I have had a first meeting with my Rneumatology nurse (despite idiot taxi company trying to scupper my chances of getting there. Went to pick me up from the hospital instead of taking me there as I had asked! I despair) yesterday afternoon. She was lovely and laid back and went through the basics of injecting the biologics and the click pens of each of the above three and also general anti TNF info. As I had done so much research and had great advice here, I didn't have pages of questions to ask her. Just a couple of things. She has given me a very extensive (and heavy!) pack for Humira, a reasonably big one for Enbrel and a little brochure on Simponi as it is not as established as the other two. Simponi has an advantage of a monthly injection but that won't be a main reason to choose for me.
Had bloods done for screening all the usual. Chest xray to do next meek. Awaiting TB test appointment. Have also to have a root canal done first too which dentist will give me antibiotics for as standard, as when you have your tooth/mouth exposed for an hour like that it is precautionary. Lots to sort before I can start but hopefully in four weeks. I have to let the nurse know which med I want to have in two weeks once I have read all the info she has given me and made my choice. Having a break from research for a couple of days then will get all the info she gave me out and read with a clear head.
NK
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Neonkitty
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simponi newer not so much safety data but looks promising it is the most expensive of the the three ,
I am potentialy??!! being offered choice oh humira, enbrel or cimza cimza is a needle the other two come as pens which I have seen enbrel looks the easiest and out of my three if I "PASS" TWO !! DAS scores I am chosing enbrel xxx
Hi, are you in the Chester area? I think that not all areas offer this choice -where you go away and think about it -after all what qualifications do you have to judge which is best? Surely this should be suggested by the Rheumy. I chatted with my Dr about this and we actually decided it was a delaying tactic! Good luck with you choice -I chose Enbrel but I am afraid it didn't work, although it worked a treat on a friend of mine.
I just wanted to say not to discount trying the injection (rather than click pen).
I was timid as a mouse when I was taught how to use the Cimzia needle, but absolutely amazed when it didn't hurt and was so much easier than I anticipated.
I'm now on Humira and still choose the needle, and it still doesn't hurt to do; however I'm on a facebook group for Humira and everyone who uses the pen faces horrible pain every time.
I understand the reticence, I sat with the needle poised for about 5 minutes before I could go for it, but there was a nurse with me (that's part of the deal) and she taught me great technique.
hi ive just been taken off enbrel which as served me well for over 2 1/2 yrs,consultant says its not working for me know,ive been in considerable pain for about 8 weeks now had to go on sick from work,cant go back untill i have all clear to say i,m fit for work,theres no light duties they say at my place of work,anyway been given humira,and was very interested on the face book group for humira can you give me details of how to join.thanks julie x
Hi Julie, Humira seems to be very effective, I hope it works well for you.
The facebook group is a good group to belong to and ask questions in. The name's too long to write here, it starts Humira (adalimumab) users... This link should take you there facebook.com/#!/groups/1397... (first time round this link didn't come up as a link, so you might need to copy the url into your internet browser)
There's also a UK based one called Humira misfits uk.
These groups include people who take Humira for other conditions.
Hi I am on Embrel, and I would prefer that to the actual needle. Good luck with your choosing.
I was in the same boat as you last October, offered three different ones and told to go away and make my mind up, very hard decision to make. I read up on them and I decided on Enbrel. I was worried about side effects and came to the conclusion that because I was injecting one a week, if I did have any reaction there was not much of the drug in me. You've mentioned Humria that you inject every two weeks and Simponi that you inject every four weeks. I know that injecting every two weeks or four weeks might sound tempting, but if you did have some sort of reaction there is more of the drug to get out of your system. Well that is how I viewed it at the time. I was already injecting MTX so injecting myself was not an issue.
I was advised by my RA nurse to inject rather than using the pre filled pens, she said that with the pens there is a sudden sharp pain, but if you inject it you have more control of how it goes in. I do it very slowly and I have not had any problems at all, no stinging nothing.
When I had my first assessment for anti tnf's my DAS score was 7.2, quite a high score, my RA was bad and I was given a steroid injection that day. My second one was 5.8, I am sure that the steroid injection was still working then because I didn't feel too bad. A few weeks later I was really bad again and had to start taking oral steroids. I have had two assessment since (6 weeks and twelve weeks of taking Enbrel), saw my consultant last week (week 13) and was told the fantastic news that I am now in remission. DAS score of 2.1, I have weaned myself of steroids so my last DAS score was a true reflection of things.
