Newly diagnosed with RA

rachsmary

Hi there

I have just recently been diagnosed with RA and am on steroids and have just started Methotrexate. Not sure what to expect as think I am still in shock. I am only 36 and always associated RA with the older generation as my mother and her sisters all have it (I presume it is hereditary).

I am supposed to stay on the steroids until the MTX kicks in which will be about 4 weeks or so. Not sure what happens then or what to expect. Does the MTX work or when I come off the steroids will I experience the pain again as feel ok now?? Haven't really got a clue about the RA or the medication. Any info greatly received.

I work full-time and have a 18 month old son so trying to keep my chin up!

Thanks

Rachel

barbara12

Hi Rachel and welcome
Sorry you have had to find us, but you have come to the best place, the people on here are so supportive.
I cant help with your question has I have OA, but I am sure someone will be along very soon with some answers.
Love
Barbara x

dreamdaisy

Hello and welcome. I don't have RA, mine is PA (like the R but with the added bonus of psoriasis) but the treatments are the same. Methotrexate is a contrary substance, it works very well for some, not so well for others and not at all for the rest. It can kick in almost immediately for some, after a few weeks for others (usually between four and twelve) or not at all for the rest. Side effects can include nausea and skin rashes but are not guaranteed for everyone. I do not have any side effects from meth, apart from one recent bout of nausea, but neither has it had any efffect on my arthritis - I think I've been prescribed it because that is what my consultant does! I am also on an anti-TNF treatment, oral steroids, an anti-inflammatory, a stomach protector and weekly anti-osteoporosis pills. Pain killers are also taken when necessary.

Arthrtitis does run in families, but I am the first in mine to have PA, or any sort of A for that matter. Luckily I do not have children so that ticking time bomb has not been passed on - lack of maternal instinct is the only thing 'Mother Nature' got right with me. What treatments are your relations taking? Are you the first to climb onto the meds merry-go-round? It is very much a case of 'suck it and see' with arthritis meds: they are not cures, they only alleviate symptoms and try to slow the progress of the disease. I sincerely hope that the meth does work well for you. Good luck with it all. Dreamdaisy

marion1952

Hi Rachel

So sorry to hear that you have had this shock. I have had RA for 2 years now and those early weeks/months after diagnosis are the hardest to deal with. It sounds like you have started proper treatment early, which is very good.

I am on methotrexate too and it has worked well for me. Ihave had very few side effects, apart from some thinning of my hair in the early months, but that was only temporary.

I am sure your rheumatologist has told you, but it is important to have regular blood tests whilst on methotrexate - at the beginning I had forthightly tests but now have them monthly.

There may be times when you feel very tired, so you must make sure you get plenty of rest - easy for me to say, I know - but you have a lot on your plate with a full time job, a young child and now RA.

Please keep posting and let us know how things go for you.

Marion

livinglegend

rachsmary wrote:

I presume it is hereditary.

I am supposed to stay on the steroids until the MTX kicks in which will be about 4 weeks or so. Not sure what happens then or what to expect. Does the MTX work or when I come off the steroids will I experience the pain again as feel ok now?? Haven't really got a clue about the RA or the medication. Rachel

RA tends to be hereditary and that is one of the questions that Rheumys often ask as part of diagnosis.

I have had RA for about 9 years and I am on steroids daily and MTX once a week. So, you could possibly continue on both, it depends on what the doc says. They may cut down on the steroids and/or MTX until you are on a maintenance dosage which is just above when it starts to really hurt. Regular blood tests are a necessity on MTX to check that nothing else is going wrong which could be masked by the meds.

Everyone is different and as such different meds are given. The main thing is, to take them as prescribed and not stop because you feel better. MTX doesn't work for everyone and you may have to go onto other meds. Only time will tell on that.

Joseph 8)

frogmorton

Hi Rachel

A quick and warm hello from me

Sorry about your diagnosis.

I hope the meds kick in quickly for you as you have a little one to lok after as well as work. You do have a lot on dont yo.

As far as the effectiveness of your meds is concerned it caries - that's all i can say....I hope it is quick for you.

Look forward to seeing you around the forums

Love

Toni xx

woodbon

Hi, Just a quick HELLO and welcome to the site, I have OA, not RA so can't help with medication! But in the end we all have pain unites us, whatever one of his ghastly forms Arthritis takes, we'll beat him in the end!

Seriously I hope that you find this site a friencly, helpful place. You should pick up lots of tips and informaion by reading and posting on here.
Love Sue

rachsmary

barbara12 wrote:

Hi Rachel and welcome
Sorry you have had to find us, but you have come to the best place, the people on here are so supportive.
I cant help with your question has I have OA, but I am sure someone will be along very soon with some answers.
Love
Barbara x

Thanks Barbara, glad I found this forum to get things off my chest as don't have anybody here that understands. I live away from home so only have my mum at the other end of the phone.

