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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi everyone,
i thought this would be a good Thread to find out what stages we all are ... as we read snippets on so many different Posts.
i will post my own state of play in a Post below.
look forwarding to hearing how everyone is doing,
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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me again,
i was diagnosed very quickly really.
my GP picked up the signs with Blood Tests after my pain got increasingly worse ... i have Osteo in my knee's, but the pain was now in my shoulders, wrists and hands.
i was seen by the Rheumatologist in June last year, and put onto Methotrexate straight away. increased the dose slowly from 10mg up to 20mg, that hasn't worked so added Hydroxy at the start of December and still hasn't worked ... my pain is about the same though.
so i am presently in the process of having sessions with the Rheumy Nurse to go onto Anti-TNF's,
not looking forward to starting on these, but i know it's a case of needs must.
i have a great Rheumy Department which i am thankful for after reading how many have to wait and wait to even get seen.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I am thrilled to say that after 8 horrid years - wheelchair, not able to move easily, etc. I am now able to climb stairs (once a day) and walk short distances without sticks. For the first time in yonks, I am without pain and my consultant (who is gobsmacked by what is happening to me) says I am in remission. My swelling has all but disappeared and, apart from the fatigue, I feel better than I have done for years. God has been very good to me.
I am posting this not to gloat, but to encourage you all. If someone who is as unfit and overweight as I am can go into remission (for however long that may last) then it can happen to anyone!
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Suzanne,
When diagnosed last May I was put on 20mg MTX and it kicked in after approx 7 weeks, I then felt normal again as if I didn't have the disease at all.
Last Sept/Oct (can't remember) was taken off for two weeks due to liver problems and it returned with a vengence, again took 20mg MTX.
Saw Rhummy in January and he increased it to 25mg weekly and I am loathe to say it but definately getting less pain now and hoping it has kicked in again.
Really hope you find something that suits you soon.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Hi Suzanne , Hi all :) All positive stories and a testament that when you get the right help then there can be an improvement . I am way off a wheelchair or even sticks at the moment but hoping i am on the right track to at least delay those issues ... Wont repeat my "State of Play " as it appears in the forum twice already , main one in members blogs :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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I was diagnosed quickly ,just with 2 swollen fingers in January 2001. I have been on several DMARDs, on their own and in combination but the nearest to remission I have got is when I started humira 3 years ago and my CRP went down for a couple of years, now on its way up again with each blood test. In those 3 years my right knee has gone from having just a small amount of damage to being bone on bone so I now need a knee replacement. I also need some finger joints replacing but am loathe to agree to this on account of having to be in plaster for 6 weeks. However, I still consider myself one of the "lucky" ones because I didn't get it till I was 51 and I am still quite good mobility wise. And of course "I don't look ill"!  Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Suzanne
I was diagnosed 18 months ago over the course of about 4 months.. Started with pain in my wrists then shoulders, started methotrexate straight away and quickly increased to 20 mg then changed to injections, unfortunately hasnt got it under control so starting anti tnf next month. Have opted for infliximab as really dont fancy doing another injection! Good luck with your new medication and really hope it works for you.. Had another steroid inj on Tuesday (4th since sept) but thankfully thats brought it back under control as couldnt even hold a pen or walk upstairs. Take care luv Ceri xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 43
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Hi Suzanne
I have had RA for 13 years since i was 28.Im now on my third anti tnf in under 2 years,just about to start injecting MTX as this latest drug isn't working that well.After having RA quite badly for 5 years i went into remission for about 3 years,i actually thought it had gone for good.Unfortunately i have not felt that great since then.
I shouldn't complain i could be alot worse.Just got to get on with your life as well as you can and try to be positive.
Hope you start feeling better soon.
Love Poppyxxx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Suzanne,
Mine is in remission you know my story, lets hope it stays there. Hope you get something to suit soon.