I did find out that Enbrel was the choice of my consultant, after I had decided on Enbrel, I asked the consultant what was the difference between Enbrel and Humria and he did say that the most important difference is that I am less likely to have side effects with Enbrel, something to do with anti bodies.
It really is a difficult choice to make and if you are struggling ask your specialist nurse for advice. I wish you well with what ever you decide to do and hope that you have the same result that I have had.
Just want to add that I had an immediate response to Enbrel.....the next day after injecting it I felt so much better.
Thank you Paula for your message. I think too the same about Enbrel and being less of it on you on a weekly does etc. I can only hope for am early response to it like yourself. That is great how it has worked for you. I have been used to injecting MTX, but she said the biologic pens are much better. I do like the idea of it going in slower though. I will discuss this with her when she phones me.
Take care and glad Enbrel has worked so well for you! Will let you know what happens.
Summer - hope you are offered Enbrel and it works great for you ;-). I think it looks as though it is the one I will choose but I shall read all the info they gave me this weekend. There is a lot to look at. (Heavy bag full on dining room floor!!) Be as informed as one can be. Hope you get your Enbrel soon. Sounds like you really need relief too from what I have read on your posts. xxx
Georje - fully understand how some people prefer the ease of a pen and don't see the needle if they don't like to etc. Think I would prefer what I know and a slower needle but I won't decide just yet.xx
Sail away - I asked the Rheumy nurse re the Enbrel pen and she said none of her many patients had said about an awful acute pain on using it. I didn't ask about the Humira. If people say it does .... Then it does for them. Fact! I am not sure if there would be a problem asking to change from a click pen to a syringe if I found it was so painful so will ask her.Healthcare at Home would come to guide me through the new biologic. I attended MTX sub cut at the hospital when I first did it. I actually did it myself first time under her strict supervision. She said I was a natural!! Just beginners luck. I was soon sent off to do it myself. All depends on how you are with needles and your dexterity in your hands I guess also. Also if you feel a little freaked out by the drug which I think I may do at first! xx
Paula - great for your DAS! Just great in general!! I haven't been told mine as such this time (just I am well over the 5.1 etc) as the Rheumy nurse didn't do one on Wednesday. The nurse said when my Consultant (the head of Rheumatology and also a GP) saw me for my last joint injection last month that she didn't need to. She assessed me there and then as she looked at me!). Also my ESR/CRP tests have been high consistently apart from a dip/lowering due to the steroid injections. xx
Tilstongal - I am in the West Yorkshire area. Presume it is the Hospital Department's policy or Health Trust's policy here to offer a choice. It isn't always in all areas then it would seem. I actually think I ... We .... SHOULD be offered a choice. I feel it must be in their eyes that all three offered etc have the chance to be equally as successful and that all carry risks. Obviously Simponi newer so not as much data/feedback etc. I think that if my Consultant thought I was not able to make a decision myself she would tell me her view immediately. Some people I am sure she may guide more. She has known me 17 years. When I saw her last month as she injected my knee, she said .... I would like you to be on a biologic now. (we have spoken before about it) She said ... There are three choices we can start you on and I would like you to see the nurse ASAP. The nurse has been impartial at this stage. I just know the majority of people do choose Enbrel from what she has said. Wants me to speak to her in ten days with a decision. I don't think in my case it is a delaying tactic for biologic approval etc as apparently they already have approval for me. Just need to register me with the Trust and delivery etc for the specific med I choose. I am sure though it could be a tactic in some instances. Sorry Enbrel didn't work for you and hope something else is helping you. xx
Thank you lovely people for all your help and advice. This is such a fantastic place to have with so much support and friendly and practical advice. I shall keep you informed and hopefully my experiences will help others along the way. I do hope so. Speak soon anyhow.
Neon kitty xxxxxxxxxxx
( and hugs too!)
Hey Neon Kitty,
It's pretty cool you get to choose your own biologic though it's probably kinda daunting making a decision like this I am on Simponi and it is amazing (I keep saying that - I start to sound like some kind of fanatic lol), my symptoms literally vanished within 5 days and they haven't come back so far either. So if you want any more information I can get you some information on Simponi I haven't had side effects either except bruising at the injection sites (starting to look like a blue leopard on my left thigh lol) but as it's not summer yet and not time for short skirts I'm not worrying yet!!
