newly diagnosed

fionac

Hello everybody, I am newly diagnosed with RA and 3 weeks in to treatment with MTX.
I cannot tell you how good it has been to read some of the posts on this forum - I am so pleased I have found you all!!
Life has been a challenge, to say the least, over the last few months and it was looking like it was only getting worse.
My side effects from the MTX are dizzyness, nausea, rash, severe loss of appetite and a general feeling of being drugged up to the eye-balls!
At first I was on15mg MTX, this has now been reduced to 10mg (taken today) to see if I can tolerate this dose.
I sounds like other people have these symptoms too. I wondered how long before these should go and what are the chances of the symptoms retuning when I try to increase?


[/url]

tillytop

Hi Fiona – and welcome from a fellow RA traveller!
So sorry about your diagnosis and that you are having such a horrible time of it. But glad you have found us because you will get lots of help and support here from people who really understand what you are going through. Wish this forum had been around when I was first diagnosed 14 years ago.
As you will see from the forum posts, lots of us have taken/are taking MTX and everyone’s experiences seem to be different. Some folks take it with no probs, others have said that they have got used to it in time. Me, I couldn’t tolerate it at all – I took it for about a year and a half and the nausea and general feeling of being very unwell meant that, eventually I stopped and went onto other things. I didn’t have the rash, dizziness and loss of appetite though so can’t answer your questions about those. It sounds as if the docs are taking sensible precautions by lowering the dose for a while though and maybe if you can’t cope with the higher dose, you could have a lower dose plus something else? Just a thought. Also, are you taking any other meds for the RA at the moment which could be causing any of these symptoms?
I know others will be along soon Fiona to share their experiences.
Love Tilly x

dreamdaisy

Hello fionac, welcome to a ghastly club. The people are lovely but the reason they joined is horrid! I was on tablet meth for a while, developed a rash and was taken straight off it. I am now on the injected variety, generally I have no side effects from it (only one recent bout of nausea) and it does sweet fanny-adams for my PA (psoriatic arthritis). I've just missed two doses for a holiday and I feel so much better without it. Methotrexate is a strange beast. Don't frighten yourself by reading up about things on tinterweb, ask us questions. We've been there, done that and have numerous T-shirts! Dreamdaisy.

fionac

As for other meds. Not taken NSAI's yet as i am majorly allergic to Aspirin and Dr's think if i do chance it will have to be in hosp under controlled conditions! Have had 2 lots systemic steroid injections in bottom - lovely!!
I also have Hashimotos (thyroid disease) for the last 14 years but have been stable for much of that time. I'm not sure now if that is playing up. Have had more blood tests this week to check thyroid levels.
I think the trick is to try and keep smiling but it is hard sometimes!

Fiona

marion1952

Hi Fiona

Sorry that youhave had the shock of been diagnosed with RA.

I have been on methotrexate for over 2 years now and I found the weekly injections much better than the tablets - much less nausea. I hope you feel better on the 10mg - perhaps your doctor will increase it gradually to 12.5 mgs and then 15 mgs over the next few months....

I found it took me about 12 months to get used to the fact that I had RA and I was amazed to find out how many other people had either RA or PA it too..!

I wish I had known about this site when I was first diagnosed 2 years ago .. the people here are an absolute 'mine of information'!

Hope you keep posting and let us know how you get on.

Best wishes

Marion

catlady

Hi everyone. Diagnosed three wks ago, had a cortisone injection when I saw the consultant, which has helped enormously. Have a clinic appointment with the nurse next week and expect to go onto MTX then. Does anybody know if you can request injections as I dread the thought of being nauseous etc. Being stiff and in pain is bad enough without the rest! .

dreamdaisy

Nausea is not a guaranteed side effect catlady. I started on meth pills, developed a rash and was taken off them. I have been on injected meth for yonks, recently had one bout of nausea and that was it. No side effects at all - mind you, it doesn't do anything for my my PA either. Meth is a contrary mistress: she works brilliantly for some, does a bit for others and b***er all for the rest. Dreamdaisy

frogmorton

Hi Fiona

and Catlady

hello from me too - I do hope you find this site helpful - I'm sure you will.

