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[Laceygreen]

I have stopped taking my methatraxate and hydrocolqine, sorry don't know how to spell it , .but do anybody think my symptons will return ?

[hatshepsut]

Have you stopped because your doc advised it? Would be very wary of doing this yourself, if that's the case I would think that there's a good chance that they will! M

[helixhelix]

I tried reducing my meds with consultant's agreement as I was doing very well. But only took a few weeks before symptoms started returning. You might be luckier, but always best to discuss first with the doctors as you might need them again later.

[earthwitch]

If you were officially "in remission" then I suppose its possible that it may be a long time before symptoms come back, but equally, they could return quite quickly.

Just out of interest, why did you stop? and did you discuss it with your doctor first? If it was because you just didn't like taking pills, or didn't like the side effects of them, then the doctor needs to know that as it is possible they could offer you something else that wouldn't make you feel so bad. If you stopped because you thought you were doing so well you didn't need meds, then it would be really good to discuss that with your rheumatologist because they are the ones who understand this disease, and should be able to tell you what the consequences of stopping would be - including whether it might end up harder to control the disease if it does flare in future (bearing in mind you would have to go through the whole three month minimum of building up DMARD meds before they started working again). Its about making a really good judgement based on all the facts, about whether its best for your particular disease to try to just medicate flares, or take "preventative" medicines (which DMARDs are, as they "modify" the disease so it doesn't express itself and cause problems).

[wishbone]

I hope you have better luck than I did when I stopped methotrexate, which was the only DMARD I was taking at the time. BIG mistake for me...within a matter of weeks I was in terrible debilitating pain, and couldn't get back to rheumy for a steroid injection quick enough. I was feeling ok before stopping methotrexate so that little episode certainly made me appreciate what a good job it was doing. I discussed it with my rheumatologist before stopping.

[nomoreheels]

Hiya Laceygreen. We've been in contact before & from what you've related & questioned before regarding these meds my fear is that you've done this without supervision of your Rheumy. If this is the case, please reconsider or take advice from your GP or Rheumy team. My experience of being without meds wasn't a pleasant one when I was without them for 3 months. It was not of my choosing but as only a Rheumy was able to reinstate my meds in the interim I was only able to take basic pain killers & my joints (& me) went haywire. I was swollen like I'd never experienced before & even had to have my wedding ring cut off as my finger was turning blue. The pain was ...., well save to say I didn't appreciate just how well I was controlled with them & my RF factor & bloods when I eventually saw a Rheumy were sky high. Once reinstated within weeks I was back in control & happy for it.

If it's a case of you feel methotrexate & hydroxychloroquine isn't working for you or making you feel worse, in other words you don't feel any benefit at all, then you really do need to see your GP to ask for his help, don't struggle on & just stopping your meds will make things worse.

I really hope I've read too much into your question & your Rheumy has put you on alternative meds but if you're not taking anything you risk setting yourself back.

Have you made a decision on your knee replacements? I remember you were considering cancelling the op. I hope you didn't as if that's osteo related then they will only worsen & if an op has been advised then there must be real need for it as there are many desperately needing these ops & are still waiting. Grab the opportunity with both hands, you'll be so much better once recovery is complete & in the grand scheme of things that's so little time.

Ultimately it's your decision but if you're seeking advice please consider any offered you & hopefully you'll reconsider as the consequences of just stopping MTX & HCQ aren't brill.

[Laceygreen in reply to nomoreheels]

Thank you nomoreheels I was thinking of stopping as I'm feeling so much better,and don't like taking meds, they made me feel tierd all the time and also makes me think do I really have Ra ,thank you for your concern means a lot, will let you know how I get on ,

[Hidden in reply to Laceygreen]

That's an excellent reason for staying on them surely....THEY ARE WORKING :). I know myself I would be prepared to put up with tiredness if it got rid of chronic pain and stiffness. Good luck.