Good luck with your treatment, whichever you choose !!
I use to get bad bruising on my stomach when injecting MTX, told specialist nurse and she told me what I was doing wrong. I always pinch some flesh hard before I inject, I think it numbs the area a bit, probably doesn't but I do it any way. Trouble was I was not letting go once the needle went it I waited until I had finished doing the injection. Obvious really when you think about it, there would be some bleeding under the skin from doing the injecting and silly me by keeping hold of the area was just making it bleed more.
Ha, I think you've solved the mystery of my blue leopard print thigh!! It makes perfect sense - my nurses do my injections (I am way to terrified that I mess up and waste about £1500!) and they always pinch the flesh so I won't feel the needle going in because it does numb the site a bit. They don't usually kep on pinching but I did sometimes when I was still injecting MTX and the nurse did it today too. So that explains it
Hi Swissmiss, if you know of any good links for Simponi online that would be very useful thank you! AJ I amkre ,inlet to be wearing a maxi dress this summer with my legs!!! Seriously it would be nice to be able to wear shorts and not have big bloaty knees due to the inflammation of my RA. It shows there quite easily snd quickly when I flare! My nurse said i wijt have all that once a biologic brings down the swellings. It would be so great if it did. I am hoping it is going to work whichever I choose! I am so pleased Simponi has worked so great for you. It is so encouraging to read and know people are living pain free, mobile lives. Take care and thank you!
I don't know if you have that one already but this is closest to what I could find online to my information leaflet (well more of a novel than a leaflet lol and unfortunately it's in German). It's the one also aimed at pharmacists and health care providers so it's more detailed than the Patient Information leaflet and it has details about efficacy studies, a more structured list of potential adverse reactions etc. I've really found it very helpful x
If you already have that one, let me know and I'll have another look and see if the one I have is available in English somewhere
And please don't be put off by the list of side effects, I haven't experienced any so far and as long as they keep doing bloods every once in a while they'll pick up anything serious well in advance. I would not want to give up my Simponi for anything. I've just had my injection today and been taking the Leflunomide for the 2nd time and I haven't experienced any symptoms despite ditching the MTX so I think my anti-tnf is doing all the work, not the DMARD.
I know where you're coming from with the bloaty knees!!! I used to have 4 knees when my RA was active, because the swelling and fluid was so pronounced that another blob was forming above each knee lol It wasn't funny though trying to walk, never mind climbing stairs! I had to have the fluid drained and knees injected with steroids 3 times within half a year. Otherwise I would not have been able to perform the simplest of task. I remember the agony of trying to get into the bathtub to attempt to take a bath as that was less painful as showering. Or scaring all the little children in the neighbourhood with my bandaged knees and wrists and dealthy pale sweaty face, hobbling to the shops haha
I'm really happy you're getting on a biologic soon and I hope soooo much that it'll change your life the way it did mine xx I hope in the future, these kinds of drugs will become much more available!
Sorry, couldn't see what i had typed at the top. Looks like a foreign language!! Meant to say I think I will be wearing a maxi dress this summer with my legs!! ... And thst my nurse said I won't have the swelling/inflammation once on a biologic!
Re the pre filled pens. My specialist nurse told me that using the pen can be a shock and she has known patients letting go and the pen and the drug flying around the room. I've injected myself today and I took my time as normal and again felt nothing. It really is down to what a person feels comfortable doing, not that I am comfortable at all in injecting myself with drugs but I know I have to do it so I just get on with it.
Enbrel comes in boxes of four and you get two months supply when it is delivered. I too have Healthcare at home. If you try the pen and don't like it I assume that you will have to wait until your next delivery to use a needle, I can't see them swooping them. I don't know if you could ask for a box of each and then you could try both.
I don't know about travelling with Humria, but Enbrel can be kept out of the fridge for up to four weeks as long as the temperature does not exceed 25 degrees and you can still use it, a big plus for me.
Hi Paula, thanks for Tje message. I am pleased to know that Enbrel can be kept out of the fridge like that for travelling and I presume there are cool packs to preserve it in transit. I would think too if I asked tk change from click pen to normal needle that I would use what I had first, especially with it being so very expensive. I can understand too if someone felt so much pain and shock that their
reaction was to let go of
it. Did your Healthcare at Home person actually do the injection for you first time, or supervise it? I don't mind either
way. I will brace myself for some pain then won't be shocked. I am more anxious that noting will happen for me with the biologic. Anyhow I trust you are feeling much much better on Enbrel and long may it continue.