Take care Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Suzanne - I was diagnosed with RA in Feb 2010 though i believe I was misdiagnosed with just Sjogrens Syndrome in 09. After a year on just Hydroxy and a new Rheumy at my GP's request, I started MTX, then Leflunomide, then both but still didn't manage to control it. I've just started anti-TNF - 3rd injection of Enbrel today - so am hoping for great things! My main problems are swollen painful hands and very awkward feet! XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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jean im very glad reading your post there is hope and i hope you continue pain free would like to know do you take any vitamins that helpt, when did ou start to feel better would love to here how you are getting on sylvia x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello all
I think everyone knows my story
Briefly diagnosed Oct 2008. Started pains in back feet and hands. Started on anti inflams. Had
mtx hyrox sulph and laterly leflun. So now awaiting to start TNF and plumped for humira.
I am no better other than when I have had a depo inject or more recently prednislon.
I still have pain, swelling and huge fatigue and I walk with 1 stick. I was off work for 7.5
months and now just doing 12 hrs pw as part of very full time management job. Not
looking good they want me to step down now. So watch this space.
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Suzanne. I went to my GP in June 09 with very swollen knuckles. He immediately said RA and sent me to the consultant. She hedged her bets , said maybe it was an inflamatory arthritis, 'Take paracetamol and come back in October' However, I then saw a different doctor about something completely different. He noticed my hand, ordered a bloodtest, which showed I had sky high Rhum. factor and CRP. Then went on hydroxy in oct, with mtx added in Feb. I am doing pretty well. Can't take more than 7.5 mg of mtx without white count dropping but my inflammation stays around 6. I get pain in feet hands elbows , knees and shoulders at various different times but rarely have to resort to painkillers. I am one of the lucky ones. -long may it last 
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Rank: Advanced Member
Groups: Registered
Joined: 2/2/2011
Posts: 31
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Hi, I said a bit when I introduced myself last week. Got spectacularly ill about 20 months ago, after six months on steroids tried Mtx, which I stopped after a serious chest infection 8 months later and little effect. Allergic to Hydroxy so started Cimzia a couple of weeks ago. Too early to tell if it will work. I have problems with knees, ankles, wrists, finger, shoulders and ribs. Sometimes I use a stick to walk, sometimes I can't walk at all. Other times I can do a bit more.
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Rank: Advanced Member
Groups: Registered
Joined: 1/14/2010
Posts: 118
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Hi I was diagnozed about 4 years ago since then have tried MTX hydrochlori(sorry cant spell that) sulphasazone (cant spell that either) which made me very ill. I have been on Humira for 2 years but my esr is still 80!! I think they are now going to try something else. I use a stick, have had a hip replacement and use a wheel chair for anything other than strolling around the supermarket. Well done Jean, my gp says this can happen but I thought he was just giving me hope!! Love Melanie
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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi
I was diagnosed about 2 yrs ago by my GP for a start and she sent me to, the Rhumy Hospital dept and they are very good. I have had sulphsaladine and MTX both no good I am on ANTI TNF Enbrol and this has not made me feel any better. my Consultant at the Hospitla said my DAS score is going down by .1 and the Consultant says i have Flydro as well, and you all know my work situation. walk with 2 sticks and can not walk far but love the life I have and do take pain killers. but these are all good things and i am waiting for my remision.
love to you all.
Audrey x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I'm pleased some of you have taken hope from my story. I'll just put you a bit more fully in the picture.
My RA came on with a bang! I was in my late 50's and had had bad pains in my hands and knees for about a year. I got worse and worse and, after 6 years of my (then) GP telling me I had a "touch" of osteo in my knees and was overweight, there wasn't much wrong with me! By this time we had had to purchase a scooter and a wheelchair as I couldn't walk any more. Eventually, aftr my dear Dad died, we decided to get a second opinion, privately, on the state of the "touch" of osteo" my knees and went to see an orthopaedic surgeon. I had been in his room for all of 30 seconds, during which time he looked at my hands and then asked how long I had had the "Rheumatoid". To say we were gobsmacked is an understatement!! A week later I was diagnosed and on MTX. My knees and right hip had deteriorated so much that I had the three replaced within the space of 9 months. Those years without treatment "did" for a few other joints as well, and I existed on my meds plus strong pain killers and morphine patches until I became allergic to them. I wil add at this point that I spent a lot of time in bed as I just couldn't move- not even to go to the loo - 'nuff info there!
