What would happen if i stop my meds?

Im so fed up with feeling ill 5 days out of 7. Been on Methotrexate for 7 years.

[Deeb1764]

Talk to your RA team and explain how you are feeling and that you do not see a benefit if always ill etc. I was moved onto others Benepali and in the end now on Baritcitnib which I find the best so far pop a pill no after effects as its JAk inhib. you might need to try 2 more types of meds first.I was like you 5 days out 7 unable to keep to my work schedule no matter how many times we changed it and the drug should allow you to lead a 'normal' life in theory.

If you dont take the meds the effect is probably more pain and more unseen joint damage.

[Hidden in reply to Deeb1764]

Thank you so much for all the replies! I tried contacting the clinic today, but they are only dealing with emergencies. I shall follow the advice, carry on, and contact the team!

[Deeb1764 in reply to Hidden]

If you can phone your consultants secretary switchboard will put you thro and ask for an email address. My team are fab via email and always get back to me

[Hidden in reply to Deeb1764]

Thank you. When I ring the number, it says emergency only, and they dont give an email address on the paperwork.

[Deeb1764 in reply to Hidden]

Call the hospital ask for the PALS service they should be able to get this info for you. I am glad my team very open about using email has madelifemuch easier! x

[Tkat10 in reply to Hidden]

Point out that your lack of quality of life is becoming an emergency! They should be starting to pick up the non flarers and keep putting the pressure on. I will take it you are becoming depressed and note all the other issues you are experiencing. Do not feel you should take no for an answer.

[Brushwork in reply to Tkat10]

Actually, tell them that Methotrexate is causing depression, your mental health is suffering - I think they will react pretty quickly to that.

[helixhelix]

Agree with Deeb, talk to your team. Be very clear that you want a change.

Don’t just stop as if your RA goes out of control it can be much harder to get it back under control.

[sylvi]

Speak to the rheumy who is looking after you darling. xxxx

[nomoreheels]

Hiya Lesell, welcome. I'm so pleased you posted. Please, please, please don't stop them. You'll flare & also regret it twofold if you do as it can be much harder to bring you back under control. Believe me, been there, though not of my own volition. There was an almighty mess up (to put it politely!) when I returned to the UK then my appointment with a Rheumy to reinstate my specialist meds was cancelled & I’d a further wait to see another.

Be strong, state your case to your Rheumy as you have here. Have you tried to explain just how many days you feel ill? Anyway, you have options. As you've been on MTX 7 years you probably know the following but they are worth mentioning just in case. If you are on MTX tablets you can change to injections, many side effects lessen or go with the change in route. I started on tablets but changed to injections 11 years ago at various doses. Or, your dose can be reduced, see how you manage side effect wise & if fine then that's resolved. Or, lower dose & add double therapy with another DMARD. Or, your folic acid could be increased in you take 5mg less than 6 days. If these have been tried there are at least 3 more DMARDs you can be prescribed. Trialling any one, or double therapy, is always an option for you.

If MTX is your first DMARD you're unlikely to be offered biologic options. Departments differ but NICE Guidelines recommend that at least two are tried, one being MTX. Then you need to be off meds to reach the DAS score, it's not as straightforward as just going on to them I'm afraid as they are very expensive & funding has to be applied for.

Talk with your Rheumy. Don't underplay how you are…we do have a tendency to say we to cope well when in front of them, that is until it's a hey lads hey situation. If you want any further help just ask, we've lots of experience to share between us.

[wishbone]

Been there, done that, wore the t-shirt....twice!

First time was many yeas ago when I stopped 20mg of methotrexate under the supervision of my rheumatologist. Can't recall how long I lasted, 4 or 5 weeks perhaps, but I ended up with a really bad flare was put back on methotrexate and normal service resumed after a couple of weeks.

The second time was following a spell in hospital with serious hip infection which scared me quite a bit. Because of the risk of more infections I decided to go cold turkey with all RA meds but this time I made the big mistake of not informing rheumy or anyone else come to that. To cut a long story short, just how I managed to last for as long as I did in so much pain I'll never know. The aftermath of that 10 weeks or so was my wife pushing me into rheumy in a wheelchair because I couldn't manage the walk from the car, which wasn't that far. Worse was to come when a routine pre-methotrexate chest x-ray showed abnormalities on my lungs, which unfortunately turned out to be pulmonary fibrosis. According to my respiratory consultant it was caused by RA inflammation damaging my lungs and I have no reason to doubt that as I developed a prolonged nasty cough during my period of abstinence from RA meds.