The drug once taken out of the fridge cannot then go back in, all of this is mentioned in the instruction leaflet that is inside the box with the needles. Just want to clarify that.
Healthcare at home will provide free of charge a digital thermometer that I was very impressed with. There is a probe that you can put inside the cool bag, this is attached to wire so the temperature display is outside the bag. Was impressed with it. I went away last year for four weeks not long after starting Enbrel and because I had just started the drug and was being assessed for it I wanted to use it at it's optimum best so we did keep it cold for the journey. I did put up a post on the NRAS members forum of how it was done and links to things, if you like I could try to paste it on here. Now that I am established on the drug, I think in future I will not bother and just put the needles in my hand luggage.
When the nurse came out she watched me inject it myself. I was already used to injecting MTX so I didn't have a problem doing it, it was just the thought of what I was injecting and was worried that I might have some sort of reaction to it, I had heard of people having bad reactions to infusions and was worried. The nurse did stop with me after I did it to make sure I was OK. I have done a blog of this on the NRAS forum of what happened, a bit long must admit, but can again try to put it on here on send it to you in am message.
Hi Swissmiss, I haven't seen the website you gave me so that's new to me - thank you -and I shall be looking tomorrow/Sunday with all my tomes of other info! My knees have been like big dumplings for many years on and off. Never dared wear anything which revealed them. My sister in law said I had "old lady knees" (not a very kind or supportive comment was it?!) and as I am a very young looking 53, I shouldn't have to be covering myself up in the summer. Need air to my legs as they otherwise look like two wax candles!! LOL! Straight up and down and disgustingly White!! I don't go for sunbathing, but would like some natural light and heat on them! I too have been having my knees drained and injected three times a year. However, this time fluid would not come and I was told it was inflamed tissue making the knees go big (apart from the Baker Cyst which he said was "localised".) The Baker Cyst has subsided but they have a nasty way of coming back. I am very sorry you have had such similar knee troubles. What is so encouraging is that your biologic has taken that away! Two knees now instead of four! Thank you for all your words of encouragement - you are a darling, as are all of you.
Ah, I always wonder what people think they'll accopmplish with silly comments like "old lady's knees" etc! Like when I was at the Job centre last year and the lady there - when I explained I couldn't do manual labour anymore and was looking for something office-based - she said that I wouldn't be able to type "with fingers like that" and that "any employer would be put off seeing that" and that I should contact the disability benefits people (I've refused). Then I've been told countless times that I'm too thin, which I am well aware of - do these people not think I have a mirror and scales? Sometimes, I really despair!! These days I just act astonished and say I hadn't noticed lol and thank them for bringing it to my attention. Most of them don't hear the sarcasm though
Anyway, I hope the Simponi information is of use to you ! My rheumy chose my treatment for me, it was a close call between Simponi and MabThera but knowing that I have an issue with the idea of infusions he went for Simponi.
Let us all know what you decide And good luck with going through what is probably half a medical library by now
Hi I had Enbrel first as for me psychologically doing something made me feel better, but it didn't work for me. Interestingly I just had a debate with my rheumatologist over Humira v Roaceterma, as a study was just completed in Newcastle by an eminent professor here which showed higher remission rates with Roacterma, and was reported on in the daily mail, so all the time new info is coming to the fore for us all. Whatever you choose it has to be what you feel comfortable with. The Rheumy in e end chose Humira for me!
Hi Allanah, I hope Humira continues to work well for you. It is frustrating when whatever med you take doesn't have the required effect, whatever it is .... DMARD, analgesic,, etc. I don't expect to wake up and feel like Superwoman (would be nice though!!) and i am expecting if anything it may take a few weeks at least. I am jut scared of that awful pain and immobility coming back before I find something that works for me. At the moment the recent hydrocortisone is holding it off. I never heard of Roacterma. I will try search that article and read. Have a nice weekend!
