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Date: 24.03.2013
From: Shruti

Subject: Does it get better?

Hi there. Just hoping for some other people's experience. I was told I have RA back in 2010 but didn't start any meds as we were trying to start a family. Well 2 beautiful boys later I'm there and seeing my rhummy in a couple weeks. I can't wait. I feel totally crippled at times, struggle to pick up the baby some days and it just gets too much. I feel like I have to put a brave face on for everyone else though.
I went out tonight for the first time in months but 10 mins later but feet were aching I just couldn't stand up! I found myself looking at others dancing away; I was so jealous of how care free everyone looked. I came home early. It was too painful.
Will the meds mak things magically better? Will there be a day that I forget my whole body hurts? Please say yes ....
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Date: 24.03.2013
From: rhona

Subject: Re: Does it get better?

Hi Shruti, Yes you will feel better once you get the right medication. When i first went to the doctor around 12 years ago i felt the same way but with the right medication you will feel a lot better. It is especially difficult if you have little ones to look after but once you get sorted out things will improve. Some people don't get it too bad and the drugs now are so much better than they were years ago so try and stay positive. I hope you feel better soon.
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Date: 24.03.2013
From: marlene

Subject: Re: Does it get better?

Hi there just a quick welcome. It does get better. It takes time to get everything right for you and then as the ladies on here with young children will tell you it is hard but the right meds will help you.
Take care and I hope you feel better soon.
xx
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Date: 24.03.2013
From: kirst

Subject: Re: Does it get better?

hi, I first got arthritis shortly after the birth of my second child. It was horrendous as the pregnancy had masked some of the symproms which came on full force about a month after his birth. It is soul destroying not being able to hold your baby. I found even holding mine when feeding him was impossible most day's but found propping him on cushions helped loads. And I was very luck as I have a brilliant husband.

I also find that I rarely go on nights out, children sort of make going on a night out hard anyway but when you have arthritis aswell it makes enjoying the night out a task in itself. Last time I went out I had to sit down most of the time and felt frusterated that my body couldn't keep up with my friends. I did however manage to sit and dance and after a few drinks I began to forget feeling cross with myself.

Do your friends know about your arthritis? if not tell some of your closer friends that way the next time you venture out for the evening they will understand they have to claim a table somewhere :)

I always had to put on a brave face but you know once you get your meds sorted you will look back on this time and think "wow! I did that! ive made it through having 2 children, having no meds for ages, having nasty flares" you should be giving youself a pat on the back because you have done brilliantly.
Meds take a while to get right but I promise there will be something out there to help and you will be amazed how much better you will feel on them. Of course you will still get pain from time to time but if you keep in the back of your mind how you are now and think..."it isn't as bad as it was back then"... you will be fine!

If you need any ideas how to manage babies and toddlers around having your arthritis just ask because my boys are 5 and 3 so might be able to give you come ideas :)

kirst xxxx
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Date: 24.03.2013
From: Shruti

Subject: Re: Does it get better?

Thank you so much!! All that really helps!
At the moment I guess I just need to know there is a light at the end of the tunnel
Kirst, most def know what you mean that nights out are rare, I think that's what made it harder, babysitters are
Either very expensive or hard to come by so when you get to go out its a shame not to enjoy it
Hubby has great intentions I think, but not great on the follow trough, so still end up doing most of cooking and house stuff...
Kirst, any tips on arthritis and kids would be great please!!
Thank you all so much xx
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Date: 25.03.2013
From: Tara

Subject: Re: Does it get better?

Hi shruti
I am 41 have ra and 6 kids my oldest is 23 and doesn't live at home she works about 5 hours away and youngest is 7 all ages in between
Some days are very hard but I take it literally one hour at a time but I do get things done be it very slowly I get up at 6 30 every week day morning I can then shuffle around and sort every one out on good days I cook and bake and freeze every thing for those bad days
I m on mtx 25mg a week folic acid 5mg daily naproxen ( spelling ?)and paracetamol when needed meds at the moment aren't keeping every thing at bay but I am hopeful that my meds will be adjusted the next time I see my consultant
Saying all that I am so much better than I was this time last year so you will get there too hun :-)
Take care and keep posting
Tara
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Date: 12.04.2013
From: shruti

Subject: Re: Does it get better?

so I had my appt yesterday, and the rhuematoligist said my CRP levels were v high at 65, is that bad??
anyway starting methotrexate next week at 10mg, am a little nervous about it, but know it should help a lot!
they also gave me a steroid booster that should help over the next few weeks
What was scary was the amount that the nurse etc kept saying that people don't get crippled so much anymore with RA, maybe naively, but I hadn't thought it could get that bad....
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Date: 12.04.2013
From: Colin W

