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Rank: Newbie  Groups: Registered
Joined: 1/23/2012 Posts: 7
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Hi My name is Gwen and I live in Cardiff, Wales. I have three young children, aged 2, 5, and 6 years old. I have had RA since June 2011, which seemed to come on over night. I have been crippled with pain, unable to dress myself, get in and out of the bath on my own, I can't sleep, etc... Things have improved a little since being on Mycophenalate, and i'm waiting to start Etarnocept in a few weeks time. I'm also on 40 mg prednisalone, and depo injections monthly. I had a bad flare up this morning, which has prompted me to actually sign up to this forum in the hope of learning more about the disease and how others cope with it? I have been in denial for far too long.  RA really gets me down sometimes, and I get quite anxious when the pain and my mobility is at it's worse. I have a pre existing condition called Wegeners Granulomatosis. Thank you for reading, and I look forward to being part of your community. Best wishes, Gwen RA diagnosed in June 2011.
Previous history of Wegeners Granulomatosis since 1995.
Current meds: Mycophenalate 2000mg daily, Prednisalone 40mg, - waiting to start ANTI TNF.
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Gwen
A very warm welcome to the forum where you will find lots of support and encouragement. You can really unload and know that people will understand where you are coming from.
I am so sorry that you have been having such a rough time of it and do hope that the Etanercept will work well for you.
I have been on Enbrel for a year along with Methotrexate and it has transformed my life. I am 57 and have been diagnosed 5 years.
Look forward to hearing more from you.
Best Wishes
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Gwen A warm welcome from me too  sorry to hear that you also have W G to contend with, the drugs for RA now are brilliant for most people and really do turn your life around, so hope all goes well with the anti-tnf you will be going on shortly. You may want to look at previous posts, I often refer back to them for guidance, my GP today knew nothing about methotrexate by injection and hadn t even heard of the anti-tnf I am now taking  Please keep in touch and look forward to hearing from you. Best wishes Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Gwen
I think you made the right decision today by joining. This is a good place where other members will understand what you are going through and will give you lots of support. I am newly diagnosed too (August 2011) and I would like you to know that I was so crippled in the beginning that I could barely walk, could not get downstairs for two weeks and could not get in the bath. Now I am functioning quite well and have managed to get back to work, albeit part time and on amended duties. I'm not saying this is easy, or that I'm not in pain, or that I have perfect function but things are so much better than they were and I hope that my improvement in symptoms gives you some hope. I am going to look up your other condition now so that I have a little understanding of it for when you post in the future. Welcome to the forum and I hope to hear more from you. Best wishes from Naomi X
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Gwen
Welcome to the forum. It is good to meet you. You have definitely done the right thing by joining the forum. You need lots of support, especially having three young children, and you will certainly get it on here. I am Sheila, aged 60, diagnosed 9 1/2 years ago, on methotrexate and currently in remission. Gwen, I want you to know that a year ago I couldn't get in or out of bed without being helped by my wonderful husband. He had to push me to sit up in bed and pull me up to stand to go to the bathroom. Getting dressed was the most excruciating thing I have encountered etc, etc. I had 23 joints affected very badly and I am now in remission. There are many factors involved and I have no idea what has put me in remission. It could be a combination of things or one thing I don't know but what I do know is that if it can happen to me it can happen to anyone. I have no idea how long it will last (7 months now) but if it all ends tomorrow I know there is always light at the end of the tunnel. I hope and pray that the same will happen to you and all my friends on the forum. Please keep posting. You will learn a lot, be able to share your own experiences and have a good moan or a bit of fun if you like.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello Gwen and a very BIG welcome from me! Its Jenni here, mad mum of 3 and severe crappy ra... I turn 36 today I have a 16 yr old, 14 yr old and a 4 yr old and a long suffering hubby and a very soppy ginger cat. My cousin is a GP in Wales and so any questions you need asking and are afraid to- pop them on here and I can ask for insider knowledge! Had RA for about 15 yrs now the myclofenalate is an unusual choice as its not so good on RA joint related stuff according to my rheummy and etanercept is much better. i felt better within 24 hr hours on that when I was about 5 yrs in. i have direct payments to help me get people to help with the children. its been a lifeline to all of us keep posting Jenni PS on NRAS facebook im a "friend" Jenni B-l you are welcome to "friend" me, or ring the office if you fancied a chat and wanted to be put in touch. how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Gwen
Welcome from me, sorry to hear you have had RA from such a young age. This site is great and I am sure
you will find it useful for all different reasons.