Hi Swissmiss, sorry to hear how rude people were to you at the job centre. People are so crass at times. My fingers are also altered due to the RA. When j had over active thy rid going oit of control and k dropped down t a little over six stones people thought I was on heroin and regularly said so. It was awful to e called name as I was so thin, one woman spread a rumour around that I was anorexic. I don't know why people don't mind heir own businesses and be more sensitive. They should never have said that about your hands and K fully understand as I have some finger nodules and swelling. More on my right than left but are these idiots perfr t themselves? I shouldn't think so. Then are sadly lacking in grey matter. What would the do if they saw an amputee or real disfigurement ... Tell them to go home and not come out of the house!? It is sad people in such positions do this as some people could be very demoralised by it. Like yourself, I would give them sarcasm!
I got used to just taking it on the chin when people are rude and now I like to take the piss out of such people by being sarcastic or else shock them into silence. One time I had a lady approach me in the street and tell me her daughter "also" suffers from anorexia! I put her right and shared graphic details about what the meds were doing to me and just left her standing there stunned lol (I did go home and cried the rest of the afternoon but at least I held it together until I was inside). You're so right I can't for the life of me think why people would be deliberately insensitive?? I mean they're free to think what they want but why actually accost people and spread their unpleasantness? I was taught if you don't have anything nice to say just don't say anything. The other week, I had someone from a shop where I volunteered (!) tell me on the phone that she "doesn't hold my illness against me", what the hell? I didn't respond to that, I guess I was too taken aback at even the thought of judging someone for daring to acquire a chronic illness. The cheek of it!! I'm proud of myself for not yelling at her The ruder she got the nicer I was lol Another great strategy I find for dealing with the likes of her. Still, I won't be going back to volunteer there anythime soon. And to think I even brought them all coffee and 2 kinds of homemade cookies
I am really sad and shocked that people would tell you they thought you were a heroin addict /anorexic I suppose in summer people will think the same of me, especially given all the injection marks on my arms and thighs!! But I think if anything, RA has given me a much thicker skin and a better perspective on what's really important and what isn't. In fact, nowadays I can honestly say that more than anger or disappointment I feel sorry for people who are so narrow-minded that they can't open their mind & heart to people who are just a little different!
Nowadays, my fingers have gone back to their normal size and I have half a mind to go back to the Job Centre lady and show her what my hands could do to her face now I'm responding to treatment
Sorry for going on so much but this is a topic that continues to baffle me!!
Love and good luck with your biologic!! Christine xxx
Hi Christine, Why am I not surprised someone said the same to you about anorexia!!! The woman who said it to me asked if I was angry she emailed and had told some friends of mine I had it!!! Told her I actually wasn't that impressed she had done so. Then a very very large lady used to shout across a crowded public place I used to go to .. You look like you have lost more weight again ... Then everyone used to look and stare! A friend of mine charged over to her and said ...yes and you look like you have @@@@@ found it!!!!!! I would never have dreamed of saying to her ... You look like you have piled some pounds on. I used to hide in hats and big coats. Hide from her. I just used to ignore her in the end. Leave her talking to herself.
What the job centre said about your hands and being slim is so unprofessional. They are meant to encourage you into work and not make you feel self conscious. I had some idiot student I did my degree who asked if I had "heroin chic"!! Yes, I am sure the job centre woman would be very interested to hear you can now pack a mean punch!!! People do disappoint you. I have had a childhood friend say .... "Aww you are rocking from side to side" (much exaggeration on her part - my knee was causing a slight limp and she had taken me round five different shops without a rest) but I actually think she was embarrassed to be out with me. I looked smart and had no "heroin chic" at that time.Also my husband's sister's husband. Total ignoramus. His favourite is to turn round with a grin on his oily little face say ... Come on slowcoach. He has made offensive comments about my RA and my hands and I actually detest him. On my fiftieth birthday he said that now I was over fifty I would smell of pee! I wanted to batter him. Bad enough I had to be with him on that day but it was also a memorial for my husbands father.
I decided quite some time ago that anyone like him I would cut off and not have anything to do with or as little as possible. We don't need these negative people. They are like Harry Potter's Dementors, draining you!! Awful someone would be so crass when you volunteered to do work. They didn't deserve your kindness. They haven't a Scooby Doo! I get asked all the time by taxi drivers why I am going to the hospital??!! They expect me to tell a complete stranger? You are right, Christine, you acquire a thick skin. You have to feel sorry for them and their lack of intelligence and sensitivity. I am baffled too by crass insensitivity. Disappointed. Guess as we would never do it we find it sad. Nice when you meet people who do understand and don't make any unnecessary comments. Just accept you for what you are.