Subject: Re: Does it get better?

hi shruti , there is two inflammation markers they use , CRP & ESR , normal CRP is under 6 , even like 20 you will feel it petty bad so 65 is very high

been on Methotrexate since 1998 , its a realy good drug for RA if you can stand it , folic acid sorts most the side effects , btw your nurse is right without the drugs you will end up with joint damage , hope it helps you , should only take few weeks to start working
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Date: 12.04.2013
From: kirst

Subject: Re: Does it get better?

pleased they are starting you on something. I started MTX tablets and worked up to 25mg but by the time I reached 15mg on the tablets I was really sickly so I was put onto the injection and I was able to give that to myself. It improved the sickness massively and I do think it helped. that was a few years ago now and Im on sulphfazaline (cant spell it correctly). There are loads you can take if one doesn't suit you so don't worry.
How old are your children? x
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Date: 14.04.2013
From: Shruti

Subject: Re: Does it get better?

Thank you all. Kirst, kids are two and the other is nine mths. In your experience did you feel wiped out after taking methotrexate? Just wondering if I should line someone up to help with the kids?
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Date: 14.04.2013
From: kazz

Subject: Re: Does it get better?

i do shruti i feel exhausted for two days after takin it and very moody so my partner says lol
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Date: 15.04.2013
From: shruti

Subject: Re: Does it get better?

oh gosh, sorry to keep asking, but is that exhausted but can still do stuff, or is that exhausted as in bed for 2 days?
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Date: 15.04.2013
From: kirst

Subject: Re: Does it get better?

I used to feel totally wiped out for about 3 days after taking MTX but that was once I reached my target dose. Before that when I was just beginning to start the meds I was much worse because I was dealing with getting used to meds and was in flare. I used to be in bed for days unable to even muster the energy to go down stairs, but you sound like you are managing well.

Are you getting up with the kids through the night or are they angels who sleep through? (mine were monkeys until over a year old lol)
If they arnt up then the only advice I can give is make sure you get a good solid 7-8 hours if you can. Try not to over sleep because you will get too used to it and it could make you more tired in the long run.
And if course try and eat healthily, cut down on tea/coffee ect as that can make fatigue worse.

x
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Date: 15.04.2013
From: kazz

Subject: Re: Does it get better?

can i ask what dose u on and how long u been on it hun ? im on 15mg my rhuemy put me straight on that dose and i take folic acid for 3 days after the mex 48 hours
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Date: 19.04.2013
From: shruti

Subject: Re: Does it get better?

They started me on 10mg and folic acid the next day. Just taken the first dose...eeek
Not sure have done it the right way as am at work now, fingers crossed it goes ok as have tons to do today. Hope you all keeping well
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Date: 19.04.2013
From: kazz

Subject: Re: Does it get better?

how did you get on with your first dose hun ? any side effects
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Date: 19.04.2013
From: shruti

Subject: Re: Does it get better?

well oly took it an hour or so ago, so far so good, thanks for asking

It makes such a difference having you guys to ask/talk to, thank you so so much
xx
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Date: 19.04.2013
From: Rachel

Subject: Re: Does it get better?

Hi Shruti, just a suggestion, try taking the methotrexate at night (preferably after a big dinner!) that way I find that I sleep through the worst of any nausea etc. I used to feel very tired in the first few weeks of taking meth but now I only get the occasional week where it wipes me out. I take 5mg of folic acid, 6 days a week (not on meth day) to counteract side effects. Good luck with it x
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Date: 19.04.2013
From: Patsy

Subject: Re: Does it get better?

Hi ladies hope ur all well or as well as can be. Knees in agony burning hot and sore. Daughters holy communion tomorrow and heat pads a no no with dress lol. Jus want get through it and no more. Fed up.
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Date: 19.04.2013
From: kazz

Subject: Re: Does it get better?

patsy have you tried deep freezegel? i refer that then the heat ones ?
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Date: 19.04.2013
From: rhona

Subject: Re: Does it get better?

Hi Patsy,

I prefer the cold one's as well, voltarol is quite good. Or you could try a ice pack on it, sometimes taking a packet of peas from the freezer and wrapping it up in something then put it on your knee can help a bit.

Enjoy the communion. x
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Date: 20.04.2013
From: Patsy

Subject: Re: Does it get better?

Cheers ladies, yea makes sense that cold ones work better really. Reason stayed away frm them is cuz any cold at all gives me pain but should be ok when the area is boiling. Dreadn this thing tomorow, jus want it over and done with. Miserable auld sod i am lol.
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