Since Christmas, I have not taken any painkillers at all, although I think it would be foolish to discontinue the MTX!!! My rheumatologist, who is absolutely wonderful, is totally freaked by my remission and says he hasn't seen anything quite like it!! ALL the swelling has gone down, in every part of my body and I have now hired a personal trainer who has got me on exercise bikes, pilates balls and the likes!
The moral is NEVER GIVE UP HOPE NO MATTER HOW BAD YOU ARE. It really can and does happen - and even if the disease doesn't go into remission, once the drug regime is settled and sorted, you should get relief.
Love Jeanx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jean Thanks so much for your very heart warming story. After all the terrible suffering you went through it is wonderful to know those bleak days are far behind you and have got your life. I am rather up the creak at the moment, I know I have to remain positive but sometimes its just so difficult, to read your post has done me the world of good, thank you Love Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi all, Jean, your story definitely gives hope to everyone to be pain free and able to lead a fairly "normal" life. I was diagnosed in July 2009 after goig to my gp for nine months and being told "its osteo, go swimming every day and you will be fine" I finally saw a gp who was prepared to refer me to rheumatology. I went on mtx straight away at 10mg increased now to 25mg plus hydroxy. Was on steroids on and off from Feb 2010 until Jan 2011. I fractured my ankle in Dec 2010 so on criutches for 6 weeks, I had to continue for 2 more weeks when plaster came off, and now find I have great difficulty in walking without a stick, or a pushchair to lean on! I do get pain, on various pain pills, and swelling etc Since coming off steroids I feel achy and "heavy" and have no energy, getting upstairs is virtually impossible. I still work full time childminding, and struggle immensely with this. No other treatments have been mentioned, as my rheumy feels that the mtx is working well. BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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jeanb wrote:I'm pleased some of you have taken hope from my story. I'll just put you a bit more fully in the picture.
My RA came on with a bang! I was in my late 50's and had had bad pains in my hands and knees for about a year. I got worse and worse and, after 6 years of my (then) GP telling me I had a "touch" of osteo in my knees and was overweight, there wasn't much wrong with me! By this time we had had to purchase a scooter and a wheelchair as I couldn't walk any more. Eventually, aftr my dear Dad died, we decided to get a second opinion, privately, on the state of the "touch" of osteo" my knees and went to see an orthopaedic surgeon. I had been in his room for all of 30 seconds, during which time he looked at my hands and then asked how long I had had the "Rheumatoid". To say we were gobsmacked is an understatement!! A week later I was diagnosed and on MTX. My knees and right hip had deteriorated so much that I had the three replaced within the space of 9 months. Those years without treatment "did" for a few other joints as well, and I existed on my meds plus strong pain killers and morphine patches until I became allergic to them. I wil add at this point that I spent a lot of time in bed as I just couldn't move- not even to go to the loo - 'nuff info there!
Since Christmas, I have not taken any painkillers at all, although I think it would be foolish to discontinue the MTX!!! My rheumatologist, who is absolutely wonderful, is totally freaked by my remission and says he hasn't seen anything quite like it!! ALL the swelling has gone down, in every part of my body and I have now hired a personal trainer who has got me on exercise bikes, pilates balls and the likes!
The moral is NEVER GIVE UP HOPE NO MATTER HOW BAD YOU ARE. It really can and does happen - and even if the disease doesn't go into remission, once the drug regime is settled and sorted, you should get relief.
Love Jeanx Jean I never realized all this! I am totally delighted for you my love! I also feel quite 'lucky' compared to some. I was extremely ill when first diagnosed and it was very frightening. I have good days and bad days as do we all i suppose but I'm gfrateful I wasn't diagnosed at a very young age. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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