Date: 21.08.2010
From: jill
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Subject: Re: new to forum + a few questions.
Hi Claire, I agree with Lynn B totally there, I am on Enbrel, ive been on Enbrel nearly two years now...but b4 I talk about that, I do want to mention about the sulpha and the MTX etc.....I was on just MTX, side affects etc, but then got hospitalised and put on sulfa, was on that for 6 months, but that sulfa made me so sick, I know U aid u were on MTX and that made u ill, r u sure it was the MTX and not the combined sulfa along with the MTX? hope that makes sense.......anyway, after two years I was pout on Enbrel, and I have to say, once it kicked in, and especially a year after begining it, I do have less flare ups, and I also know when im about to have one......the flare ups still happen, but r far less, also they dont last as long either, so that is great news........however, remember the meds r just dampening down the disease, it cant cure it, therefore we r still left with some pain, we r all different, and some cope better than others......I know u have diabetes, and that will cause issues with specific painkillers, U need to talk to your rhummy again about that......co cod r good, but they work better with other meds, I still have to take Opiates, even tho im on MTX and Enbrel, however, I guess mines miserably bad, as other issues have begun in realtion to taking such strong meds etc....(another story)....also ask to take PPI....they r a stomach protector, protects the lining of your stomach...... like I always say....learn as much s U can about your condition, and as hard as it is, u must have some 'down' time for u, or the stress will cause a flare up......at end of the day, think pos, becos u r having the correct treatment, sadly I didnt get mine for years, and it caused a lot of damage to joints etc.....I couldnt be without my meds, also U r entitled very Much to DLA, especilly as U t now begining Enbrel.....your Bio Nurse cna help you with this, when u apply again, give them her name, and let her know that u r going to claim what U r entitled to, more so that u r also a carer to your daughter( I have two sons with Aspergers) (mild autism) however, its hard to cope when your child relies on u more than a child that doesnt have same probs........ U can claim online, takes 20 mins, give all the information as bad as it is, daily, nightly, how it affects u showering, bathing, how u cant sleep at night due to pain, and need help via partner, how its difficult for U to wash your hair due to hand, shoulder pain, how its hard for u to walk, and that U have to go out regardless becos your little one is diagbled, and oushing the buggy is a nitemare, tell them that U have had to totally re adapt your life, tell them how hard it is looking fter your little one,due to Your pain levels, that Yur diabetic and cant go on strong painkillers, they need to hear from u how bad your day is, how u cant cook a meal, as it hurts, U must tell them the stuff that affects your life so badly, dont mention any positive stuff like, some days u r ok....becos beleive me, ya wont get it......we all know tht this disease is painful daily, its never ending, I told them that I couldnt shower without pain, so I used babywipes, tht was tru tho, and sometimes I still need to do that, I cant walk without pain, worse on some days than others, but then i dont go out much..........im rambling, but I need to, so that U get that DLA, U r entitled to it, especially since ya beginging Enbrel, that also indicates to them just how bad u r, beco not everyone gets that med, u have to be really bad to get it, as u know........U must tell them clearly that U cant walk properly or for long without pain(assuming u get hip, leg pain, im assuming u do, most of us do..... Please do not give up, apply today, and get someone to help u fill it in like Lynn said ok.........I hope I havnt made u feel worse, Im being realistic and tell my truth, altho its my personal truth, its a disease that many of us compare with one another, and we all seem as bad as each other.........no side affects btw with Enbrel, not that i have noticed anyway.....I do still get fatigue, and its been chronic, But i also have Perncious aneamia, which hasnt helped LOL.......ps, when filling out the DLA form, put in the specialists names, GP, and your Bio Nurse ok, becos they will contact them, its normal practice for them to do that ok.......take care, and try and rest when your little one does lots love JIll
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