Hello All,

My name is Rachael, I'm 38 years old and married with two children (ages 6 and 4 yrs).

Have just joined up with the NRAS today, having been looking for ages for some type of internet contact and support with people who are going through the same as I am.

Ironically I trained as an Occupational Therapist approx 17 years ago - have worked most of the time with Social Services dealing with many people with varying severities of RA. This obviously has its positives (in terms of knowing a bit about the condition, joint protection etc) and negatives (always picturing at the back of my mind those people who were most severely affected by RA).

I was officially diagnosed with RA approx two years ago (which confirmed what I already guessed), however had been experiencing the symptoms since my daughter was born in 2005, when I had a very difficult time being suddenly very stiff all the time. Not easy with a young baby!!!

I was initially on Sulfasalzine, then on Methotrexate for about 2 years. Unfortunately however approx 4 weeks ago, after having been stable for quite some time and very active, I had a bad flare up - feeling very stiff again with very swollen ankles and sore heels. The joints in my hands are always very swollen and I already have some deformities in my thumb.

After a routine appointment with the Rheumatologist last Friday where I had a full examination and X-rays it was informed that unfortunately my RA is quite aggressive, and obviously not controlled any longer with the Methotrexate. I have been advised that in view of my age and severity of the RA I should be eligible for anti-TNF and am hopefully about to start that in the next few weeks.

I do feel very fed up at the moment - unfortunately we have had a lot happen in my family over the years - I lost my sister to Leukaemia 18 years ago, and my Dad to a brain tumour last year. It just feels like another thing to hit us!!

Am trying hard to be positive though and keep optimistic about the disease, and the new treatments available.

It is brilliant to have this forum and the support which NRAS offers. I would be particularly interested in hearing from members of a similar age / situation , as its easy sometimes to feel that you are the only one out there!!

Thanks for listening and best wishes to you all!!

Hi Rachael
So pleased you've joined us...Im Ceri 43 and diagnosed 2 years ago, Im on 20mg mtx injections and recently started infliximab whuch so far is not helplng(in fact Im worse) so hoping to try different anti tnf soon.
Not surprising you're feeling fed up with all you've been through and 2 young children! Ive got 3 but they're grown up now thankfully or I would never cope! Your consultant sounds on the ball so thats good..Keep posting and look forward to getting to know you.
Ceri x

Hello Rachael

Welcome from me a well!!!!!!!

I was diagnosed just over three years ago and joined NRAS a few months later. It took me several weeks of browsing the forum before I took the plunge and introduced myself.

I really don't know how young mums cope with RA, I've got grandchildren 5 & 7 and when I look after them I realise just how hard it is. I take my hat off to you.

Everyone on here is so friendly with lots of advice. I've made some good friends on here. It's good to beable to talk to people who understand just how we feel.

Keep posting so we can get to know about you.

Take Care

Paula xx

Hi Rachael.

Lovely to 'meet' you and welcome to the forum. I am Sheila, married to Dave with 2 grown up sons. I was diagnosed 9 years ago and currently on mxt but consultant wants me to go on biologics which I have so far declined. Having RA must be even more difficult to deal with when you have very young children. You certainly haven't had a good time in the last few years. No wonder you are feeling fed up. Try to be positive and take each day at a time. Keep posting.

Sheila x

Thanks for your replies Sheila and Doreen. Am really pleased to find so much support already!

Quick question Sheila - you mentioned that you have so far declined biologics. I may be being very ignorant here and know that they don't work for everyone, but what are your main reasons for that?

Does anyone else have any advice on this? At the moment I am fairly keen to get started on them as the other DMARD's I have tried so far don't seem to be slowing my RA down as they should be, and I'm hoping these may work!

Thanks again,

Rachael

Hi Rachael

A simple answer to your question on why I declined biologics - I thought it was too soon to decide. The longer answer....I had an appnt with consultant in January and she said my disease was very active which it was but I had so many things going on at the same time that I didn't feel it gave a true picture. Within 3 months I had to come off mxt because of a breathing problem, which turned out to be unrelated to the mxt. I was off mxt for 2 months, had a massive flare up that affected 23 joints, couldn't walk, dress, eat or do anything! My thyroid, which has been underactive for 15 years started to go berserk so had to change doses and I came off beta blockers (for migraine) after 20 years and I was very stressed because my hair was falling out in huge handsful. All this in a short space of time must have been a massive shock to my system and probably the reason I was so ill, so I thought my body needed more time to adjust. Consultant just gave me info on biologics and in paticular, leflunomide. I see her on 23 July but I feel great at the moment and all my bloods are fine but I did have a steroid inj 3 weeks ago so still under influence of that. I think I should have said all this when I replied to you but didn't want to hog your space. It perhaps didn't give you the right idea. I am not opposed to biologics and will probably need to take them at some point but obviously I don't want to fix something that isn't broken. I hope this answers your question.

Sheila x

Hi Rachael,

I'm new to the forum to, although I've been a member for a while. My names Sara, 34 years old, married for 13 years with a new 3 year old (was his birthday yesterday! lol)

Still finding my feet with all the information and different meds, thought it was just me having baby brain still

Speak to you again soon.

Sara

Hi Rachael,So young to have this terrible painful illness.I hope you have got a great consultant like mine as in three weeks i have had two emgerency appointments to see him within an hour of phoning the hospital.I have several chronic illnesses i take the stongest dose of sulph.& mtx i have had steroid injections in my knees both shoulders hands having R.A.over all my body including my jawbone.You will find it will be trial & error to recieve the right medication.Try to keep posative rest when your body tells you to,when a joint swells apply an "ice pack" to it help to get the swelling down.
Best wishes
Valerie-R

Hi Rachael, good to meet you, sorry for late reply, the days seem to run away with me!!
I am Barbara, married to Roy, two grown sons and two grown daughter's (youngest now 18 and just left 6th form)
I work 3 days a week caring for two little brothers aged 2yr 8mth and 16 mth, so really get the problems you are having, but at least I get to hand mine back!!! I love them dearly, but wow its hard work!!
I am currently on methotrextate and hydroxychloroquine, was on prednisolone, but consultant wont let me have any more lol!!! He also thinks that some of my pain is fibromyalgia related, but has agreed to me trying an anti-TNF and the end of July.
I hope you get some help with the anti-TNF drugs