Cheers

rachsmary

dreamdaisy wrote:

Hello and welcome. I don't have RA, mine is PA (like the R but with the added bonus of psoriasis) but the treatments are the same. Methotrexate is a contrary substance, it works very well for some, not so well for others and not at all for the rest. It can kick in almost immediately for some, after a few weeks for others (usually between four and twelve) or not at all for the rest. Side effects can include nausea and skin rashes but are not guaranteed for everyone. I do not have any side effects from meth, apart from one recent bout of nausea, but neither has it had any efffect on my arthritis - I think I've been prescribed it because that is what my consultant does! I am also on an anti-TNF treatment, oral steroids, an anti-inflammatory, a stomach protector and weekly anti-osteoporosis pills. Pain killers are also taken when necessary.

Arthrtitis does run in families, but I am the first in mine to have PA, or any sort of A for that matter. Luckily I do not have children so that ticking time bomb has not been passed on - lack of maternal instinct is the only thing 'Mother Nature' got right with me. What treatments are your relations taking? Are you the first to climb onto the meds merry-go-round? It is very much a case of 'suck it and see' with arthritis meds: they are not cures, they only alleviate symptoms and try to slow the progress of the disease. I sincerely hope that the meth does work well for you. Good luck with it all. Dreamdaisy

Thanks for all the info. I had heard that they may try me on different things. Poor you having to take all the meds. Thanks for the support!

rachsmary

marion1952 wrote:

Hi Rachel

So sorry to hear that you have had this shock. I have had RA for 2 years now and those early weeks/months after diagnosis are the hardest to deal with. It sounds like you have started proper treatment early, which is very good.

I am on methotrexate too and it has worked well for me. Ihave had very few side effects, apart from some thinning of my hair in the early months, but that was only temporary.

I am sure your rheumatologist has told you, but it is important to have regular blood tests whilst on methotrexate - at the beginning I had forthightly tests but now have them monthly.

There may be times when you feel very tired, so you must make sure you get plenty of rest - easy for me to say, I know - but you have a lot on your plate with a full time job, a young child and now RA.

Please keep posting and let us know how things go for you.

Marion

Hi Marion

Yes am finding it hard to deal with at the mo, really can't believe it cos I have always been so fit and so into my exercise and healthy eating. I am trying to keep my chin up and your e-mail has helped. Its hard to stay positive but I suppose I should enjoy feeling well whilst on the steroids and MTX. I do hope the MTX works but I have heard it could be quite bad for the liver. Also I presume you can't drink alcohol whilst on it? I don't think I have been properly informed about anything by the Rheumy but hopefully when I go back I can ask him a lot of questions as I think I was too in shock the last time.

Thanks for your support and I will let you know how I am doing! Does it get easier to live with or do you eventually come to terms with it?

Thanks

Rachel

rachsmary

livinglegend wrote:

rachsmary wrote:

I presume it is hereditary.

I am supposed to stay on the steroids until the MTX kicks in which will be about 4 weeks or so. Not sure what happens then or what to expect. Does the MTX work or when I come off the steroids will I experience the pain again as feel ok now?? Haven't really got a clue about the RA or the medication. Rachel

RA tends to be hereditary and that is one of the questions that Rheumys often ask as part of diagnosis.

I have had RA for about 9 years and I am on steroids daily and MTX once a week. So, you could possibly continue on both, it depends on what the doc says. They may cut down on the steroids and/or MTX until you are on a maintenance dosage which is just above when it starts to really hurt. Regular blood tests are a necessity on MTX to check that nothing else is going wrong which could be masked by the meds.

Everyone is different and as such different meds are given. The main thing is, to take them as prescribed and not stop because you feel better. MTX doesn't work for everyone and you may have to go onto other meds. Only time will tell on that.

Joseph 8)

Thanks Joseph I feel I am not very well informed at the mo so every bit of info helps. I am still just coming to terms with the diagnosis and can't really believe I have RA at 36. Hopefully I can be a bit more positive with the feedback from this forum.

Thanks again.

Rachel

rachsmary

frogmorton wrote:

Hi Rachel

A quick and warm hello from me

Sorry about your diagnosis.

I hope the meds kick in quickly for you as you have a little one to lok after as well as work. You do have a lot on dont yo.

As far as the effectiveness of your meds is concerned it caries - that's all i can say....I hope it is quick for you.

Look forward to seeing you around the forums

Love

Toni xx

Thanks Toni I will keep you informed. It is great I found this forum as I have noone to talk to about this as I live away from home.

Thanks again.

Rachel

rachsmary

woodbon wrote:

Hi, Just a quick HELLO and welcome to the site, I have OA, not RA so can't help with medication! But in the end we all have pain unites us, whatever one of his ghastly forms Arthritis takes, we'll beat him in the end!

Seriously I hope that you find this site a friencly, helpful place. You should pick up lots of tips and informaion by reading and posting on here.
Love Sue

Thanks Sue, I am so glad I found this site.

