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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hello - I posted last month when I was newly diagnosed and have now had 6 weeks on the full dose of MTX. I went to the follow up clinic with the nurse yesterday and she said the MTX is not working. My blood levels are still very high and I am still struggling with a lot of pain. She did my DAS score which was 6.85. I understand how the score is worked out but am not sure what 'normal' is. The nurse also said she thinks the Rheumy will want to change the plaquenil to sulfasalazine to help the MTX work better. I'd appreciate hearing from anyone who has changed to the sulfasalazine - part of me can't face yet another change so soon. Shoukd I ask for the MTX to be given more time to work? I do feel fairly rotten though and need to get my energy back and get rid of some of the pain. I had a steroid injection at the clinic and the nurse will get back to me next week when the Rheumy is back. I'm also on a high dose of antibiotics for an ear and throat infection and swollen glands, so feeling a bit sorry for myself really  Sorry for the long moan - I thought I had been ok about the diagnosis and everything but now I'm feeling swamped. Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Ailsa
I was diagnosed almost 3 years ago. I was very ill then and I was put on all 3 Meth, sulph, and plaquinil. I had a bit of bother with the amount of drugs I had in the beginning, and had to stop and start them again. But all is well now I am so much better, they hit you hard with the therapies in the beginning to try to aim for remission. I no longer take sulph that was stopped last August, I hope you get some relief and keep a diary to remind you of any affects, it does help. You asked about DAS score Less than 2.6 Disease remission, 2.6 to 3.2 Low disease activity, more than 3.2 MAY merit change in therapy for some patients, More than 5.1 Severe disease activity. Its in the green book and is a guideline. When I was first diagnosed I was 10+ and now I don't have any pain so things do settle down and get easier. Thinking about you Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Morning Alisa, You are quite right to feel sorry for yourself . To make you feel better I can confirm that I was put on meth Nov 2008 but same as you my bloods were not right so they added in the Sulphasalazine as was told the 2 work together well. Unfortunately they didn't so I was stopped on both of these in nov 2009.  I was given the depo in Dec and in March 2010. They want to start me on another DMARD - leflunomide but unfortunately my BP has been high so started 3 weeks ago on BP tablets in the hope to bring it down. So like you at the moment I am only on naproxen and amitriptline only. Due to me having a=this 'flare' I am now in my 5th week of sick from my full time work as I have been very poorly with pain (like a toothache) my feet and hands, + all over+ having to use my stick so like you I also feel very sorry for myself. I worry about my work , what they think of me, how will I be when I return etc. etc. My disease assess score is 6.35 I belwive this is out of 10, but like you I do not know what is normal ? my health assess score 1500 Can any one out there please let alisa and myself know what these scores mean ? please  I have just joined the NRAS 3 days ago, so am new to this, but already I can see that I am not alone and someone is going through the same as me. Rose - hear from you soon Chin up together   x
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Rose,
Sorry to hear you are also really low at the moment, It so easy to say be positive but its so hard to do when you feel as low as you prob do at the moment. Try heat bags for your joints I used to get relief from these. Or ice packs if the joints are hot. It really does get easier it time, My rheumatologist said you forget the pain in time but I can't, don't think I ever will. I measure all my pain against what mine was like in the beginning and I'm good now. I'm sending you both a big hug and lots of love try to be strong. Lorna xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Lorna and Rose - thankyou! So nice to 'speak' with people who understand and thankyou for your advice too.
I have just been to the ENT clinic (I also have Sjogrens Syndrome) and have come home to collect my bags before going to school. Every part of me longs to get in bed and sleep but I'm worried about taking time off. I always feel I will never get back on the treadmill if I stop! Totally understand how you feel Rose XX
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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HI Ailsa,
Do you work at the school or are you a pupil, don't push yourself if you really are not well you will only make it worse. An ear infection is a nightmare in itself you think your head is going to explode. I had an ear infection when my middle daughter was a baby, the doctor had me on morphine and even that didn't touch it. I was like a zombie and was sick with the pain. What is Sjogrens Syndrome I've seen others online with it but don't know what it is. Go back to bed this morning with a hot drink and try to sleep it off. Take care Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi afraid i dont know do you have the nras booklet know your das score,it may shed some light or ring nras helpine its free phone number. nice meet you all. im melly 38 Ra,Systemic lupus,Fibromayliga etc been member since august 2008 on here. take care lv Melly  cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi all Ive looked at the video know your das its on front page of nras website. your question regarding what numbers mean they count out of score of total 10 1 being discease activity at its lowest,thereby possible reduction in medications. 3.5 is active and above 5 is very active and a need such as youve been told about for your current treatment plan for RA to be adjusted as not reducing your discease activty enough. i do suggest you watch the whole video you will see at beginning the scores and what each level means. hope thats clerar as say the video is even clearer only 12 mins long. take care melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Thanks Melly, that was really useful. I'm trying to find my way around the site and explore all the options - it is an amazing wealth of resources. To those who work at providing this service, I'd just like to say a heartfelt thankyou. It is the only place where I feel I can ask ALL my questions (there are so many!) and read of others who understand.
