I've hadR/A for sometime. I'm on methatrexate injection 25mg weekly. Inflicimub ever 8 weeks. I feel so lousy. What would happened if I

[Trulyfedup]

Stopped meds. I'm fed up with vomiting sweaty ANF feeling unwell most of the time.

[earthwitch]

Call your rheumatology nurse or GP first before you stop anything. Ask them straight up which of the meds is most likely to be causing the unwellness (my bet is MTX). If they hedge around, say you urgently need to see the rheumatologist as you can't put up with it any more. You shouldn't have to be putting up with vomiting - that either shows you really can't tolerate one of the meds, or there is something else going on.

[Trulyfedup in reply to earthwitch]

Woken up after falling asleep dur to pain and sickness. Truly fed up. I think this is a very understated illness. I'm on tramadol and have a good GP. he very occasionally gives me a couple of morphine tablets that works for me! I am on so much meds that I think my body sometimes I has had enough. I wish I were brave enough to come off it all and just take a pain relief but I know I mustn't do that. My left foot is already leaning into the right so have to have a special shoe...oh where are the days when I could walk forever!!!!! Sorry my note is so long but I've only just joined you all. It feels good to talk to others in same position...oh...and just before I go the tiredness is ridiculous!!!

[Case]

Oh poor u.

About 2 years ago , I believed I was taking too many tablets which I thought were not working. Sulfasalazeine, hydrochloroquine and methretrexoate. (None of them spelt correctly !) as well as painkillers and anti inflammatories. So I gave up sulfasalazeine, and I was much much worse! I believed things could not get any worse and it did. What I'd say is contact your rheumatologist, say how sick you are, ask them if there are alternatives. Seek their advice before just stopping , I made a huge mistake. Take care.

[Trulyfedup in reply to Case]

Thank you so much for reply. They did take me off all meds. I was off a month and felt so ill and in pain...the cramps were horrendous. I started back on methatrexate last Monday have been sick on and odd the whole week. I'm frightened to stop all meds as its a progressive complaint and already most of my joints are affected. I just feel I sit all day and watch everyone else going about their day..it sounds very dramatic and I'm not that way..it's just lately I seem to have last interest in everything...perhaps I'm being silly and immature.

[Case in reply to Trulyfedup]

I totally understand u , I used to work now I can't . I am in the severe Ra category, it can be a truly isolating condition . Am awaiting tribunal for dla, peoples understanding of Ra is sadly lacking. I can remember my husband having flu last year, he felt terrible. I told him that is how I am day in day out, with no light at the end of the tunnel. He really got how it is for me. I hope u have someone understanding in your life. This site is very helpful, people who truly understand each other and always there. Take care.

[oldtimer]

MTX 25mg by injection is quite a high dose. I was sick on that dose too. Can your symptoms and inflammation be controlled by a lower dose? Or in combination with something else?

You need to discuss what meds to take that will control the inflammation (so as to minimise the joint and other tissue damage) while still having a life to lead.

I'm now on azothiaprine & steroids, having been on - gold, sulphasalazine, hydrochloroquine, methotrextae, leflunomide - (I'm not eligible for biologics). I'm fairly OK at present, not too many side effects and inflammation, so I won't rock the boat. But it's taken a long time to get this far! And lots of being firm with the rheumy team - which you need to do.

[Dogrose]

I was on just 5mg of MTX along with my 8 weekly Infliximab, I felt dreadful all the time and eventually developed a chest infection which was left too long partly because the symptoms were masked by the drugs and partly because I had to wait 9 days to see a GP. I came off the MTX and had antibiotics and though I'm in agony now and needing a lot of codeine just to move I actually don't feel ill, MTX is a horrible poison. I'm back at the hozzy this week for my next Infliximab so I hope that will help my joints calm down. No way am I going back on MTX! XXX

[Hidden]

I agree with Oldtimer. 25mg by injection seems a bit too much. Do you have a helpline number to ring for advice.

I hope you have Folic acid up to 6 days a week.

My pharmacist told me we need to drink lots of water to help flush our meds through our systems. I don't know if that's any help.

Do phone and get some help, and let us know how you get on, won't you.

[Trulyfedup in reply to Hidden]

Thank you for your reply. I have phoned the helpline but its an auto machine so haven't heard back..I don't want to come across as a moaner..Everytime I go to clinic everyone else seems so calm and in control...whilst I'm sitting there with sweat dripping off my face and in pain. I really thought there was something wrong with me and I was being a baby. I do have folic acid 6 days a week. How are you doing? Do you still work?

[Hidden in reply to Trulyfedup]

I gave up my teaching job about 12 years after diagnosis. The average is 10 years I think. I have had RA for 21 years, and it bumps along, upsetting me sometimes, just niggling at others. I take MTX and Sulfa and Hydroxy. I say I am OK, compared to many! But I am not who I was.

Hope you get sorted soon.

[Trulyfedup in reply to Hidden]

Hi Phoebe. I'm sorry to hear you too had to give up work. I used to work for animal welfare, it broke my heart on many occasions but I miss it terribly. I am about to start my English Lit degree..but am nervous as I have so many bad times with the R/A. It would do me good mentally as I'm very low at moment with it all...just found out I'm diabetic as well. When you said the average is 10 years what did you mean? I'm sitting with two hot water bottles on me today....one on thighs and the other on feet.....one of those days!