I am Rose aged 57 and diagnosed in 2008. Failed on DMARDS and 1 TNF, and am waiting for a 2nd (RTX)
to work. I am married and have 2 children and 1 granddaughter.
Keep posting
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Gwen,
Welcome to the forum but sorry you have RA. It must be especially hard for you with 3 young children.
You'll get lots of support on here and hopefully you will pick up some tips on how to cope and pace yourself with RA.
I am 62 and have had RA for 11 years, now on mtx and humira.
Hope you can get started on the Etanercept soon and it works well for you.
Looking forward to getting to know you.
Love Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Hi Gwen,
Welcome, it has been a couple of years since I logged on to the forum but like you I have a young family and when I was first diagnosed I found this forum invaluable, such a support and source of information. I hope you find it a comfort too. Jo
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Hi Gwen,
Welcome, it has been a couple of years since I logged on to the forum but like you I have a young family and when I was first diagnosed I found this forum invaluable, such a support and source of information. I hope you find it a comfort too. Jo
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Gwen, and a very warm welcome to the forum. Hopefully you`ll find lots of info and support on here - I bless the day I joined. I can empathise with you over being unable to dress, bath etc. - I was in the same boat very soon after diagnosis, and I was just about in despair.I tried - and failed - on a variety of DMARDs/combinations of DMARDs, until I finally went onto anti-TNF therapy, which in my case was humira. Soon after that things really improved, and was able to enjoy a much better quality of life. I`ve been on it now for over 4 years, so I hope the etanercept will do a similar job for you. I`m Kathleen C, aged 61, married to Nick, with two grown-up sons and two little grandsons. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Gwen,
welcome.
you will always find someone to help on here, i've learned to much.
it's so scary well it was for me when diagnosed and to be honest i take it day by day that's how i cope.
hope the meds work for you quickly,
i was diagnosed about 20 months ago and was on Methorexate and Hydroxy .. added Humira 5 months ago and slowly have slowly seen an improvmenent,
keep posting and try to stay positive.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
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Hi Gwen,
Welcome to the forum. You will make good friends and get plenty of information on here.
I am Kathleen i am 67 and i have had RA for about 7 years.
Kathleen Mc.
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010
Posts: 77
Location: Hampshire
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Hi Gwen My name is Deborah I am 47 and married to Geoff. I was diagnosed a year ago last September. This forum is full of people that truly understand how we feel so its a great place to come for friendly advice and to off load when need be. Take care Debs
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Rank: Newbie Groups: Registered
Joined: 1/23/2012 Posts: 7
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Thank you so much for your kind replies, they really give me hope! I just have a few questions, I hope it's ok to post them here? Do you have swelling in your face? I do, but I also have RA in my jaw? How do you prevent the bad days? Do you feel like you have flu some days? Does it make you depressed and anxious sometimes? Have you changed your diet? Can you tell what makes you flare? I find that if I overdo it the day before, I pay for it with RA the next day. What pain relief works? I find very little makes any difference! Thank you! Gwen XXX RA diagnosed in June 2011.
Previous history of Wegeners Granulomatosis since 1995.
Current meds: Mycophenalate 2000mg daily, Prednisalone 40mg, - waiting to start ANTI TNF.
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Gwen
I will try and answer your queries in order:
1. I haven't had swelling in my face but when I was first diagnosed I had RA in my jaw. I had to force my mouth open to eat. It was very painful but once the mxt started to work my jaw has not been affected since.
2. I am afraid you can't prevent the bad days. I just took painkillers and tried to be positive telling myself that not all days would be like that.