Oh god, your husband's sister's husband sounds like a right pr*ck, sorry for saying so!! Complete strangers are one thing but if friends and family behave like that it's just utterly wrong. What really annoys me is when I actually explain to people what is wrong with me and the drugs and side effects (not that I like talking about it) and they still make stupid comments like "you should eat some cake" even after they've seen me literally green with nausea. Sometimes, I was sooo tempted to get my MTX syringe and just inject them and let them deal with the nausea and then shove some bloody cake down their throat lol.
Love your friend's reaction to the large lady who was rude to you !! And you're completely right there: I'd never make a mean comment about somebody's weight/appearance. For one thing that's just really impolite and for another I don't care in the slightest what someone looks like - it's not my place to interfere unless they specificaly ask my advice/opinion.
I think it's inexcusable that woman actually sent out emails with lies about you. Even if she genuinely was worried about someone having anorexia, surely the normal thing to do would be to take them aside and talk to them in person to see if they can help or find ut what's wrong? And not just spread rumours? How would that help anyone??
Nowadays, I always take real care in my apperance, always make sure I look smart (though I'm usually more the casual type personality-wise). Just because I now know how judgemental people are. I've also taken to wearing large sunglasses and earphohes whenever I'm out so I can pretend not to see or hear anyone
Also, I love the way you describe these horrible people as Dementors!! That's exactly what they are I'll start carrying around some chocolate now whenever I go out to recover from their attacks (at least I think that's what Lupin told Harry haha). I used to think I'm the only one who has to deal with that amount of judgemental comments and I'm really sorry you've had to deal with this as well. It does make me feel less alone though so thank you so much for sharing your expereinces with me!
So, I am going to choose what to wear for my job interview I know I have a lot to offer and if the only reason they don't want me is the way I look then they can f*ck right off (excuse the language!), I'm done with putting up with insensitive and superfical people!! I wish I could be as consequent as you in cutting off unpleasant people but I always think people aren't as bad as they usually turn out to be So I keep getting hurt
Hi Christine, I put up with some real dorks for so long that it wasn't hard to ex communicate a few of them!!! LOL. Some of these people really leant on me for many of their problems too. Just better to make sure our paths don't cross with people like the Bro in law (yuk) rather than tell them to go forth and multiply!! I would rather have fewer true people and friends round me than Dementors telling me to eat cake or whatever!! I don't tell them anything. They would be horrified if they thought I had to inject a drug. Maybe that's a good idea to tell them to get rid of them! These people just think RA is a few aches and I am lazy or a hypochondriac! People probably think we are superstars going round in shades and hats! LOL. When is your interview? I wish you loads of luck and there are many lovely and understanding people out there as well as the Dementors. Am sure you are going to be soon working alongside some nice folks!
BTW the very large lady was very disabled herself so one would think she would have had more understanding but no. She shouted out what she did in a room of about 100 people! I had also encouraged her and supported her through losing a lot of weight. I am not bothered if a person is big or small. Makes no difference. What does bother me is being cruel and mean.
Anyhow we are strong and rise above these things! Lots of lock for the job.
Thanks, the interview went well I had one yesterday as well and one last Thursday. Lol so much activity - can't wait to have a normal life again!!! I really REALLY like the job I interviewed for yesterday, they'll tell me if they want me by Friday. SO nervous! I could have the job I interviewed for today but it's only 60% and only starts in June so i don't think I can afford that!!
Yeah, there are loads of very nice people out there too. Once a lovely lady offered me her gloves in the bus when she saw I was so cold I could hardly bend them! So nice!
I think next time I'll shout "Expecto Patronus" when I meet any of the Dementors lol.
Expelliarmus! I can't recall who it was on here who said that some of the biologic names were like Harry Potter spells!! .... but I agree that names like Infliximab sound very much like disarming charms!
I hope you get the job you want and you hear very soon. Keep us all posted, Christine!
Oh my, fingers bonkers tonight, sorry for typos. Hard it see in that little type box! I meant to type thyroid, and I hope you can just about get the jist of the rest if it!
Paula - forgot to add this bit in before - yes, I would very much be interested in your Enbrel blog, thank you. Will it send with a message to me via this forum? Or an email message. I didn't know the RA click pens/needles could be taken in hand luggage in the cabin, but guess they can be or how could diabetics go on planes otherwise etc. I know you have to have a Consultant's letter of proof you take the drug etc to travel.