[Hidden in reply to Trulyfedup]

On average people give up work 10 years after diagnosis. I read this somewhere. But obviously it depends on the severity of the disease, and also the type of job.

It must be exciting starting a degree. Do please talk to your tutors and explain you have RA. They will have all sorts of support systems available. And will understand about occasional absences.

[Trulyfedup in reply to Hidden]

Thank you for your kind reply. I have spoken to the tutors and they are very happy to help....however, this complaint has recently made my confidence waver. I seemed to have turned into a liability.....but I know there are people far worse than I. When at the hospital it's seeing the kiddies so poorly that brings my problems to a minimum. It is really great having others to talk to about R/A, I think my family and friends must be fed up with me....what did you teach by the way?

[Hidden in reply to Trulyfedup]

Maths at A level mostly. And I was a tutor too.

[Trulyfedup in reply to Hidden]

BLIMEY !!!!!!!! Maths was never a good subject for me.

[Trulyfedup in reply to Trulyfedup]

Just saying hello. My GP whom I see every Saturday...has told me to come off MTX as the vomiting was quite bad last weel..he is going to contact my L

Hospital on Monday. I'm very please he is doing that foe me...I find it very difficult. Good news...I went for a very slow- almost death horse ride...oh how I wish I was young again...only y

Trouble was getter off. I didn't wat for the stool ..oh no stupid mart had to just jumped off herself ,,you could hear my Knes's from miles around!!!!!!! I do wish you moments of relief from the BloodyTing"

[Hidden]

This condition is such a horrible one & not understood by many people! We tend to look well but they don't know what's going on behind closed doors!!!!

I have a friend who has been diagnosed with Lymes disease which I know is not a nice condition - she says she's fed up with after 5 weeks - but at least she should improve fully whereas we have often lived with RA for many years even before we are finally diagnosed & will have to endure it for many more! I know treatments have improved but it does sometimes (most of the time!!) feel like we are not!

I'm so sore at the moment & am so much medication as well as needing strong pain relief - it's not fun!!!

[Hidden]

I have to say here to you Pauline that I believe Lyme disease is just as misunderstood as RA and late diagnosis is very common too. My cousin had very similar symptoms to mine for ages and finally it was identified as Lyme which she must have had for ages because both her kids had it too so it had crossed her placenta. I know it is treatable with antibiotics if caught early enough but it is equally elusive for some and there are people who have their RA caught early and who respond very well to treatments and get good control over their disease. My cousin can't work and often struggles with severe fatigue so I wouldn't say everyone improves - it's an equally horrible disease for some I'm reliably informed.

[Hidden]

Trulyfedup welcome to this site. I was taken off injectable MTX and Hydroxichloraquine for a month in March because of side effects and after three weeks the RA came back to reek havoc in my life and I restarted MTX after four weeks. 7 weeks ago I came off MTX again because I was getting peripheral neuropathy everywhere. I had already come down from 17.5mg to 12mg slowly and was tolerating this amount quite well or so I thought. Now seven weeks later I've been tried on a dopamine agonist for neurological symptoms, been rushed to hospital once for a suspect heart attack (reaction to dopamine/ Parkinson's drug) and am now taking an anti-depressant.

But the pain of previous flares has not yet returned although I have a lot of flu-like stuff going on, insomnia and fatigue are horrendous. I don't know if these are due to RA or still a hangover off MTX or something else entirely and no one can enlighten me on this. Now being considered for anti-tnf and other DMARDs but I had a severe reaction to Sulpha and Hydroxy did too little to be worth me taking on it's own they felt. None of this helps you I know but what I wanted to say was that I do totally understand how wretched these drugs can make you feel. For me RA messes with our heads as much as our bodies - just the uncertainty of the disease and the fact that we are depending on these drugs to keep the pain away as much as possible is very hard to bear. As others have said your dose of MTX is high when you are also on an anti-tnf so you should ask about coming down doses as I did. It worked for me but other stuff got in the way. So loads of sympathy - whatever you decide it's best to try and do it with the support of your doctors if possible. Tilda x

[Trulyfedup in reply to Hidden]

Thank you for your reply. You are very kind. I've just started being on

forum and people have been really pleasant. Do any of you get blisters

[Trulyfedup in reply to Hidden]

Thank you again for lovely reply. Everyone on this site has been really friendly. I've got a bad day to day with nausea...I'm sucking polo,s like they are going out of fashion. You have been through a rough time....when I say I'm glad, I'm bot glad you've had problems, it's just so comforting to know I, not the only one. I feel a terrible nuisance when I see The Proffessor at hospital..you do tend to end up thinking you are the only one who can't cope sometimes. I'm also on Amitriptyline at night to help with the pain and spas ams . I'm not a great pusher of things so this is where this site is helping me...I do however, have a wonderful GP, I see him every week. Once again a BIG thank you.x

[Hidden]

Yes I did when I was on MTX! One or two usually on my face or neck and up inside my nose most weeks. X