Lorna - I teach English at a High School in Warrington, Cheshire. I'm also single mum (4/5 still at home!) and only daughter to parents in their 80s, so life is very full!
Sjogrens Syndrome was my original diagnosis last year. It causes sore dry eyes, dry mouth ... dry everything plus lots of joint pain and can have many other complications which I'm thankful not to have. The new Rheumy I saw in Feb said the original Dr had missed my high RF and that my primary diagnosis is RA. Unfortunately it meant that I was left untreated for over a year, so I think that is how things have become so bad.
Do you find that people hear arthritis and think it is something you can have 'a touch of'; or think it is about getting older? I suppose I would not have understood 18 months ago either.
Thanks for making this all seem manageable - I have been struggling but didn't know how to talk about it with others. XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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That is our biggest bugbear Ailsa, people saying "oh I've got a touch of that" or "I knew someone with that but they got over it".
NRAS are working very hard to raise awareness of RA so that people don't treat it as an old persons' disease but it's not an easy task.
You will also probably find that people will recommend all sorts of fancy diets or herbal things to "cure" you. If it was as easy as that, I'm sure our consultants wouldn't be giving us these expensive drugs!
In time you will learn to pace yourself and not do too much in one day. The key is to balance activity with rest and you will gradually learn to do this.
Hope you feel better soon.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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thanks from me too Melly. I have just watched the video (and the health care professionals one!) it's all very interesting - I didn't know we were supposed to be assessed every month whilst trying to get things under control????????????? I haven't been given a DAS booklet for results after appointments? and I even have the devils own job trying to get blood test results from GP/rheumy appointments - I have never understood why that should be so difficult  It is easier now I have monthly blood tests instead of fortnightly! Even though I have been visiting the site for over a year - it seems almost every week I find how to access something I didn't realise it was possible to get! Ailsa - it is indeed an amazing wealth of resources! and thanks to all who add to it. Hope you all enjoy the get together at Leicester - was hoping to attend but it was 'not to be' Look forward to getting the reports (especially photos of the pole dancers – or what ever it is you all get up to on your nights out that necessitate sparkly items, thongs, snakes, tassels, wellies etc etc!)  Love Beth
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Ailsa, Thanks for the info, you are an English Teacher, that is my daughters passion English and History. You are so right about people not knowing; when I was told I said it couldn't possibly be that, no one I know has that. That was before my blood tests etc. It was that obvious thats what I had, my Rheumatologist knew just observing me. Once you get your head around things, it does take time, and pace yourself it makes all the difference. I ache if I let myself get too tired, so if I am busy one day I do a bit less the next day. I work in schools too: on supply assisting kids who need more help, I love doing this you meet lots of different children. I have done this for about 5 years, it is harder with younger less able children but I carry on and do the best I can do. Once your ear infection subsides everything else will be more bearable. Thinking about you Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks for the info on the DAS to my knowledge I have only had mine done once since diagnosis. This was in February this year, and I wasnt told the score, should we be told this? or is it just for their records? I have no idea where mine stands. BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi your welcome oh yes the i ahd bit that ate this and its gone yeah right ,if was that easy dont they think we all be rid of ra lol ahh now barbs yes i agree,think need promt them at our clinic hopefully your new one be more upto scratch terms of this das. you can get the booklet from nras and ask rheumy to fill it in. the monhtly bit is for new referrals as far as ic an see,for me alreay diagnsoed i go 6 monthly. ive not ahd das myself in quite a while buit thats ebcasue they put me threw new referral testing again due to the lupus coming out in me lol. so i shall be asking for my das now all those test done and diagnsois confirmed. barbs you should be told the score,or at least your level of discease activity i was. and from video you can see what your level means. re mild,medium active or highly active. ask them give you das booklet i would do. nras do so much for us,by us prompting our rheumys we can also do our bit. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 216
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I think the most important thing for all of us to do is to ASK and insist on replies we can understand when talking to these experts...................just because THEY know what something means, all too often we are left wondering, frightened and too embarrassed to show our own "ignorance". And if we don't insist we are the ones who actually have the disease and want to know how to manage it , we get left out of decisions etc. Interestingly at my last appt my RA consultant was using the term "rheumatic disease" rather than bringing arthritis into the name, as she herself is sick of the "oh I had a touch of that once" brigade, who have NO idea what RA is and what it does to us!! Chins up, ladies, things will get better as you learn more about it and your drugs kick in, Good luck, Love Lxx Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Is the DAS Score not just being trialled in Scotland, for now. I was given a Das sheet at my last visit and I have to fill in the Das score the next time I go to see her. You have to mark on the sheet where your pain level is at. When it gets up and running we are to be given our own personal numbers etc for the data base. But its all done by US. Hope this helps. Lorna x
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