3. Yes to all three of these. Flu like symptoms, depression and anxiety go hand in hand with RA.
4. Yes I have changed my diet. I eat very healthy food and as many foods containing antioxidants as I can e.g. blueberries, black cherries etc.
5. Sometimes I feel extremely tired and achey before a flare up.
6. Certainly everyone on the forum will tell you that you MUST pace youself. You are right, if you do too much you will certainly pay for it the day after. It is very difficult to stop yourself from doing things when you feel ok but you must always remember not to overstretch yourself. It isn't worth it.
7. I think pain relief is a very personal thing. What works for one doesn't work for another but I agree that if you have a very bad flare up you might just be able to take the edge off but nothing makes a lot of difference.
I hope this has been helpful for you. I am in remission at the moment but I am very aware that this disease is very powerful and I am under no illusions that it may return but I am giving it my best shot and trying to keep myself active, eat healthily and I pray that my remission will last at least until after my son's wedding in June.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Oh goodie! Nice meaty questions! Um right.. Pain relief- gp can refer to pain clinic Pain comes in peaks and troughs but in more severe end ra there is never no pain really! The idea is to steady your pain enough so you aren't howling If howling is 10 and nothing is 0 then do a pain diary every hour You need to iron out the pain to around 4 I would say to be bearable When my general level gets to 6 it's not good Beyond 7 I'm in trouble So I take paracetamol and have zomorph Then I have oramorph for breakthrough pain I am so loving the gabapentin for neuro pain toO! Have a look at the traffic light method I've posted on here about for energy conservation but ideally youneed to see an occupational therapist for an 'energy conservation' session I think you would find the spoon theory helpful It's on the www.butyoudontlooksick.com site which is rather cringeworthy American stuff but the spoon theory is worth it Re jaw. Yes I'm affectionately known as 'aardvarking' when mine goes off on one as I even talk out of one side of my mouth as it's just so painful! I have some rubin gel called phorpain It's on prescription You rub it into your cheek nr your ear or wherever Jenni x how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Gwen, I answered you on the other post. I am Lorna, welcome to the forum, I like others was very ill to start with but it did get easier to deal with. It must be so difficult with small children, mine are grown up now. Try to look forward it wont always be this hard. Your body and mind have so much to deal with at the start. I do keep well now so there is no reason you wont be the same in time. The drugs advance all the time. Keep posting and don't be afraid to ask whatever comes into your head. We all understand, we are just a little further down the road. Thinking about you and sending lots of hugs to make you feel better. Lorna xx
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Rank: Newbie Groups: Registered
Joined: 1/23/2012 Posts: 7
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Thank you so much for the replies, I really appreciate it. I've seen an OT, but she wasn't very helpful at all. I practised OT at Brookes myself, and I was told 'well, the reality isn't as they teach you on the course.' I felt so angry and let down! I WANT to be able to get in and out of the bath on my own - why is that such an unreasonable goal?!  I'm waiting to have my sinuses drained as it is a constant cause of infection for me (was meant to be last week, but my surgeon couldn't fit me in) and I can't start the Anti TNF until 2 weeks after that procedure. I just want a normal life again. The last year has been horrendous. I feel ashamed to say, but there have been times that I have felt I couldn't go on. It was at that point I made a huge effort to contact social services, and have a care plan put in place. I now have carers who help me take the kids to school, and tidy the house etc. I couldn't cope without them. It's so hard to get the help you need though, when it's hard to do so, and you feel so ill in the first place isn't it? RA diagnosed in June 2011.
Previous history of Wegeners Granulomatosis since 1995.
Current meds: Mycophenalate 2000mg daily, Prednisalone 40mg, - waiting to start ANTI TNF.
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Rank: Member  Groups: Registered
Joined: 12/3/2009 Posts: 21 Location: Aberystwyth
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Hi Gwen and welcome to the forum. I’m Sara from near Aberystwyth in Mid-Wales. I was diagnosed with RA in 2004 and I have three little ones at 8, 7 and 5 years old (so I know of all the challenges that having three very young children can bring). I’m very often down in Cardiff so if you ever want to meet up for a chat you are welcome. Sending loads of hugs your way ((( ))) Sara x
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