Just been diagnosed ...

Florence500

Hi all,

I am new to this site and just been diagnosed with Rheumatiod/Psoriatic Arthritis, a bit complicated but they explained that as my blood results for RA were negative it still does not rule it out and I don't have actual psoriasis I have the symptoms of PA.

Anyway they have prescribed me with Methrotrexate, which I have to start taking in 2 weeks time once my immune injections kick in.

I am a little belwildered by it all, I only started getting symptoms 6 months ago and can't believe how fast it has progressed and how crippling it is.

Does anyone have any advice for me, either on the medication or general things like food to avoid etc, I am googling like mad but it's all very confusing :???:

dreamdaisy

Hello Florence500, it's nice to meet you but I am sorry you have had to find us. First piece of advice? STOP googling. There is a helluva lot of info out there, I suspect that it is mostly inaccurate, or downright rubbish or just plain wrong. Talk to us - we know our stuff.

I too have PA (and rarely have the P part). I am a lot further down the arthritis road than you - you have had a rapid diagnosis and they are starting you on meth. Believe it or not this is all good. Meth can be a very effective treatment for an auto-immune arthritis like ours and I certainly hope it has a good effect for you. I have rarely been troubled by any side effects from it - don't believe all that you have read about it and certainly don't believe that the side effects are guaranteed: they are not. Please make sure you are meticulous in getting your blood tests done regularly when you first start it: it is a powerful drug and the monitoring is important.

You say you began about 6 months ago: which joints are affected? DD

Florence500

I started with my right wrist and fingers but it has spread to my toes, ankles, knees back and neck area, not all of the time I have good days and bad days however my right hand is permanently in pain and annoyingly I am right handed.

I am concerned about the side effects of the drug and have agreed with my Doctor to get weekly blood tests initially going onto 2 weekly.

However I must thank you for your post, it has already eased my worrying and so glad I found this site.

caterina57

Hi Florence
Welcome. I am sorry to hear of your diagnosis. I have Osteo problems and spondylitis so I dont have the meth or any of the other RA treatments.
I hope that you use the site, people here and friendly, knowledgable and funny. It is a fantastic resource and to be honest dont know how I coped before finding it.
I hope you join in on the posts and look forward to "seeing you around"

Cath

tjt6768

Hi Florence, I have a different 'strain' of this poo of a disease but just wanted to welcome you to the site...

Hope you are ok

Join in any of the conversations, as you probably gathered, this section is where the wise ones such as my dear friend DD the sage give out great advice, I am a bit dumb so the chit chat section is where I am mostly, lol
There you can have some none arthur related japery..

Be well

dreamdaisy

Please do the tests, they are important. Yes, when you first read about meth it is frightening - :shock: - but I can assure you that I have had very few problems with it, and I am not alone in that. I had tablet meth but developed a rash - it didn't hurt and didn't itch, but it was enough for them to take me off that. After a while they moved me onto injected meth (I do my own injections now) and all I have had a are two bouts of mild nausea. Be careful in the sun - your skin's sensitivity to sunlight will increase so come the summer make sure you use a good sunscreen and stay in the shade!

I am about to complete my 14th year of this dross and am on many more meds than you, so I won't say too much about that. Yours sounds as though it has begun in the 'classic' areas but it does seem to be on the march. I began with just one affected knee but now I have many more affected joints. Thankfully they don't all hurt all the time - only sixteen do that and I am used to it now so I actually don't notice it that much - you do adjust (probably because one has to!) The rest join in when I flare, then life does become more difficult.

Make sure you get plenty of rest. Arthritis of any form is tiring, but with an auto-immune version we are not really in control of it in any way. It can be very easy to over-do things, so I hope you are already trying to pace yourself and conserving your energy as much as you can. Oh, there is one thing you can google - The Spoon Theory. That gives a very good way of explaining to those around you how this is affecting you: family and friends can sometimes be - how shall I put it? - a little tactless in the things they say but this is a very graphic way of explaining the effects of it all.

Please feel free to ask me any questions you like - either on the thread or you can PM me. I wish you well. DD

julie47

Hi florence
just want to welcome you to the forum and hope you enjoy reading and joining in the discussions.
I have been on methotrexate tablets a good few years now with no problems.
Side effects of any meds are scarey so i don't read them.
I have also scared myself to death with the internet as have quite a few on here no doubt......so i don't look at that anymore.

