Hi Tina

I was diagnosed last August after having symptoms for about 8 months before that.

I have been on methotrexate (which didn't work) and sulfasalazine (which I had to stop coz it made me poorly). I should be starting Leflemonide (bad spelling) soonso fingers crossed for that.

It sounds like you have it worse than me, but I have just started exercising and I am feeling really possitive that it will help towards me getting better.

Hopefully the methotrexate will start to work soon and you will be able to get somewhere towards yor 'normal' life.

I try to keep myself positive with this though,

"I won't stop living life because of my RA, I'll live life to it's fullest in spite of RA"

Stay possitive

Love Amy

Hello Tina.

Sorry to hear youve got ra and that very active lifestyle has had to stop, but there are other things in life you are about to discover that youd never have done before.

I have children (16 and 4 yr olds at home) but I use direct payments to sort out my care and supports, that's a phone call to Ss and they come and write down your needs and give you ££ to pay someone to come on in and work for you. No, you don't have to have dla etc it's just based on needs.

There are other schemes about to consider like canine partners (I had a canine partner for a time- fab doggy!)

There's a great deal of loss at the start, there will be times when you feel that loss acutely again too but there are times in the middle, that you need to make the most of when you can.

All the best


Jenni

Hello Tina, and welcome to the forum, though sorry you have been diagnosed with RA. I joined the forum for more or less the same reasons as you - to find out how others dealt with it, as I didn`t know anyone else who actually had RA.

I was diagnosed over six years ago, and having taught PE for many years I took it very badly. However, after trying and failing on various DMARDs, I was finally put on humira, which has certainly made a considerable difference to my quality of life. Having said that, PE days are well and truly over, but in truth, having had surgery on both Achilles tendons prior to RA, I had more or less ground to a halt anyway!

I`m glad tramadol has given you some pain relief - I use it too - and I hope you enjoy your meal out tonight.

Take care,

Kathleen x

Hi Tina and welcome to the forum. I'm Naomi, aged 47 and I live in Devon with my partner Nick and our 4 hens. I have one son, Theo, who lives and works in Taiwan. I miss him but thank goodness for face book which enable me to have regular contact. I was diagnosed last September after becoming very ill last April so the early months of RA are still quite raw in my mind. I just want to say that it does get easier as the meds start to kick in and you start to come to terms with this life altering illness. It does take some time but it will happen. I'm lucky to have a supportive partner as I don't have family nearby and many of my family members have been far from supportive anyway. I hope you have support from people close to you. I have joined a few RA face book groups and this has been great for me. I know it's not everyone's cup of tea but it has helped me and I have made a very close friend on there from America who is in the same boat as me. We message regularly and this helps me feel less isolated with it all. Good luck with everything and keep posting. Naomi x

Hi Tina,

Welcome to the forum, where we all know exactly what you are going through.
You will never be alone and get lots of sup[port now you have joined us.
I am 62 and have had RA for 11 years, now taking mtx and humira. I live with my husband Ian and we have one daughter,23, who at present is working in Canada, we keep in regular contact with her through e-mail and skype, it really shrinks the distance!
Looking forward to getting to know you.

Love Doreen xx

Hi Tina

Sorry my welcome is a little belated but I've been pretty much out of action for several weeks due to very ill health but that's another story

Anyway, before I sideline myself with irrelevancies, a warm welcome to the NRAS forum where you will make lots of new friends, find much useful information and receive support from others with similar problems. My name is Lyn, I'm married to Mike and we have four 'kidults', Abby who is 24 and lives and works in Stratford Upon Avon, Ian and Jake who are 19 and Louis who's 17. We live in Thornton Cleveleys in NW Lancashire. I was diagnosed with Rheumatoid 24 years ago and have since run the gamut of medication and many surgical procedures along the way. A month ago I was hospitalised and been diagnosed with (probably Rheumatoid related) Dilated Cardiomyopathy and Advanced Heart Failure. Rheumatoid meds are all now up in the air and I'm waiting for them to crash land. Not sure what's next!

If you are able to get to the Leicester support I would highly recommend it. A forum friend, Ann Montgomery, and lovely lady, is one of the co-ordinators who runs the group and arranges meetings etc. They would be delighted to see you I'm sure. NRAS will be able to pass on your details to Ann who can then give you more information, if you are interested. I am a group coordinator and have to say that the people who come along to meetings find the companionship, support and informative talks very useful and most attendees return on a regular basis.

Good luck with your appointment; make sure you get the pain relief sorted, it's really important! Be positive, there is a life with Rheumatoid, it's not the end of the world! Look forward to getting to know you.

Lyn x

Hi Tina - you've made a good decision to join this forum, as people are very knowledgeable and kind, but I'm really sorry you've got RA. Please don't think that it's your fault - the reason for getting RA is unknown but it certainly isn't because you've been an active sportswoman - if that were the case then Jessica Ennis would be RA+!!!!! :-)!

