My story so far....: Hello everybody, Having spent the... - NRAS

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My story so far....

rheumatoidymummy profile image
8 Replies

Hello everybody,

Having spent the last few days reading other peoples blogs I thought it was about time I added one of my own.

So....my story so far. I'm a relative newbie to all things Rheum so I'm still learning. I was diagnosed in October 2008 just a few weeks after the birth of my second child. I was only 31 and it was devastating. My maternity leave went by in a whirl of hospital appointments and my mother and mother in law took it in turns looking after me as I was totally incapable, just like my newborn. I struggled to pick him up and change nappies and do all the other things a new Mum wants to do and wasn't able to spoil my daughter who was nearly four at the time so she was totally bewildered by all the change in the house.

My Rheumy gave me a few weeks grace and got me by on steroids so that I could feed my son but in January 2009 I started on Methotrexate as he was keen to 'hit it hard'. Unfortunately Methotrexate alone couldn't hit it hard enough and now I take Hydroxychloroquine, Sulfasalazine, Prednisolone and Diclofenic as well.

Today I'm feeling a little sorry for myself after a trip to the hospital having been stabbed in the wrist and ankle to try to deal with my most recent bout of synovitis under tendons and the news that I will have to increase my Methotrexate dose to 22.5mg a week means I'm not a happy bunny. My war wounds are sore (d@mn that pesky corticosteroid!) and I'm not too happy about having to take more Methotrexate but my lovely rheumy says that as I am - in his words - a 'youngun' - I should be able to tolerate that higher dosage without ill effect.

I'm looking forward to the future though - with a young family to take care of I don't have much choice but to be positive!

Looking forward to getting to know you - especially those I haven't already met through the NRAS forums.

xx

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8 Replies

I'm one of the people who really understand your situation as I too was had RA after giving birth (16yrs ago now though!!) well I say after I actually had it through pregnancy which apparently is quite unusual as women tend to have a remission. Like you I too felt like the new born unable to do anything so cruel isn't it not to be able to enjoy your most precious gift. But I know you wouldn't change anything (apart from the obvious) as I wouldn't either, your rheumy is right you should be able to tolerate the higher Mtx I went to about 25mg the only thing is the nausea I just hate it. Your kids will keep you going even though it doesn't feel like it at times they will give you the strength you need to cope with the illness, you will probably know that already.they need you to be strong which I'm sure you are. mand xx

Just wanted to say Hi as I'm new to all this too.

Hope the increased Methotrexate helps. I was told to increase mine from 20 to 25 mg but am just building up the courage as I hate the nausea and fatigue as well.

My youngest is a bit older than yours but I know how hard it is not to be able to do the things they need you to do. I think we all have days where we feel sorry for ourselves. If we didn't we'd go mad!

Take care.

Ann

x

emandedmum profile image
emandedmum

Snap! Such a similar story to my own, reassuring for me to read another mum's point of view although it sounds like I've been more lucky with my response to mtx than you have been - maybe it's because I'm a youngun, I was only voicing that thought to my mum the other day as some of the older ladies on here seem to be struggling to find the right treatment! Before this I hadn't 'met' anyone else in my situation and I'm looking forward to reading your next installment! Jo x

Gina_K profile image
Gina_K

Well done you young uns! cannot imagine how hard it must be with little ones. The one thing I was grateful for was the fact that my youngest was 18 when I was diagnosed. Brilliant you have this forum to discuss issues specific to your situations. x stay strong. You should have a look at Rheumatoid warrior u can connect on facebook and she has lots of very up to the minute info in U.S.

Lorrayne profile image
Lorrayne

Gosh, so many of us, so young and after the birth of our children. I was 28, diagnosed with RA weeks after the birth of my daughter and totally understand being incapable of looking after that precious gift. It turned out for me I had had an early menopause as well, so I still have one daughter! Tried hard for another tho! but I am truly thankful for the gift I have, she is my focus, inspiration and a great friend and I love her loads.

rheumatoidymummy profile image
rheumatoidymummy

My goodness - I had no idea there were so many other people in the same situation! Yesterday in the hospital waiting room (and it was a long wait - over an hour and a half!) I was the youngest person there by about 30 years! My Rheumy had told me that pregnancy can start the RA off but I've never spoken to anyone else in the same situation as me - I can't tell you how comforting it is to know that there are others out there who 'get it'.

xx

emandedmum profile image
emandedmum in reply to rheumatoidymummy

I feel the very same about waiting rooms, they make me very anxious :(

I have never been given a reason as to why I developed the RA. I have often thought that it was down to a very difficult second pregnancy and being unwell afterwards, that after a year of struggling my body finally gave up and went into meltdown! There was not much commitment to the theory by my Rheumy, I think the presentation of my RA was more of an interest to him at the time than the reasons for it ;)

Hope you have a good day today and are starting to feel the benefit of being jabbed! I go tomorrow :(

rheumatoidymummy profile image
rheumatoidymummy

It's been suggested to me that when pregnant your immune system is sort of depressed to sort your body from rejecting the baby - of course once you give birth it should go back to normal but maybe something happens where it goes into overdrive rather than returning to normal....

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