[nomoreheels in reply to Laceygreen]

Thinking you no longer have RD means they're working don't you think?!! You just need to get your head round the need to take pills to feel that way I think don't you!? That's a lot of thinks so don't think about it any more & just concentrate on the need to take them eh?!! Look forward to hearing how you get on.

[Laceygreen in reply to nomoreheels]

Thank you so much for the advice,I'm so confused at the moment,and the people. On this site are the only ones I can talk to, and know about this illness!i I left a comment to another lovely member and was explaining that I can't afford to get refused pip as I have been waiting so long ,left my job, and need the help to survive , but from other peoples comments about pip if they see you can do things at that moment they don't award pip,so I thought if they saw me without the meds they would how much I'm struggling, sorry so long winded

[nomoreheels in reply to Laceygreen]

They are being very strict on reaching the necessary score at present it would seem most are falling at the first interview though DWP would like us to think that's not strictly true. Hopefully, if you continue doing well on your meds & can address somehow the tiredness issue you have, maybe you could return to work if only on a part time basis. I think there are benefits in place for low income situations & maybe based on that you would qualify if you ensured you were under the limit. There will be options I'm sure & maybe it would be worth asking CAB or your local Welfare Rights Officer just what options there are should you decide you could return to work. I have applied for a PIP form & still waiting. I first requested it back in April & tomorrow they will have had yet another 2 weeks of not sending it & will be my third attempt at keeping my calm "enquiring" why I still haven't received it. Wish me luck!!

Long winded, long winded? You're an amateur baby, never seen some of mine lol!!

Sorry, Silly Sunday, feel better today after a rubbish week & a migraine yesterday just to top the week off!!

[earthwitch in reply to Laceygreen]

Just out of interest, I actually get far better income by managing to work part time than I would if I was just reliant on disability benefits - working tax credit with the disability element actually means I can survive on my income, and I can still get some of the other low income support as well (housing and council tax benefits, health benefits, etc).

Definitely don't try to stay off your meds because you think it will help to get PIP - that may backfire completely. It would be very unlikely to work as they will want to know why you aren't being treated for a treatable disease, and may still assume that you wouldn't be disabled if you accepted treatment.

[Beaches2 in reply to earthwitch]

That's a good point earthwitch.

I haven't seen much on here re disability working tax credit but I did look into it online when I thought I may need to reduce my hours again. To be honest I was quite surprised that it actually seems quite generous ( based on other benefits!)

If I remember correctly, we would qualify with our diagnosis, without assessments/ tests etc, you only need to work 16 hours ( instead of the usual 30) and the amount you get is then based on what you earn in your 16 hours or whatever hours you manage.

I'm thinking it's probably based on household income so may not be useful for those with income from other sources.

I know some people would struggle with the 16 hours and it's not easy to get a job in the first place with this disease but it's well worth knowing about this benefit. X

[Hidden]

All that needs to be Sid has been said and m very curious as to why you have stopped taking your medication . What was this decision based on and what do you think yourelf will now happen? What response do you really want from us fellow sufferers?

Sal

[Laceygreen in reply to Hidden]

Just advice

[MarshaM]

I understand why you want to stop and see what's going on in your body w/out the drugs. I did the same after the steroids and I felt good and wondered if I was getting better. Stopped mtx and hydro for two weeks and the hands and wrists started to feel like the inflammation was returning so I spoke to my rheumy and told her what I tried. My blood tests showed inflammation markers were down to normal, however, She said I had a very agressive form of RA and started me on humira. Am still doing well and back to playing tennis so I guess the meds are working. I did not have any bad reactions for stopping and am not experiencing any side effects for taking them. Sure hope I do have a remission someday so I can quit the drugs. Good luck.

[gaspajack]

I stopped mine as i got needle phobia but, was still telling everyone i had taken them(i'm not alone) i am now 8 weeks off methotrexate and waiting for the new epi pen at the end of this month. Take it from me the pain in my joints is horendous you don't know what you miss until it is gone i have gone from being fairly mobile to walking back and forward to the back door in agony if you have stopped because of youre doctor fair enough sometimes this happens but if its off youre own back get back on them asap believe me the drugs really do work but good luck whatever you do.

