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Date: 21.03.2012
From: Suz

Subject: Feeling better

Hi Arthritis fellows..

Does anyone feel better with all these new drugs out and about for this terrible tiring disease.

Whats the best treatment someone has had and the benefit its given, pls share so it may inspire others to try these drugs.

Thank you
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Date: 21.03.2012
From: Lynnr

Subject: Re: Feeling better

Hi suz I have tried 5 or 6 dmard drugs and now on to enbrel and it's nearly 2 years since my journey started and I am no better in fact much worse each drug has took its toll on my body between sickness fatigue, weight loss ( I went down to 6 stone 9 on mxt ) severe allergy and bruising rash etc I've had it all then I was given enbrel this miracle drug everyone ranted on about and it has just made my life miserable even more after 6 weeks on it they took me off it for recurring infections now they think it's has brought on acne Rosacea ( I hardly had a spot in my life before all this ). And they think it will take several months of antibiotics to try and get that under control

I really some days just wish I had never started on all these drugs I'm addicted to tramadol and need amytriptilne to sleep now and I'm onlyn35 and keep wondering if this is going to be as good as it gets, I certinly hope not. Sorry for the rant
Which drugs are you taking at the min? Or have you just been diagnosed.
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Date: 21.03.2012
From: Suz

Subject: Re: Feeling better

Hi Lynnr

Thanks for your reply, I was diagnosed when I was 17 with RA affected my wrists at first then my ankles, Il b honest I never took any of the drugs from start and I do have fused and deformed wrists and and elbows. I can't fully straighten my elbow joints, All I been doing since diagnosed is changing my diet and no it hasnt cured me. I did lose weight tho from ten stone came down to reasonable 8 but when I get the flares the weight naturally comes off. Im now 33 and for last 3 yrs it hit me really hard on my left hip and I tried MTX after avoiding it for so long and like you I felt a itchy rash, tired and actually my hands feel more worse day after injection. My Hip was too bad from inflammation now I need Hip replacement.

I understand what your saying about the drugs they do take its toll as well as the R.A you gotta deal with side effects of these drugs and thats why I didnt take them but saying all that I am now thinking did I make a mistake.

Reading your comments about drugs doesnt surprise me lynnr, I hope they can find you something more suitable.

Take care
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Date: 22.03.2012
From: Lynnr

Subject: Re: Feeling better

Hi suz that's awful your needing your hip replaced so young I've had bad pain and limitied movement in my hips for a while now and it's awful, I understand what your saying about not wanting to take these drugs I'm the same but I have never turned down any they have offered me and it will be 2 years in June and I'm defiantly worse instead of better my rhumy team keep drumming into me how i need to get onto meds to stop the damage my wrists have been terrible for the past 6 weeks since I've been off the enbrel and I'm waiting to go and see the maxo facial surgeons about my tmj joint which is agony on both sides, if you don't mind me asking do you have children? I've got 3 and it's not easy but you just have to find the strength and plod on.

It's amazing the number of people our age that have arthritis I always associated it with older people just goes to show, and the people who don't have it and say they know what they are going through are talking rubbish no one will know what this feels like unless they have it themself that's wot I like about this forum.

Take care x
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Date: 22.03.2012
From: Suz

Subject: Re: Feeling better

Oh I really feel for you lynn, atleast you have taken drugs and done your best to get this terrible disease at bay.

I dont know if its a unfortunate thing or fortunate that I dont have children lynn.. I decided not to get married with this disease at a early age and I am still single, sometimes i feel like I wont be able to offer the other half everything a wife or partner does.

Just looking after myself is a struggle THESE DAYS...

I got jaw problems as well its with R.A.

What can we do hun, take care try and keep strong for your kids.
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Date: 22.03.2012
From: Colin

Subject: Re: Feeling better

Suz , I dont get it , not everyone gets the joint damage & need fusing/replacing but the ones that do need the drugs even more to try to control it ,

had two opps on my ankles & know need two more sometime , elbows wont streghten but there is keyhole surgery they can do to clean out joint , my left wrist would not move until tried Enbrel , was increadable the differance it made

been on Mtx off & on for 14 years , folic acid 6 times a week helps with the side effects & the new biologics work realy weel when you find one that suits you , the side effects can be worse that Mtx but everyone goes on & try others because these drugs can work well , National Rheumatiod Arthritis Society has a good booklet calle "biologics the story so far "

try find some way to stop the joint damage & try some of the biologics
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Date: 22.03.2012
From: davina

Subject: Re: Feeling better

hi suz, lynn and colin.
suz i am the same as lynn i have been on methatrexate, plaquenil and sulfas then enbrel and now cimzia. in the last 2 yrs i have put on weight went up to 17st 10 now down to 16 but a long way to go yet. i just never lost the weight after having my son then got ra and had steriods 30mg for about a yr.

i have been told that i have non erosive ra but that can all change.

i am currently on cimzia and this as caused the worse infections i have had. 8 weeks ago i had broncitis for 3 weeks and now i have broncitis again. had this for nearly 2 weeks now but this time i have had an ear infection and conjuctivitis too. (not fun).
as lynn said i have also found the drugs have cause side effects that are just horrible but we have to try.

i now have an appointment with my rheumy on 26th april 1 month early to discuss my choices now but i have decided to try for a baby as i really want another 1 for my son and being off my drugs including methatrexate (2 doses in 7 weeks) now i don't have to wien of as i'm already not taking them.
and by that time i would have been of all drugs for 6-8 weeks. wish me luck xxx

suz and colin i am sorry you have the eroison type at a young age its hard enought then you have to deal with ops ect xx
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Date: 22.03.2012
From: Suz

Subject: Re: Feeling better

Thanks for your replies, Davina and colin

Colin - I appreciate your comments and your possibly right I need to try something further from stopping joint damage occuring. My Rheumatologist has been a pain in the backside after seeing how much joint damage I have didnt insist me trying the biologics without giving MTX ago, having the disease for 15yrs plus he delayed his time giving it to me but now I need my hip replaced first.

Davina - your trying so hard to get this disease under control and also try for a baby, thanks for your encouragement, I suppose we have to try something regardless of the side effects.

All the best Guys
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