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Rank: Newbie
Groups: Registered
Joined: 7/6/2011
Posts: 3
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Hi, I am a 38 year old female who has been diagnosed on the last three months. I have been exhibiting symptoms for over 5 years (I believe brought on by the birth of my first child at that time). My paternal grandmother had RA very badly to the point that she had claw hands with joints like golf balls. I had been back and forward to my Dr, even seeing a Rheumatologist who told me there was nothing wrong- put on anti inflammatories and codeine until I insisted that I was seen through my Husbands Medical Insurance privately....bingo, diagnosis on the spot. My Dr maintains that my Rheumatoid factor was always negative hence he did not think it was RA. I am currently just starting Penacillamine due to liver function issues and am on steroid jabs every 6 weeks to keep me moving. I am positive about this and I am not going to let this affliction get me yet......  I excercise for an average of 4hrs a week both in and out the water, doing Zumba (minus the big jumps) and Aqua Fit. Currently I have seen a physio about the damage to my hands and wrists and am waiting for OT appointment due to muscle wastage and a wrist splint to wear at night. I would love to meet new people in similar situation to me in my local area and hear from others who love to chat.  Thank you, hope I don't sound like a winger Tarot
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Hello Tarot and welcome. Sorry you have been diagnosed with this horrible condition. I am Tracy, 40, single mum of a 16 yr old boy. I was diagnosed Feb 2010 after having had undiagnosed Glandular Fever. I am sorry, never heard of Penacillamine. Don't ever apologise for 'whinging', no-body whinges nor apologises on the forum. It is a place where we can discuss, ask questions and advice from those who 'know the score'. We all need to let off steam in whatever way you see fit on here. Look forward to getting to know you, keep posting Trace xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Tarot
A big welcome from me. Sorry you have RA but this site is brilliant there is always someone who will know
how you feeling and why we feel the way we do. We all moan at some point and it is great that there are
people who really do know how we feel.
I am from Somerset and an RA group has been set up in Taunton 3 months ago. If you ring the NRAS
helpline they will let you know where your nearest meeting will be.
I have not heard or tested your drug I have been on and failed mtx, hydro, leflun and now starte tnf / humira
in June - still waiting for the miracle to happen.
Keep posting
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Tarot Welcome to the forum I'm Jean, 68 years young, married to Steve with one daughter and two super grandchildren. I've had RA for about 9 years now. If you have a look on the main NRAS web site, there is a section which tells you all about any support groups in your area. If there isn't one - you could always consider starting one  . I have heard of the drug you are taking, but don't know anyone else who is taking it. You are not allowed to apologise on here - it's a safe place where you can tell it how it is. We all understand. Take care Love Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Tarot Hello and a warm welcome to our forum, you will get lots of understanding and support together with invaluable advice. Good to know you are being strong and positive  helps a lot if you can, and well down with the exercises. Hope you are able to find a local group, look forward to hearing from you. Best wishes Julia x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Tarot, big welcome to the forum. Im Heather, 48 diagnosed 2 years ago on mx, leflu and hydroxy. Dont ever apologise, everyone here knows exactly what you are going through!
Take care and hope things improve
Heather xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi and welcome to lovely NRAS.
I am Jenni, Im 35 married with 3 children and I have severe disease.
Sorry to hear that you had such a job being dx- sero negative disease is always more difficult by definition really. Pennaciliamine is an unsual choice but if liver function things at a ? then MTX might not be an option I guess, right now anyway.
I want to tell you that my gran has severe RA, but her RA is really very different to mine. I have a very systemic disease whereas hers is not quite the same. She has had lots of surgery etc over many yrs. The good news is most patients dont get this way. most do brilliantly on a long list of drug treatments, sadly there is no cure but there is a raft of treatments that are so effective these days- not like when your gran was diagnosed.
Also, there is evidence to say that severe RA is dying out (YES!) and that it is far, far rarer now. I have been told in the past that only 3% of RAers get severe disease, but it might even be less than that with the new evidence.
Anyway, thats enough from me!
Welcome again
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Tarot,
Welcome to the site, you will be able to chat as much as you like on here and there is so much knowledge available.
I consider myself lucky, that I was diagnosed at the age of 51 and didn't have to manage RA as well as bringing up my children, there are so many of you youngsters out there and I feel for you.
Take care
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Tarot, welcome to the site. I am Barbara, 57, diagnosed just over two years ago. I am married and four grown kids, youngest starting uni in Sept. I work as a childminder, so quite active, well, as much as I can be! Everyone on here is very friendly and helpful. As others have said, if you call the helpline they will let you know of a group near you. It is a good idea to find others with the same illness, someone who understands. Maybe I need to call them myself as well as advise you lol!! Feel free to come on and whine, moan, complain, rejoice (sometimes!) and just to chat xBARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi Tarot Welcome to the site but sorry you have RA. I have not heard of Penacillamine so cannot help in that regard but we are always hear to listen. The word "whinging" is not in our vocabularly so again can't help you there You are asking informed questions and want to talk to like minded people so nothing wrong with that. Even what you consider to be a silly question will ring a bell with someone on here so keep the questions coming. I am 48 and was diagnosed in January 2009, although I think I have had it all my life but it has been passed by on diagnosis on several occasions. Like you it wasn't until I used my medical insurance when I became really ill and knew something was not right that I was diagnosed correctly. I have been on a long list of medications but unfortunately nothing is helping at the moment. I am ever hopeful as there are always new drugs to be tried. It is a question of finding the right one for me. Keep posting as you will find out so much on this site from a lovely bunch of people. Take care Jackie xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi. I was on Penicillamine for many years in the 1980's. It is one of the earlier NSAIDs but
had fairly good tolerances. Sorry I can't remember dosages. It wasn't till I changed Hospitals
that I stopped it I then tried most of the others until finding something else (steroids) that really worked.