[Hidden]

Hi Lacey, I can understand also why you want to stop, I don't feel it's a ticking off you need but some understanding but if you could get back to us to just why you've stopped as in your Consultant's advice or your own decision to stop. These drugs are so powerful and can cause so many side effects and problems in themselves it's no wonder people become anxious, stressed or develop drug phobias especially as we are dealing with a chronic health condition as well and I personally feel that there's no much support out there from the medical profession for this!! I think you should take the advice of the others though and think long and hard about stopping them

If it is your decision as I've now not been with any proper meds apart from painkillers and steroid jabs as I keep getting reactions for a while and I'm in a lot of pain, I realise now that I have to take these drugs and be strong. You have a lot of support on here and I'm sure the NRAS helpline would be a great benefit to you also if indeed you are feeling a bit lost. Best wishes and hope you're ok x

[Laceygreen in reply to Hidden]

I am so confused,I was in really bad pain a few months ago a d now I'm not I have waited over 6months for my pip acessment,and they have finally told me it will be in the next 4weeks,how can I possible go and have examination when I'm ok at the moment they will just refuse,I've had to give up the job I loved working with children,to be told there is nothing wrong with me..so I thought if I come off the meds they would see the real me....what do I do,can't afford to carry on like this ......thank you for listening

[Hidden in reply to Laceygreen]

Oh Lacey... That's terrible , who on earth told you there's nothing wrong with you? Just remember you are doing ok at the moment because your drugs are working but are you still struggling with walking, cooking meals, bathing or showering, do you need to use any aids...you say you had to give up work also? Tell the assessor all this...how different are you now to when you completed your PIP form? I'm not saying you are but please don't stop taking your meds so that you can show them just how bad you really are

[Hidden]

Just another thing before I shut up!!! I was having a massive flare for Jan/feb could hardly walk etc but do you know what the day of my assessment in March I felt ok..ish, I just told them how I feel for the majority of the time not just those period when I felt ok..ish. Good luck and any help you need with it, please don't hesitate to ask x

[Laceygreen in reply to Hidden]

Thank you sooooo much x

[Metal-legs]

You sound in a desperate place Lacey, I really feel for you, there's some good advice on here. Your health is what is important, your symptoms may not return until after your PIP assessment so you have stopped your treatment unnecessarily.

You don't want to go back to the misery of pain you were in, a few months ago. have you read the free PIP guide from NRAS to help you with the assessment?

[Beaches2]

Hi Lacey

Just read this post and feel so sorry you find yourself in this situation. How frustrating for you.

We have no idea at the start of all this how things will develop do we? It was really just reading on here that helped convince me things would improve, I thought I would be like that forever too, maybe even worse,and in my head I made plans for how I would cope.

Don't suppose there's any chance you could get your old job back is there now you are feeling better? Especially since you enjoyed it so much.

If not, I would be inclined to get back on the drugs that have worked so well for you so far and see what happens.

Have a search on here for posts on pip, most people seem to do better if they get help with it all, from citizens advice I think.

Good luck and try not to worry over it x

[Beverley-NRAS]

Hi laceygreen,

sorry to hear that you feel that you must come off your meds so as not to jeopardise your PIP claim. I think the things that people have said here already are really helpful. As has been said already, RA is a lifelong condition for which there is currently no cure and it is possible that your symptoms will come back. If you feel the need to talk please feel free to call the helpline on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

Regards

Beverley (NRAS Helpline)

[JaneAllen]

I went off MTX because I was feeling great and needed a break. My Rheummy tapered me off the drug by decreasing the amount over a year. Had 6 months free then a relapse. Many of these drugs cannot be stopped abruptly so something to work out with your doctor.