- CC saysI started taking it at the beginning of November but I stopped taking it in February. It made me feel ill all the time and I had problems with my liver function. Initially it seemed brilliant, much less pain and stiffness but not for me.....I do react badly to most meds so don't be put off by my experiences. It is better to try something positively than worry about side effects. I found that warming the injection before injecting stopped the stinging, others found that using an icepack on the injection site before injecting worked for them. I hope that it works for you xXx
- KN saysHi I am on enbrel and it has been really good .has gave me a taste of what my life used to be like .but have got. A water infection now.and can't take it for a week .and all I have done today is sleep .but its worth ago .
SI says
Have just started Enbrel, took my second dose yesterday, and touch wood all going ok. Only v slight light-headedness which doesn't last very long at all. Joints feeling lots better already :-)
MP says
Since Ive been on my TNFs Ive climbed Macchu Picchu, Croissed North Africa, climbed Pyramids, work full time, garden etc...I still have the odd flare and a few bad days to remind mw of my PSA but this is as good as it gets Im Ok with that. Life without them is non existant! Good luck...
I've been on Embrel now for 3 months. Its definitely reduced the pains and flares. I am also on a low dose of MTX (10mg) but i am unsure if this is making me still feel fatigued, bad tummy, hedachey/hungover feeling still, but only on the odd week.. the weeks i get no symptoms i feel pretty well and almost 'normal'. I know they work well together, and its difficult to know what's causing the problems, me, (im also Coeliac), the RA, or the mtx.. Pretty sure its not the Embrel, the only slight effect i get is lightheadedness for a short time after. Seems pretty much a miracle drug to me..S
- MF askswhen do all find best time of day to take it?
When you feel at your most relaxed. Some people like to do it in the morning after a shower or a bath. When I'm working I do it in the evening after my meal. But since being off aick, I have been doing it in the morning about 11ish, and I prefer it, as it's all over and done with for the day. You don't get the nausea like you do with MTX, so you don't need to add that into the equation foe best time t take etc. Sometimes, after my Humira I feel very tired the next day. J x
- JM saysI have been on Enbrel since May last year! it has defiantly reduced my swelling in my hands and ankles and knees, though my knees have a life of there own, it makes me feel better, l was taking fosamax (for my ostopenia) and felt that it was not helping my enbrel, so have came of the fosamax, for now and got two steriod injections in my behind, that made such a big difference, l can walk around with out my knees feeling they have bags of cement tied to them, so have just taken my 50mg (weekly) Enbrel tonight, hoping for good results!!(face flushes) sometimes tired but on the whole, positive at the moment
- SI saysBeen on Enbrel now for nearly 4 months & I have to say it's been excellent. I'm much less swollen, much brighter & bloods all been ok. Side effects have all subsided too :-D It's been a godsend.
- MF saysVery reassuring, what were the side effects you had in the begining. I've just had the go ahead for it, now I'm waiting for the home care team to get in touch and the enbrel to be delivered, nerves are starting to kick at the thought of injecting myself, I need it to happen so I can get the 1st one over and done with. xx
- JMC saysI have been on Enbrel now for 4 weeks (had 4th injection on Monday)...have been feeling very, very, very tired and a bit rotten, now have had a reaction at 4th injection site, which nurse thinks is infected...have been put on antibiotics and feel really rough...has anyone else had any reaction to Enbrel...?...my ankles, feet and hands are all a bit more swollen since I started Enbrel and, if anything, I feel even stiffer and "unwell"...I have phoned hospital three times over the last two weeks but never had a callback from my specialist nurse to date...am also on 25mg injections of MTX, Plaquenil and folic acid...any advice...?
- MF saysI've also been on enbrel for 4 weeks, so far no problems with the injection sites, not even any redness, just stings when it's going in, have you tried putting an ice block on it as suggested on the ukaag site. it's still early days to get any benefit from it I was told it need 3 months to get into the system before it really works. when do you see your rheumy again, very surprised your nurse hasn't rung you back, I have had a call back before the end of the day, even though the message says it can take up to 24 hours to ring back. I have a pen to inject, didn't fancy using a syringe on myself, lols. It doesn't seem as though the enbrel caused my leg problems but I will tell my rheumy about it when I see him later this month. I'm also on mtx tablets and folic acid which deal with my nausea from the mtx. about 24 hours after I've injected the enbrel, I feel a bit whoosey and sick, but I've changed to taking it at night now so I can sleep through the bad bit. and it seems to be working for me x
- SD saysHumira has been a miracle for me. I went from constant pain, unable to dress myself, cut my food, barely hanging on to my job to getting my old life back. It totally took away the pain and fatigue.
