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Date: 14.07.2009
From: Karen

Subject: Just wish it would go away :(

Hiya,

Things not been great recently, had to go back to hospital last week as been in quite abit of pain and the fatigue is terrible. Was quite suprised to find myself in for half a day getting more steroid injections, x rays and being prescribed a different med.

Im currently on 5 sulfasalazine a day, now changing to methatrexate (can`t remember how many - i think 20mg a week?) Over the past year I have tried to stay optimistic regarding my RA but im quite upset about it now, just wish it would go away :(

Ive been told I can no longer drink, im only 28 so that`s tough for me to accept, anyone on Mtx still drink? also what about the other side effects , hair loss etc?

K x
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Date: 14.07.2009
From: val h

Subject: Re: Just wish it would go away :(

hi can not help u my self but think jill will b able to she knows lots about ra. i have oa and in early stages. but can under stand how hard it must b for u at the moment have two lads 23 and 25 and if they were told they could no longer have a drink would b very hard for them. hope some one comes on soon to help stay strong things will get better :-)
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Date: 14.07.2009
From: Amelia

Subject: Re: Just wish it would go away :(

Hiya Karen,

Totally know how your feeling i very often feel beat by it all and resentful. I was diagnosed when i was 23 and i am 25 now i started off on sulfaslazine and it never worked for me i was in agony all the time and was sooo depressed by it all i have 2 young boys aswell and couldn't cope with it all. Then i started methatrexate last year and it has helped me loads i get flare up's now and again but nothing compared to how i was before it has deffo made my life easier i am on 17.5mg and i am hoping to get it increased this week to 20mg, it's a hard thing to deal with and i still feel there is loads for me to learn about RA too.

I still drink aswell prob don't help it but, only do it now again and it's summat i enjoy!

The only side effects i get really are tiredness and my memory is a bit rubbish now but thats prob down to the tiredness. I feel sick on the day i take my meds but that soon passes so nothing really major it's a small price to pay to feel normal lol

I hope you start feeling a bit better soon keep in touch with us all this is a great forum for support and info let us know how you get on with the meds

Big hugs
Amelia x
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Date: 14.07.2009
From: Jenny

Subject: Re: Just wish it would go away :(

Hello, I am new to this ite and have just posted a new topic. but now I feel so bad for moaning about my arthritis at 50 years old. It must be so much worse when you are young life must be difficult. I hope you can get all the help you need.
All the best Jenny x
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Date: 14.07.2009
From: Lynne

Subject: Re: Just wish it would go away :(

Please feel free to moan away jenny that's what were here for good as well as bad days. It is very difficult coming to terms with this illness and shouting and screaming and stMping one's feet is part of it. We call is Sloasf you may have seen a few post with that on. often this is the only place we can have a moan cos friends and family don't always understand. Or they get fed up of us moaning. I can Assure you we will not get board here there are some loveley people who are always on hand to offer support . Take care
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Date: 14.07.2009
From: Lynne

Subject: Re: Just wish it would go away :(

Hi amelia and Karen. I have been on mx not now though. You can have a drink but in moderation. My rheumy told me I could have 4 units a week but only 2 in one session. That's. Because it could react with the meds and affect your liver. If you drink too much.
With regards to side effects we are all different I was fine on it for over 5yrs then I started to get an alergy to it .. Rash , mouth ulcers.. I will say this I was far better off on the meds even with the side effects. Rather than not taking them. It slowed my illness down consequently I have less damage to my joints.
Take care lots of hugs
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Date: 14.07.2009
From: Karen

Subject: Re: Just wish it would go away :(

Thanks everyone,

I was quite frightened at the hospital this time, didn't like what I was being told regarding mtx.I drink rarely as I work 50 hours a week( very physical) but when I do go out I have more than a few units! I now need to accept that my social life won't be the same :(

I wouldn`t even consider not taking any meds but don`t you just wish there was something to help the pain withought the cr*ppy side effects :(

Really worried about the hair loss, noone experienced this?

Thanks alot x x
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Date: 14.07.2009
From: Lynne

Subject: Re: Just wish it would go away :(

Yes sort of Karen I was on mtx for five years before I started to get side effects . Slight thining of hair, mouth ulcers. I stopped the meds on Docs orders and every thing went back to normal even hair. Then he started me on enbrel injections they are an anti TNF and thet have very little side effects take care xx
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Date: 14.07.2009
From: Karen

Subject: Re: Just wish it would go away :(

Do you think If i ask for something other than mtx they will agree? I was crying when she was telling me I was to go on them but didn't offer me an alternative. x
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Date: 14.07.2009
From: Amelia

Subject: Re: Just wish it would go away :(

They don't usually and it all comes down to cost, they won't start me on injections as it cost the NHS 10k my consultant said he wants to monitor me on the meds and if i have to go on 20mg of mtx then he will start the injections if i carry on with flare ups etc..

Shouldn't really be a price on our health but thats what it comes down to unfortunatly. Having RA is a major lifestyle change for me with regards to what foods i eat and smoking and the alchol was very hard and still is!

Not experienced hair loss, it's worth a try on asking for alternatives on the meds as you are on or will be taking a high dose.

Amelia x
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Date: 14.07.2009
From: Lynne

Subject: Re: Just wish it would go away :(

Amelia is right it does seem to come down to cost. Before I got enbrel .my rheumy nurse to me that to qualify for enbrel I had to have tried at least three different DMARDS and that they had all not worked (which over the years I had) only then could I have enbrel, because as Amelia says it cost over 10,000 a year.

There are a few alternative, but they all have different side effects, it may be worth giving your Rheumy nurse a call and ask her advise, they are generally more accessable than the Docs

Take care
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Date: 14.07.2009
From: Karen

Subject: Re: Just wish it would go away :(

Okay, well its 2 weeks until I start on them so hopefully that will give me a few weeks to come to terms with the changes ( I sound like an alcoholic..im not!!)

Thnaks for all your replies xxxx
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Date: 14.07.2009
From: Lynne

Subject: Re: Just wish it would go away :(

Hi Karen Good luck... also please bear in mind it's not an immediate fix it will take two to three months for the meds to kick in .. so hang on in there girl .. take care
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Date: 16.07.2009
From: Jill

Subject: Re: Just wish it would go away :(

Hi9 Karen please dont worry (((((hugs 4 ya ))))) MTX side affects r small compared to what this disease does to us lovely gorjus peeeps.... like Lynne said, felt sick, mouth ulcers and I got absesses,,,,small price to pay....karen I cld NOT imagine being without my MTX and Enbrel....godseen.PLEASEEEEEEEEEEEEEEEEEEEE dont be scared.... talk to us lot on here, some of us been on them DMARDS for years.....my hair fell out B$ the DMARDS... hasnt yet...still got my thick curly hair.... we r here for U or anyone.... yes the meds are Toxic....but I wld be hospitalised without them, like I was b4 I started them......let us know how u get on pls....as it helps others too....love Jill x
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Date: 18.07.2009
From: Karen

Subject: Re: Just wish it would go away :(

Yeah I was in hospital too last year before I started my Sulf, have tried to stay positive over the year but really don't want to go on mtx, recently married and the whole can't have kids etc is another factor, but yeah you are right It could be worse and i need to stay positive and just accept i need to take them.

Thanks for your replies guys xx
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Date: 19.07.2009
From: Lynne

Subject: Re: Just wish it would go away :(

Hi Karen have you told your rheumy you may want kids. He may be able to put you on something else that is not so toxic. There's nearly always an alternative. Good luck
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