Saw the doc and...................: Thanks for all your... - NRAS

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Saw the doc and...................

hev53 profile image
17 Replies

Thanks for all your help with my continuous moaning! He said he thinks it is gastritis brought on by the MXT but to persevere as the benefits far outweigh the initial side effects. I have so much going on bodywise I am getting bored with writing about it so won't put you guys through it either! Just geting tot he point where I realise work may no longer be an option and time to perhaps retire.

Thanks again and I hope you are all ok today. Happy Tuesday. xx

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hev53 profile image
hev53
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17 Replies
Rosie_rabbit profile image
Rosie_rabbit

Oh Hev, hang in there, it will get better. The side effects of the mtx should hopefully settles down, it may take a little time, and if it doesn't settle, then they will change it to something else that you should hopefully tolerate better.

It wasn't pleasant when I first took mtx, but it did settle down and I went from 10 to 15 and I'm now on 20mg. I still occasionally feel nauseas but it's ok and quite tolerable. I do have to take omeprasole with it otherwise I do get reflux and other stomach pain, but the omeprasole completely controls this. Has your gp given you anything to help? If it does continue to give you gastric problems they can consider switching to injections and that hopefully would really reduce your gastric symptoms.As the docs say, mtx is really the front line and best treatment for most for RA. It is worth persevering with if you can.

As for stopping work, I don't know what you do, or if you're full or part time, or how bad your RA is, but perhaps if you had some time off whilst you're waiting for the drugs to work you might feel better. I've had to take some time off right now, first time in 2 years, but it's what I need and I will hopefully be feeling a bit better in a few weeks and get back to it. You may find that once the side affects settle down and the drugs are actually doing their job you'll feel so much better. Retiring is a big step and it's still early days for you.

As for keeping writing about how you're feeling and 'putting us through it', that is what we are here for and this is where you'll get support and understanding from people who really understand what you're going through. So please keep writing, you may be bored, but we're not. Helping each other and sharing on here is what keeps us all sane, so keep on writing as long as you need to Hev. I really hope things settle soon for you, take care Rx

hev53 profile image
hev53 in reply toRosie_rabbit

Rosie you have helped no end with that response. Sometimes all we want is someone to listen. I know that none of my family really understands althought they try. I had friends around at the weekend before last and when I said I have RA he said 'I have a bit of that in my back'. Reallised then I was on my own!

I am 60 now so retiring isnt such a huge step and I would get a part time job to supplement my occupational pension. I just feel I am having too much time off, twice thismonth, once because of joint pain and now because of this! They wont put up with it for long. I work for the NHS and I am a nurse, so my job is quite stressful. I have always believed in the expert patient being just that. Those that suffer with conditions are far better suited to support and help others than others that can only try and empathise.

I am really glad you have levelled out on the MXT and that the side effects are well controlled. Long may it stay that way for you.

I was doing a bit better today until I ate............so that could be a problem! Pain now back and I have another 2 hours to wait until I can take more painkillers. I am on Co Codamol 30/500 but not that effective.

Take care Rosie and thank you so much. xx

Rosie_rabbit profile image
Rosie_rabbit in reply tohev53

So glad I could help Hev and sounds like you need to pget your pain meds reviewed!!

Gosh it makes me so cross when people say, oh I've got a bit of that in my back, or oh yes I get a bit of arthritis too. I think it's probably one thing we all agree with on this forum as one of our biggest bugbears grrrr.

Anyway, if you're able to retire and get a part time job, as a TA or whatever suit then really good for you. Really good luck with your interview and please let us know how you get on Hev. And remember, you're never alone. Rx

hev53 profile image
hev53 in reply toRosie_rabbit

I don't feel it on here, what a lovely site this is. I am always here also if you ever need to moan lol! Out of interest what pain meds do you take. I know I can't take NSAID's because of my stomach.

Yes people saying they have the same as us when actually they have a touch of OA (not that I am undermining the seriousness of that) but it's very different to this little cutie!

Have a good nights rest and hoepfully catch up soon. Thanks again xx

Rosie_rabbit profile image
Rosie_rabbit in reply tohev53

Hev, like you I really struggle with NSAIDs, eiher they don't help or they upset my tum. Naproxen was the best for me but it just gave me too many gastric problems.

My GP has given me some just plain codeine. I prefer having the codeine on its own as I've then more control over what I take. I really try to only take it when I need to as I know it can be addictive.

I do manage fairly well with the pain. I think one of the reasons for this is my pain moves around a bit and this makes it easier to cope with. I've also had pretty much back to back steroid injections since being diagnosed last year whilst I wait for the meds to work, which they aren't. The steroids do help loads in reducing the pain though. Good luck and I'm sure you'll get sorted. Rx

hev53 profile image
hev53 in reply toRosie_rabbit

I will discuss that with my GP. No harm in asking .Thank you x

Hev I hope you can hang in there with MTX for a while longer to see if the nasty side effects settle down. I had no problems with it beyond mood changes and tiredness the following day - until nausea started and other stuff and finally after six rather smug nausea free months. But after 18 months of it by pills and later by injection - I could bear it no more and stopped. I don't regret this as I feel I gave it my best shot - and I had stages of feeling really well on it and have never had the level of pain that I had before I started it.