Rachel

fionac

Hi Rachel

It looks like we are at a similar point with RA.
I am 46 with 3 children a dog, full time job and also live 250 miles away from family so I know what you mean when you say life is difficilut at the mo.

I started off on steroid injections and 15mg MTX 3 weeks ago. I have to say that I have felt pretty c**p!
However, as I have had many of the side effects the consultant has reduced my dose to 10mg to see how i go on this dose.
Today I don't feel quite as spaced out but pain is on the up.
Last week my side effects were at their worst on thurs (I take MTX on tues)
What dose are you on?
Have you been offered injection as a choice?

Also worried as we are off to Tunisia for 2 weeks on the 1/8 and I don't want to feel rubbish on holiday.

Trying to stay positive

Fiona

marion1952

Hi again Rachel

You ask whether it gets better or you get used to it .. well, actually, it's both!

As you know, methotrexate can take some weeks to start working, but the steroids should 'cushion' you until then. You can drink 'in moderation' with methotrexate and your consultant shoudl give you guidance about this. You will have regular blood tests for liver enzymes, so if the methotrexate starts affecting your liver this will show up early in the blood tests. This has only happened to me once and was just a minor 'blip' and the liver results went back to normal after 2 weeks and I continued on the methotrexate..


You sound like you were very fit and healthy before this, so that should stand you in good stead as it's important to be as active as possible (although that can be hard at times).

I find sticking to a simple diet helps too - eg red meat definitely makes my RA worse, as do tomatoes, oranges, cakes, chocolate, coffee and, unfortuanately, CHEESE!!

You will find some really useful leaflets on the Arthritis Research UK website..

Do keep posting..

Marion x

rachsmary

fionac wrote:

Hi Rachel

It looks like we are at a similar point with RA.
I am 46 with 3 children a dog, full time job and also live 250 miles away from family so I know what you mean when you say life is difficilut at the mo.

I started off on steroid injections and 15mg MTX 3 weeks ago. I have to say that I have felt pretty c**p!
However, as I have had many of the side effects the consultant has reduced my dose to 10mg to see how i go on this dose.
Today I don't feel quite as spaced out but pain is on the up.
Last week my side effects were at their worst on thurs (I take MTX on tues)
What dose are you on?
Have you been offered injection as a choice?

Also worried as we are off to Tunisia for 2 weeks on the 1/8 and I don't want to feel rubbish on holiday.

Trying to stay positive

Fiona

Hi Fiona

Its nice to hear that I am not alone. Its tough at the mo. I have only just been diagnosed a couple of weeks ago have been on steroids for the past 3 weeks. I only took my first hit of MTX on Sunday evening (2 tablets not sure what mg it is. I will have a look). I have to do this for two weeks and then start taking 3 every week. I think the steroids are masking the pain because I feel ok at the moment, just a few little aches. Before I started taking the steroids, I couldn't even get out of bed or turn on the shower and had great difficulty walking. I haven't really had any side effects but just feel really tired and drained. I haven't been offered the injection but I have to go back to the Rheumy in 3 weeks so I will find out more then as I haven't a clue about all this. The only person I can ask is my mother and to be honest her RA is that bad she has been hospitalised a few times.

We are off to Egypt in September too so I think I will be off the steroids then and wonder how I am going to be on just the MTX. Maybe you should ask your doc/Rheumy for a steroid prescription for your holiday just in case. When my mother came over to me on holiday she went on the steroids for a week and felt brilliant and had a great holiday.

Try to stay positive and look forward to your holiday. Ask your Rheumy what you can bring as a back up so you can make the most of it cos really you deserve the break with three kids and this RA.

Keep in touch and good luck.

Rach

rachsmary

marion1952 wrote:

Hi again Rachel

You ask whether it gets better or you get used to it .. well, actually, it's both!

As you know, methotrexate can take some weeks to start working, but the steroids should 'cushion' you until then. You can drink 'in moderation' with methotrexate and your consultant shoudl give you guidance about this. You will have regular blood tests for liver enzymes, so if the methotrexate starts affecting your liver this will show up early in the blood tests. This has only happened to me once and was just a minor 'blip' and the liver results went back to normal after 2 weeks and I continued on the methotrexate..


You sound like you were very fit and healthy before this, so that should stand you in good stead as it's important to be as active as possible (although that can be hard at times).

I find sticking to a simple diet helps too - eg red meat definitely makes my RA worse, as do tomatoes, oranges, cakes, chocolate, coffee and, unfortuanately, CHEESE!!

You will find some really useful leaflets on the Arthritis Research UK website..

Do keep posting..

Marion x

Thanks Marion, its really great to speak to someone who knows what they are talking about. You are also helping me to feel a bit more positive. I know it will take time to get used to all this and the meds but its great I have this forum for support. I will keep you updated and thanks for your positive responses! I will also start to keep a food diary to see what seems to affect my RA. I eat pretty healthily most of the time. I will check out the website too.

Thanks again and keep in touch.

Rachel