My name is Sylvia, I'm 54 with 4 teenage children, a husband, Andy, and I was only diagnosed a month ago, so like you I'm reeling with all the information and coming to terms with it all. I've been in increasing pain for the best part of 3 years, but finally got referred to a rheumatologist in the past 3 months. After an inconclusive first meeting with the registrar, I was finally seen by the consultant who made an immediate diagnosis of RA and got me started on treatment the same day! I had a steroid injection (in the buttock!) then and there, and started on steroids (Prednisolone tablets 20mg per day for a week then decreasing for the next 3 weeks), plus I started hydroxychloroquin sulphate and I've just started on methatrexate this week. The steroids have reduced the inflammation and pain to zero and I feel like superwoman again! However, this is probably just a temporary respite because these can only be short-term as they can cause osteoporosis if taken for the long term. The MTX and hydroxychloroquin should have an effect on the disease and reduce the symptoms, but they take a few months to take effect. In addition I take Naproxen which is a painkiller and anti-inflammatory. My understanding is that this cocktail is a fairly normal starting point for newly diagnosed RA.

Not everyone can tolerate every drug, so there is often a period of try it and see while the rheumy gets the mixture right for the individual. It seems really confusing because you will also take various supplements to counteract possible side effects, so I've found it really useful to write everything down, and talk it through with as many people as you can. This forum has been especially useful because you will soon see the same drug names being bandied about and everyone is willing to share their experiences.

I'm in the early days but so far I'm delighted with the effect of my medications. The steroids have done a fantastic job and I'm down to 5mg per day and will stop them in a few days. so far there has been no recurrence of inflammation. Meanwhile I have had no problems with the 2 DMARDS and am optimistic that they will work well for me (as they do in the majority of cases). Inevitably I've had to adjust my expectations, especially about the effect of fatigue, but I believe very strongly in keeping a Positive Mental Attitude
and that helps me to make the most of this situation.

The best advice the rheumy gave me was to be honest and give up being "stoic" - so make sure you tell people how much pain you really experience - they can help you. And that includes your son and partner - they love you and will want the best for you, so let them help you cope with this.

I hope I haven't come across too strong, and please do keep posting

Best wishes - Sylvia xx

So many lovely remarks - I am now feeling a little more positive.
I went to the hospital today (I go QMC) and I have a lovely Nurse called Alan, he is so supportive. I explained what my boss has been saying and doing and he (and my consultant, Dr Pande) both agree that she is bullying me. They have offerred to write to her explaining the difference between osteo arthritis (her illness) and RA and suggest she "back off" as they feel the stress is having a negative affect on my emotional wellbeing and thus increasing the pain I am suffering. They also feel that the sickness I had over the weekend was due to Tramadol - so I have stopped this and increased my methotrexate again up to max dose.

I will go along to the Leister support Group in July (cant go this month as have prior appointments) with my daughter and hope to meet some of the wonderful people from here.

I also think the idea of leaving a few leaflets around will be a good idea as my partner doesnt like to talk about this as he doesnt handle emotional upsets very well. Also Like Jackie, I am also at fault for trying to play down how bad I feel to my nearest and dearest when I see them infrequently - its only my daughter that knows the true extent.

So some excellent advice that I will be acting upon - thanks.

Tina

Hi Tina,

Welcome from me, sorry it's late, but I have been quite ill with pneumonia.
I am Barbara, married to Roy 4 grown kids, youngest daughter still at home, but going to Cumbria uni in September.
I was diagnosed in July 2009. Am currently on 20mg methotrexate, 400mg hydroxy and Humira, alongside Tramadol pregabalin paracetemol and so on....!!!
I joined for the support too, and definitely so glad I did, I have had so much help from everyone here, don't ever be worried about asking questions, everyone will help as much as they can
Sorry you are in so much pain at the moment, it really does get better with time, I know that sounds like what everyone says, but it is true!!
It must be hard as you were so active, but at the moment you need to rest as much as you can, and certainly don't let your boss stress you out, take her some leaflets to read, and she can see for herself the difference between OA and RA
I am surprised too that you haven't been treated more aggressively with triple therapy, but maybe your consultant wants to see how the mtx does for you

Take care, and wishing you to feel better

Hi,

The forum has certainly been an eye opener (even tho its only been a week). I was told I couldnt have any other anti inflammatories as I was on Prednisolone (now down to 5mg) and MTX, and yet on here I see that so many others take lots of other medication along with the MTX - so confusing

Oh well, I will just have to take her advice for now and if my pain continues to increase, along with the nausea and headaches after next Mondays 25mg MTX then I will ring the nurses hotline for more advice. I am trying also to take advice from folk on here and allow myself time to relax more instead of trying to rush round like I used to.

Thanks

Tina