I will leave my mtx colleagues to fill you in on that one

Love

Toni xx

ironic

Hi Fiona and catlady,
Welcome to the forum. I'm sure you are still trying to come to terms with everything. I know that once you find the medication that suits you, you will start to feel so much better in yourselves.Honest So I am glad you are asking questions and finding your way round the forum.
Sorry you are both going through this though.

Nice to meet you both,
Just be kind to yourselves.

Lv, Ix

marion1952

Hi Fiona

I started off on methotrexate tablets, then I asked if I could have injections (given at the hospital, in the bottom) and then I went onto self injection (much smaller needle, in the stomach).

I do find the self-injection is very good - I don't even think about it now. I was told that injections were more effective than tablets as, apparently, more of the drug gets into your system. as it 'bypasses the gut.'

Hope things work out Ok for you Fiona. It does take time to adjust to having RA and some people were really horrible and unsympathetic to me at the beginning...

Marion

dreamdaisy

Nobody here I hope marion! That is one of the problems we face - pain does not show. Sometimes I think it would be good if, for example, on the inside of our forearms we could have an implant (a little like those thermometers you see outside churches that show monies raised for the roof etc) that shows pain levels. Then people might begin to understand. One of the greatest failings of the human race is you have no idea what something is like until it happens to you. I have a friend that I try not to see too often because she is FULL of good advice for me about what I should be doing, how I should be coping, the strategies I can use: she even told me I was using my crutches wrongly! She is revoltingly healthy and doesn't have a clue. Every time she goes ski-ing I must admit I do hope for a tumble of some sort, causing multiple fractures, a need for strong painkillers and months of physio. Mean? Unkind? Oh yes! DD

frogmorton

[ Every time she goes ski-ing I must admit I do hope for a tumble of some sort, causing multiple fractures, a need for strong painkillers and months of physio. Mean? Unkind? Oh yes! DD[/quote]

Oh DD :roll:

I only wish for ONE day for people like that, but they must not know it's only one day - on that day (and night) they must beleive it is FOREVER

Love

Toni xx

dreamdaisy

You are too nice: one day is not enough, a year might just about do it! DD

frogmorton

dreamdaisy wrote:

You are too nice: one day is not enough, a year might just about do it! DD

woodbon

Hi Fiona, Welcome to the site, I'm glad you've found us.

Your diagnosis is so recent and you must be a bit shocked, which would be perfectly natrural. At least you know what you'r up against, that may help you come to terms with things. Given time, you will be able to come to terms with everything and learn how to make the best of life.

You know, its not automatic that you get worse, especially today, with all the modern durgs about and new things comming along all the time.

I hope you find this site of some help to you. Love Sue

catlady

dreamdaisy wrote:

Nausea is not a guaranteed side effect catlady. I started on meth pills, developed a rash and was taken off them. I have been on injected meth for yonks, recently had one bout of nausea and that was it. No side effects at all - mind you, it doesn't do anything for my my PA either. Meth is a contrary mistress: she works brilliantly for some, does a bit for others and b***er all for the rest. Dreamdaisy

Thanks DD. I will be asking for injections at my clinic apt

fionac

Injections sound like they may be the way forward for me too!


Does anybody think that injections help with the feeling of being spaced out?

Thanks for all the replies your support is great

Fiona x

psyart

Hi and welcome to the site! As the other guys have said - the meds work differently for everyone!! I was diagnosed with PA nearly 4 years ago and after 2 years went on meth tablets feb 09. I had nausa for about 5 days out of 7, so went on self injections in April09. I have now had to come off as after 16 months I cant tolerate the side effects anymore!! BUT the stuff worked on my PA!!!! They tried reducing the amount, so was on 10mls in April, but the pain has come back!!! stopped taking it about 3 wks ago and feel better in myself, not so ill, no nausa etc, BUT the pain is back with vengance!!! I am on something else, which slowly seems to be working, but do so wish I could have tolerated methx!!!!

everyone is different, and there are lots of meds out there to try, but it takes time!!!! we will help you through all the feelings that you will go through and dont feel that you cant write about anything - we have all been there and some still are there!!! hope that makes sense!!!!!!

louise xxx

PS good to see you back DD!!!

tillytop

Hi Louise

Sorry to hear that you have had to give up the meth. Like you I struggled with it valiantly (tabs and injections) but had to give up after a year and a half.

What are you taking now? Really hope whatever it is starts to work for you soon!

Love Tilly x