Date: 23.12.2009
From: Jill
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Subject: Re: Anti TNF
Helena, Im truly pleased that u arnt suffering like u use to...thats fab news, said with sincerity x...I began having probs after first baby in 86, was 26 then, was told then that it was NON Progressive artha....struggled thru the years like ya do....Must admit, being occupied with more babies, didnt even occur to me that diet wld be associated with the type they diagnosed me with, always had a good diet tho, plent veg and fresh fruit, meat etc...never drank back then.....anyway, wasnt until 2002 that I got rushed into hospital with acute pain everywhere, not just joints but thru the tendons and ligaments, they said I was Misdiagnosed back in 86, that I had Reiters syndrome(defective Gene HLA B27 Pos) has now left me with chronic Inflamatory artha! If I had been given correct meds way back, I might not be as physically damagaged as I am now...... However, the Reiters constantly attacks my soft tissues, and the TNFS do NOT help that side of my disease, only the degeneration of the bone........ I still eat very good, Not Organic, but since 2002, seems like ive had a constant flare up of this nasty inflam artha..... been told my condition isnt straight forward like just arthritis, only 3 discs in my neck, three discs in my lumber region have gone, hence the prior spine op, but another has gone and need fusion.....that is the only reason I now take Enbrel to stop the Bone degeneration that will get worse without the Enbrel....as I battle with one other disease, Im also battling with Inflam artha....I was so scared to begin all thses meds, did not take the decision lightly at all, I thought that Methtrexate wld be My little Wonder Drug, and stop all pain etc...i was sadly mistaken, got worse and had No choice but brgin Enbrel.......as I said in my other posting, wont repeat all that to u again, but some of us, simply dont have the choice......maybe U were going to go into remission anyway, without offending u, mb U have been one of the Luckier ones(notice I said Luckier ones) becos Im not belittling what U have had to endure at all.... obviously U suffered bad, However, if U truly did, U wld understand that lots of us have No choice, and dont have the time to see if the Foods we eat may work, that can take years b4 any results show we get better. Acute/chronic pain, sleep depravity,pain 24/7, corrective surgeries, depression,no social life, sucidal thoughts, the burden on ourfamilies, the Guilt and failure I felt was unbeleiveable, to the point where I contemplated suicide, for the better of my family!!..... so althought I appreciate your comments about the Meds, becasue after all, this is an informative forum, advise etc, and all of us take on board peoples personal experiences....... However, I can only truly go by how this disease had affected my life, and taking the Toxic killing meds as u say, for me was last resort, It gave me Hope, Hope....and i only have a young family (5 kids) youngest ten, all hes known is me being ill and in pain, surgery after surgery......Im a strong person mentally, and I use to be physically, did gym, swim, weight trained, I had an athletic body, very defined, and at 5ft9, people comlimented me how athletic and healthy I looked.... ive Lost all of that......in 7 short Years(felt like a lifetime tho). what wld be good is altho U have given good advice, some of it will Scare some of the ones about to begin these meds.....and some may decide to NOt take the meds, on what u have posted!....this truly isnt an insult to your info u gave, but please also understand in depth, how most of us, if not all will feel after your post..... No one, not even my bio nurse has ever told me that these meds can Kill, literally Kill us, of course I know they r toxic, thats y we have Blood tests done every 4 weeks, if there is the slightest prob on the tests, we get taken off them Immed........I will be truly honest, others in here will understand what I mean, becos they know me, and my ways on this forum.....I do my Utmost to support others, even when im in pain, and can barely type, but i couldnt ever post what U posted becos I couldnt Instill in the people that visit this forum fear!....I wld suggest , like U did say, look into it properly...... I feel I did, I asked so many questions to my Top Rhumy who is very revered in his work, i asked about ALL side affects....he knows I have a young family,he Never once told me that it cld Kill me....! its no skin offff his nose whether I take the meds or not, so if he knew that taking my Meds wld Kill me, I know he wldnt want me to have them! and if its tru, and your consultants know this, then surely my Rhummy wld too!....... anyway, pls do not take offence at this posting to u, not intended, in a nut shell, m y point is, mb say what U heard, which u did of course, but follow it thru with a fab Positivity bit at the end of that pariticular post....... I also have to say, in a year that ive been on here, that is the first time ive ever heard that those meds directly Kill people, and Hospices have people like ourselves in the hospice with related meds, and that they r dying directly becos of arthritis and the DMARDS and Tnfs and the like.......anyway, Im NOT saying u r wrong waht U posted, all im saying is, for recent diagnosed people that havnt Yet lived thru the pain like u did/are for years, they need support and positivity, yes we give out advise and suppoort people that worry, primarily that is what I try and do, but I couldnt say what U said, I mite enquire thru a new topic about that...... anyway, im rambling on here......I Prefer to give Hope, Help, Support, Hugs, good advicem and more importantly, to help them thru their pain at this time...... there must be a hundred people over the year that have been on Enbrel amd NTX, not one consultant told them what U were told....has it occured to u, tht your consultants might have been lying to u?? just a thought......happy crimbo to You and Welcome to the forum also regards Jill
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