I've just got a new job - big promotion - and have moved to the coast. I have a social life again and am travelling, going to festivals, hiking, swimming and dancing and loving life.
Also it allowed me to get off nasty steriods and mtx which is wonderful. I've had a couple of issues re low immunity and seriously regret forgetting to get my flu shot as i got a rough dose of swine flu, but nothing compared to the side effects i had with steroids and mtx.
I'm 18 mths in and its still working, i'm just scared of the day it stops! injection is tiny inconvenience compared to the hell of RA and a bit of ice sorts out the injection site reaction.
still get the odd flare - having one now in fact! - but very copable with and a good reminder to keep taking the injections!
I'd strongly recommend it to anyone thinking about it, amazing stuff, i could kiss the scientist who came up with this.
- JW saysA very comforting read as I have seriously cold feet now it's actually in my fridge.....
- SD saysdno't worry JW - from the anecdotal evidence i hear it works well for the majority. let us know how you get on - i bet in a months time you'll be telling us how much energy you have ; )
- YS sayswow i am so pleased 2 hear results. I'll b avin my 3rd humira 2moro. all goin well 4 me also felt a bit more like my old self after my 1st so long may it continue.
TIPS
SD says
best way of injecting (in my opinion):
do it at the same day same time each time - make sure you are not going to be disturbed. I usually do it between bath and bed.
take humira out of fridge 10 mins before shot - it hurts more when its really cold
inject in belly not leg - more cushioning in my case....but remember to avoid an area where it is likely to rub against a skirt/trouser waistband
do a countdown and then a count up e.g. 10 - 1...inject...1 - 10 pull the needle out. Ideally get someone else to do it with you for the first few times until you get used to self injecting.
walk around saying ow ow ow
if you're really not keen rub some ice on the area first (i've only done this a couple of times when i've been a bit under the weather and really couldn't face it)
if you react to the shot (and I had huge site reactions for about a year) take an antihistamine first or jump in a cool bath/put a cold flannel on it.
always remember that no matter how weird it is to inject yourself or how uncomfortable an injection is they are nothing compared to how painful ra is or the nastiness of taking methotrexate and endless steroid injections. holding onto that thought got me through the first few months.......
about an hour ago · Unlike · 1 person
Sarah Dillingham re colds/infections - all pretty obvious immune boosting stuff but....
take a berocca or multi vitamin every day
don't eat crap food - stick to reasonably health diet
...
get some regular exercise as you can manage - swimming is always good for ra people
if you get a hint of anything pounce on it - see a doctor quick if antibiotics are likely to be required (e.g. cystitis, skin infections), get some rest, don't drink any booze, hit with over the counter remedies
stock up on remedies for home and desk drawer
accept that you get sick quickly and easily and take longer to recover - getting stressed about ailments inc ra is counterproductive...i'm writing this wearing a wrist splint for an ra related fracture and am just happy im as healthy as I am.
make sure you learn the phrase 'I'm on immunosuppressants' and say them to any medical staff you need to speak with. if you can show a humira box do so...be aware many medical staff have never heard of it...
read the instruction leaflets that come with any prescription medication - if it says it impacts immunity or contraindicates any other drugs you are on query it - don't worry about looking demanding. i missed doing this once and ended up in A & E very seriously ill when a gp prescribed an antibiotic that contraindicated with my steroids.....
explain to colleagues/boss whats going on - and ask if its possible to work from home when you are under the weather
oh and you'll bruise easily and your blood clots more slowly but thats ok once you get used to it.
again - hang on to the thought that a few annoying colds and infections are nothing compared to ra pain.....
Some additional tips from a Rhemy Nurse for Enbrel
take out of fridge 1 hour before injecting, and maybe get an ice cube on the area first to help numb a little n regarding the rash to use anti-histamine cream to help with the itching
she also said for the itching either anti-histamine tabs like piriton work too
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