Take care
juliepf x

nanarose

Hi Florence.

I haven't much to add to DD's comprehensive and knowlegeable post, but she is spot on when she says that 'googling' the internet can scare you half to death. I think every ailment known to man is attributed to meth on there! :shock:

I too have PsA, and am now on injected meth (25mg) as I did get queasy with the pills, but only when I got up to the highest dose, I was managing pretty well until then, with no other problems.
So long as you are getting the appropriate tests, etc any little blip will be noticed straight away before any damage is done.

I don't want to jinx myself, but after years of severe pain, I am doing really well on the meth, and have managed to decrease my painkillers and all the other drugs down to a bare minimum. Who knows how long it will last, but I just wanted you to know that it's not all doom and gloom with this horrible disease. I take any improvement gladly.

Some people manage to carry on a pretty normal life, unfortunately others don't, but I do hope that you are one of the former group. I think being positive about your condition helps too - I am usually, though not always, in the glass is half full scenario, as to think otherwise would really depress me too much.

I raged against this condition at the start, but that didn't help much, so now I have accepted it as part of my life, but I won't let it take over.
You are lucky, although it may not seem so, to have had your diagnosis early, before any long term damage has been done, so that is one big positive.

I hope you get all the help, advice and support you need from folks on here, they are really marvellous, especially when some are really fighting against the odds themselves.

Good luck x

spacey

hi Florence, I am fairly new to this too and am a bit overwhelmed by it. I too went a bit mad googling and scared myself silly so sent away for some leaflets which has helped as I can also show them to my family. I hope you find this site as ensightful as I do.

barbara12

HI Florence
Sorry I cant help I have OA, but I just want to say welcome to the fold, you will not regret joining , we all support one another, and we are here if you want to talk rant or have a laugh.
Good luck with everything
Barbara x

speedalong

Hi Florence, I have OA and the treatment and management is different to your type. Just wanted to welcome you to the forum. I hope your symptoms improve as the meds kick in. You will discover personal triggers as you go and what to avoid etc but now and then arther likes you to know he has the upper hand.

Speedy

BoleynBlue

Hi Florence and welcome, you will recieve some excellent advice here from people who actually live with the problems you have, I am new like you and they have given me lots of help.

Good luck x

frogmorton

Hi Florence

Very pleased to meet you, but sorry it's under such circumstances.

Thing with the inflamatory and sero-negative type arthritis is they can't half come on quick! I woke up stuck (when I look back theer were other clues, but it feels like that is what happened!!!!)

I am so glad you are getting some help with it and not still in limbo. ONce you ahve taken your meds and got used to them and they are starting to ease you will feel better. About them and your life.

I suggest you come on here and talk about it and listen to us, it helps you get your head around it all and for you to adjust to things the way they are now.

Things are different, but not necessarily terrible just different and it takes time to get yor head round it.

Love and hugs

toni xx

Florence500

Thank you all for your kind welcome, looked up the spoon theory, what a perfect way for explaining how hard this can be.

My BF is finding it hard to come to terms with and I feel so guilty for him as we are both keen motorcyclists and this has put a damper on our fun, however if I am not able to ride my own bike, which I honestly have not tried since feeling ill, I am hoping that I will still be able to get on the back of his and do the things we enjoy doing.

I have a question, do any of you find the pain or flare ups much worse a few days prior to your period? I have been keeping a diary and found that the majority of my most painful days land this way, could it be connected or just coincidence? (obviously directed at the ladies of the forum, sorry to embarrass any men that are reading)

dreamdaisy

I don't know if there is a proven link but from what I remember yes, things were always 'worse' in the days before. I could never decide if they were actually more painful or whether it was just my ability to deal with it that had diminished: looking back I suspect a bit of both. I think I remember reading somewhere that pain is felt more keenly by women in the days leading up to the onset - never go for a waxing at that time!

