saw results, if any?
View 8 RepliesIm reading a book at the moment on how to recover the immune system. It mentions cases where people with RA that have removed gluten and dairy from their diet for 6 months had no indication of RA in their system after 6 -12 months. Sounds too good to be true. Has anyone tried it? I'm going to give it a go, nothing to lose.
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