MTX does work very well for many people and if not there are plenty of others to try. I'm currently just on Hydroxichloraquine which my rheumy and GPs felt sure wouldn't be enough for me - but so far it's working rather well. If your job is stressful and you are 60 then it might be a good idea to retire but perhaps you should just see if your RA becomes more stable and if you are able to tolerate MTX better once your body gets used to it? I'm 51 and looking for paid work to help pay for uni aged children. But the jobs I could do and would get are not ones I feel I could cope with for long and very low pay - so it's tough and I'm doing voluntary work instead - hoping it may lead to interesting paid work in the long run - and living as frugally as I can for the time being. Tx

hev53 profile image
hev53 in reply to

Hi T Thanks for your response. I am sorry the MXT wasn't for you but glad the Hydrox is holding you stable. I am on that also which I guess adds to the tummy problems.

It is so hard to find work that suits I know. Even though I am now in a desk job it is full time and in an office full of people coughing and sneezing and I get exhausted. I travel an hour and a half a day there and back and then get home to look after my 94 year old Mum who's needs are increasing both mentally and physically. My daughter comes in during the day to see she is ok.

I don't know what your skills are but I have just applied for a Teaching Assistant post around the corner to where I live. It's for students with Special Educational Needs. I have an interview next Monday and if I get it (the money is not good) I shall take my retirement and pay off any outstanding debts with my lump sum, still have a little nest egg left and manage on the rest.

However, it must be really hard if you are trying to get children through Uni. Maybe look into something that is term time so at least you get breaks in between? They are far and few between but if you go into your local councils website for vacancies they are to be found there. Forgive me if you already have done all this, just thought I would mention it.

I wish you well T and hope you get somewhere on the job front. Take care xx

Actually that's not a bad suggestion Hev. Only thing is that you need a qualification to be a classroom support here now and I don't have time to go to college. Would-be teachers use it as a way to get onto teacher training. But I'm a self employed artist and have worked with kids so I might be able to get some relief work on the bank as they call it. I will look into this tomorrow thanks!

What I'd really like ideally is a part-time job as a receptionist for a GP surgery or dentist as I'm good on computers and like communicating with people. I'm hoping some of the voluntary work I'm doing just now might help me get these kind of jobs when they come up. Receptionists at our surgery get £11 an hour which would suit me down to the ground! I'd go for the dentist and council jobs as reception too but they are less pay and all involve a 30 minute drive so I'd spend a few hour's wages on fuel for my car! X

PS - sorry I got carried away with your very kind suggestion and forgot to say the most important thing - that I really hope the MTX settles down and starts working and that you get a less stressful job with much less travel. It must be exhausting getting home and then having to look after your 94 year old mum. Tx

hev53 profile image
hev53 in reply to

Thank you. I didn't realise GP receptionists are on such a good wage. Wow! Let's hope that comes up for you. Perhaps join a recruitment company? Do a CV online with a free CV template which can be Googled easily and then get that off to a couple. You never know. Maybe target some pre schools, or hospices? They are into Art big time you could get some Freelance work. Hospitals also if you ask for the OT department they may point you in the right direction. Just a couple more thoughts.

I wish you luck, let me know if you get anything.

xx

Thanks Hev. I just read the local paper where jobs are advertised - ponder a few and then ponder off in the other direction! I work with my husband and we are still completing a big NHS commission. The only trouble with this kind of work is that it's very irregular and hard to budget around as a family with having to pay tax based on previous year's income it dwindles rather quickly to nothing! Thankfully the oldest son has a weekend job in a pub and works very hard and middle son is just looking so none of our boys are work-shy but still we have to help them out where possible with rents etc. I've decided that it's going to be easier and better if I can get paid work like my husband and just keep the creativity to our studio until we are ready to exhibit and try and sell it again. I lost my mojo when RA hit so want to be gentle with it now it's slowly coming back!x

hev53 profile image
hev53 in reply to

I really wish you luck. My mojo is on it's way elsewhere also at present. Hope you get yours back completely soon. If you find mine with it, send it here!

I have to say before I got this I didn't appreciate the whole of this disease. I do now!

x

I know - it knocks the confidence as well as our physical selves doesn't it? It's so hard to plan around and hard to explain the level of fatigue. I have two friends with CFS and having RA has made me a more sympathetic friend to them certainly! x

watson3 profile image
watson3

Methotrexate can be give by injection is that how you take yours.??

If not I'd ask for that.

Gastritis has many causes. After 6 weeks of treatment usually a GP will ask do a second opinion.

You also are entitled to that.

Less stress at work may also alleviate your stomach problems.

Please don't just put up with stomach acid causing problems. It can be treated and managed well with suitable medication.

Good luck on you decision.

oldtimer profile image
oldtimer

I am just so glad that I insisted on stopping methotrexate. I feel SO much better than I did while I was on it.

After going back on hydrochloroquine (which had suited me for years before and then getting an allergic reaction -Oh, xxxx!) and not being able to take any of the other previously tried drugs, again because of allergic reactions, I'm now on azothiaprine. (I had tried leflonomide,sulphasalazine & originally, gold injections also) . Told I'm not eligible for biologics, although my sister with a lower DAS score has been given them (in France).

No brain fog, no huge mouth ulcers, no loss of two days a week after the injection. Still nausea, but not vomiting, and loose bowels, but side effects bearable and inflammatory markers down - and for the first time for years, my anemia is improving. And apart from some swollen painful hands and wrists, I've been doing well on the joints too.

It really does seem to be a matter of trial and error until we find what is right for us as individuals.

norfolkjo profile image
norfolkjo

I moan lots so dont feel guilty . I have found when people list their complaints it helps me as I sometimes have same issue they mention do it is all constructive xx

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