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Rank: Newbie
Groups: Registered
Joined: 12/8/2009 Posts: 5
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Hello everyone,
My name is Monique, I am 58, married with 2 children aged 24 and 25. I have been diagnosed with seropositive R.A. since the end of August 2009 but it all started at the beginning of May when the pain and swelling of my joints started. My gp thought it was a virus and only referred me to a specialist 3 months later. I have been on a combination of Methotrexate + hydroxychloroquine sulphate + sulfasalazine which seemed to work well after the first 3 months but it is no longer working and I have been in terrible pain for the last 5 weeks. I also had 2 injections of steroid in between. I have an appointment with the reumatologist tomorrow and I am not too sure what to expect. The specialist nurse mentioned that I'll have to be on 2nd level medication. Does anyone know what it means ? Thanks !
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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welcome to you!
I am so pleased you joined because you will never need feel on your own with this crappy disease again!
2nd line drugs are ones when the MTX hasnt worked as well as they would have liked. I would suggest that you go for a depomedrome and get some of that pain control into you. There are no medals for martyrdom on here!
there are literally dozens of doses, combinations etc you can have DMARDs wise.
One option, if 2 DMARDs (you have had 3) have been tried is to go for the newer biological treatment drugs- they are anti-tnfs or there are B-Cell therapies.
A lot of people do really well on these drugs.
I am Jenni, 34, my children are 14, 12 and 2!
severe RA Im afraid, but there is room for everyone here.
Love
Jenni x how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hello Monique, welcome to the forum but so sorry you have RA though and that you have been in pain,
Im not too sure im the best person to advise but there are several people here who are and hopefully they will be around very soon and able to give you good clear advice. What time is your appointment, Monique?
My advice is to jot down everything you wish to discuss ready for appointment - in my personal experience it all usually disappears when going in the room and then going home i remember what it was i needed to ask... so now i always write things down.
Also, have you had any advice and support from occupational therapist and physio and maybe podiatrist too? My OT helped me work out what it was i was struggling with and how she could help with adaptations and sometimes just simple hints and tips. My best tip in the early days was not to hold a cup by its handle - simple advice but so helpful when my hands were so sore as this is when damage is more likely. I wrote down what tasks were causing problems and she helped resolve them or make things a little easier - its surprising what is out there to make life a little more manageable.
There is also loads of auseful information on the NRAS website pages including about medication so hope this may be helpful,
Let us know how things go and wishing you some speedy relief from pain, love Liz xxxxx
& im pretty sure someone will be along very soon and able to answer your query, Take care xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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well what do u know - she was already here! Well done Jenni i was hoping u would be around xxx ;)
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Rank: Newbie
Groups: Registered
Joined: 12/8/2009 Posts: 5
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Thank you for your reply Jenni ! sorry to hear you have severe RA. Monique x
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Rank: Newbie
Groups: Registered
Joined: 12/8/2009 Posts: 5
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Thank you for your kind reply and advice Liz. My appointment is at 4.15pm. I did get some advice from the occupational therapist and physio. All my body hurts but the main problem is my legs - I find it very difficult to walk and when I sit down I am struggling to get up again. Monique x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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will be thinking about you tomorrow Monique and hope it is a positive appointment for you xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Monique, Welcome to the forum and good luck with your appointment tomorrow.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Monique,
Welcome!
I hope your appointment goes very well for you and you receive the help you deserve. Sometimes a large dose of steroid ( a depo jab) will bring quick relief and calm the inflammation right down.
There are a few options to consider- one is increasing the three meds you're already on (I take the same)...I don't know of your doses but there may be room increase..
If this wasn't suitable there are the Anti-tnf (biologics) meds which are newer and were specifically designed for RA.
I have had RA since girlhood and am now 37 and married to Mark with five lovely children and an ancient house!LOL
Much love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Monique - lovely name,
A big warm welcome to the forum. I'm 50, married and have a 23 year old daughter living at home. I was diagnosed this time last year and have not done well on DMARDS, dodgy liver, and started last week on one of the new biological drugs called Humira. It's early days yet, but feel positive that it will eventually start working.
Can't add anything further to Jenni's post , she's very wise and knowledgeable when it comes to RA, and there are some real old timers here who've grown up with the disease, but are still spring chickens and could teach me a thing or two about RA!
Take care and hope all goes well with your appointment,
Love,
Barbara XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Monique,
Welcome to the forum ... I'm sure you will find lots of answers to the many questions you'll have trying to get to grips with RA!
Good luck at your appointment today ... please do let us know how you get on.
Joanna (39 with two children 10 and 6, RA for six years)
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 854
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Hi Monique and welcome. It is good to see that all the wise people on the forum (is that a pig flying over?) have already given you good advice. We all help each other on here and you will never be alone with this blasted condition again.
Eleanor x
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Rank: Newbie
Groups: Registered
Joined: 12/8/2009 Posts: 5
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Dear All, Many thanks for all your kind replies and support. Had some fluid taken out of both knees today and 3 injections of steroid (1 in each knee + one in the bum). Was told to stay in bed for 24 hours which is fine as I am very tired. Methotrexate to be increased to 10 tablets. Was told I would have to inject myself with methotrexate in future but not sure if I can cope with this - a bit worried.... For the time being, I can still take methotrexate in tablets form. I usually take half of the dose on Monday nights and the other half on Tuesday morning. I was wondering if most of you take all the tablets in one go and if it is likely to make a difference ? I am sorry to hear that some of you are young mums, it must be very difficult to cope with young children to look after. Looking forward to knowing you better. Best wishes, Monique xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Well done Monique! I hope the steroids help VERY much! I have had my knees aspirated and injected more times than I care to remember and it usually works beautifully and brings quick relief.
You MUST rest properly for as long as you can- a whole 24 hours off your feet will help so much to allow the steroids to work and help as much as they can.
MTX can only be taken all in one go, I am sure you know this already...did you mean MTX or other meds too? The injections are supposed to help with side effects like sickness.
Much love,
Amanda
PS; Beautiful name!
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Hi Monique, welcome to the forum. I hope you are getting a lot of benefit from your bedrest this weekend! Speak to you soon, Franky
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Monique,
Glad the appointment went well.
I take 25mg (10 tablets) of methotrexate all in one go ... usually straight after breakfast with all my other tablets (excluding folic acid). Personally, I rarely feel anything more than a little queasy so it works for me but I know there are others who feel really ill on it. Try taking it in one go and see how you get on.
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Monique, Glad you've got some help with the steroid injections. Hope they work well for you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Monique, sorry to hear you are having a bad time but glad that you appear to be getting some treatment. Hope you manage to rest and the steroid lick in quickly.
Julie
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 585
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Hi Monique what a lovely name welcome to the forum where you will have a lot of help my name is Mary L I have had RA for 14 years and MS for 3 years one daughter who will be 14 tomorrow (tried it once and dident like it  ) on mtx rtx this works for both the diseases I was on humira it worked for 4 years which was great but sadly it stopped working right for me look forward to getting to know you better take care Mary L
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Rank: Newbie
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Joined: 12/8/2009 Posts: 5
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Many thanks for your replies, I'll try to take the 10 tablets of Methotrexate in one go tomorrow rather than splitting the dose in 2 (this was suggested by the specialist nurse at first to avoid nausea). The treatment I had on Friday made a real difference ! I don't have to climb the stairs on all fours and getting up is so much easier. I really appreciate getting some relief from the severe pain I have had for the last 5 weeks too - lets keep our fingers crossed! I hope you all have a nice peaceful everning, painfree ! Love, Monique xx
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