I've just sent everything in a message, sorry it's a long one.
You really should always carry your drugs in your hand luggage in case your case gets lost. I remember years ago seeing a lady in a wheelchair in tears because her suitcase had got lost and her drugs where in the case.
MTX must be carried in your hand luggage because it can't go through the x ray scanner (all cases going into the hold are scanned) and if you are taking temperature sensitive drugs they need to be with you so you can keep an eye on the temperature.
Healthcare at home with provide letters about your drugs ie not to go through the scanner and I've also got a letter from my consultant about my drugs. I also ask the pharmacist for a copy of my prescription when I pick up my drugs prior to going away. Enbrel and MTX are listed on there even though they don't dispense them. I've never had a problem taking anything through security, they do swab MTX syringes and Enbrel.
I always smile at them and try to be nice. In fact last time we went away was the first time I took Enbrel. When the security man came to me I told him he had got the short straw because he had got me, told him if they were doing any on the job training to get the person to watch what to do. I started telling him what was what, MTX not to go in the scanner, Enbrel temperature sensitive so could they check it quickly and that I had a thermos flask with ice packs in to top up my cool bag. He just said, I'll get my manager..... he came over, I started to tell him everything and he just said..As long as you've got the correct documentation there isn't a problem....they never checked any of my documents...Husband said I was talking too much and they wanted to get rid of me.
Hi Paula, I got it thanks! So so helpful! I have done a little reply as late and will reply more tomorrow. Had a rare good knees day, so went out to tea and girls chat.
hi i,m julie ive been on embrel for over 2 and a half years.ive been in so much pain recently that my consultant says its stopped working for me now,he,s putting me on humira,i never had any problem with the embrel and found it was really great for me,yes it did sting sometimes when i didnt get it in the right place on my leg,could,nt do it in my stomach as i could,nt pinch my skin and put the injection in due to my hands being stiff and not very strong,i will give the humira a go and hope theres no side effects,hope this helps you make up your mind a bit more.xxx
Hi Julie, from one Julie to another ;-). Sorry your Enbrel stopped working. I have see. White a few people saying that a out after two to three years it seems to be rather ineffective. Guess we can get used to some meds. At the moment i think I am leaning towards Enbrel but I would accept Humira if I was told by a Comsilant they re impended thst and i didn't have the choice I have been given. Swissmiss has given Simponi a great recommendation but I may feel happier with a more established drug. I hope Humira has great results for you and works quickly. Did you find a noticeable difference/improvement quickly on Enbrel or was it gradual?
hello again julie,enbrel seemed to work for me rather quickly,i hope it does for you,i used to take mine in a special bag which i ordered on line,i will get you the name if you want it,you just wet it in cold water insert the pen and it lasts for so many hours,was told to get a letter off my doctor to say i was carrying the pen in my bag for customs,but was told when i got there that it wasnt neccesary to get a letter.i really dont want to come off enbrel and i told my consultant that but he said it was no longer working for me,i get my new meds tomorrow delivered by health care at home.hope its as good for you as it was for me.x
Give me strength LOL ... This iPad and predictive gobbledegook! Sorry - I meant quite and not White and recommended and not impended! What the blazes is a Comsilant?? Answers on a postcard!! Consultant I meant!
I am so sorry your pain has broken through the Enbrel. I imagine you thought it was a flare that would right itself. I hope Humira brings fast relief. When can you commence?
i also have made mistakes on my writing to you,i meant to say i take the enbrel on holidays with me,no doubt i will be taking the humira as well.take care.jools
I don't know what make the bag that Julie is talking about for carrying syringes in. Just want to say that we did lots of research into how to travel with anti tnf's and we couldn't find anything on the market that kept the drugs between 2 and 8 degrees. There is a wallet type thing that you put in water called Frio, this is for keeping insulin cool, but it doesn't get cold enough for anti tnfs.
If the one that Julie is talking about does keep the drugs between 2 - 8 degrees I would be very grateful if she would be kind enough to post details about it so I can get one.
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I am on Simponi and it is amazing (I keep saying that - I start to sound like some kind of fanatic lol), my symptoms literally vanished within 5 days and they haven't come back so far either. So if you want any more information I can get you some information on Simponi 
Enbrel reaction
Simponi (golimumab)
New medication. Starting on the biologics. Enbrel or entracept other name of benapil