Don't give up on the biking yet: let's see what the meds do for you first, yes? We have a member on here (of the bloke variety) and his RA is wonderfully controlled by meth and meth alone: OK, his may not be qujite as virulent as yours but we are all different in how we react to these things - you just never know. Oh, about the BF - it is hard for family members and friends to understand and come to terms with our diagnoses - arthritis not only affects us, it has a go at our families too. They feel frustrated, anxious, exasperated and helpless. It's not easy for anyone. DD

woodbon

Hello and welcome to the group. I hope you find it as helpful and supportive as I do, although of course, I'm sorry its necessery for you to join.
I have OA, so I'm not the best person to offer you practical advice, but, just wanted to drop in to say 'welcome' and I hope things sort out quickley and you learn to manage well.
Love Suexxx

dreamdaisy

I forgot - have you also been prescribed folic acid? I take mine two dys after the injection. FA is supposed to help cell renewal etc, and minimise side effects. You should also ask about having a flu jab - meth does compromise the immune system so this has to be considered too. Sorry - it does all seem like bad news, I know, but these things should be said as your health is the issue here. DD

Florence500

Had my flu & pneumonia jabs yesterday so have 2 aching arms, picked up Meth and folic acid but not allowed to start it for 2 weeks until the injections take affect, so they are just sat in their little bottle staring at me at the moment.

18th March is day one for the Meth and then take Folic acid on the 21st, will keep you posted as to how I get on

rugbygirl

Hello Florence

Welcome to the site. I am sorry that you have had to find us but everyone is so friendly you will soon stop worrying so much and start laughing again. When that happens things wont seem so bad.

I only joined a week or so ago and I havent laughed so much in a long time. I have recently been diagnosed with OA of the spine so I cant help with the meds side of things but I can be a friendly face here.

Pop into Val's Cafe and grab a cuppa and a piece of cake (or whatever is on offer) someone is usually about on there.

tiggernut

Hi Florence, Sorry to hear you have Arthritis. I have RA I've had it for 27 years. I've been on Methotrexate now for about 4 years. I swore I'd never take it but at the end of the day I had no choice as I kept having flarte ups and the drug I was on needed to be increased and as I also have IBS it played havoc whith my bowels!! Anyway unfortunately for me I already had the deformaties and the artificial joints but I know many people who have had methotrexate from fist diagnosis and it does help stop all that.
I did have awful trouble with diarrhea and sickness but as I said I have IBS anyway. To combat the sickness I recommend you take it at night before bed so you can sleep it off. I now have injections and they are so much better no side effects at all. Unfortunately I did get a few chest infections so I only have 10mg methotrexate and 7mg of steriods which is a real bummer I am trying to get off the steriods as I had those for over 10 years when I was first diagnosed.
Anyway good luck with it.
Anita.
Anita.

dreamdaisy

Morning florence500, I hope all is well with you today. I am glad you have had the flu jab etc, you are clued up! I think it will seem like an eternity now until 18th March but the time will pass - it always does. I know that people do stress the nausea side effect of meth but honestly, it is not guaranteed, not by any means. I hope you fall into my camp on that front - I can only remember two very mild bouts of it and I think the second one was due to my starting BP meds (thanks to another med for arthritis my blood pressure rose) - they did not mix that well with the meth but it has all settled now. DD

ironic

Hi Florence,
I understand your apprehension at starting with the mtx I was the same and put it off for a while. I will be taking mine late tonight with a couple of glasses of water. It did take a good few weeks for it to start to work but everyone is different and some find a big difference within a very short time. In other words try and pace yourself as these things take time to get into your system. Anyway motorbike riding is nicer in the better weather, yes?
Welcome to the forum and let us know how you get on.
Lv, Ix

prefabkid47

Hi Florence
Welcome to the forum.
I was diagnosed with RA in the hands and ankle some years ago.
Am on methotrexate (followed by folic acid next day).To date it has given good control,with very little pain in my joints.Also take diclofenac as and when required.
As has been said regular blood tests are essential (fortunately all mine have come back normal).I'm sure things will go well for you.
Ron

Cez

Welcome, this site has been a life saver!

I have RA but like you had a rapid onset. It started in my left knee last July and by October had moved to my right knee, wrists, some fingers and my feet and i couldn't get through the day without painkillers.

I was referred to hosp in december and after a quick diagnosis i started Meth and another drug called plaquenil and i'm now like a new woman. *touch wood* I still have off days but i am so much better than before, i have hardly any swelling, occasional stiffness in my larger joints but not in my others. I've just been travelling for a month in Thailand, a holiday i thought for months i'd have to cancel and for 90% of the time, forgot i even had RA, something i never thought possible at my worst point last novemer. I've had no side effects from the medication and it's bringing my inflammatory markers down nicely.

I hope you have some success with your new regime!