As you can see that was a long time ago!! Keep positive and keep badgering your GP and consultant till
YOU feel you are getting the help needed. Keep reading this forum as it is invaluable for ideas of help and hints
to cope and a listening ear. Take care. Listen to your own body. You will need to be your own counsel.
Regards Anne
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hello Tarot - Just wanted to say good luck with the treatment - its good that you had the private route to fall back on finally.
I did this route straight away since sudden on-set of symptoms in February whilst on 2nd day if holiday to Dubai!
My GP and private route led to quick diagnosis and start of medication and I am hoping to see results..
Keep using the private route until a stable dosage is reached I would suggest.
- Darshin (male 46)
- on triple medication MTX, Hydroxy and Sulfasalazine.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Tarot, Welcome to the forum, but sorry you have RA. I`ve not been on the drug you`re on, so can`t help with that I`m afraid, but I hope it works for you. It`s a source of great joy when we find the drug that works!! I`m Kathleen, diagnosed almost 6 years ago, and currently on humira plus various other painkillers etc. Kathleen C x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Tarot Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us! I'm Lyn, married to Mike, we have four 'growing-up' children and live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA 23 years ago after the birth of my daughter and have since run the gamut of medication (although more options are popping up now and again thankfully!) and had several surgical procedures along the way. Currently on Enbrel, Methotrexate, Prednisolone and Naproxen, and a wagon load of pain killers! Been largely out of control for the last 12 months, but heyho things can only get better ... hopefully! Penicillamine is one of a group of drugs called DMards, Disease Modifying Anti-Rheumatic Drugs. These are used in the early stages of disease, often in combination, and many people respond well to this type of treatment. Here's a link from the NRAS website about DMARD therapy including Penicillamine ... it's the one drug in this group I haven't tried! Joining a local group would be good support for you and a place to meet with others with RA. There are 40 or so groups now around the UK and the number is growing on a regular basis! Look forward to getting to know you. Do keep posting, Lyn x
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Rank: Newbie
Groups: Registered
Joined: 7/6/2011
Posts: 3
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Wow, I am in tears - you are all so lovely. No one I know has any thought or understanding as to the pain when your children hold your hand and accidentally twist or the difficulty just walking some days, I am also so tired all the time. Your messages of support are amazing. Thank you Tarot 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Tarot wrote: No one I know has any thought or understanding as to the pain when your children hold your hand and accidentally twist or the difficulty just walking some days Ah yes, small children and RA really don't go well together, I know, I understand, I have been there with four of them. It's a tough call but don't be too hard on yourself. Give yourself time and plan your day well in advance, Keep the pain relief well topped up, even if it goes against the grain to keep popping pills, it really does help. There are lots of ways to enjoy and share time with your children ... just means putting on the old thinking cap and being inventive at times! Can't help with the walking difficulties I am in the same place right now! Just managed the shopping and a short trip in the car this week. Heyho, things do get better, I promise. Pecker up Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Tarot
Only just picked up this post. It is awful when you have young children as you want to be able to do everything with them and they don't understand when it hurts just holding hands. I really feel for you but it is early days in your diagnosis and when your drugs kick in you will find it is much better. This could take anything from days to weeks, everyone is different. I hope you feel the benefit very soon.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Tarot, I am Lorna, I have had RA for almost 4 years. Welcome to our forum, we all have a laugh and a cry sometimes but everyone is here for one another. I was very ill to start with but things can get better when the drugs kick in. I was on the triple therapy, and have done very well on it. keep being positive it really does help. Good luck with the treatment they give you. Take care Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 1/27/2011
Posts: 68
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tarot just read your story and can relate to it like it was yesterday.I had my son at the age of 23 and was diagnosed with ra within 18 months apparently it was the shock and trauma of childbirth that triggered it of.I did have a very difficult long labour and forcepts delivery and have no other member of my family ever having ra.So I can relate to this place your at.Just like everyone else on the forum any questions you have just let us know and there is always someone out there that has had or knows about your concerns Take care Mags (I'm in Cheshire)
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Rank: Newbie
Groups: Registered
Joined: 10/19/2011
Posts: 2
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Hi Tarot
As an RA man of some 20 years, there are two pieces of information that I would give you. The first is that the first treatment often does not work. Research is being undertaken to find out why but vasically different people respond in various ways. The current methodology from NICE is to hit newly diagnosed patients with high doses of any particular drug. When I was diagnosed it was a softly softly approach so control took a lot longer. So rule number 1. DO NOT GIVE UP. Secondly try to join a support group. Someone has already mentioned this. We have one for example based in Birmingham City hoipital and meet once a month. It is growing and new members are very welcome and go away after the meeting in the knowledge that they are not alone. There are lots of groups around. Very best wishes johnr
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