Bit of an extreme case perhaps, but let it be a warning to anyone thinking of doing likewise, not that anyone here would be daft enough to do what I did by not letting rheumy know! Hope not anyway...

[Neonkittie17 in reply to wishbone]

Glad you’re steady now and won’t be doing any of that again!

[wishbone in reply to Neonkittie17]

Twice bitten!......

[Neonkittie17 in reply to wishbone]

You’re much more sensible now I know! 😁

[wishbone in reply to Neonkittie17]

I'd like to think so.

[Neonkittie17 in reply to wishbone]

Ah we’ve all done daft/strange things re our RA thinking we know best! 😝

[wishbone in reply to Neonkittie17]

Not long joined this group back then and was pretty naive regarding my health conditions...typical man made "head in sand syndrome". Like to think I'm a little wiser now thanks to knowledge gained from the good people here.

[Boxerlady]

As the others have said, ask your team for a review. I asked to drop my Methotrexate (by injection) down from 25mg to 20mg as the side effects were starting to last for several days and my joints were doing well after Sulphasalazine had been added to my existing DMARDS (Hydroxychloroquine as well as Methotrexate.) They agreed and I'm back to the usual (for me) one day of foggyness which I can cope with. I wouldn't have done it without their blessing but equally, if I had been refused, I would have asked for a full review with the consultant rather than simply speaking to the nurse on the phone.

[Ruth12345]

Please take note of what people have said. They know what they are talking about I have so wanted to do the same but not due to reading what others say who have more experience and know more than me.

I wish you all the very best 💐

[Applepy]

HiI got fed up with methotrexate, and ended up nearly dying of pneumonia as my immune system was bad. For the last 4 years I haven't been on any medication, just followed a healthy gut microbiome diet and my inflammation levels have been normal for 3 and a half years! No pain, no medication, absolutely back to a normal person. The best thing I ever did.

[Hidden]

Hello Lesell ,I came off Methoject 6 months ago now , I did ask my RA nurse first , and I had a face to face appointment with them , and I’ve also had a phone conversation with my consultant and blood tests . So far I’ve been ok , although my consultant did warn me that it might be short lived .

You do need to talk to your team . Good luck with whatever you decide .

[Hidden in reply to Hidden]

Thank you!

[Sheila_G]

I am sorry you are in such pain but please don't stop your meds, it will only make things worse. I know it is very difficult but you must keep trying to get hold of rheumy and stress how difficult life is for you and can you change to another drug or combination. All the best.

[Libluce8]

Husband same as you plus had other side effects, memory loss and swollen boobs - he lost his job because he felt so ill and was in a lot of pain - however every time he came off methotrexate he started to itch and had open sores - going back on methotrexate stopped this - eventually a change of RA specialist and some research by us he came off methotrexate. as new RA specialist said his RA wasn’t active and he started taking Gabapentin plus Fexofenidine which stopped the itching (been clear now nearly 12 months) the pain in his shoulder and in one joint in one hand which was reason his GP referred him to RA specialist in first place has been put down to osteoarthritis and he’s receiving treatment for it - the damage that methotrexate has done to him over the years and financial mess it’s left us in because he’s not worked can never be forgiven - whilst methotrexate etc may work for some and be needed the specialists do need to consider quality of life over the drug may stop RA causing deformity in later life - as my husband said - way I feel I may not make it to later life

[Hidden in reply to Libluce8]

I am so sorry you have both been through that. I hope life improves for you.

[Brushwork]

Be firm when you eventually get to speak to someone! Simply tell them that you can’t tolerate Methotrexate and need an alternative. You have to be your own advocate, be assertive to get the best outcome for you. It’s sad that your RA dept., is not readily available to you.

The one I attend, has a specialist nurse number and email, they always get back to you within 48 hrs, often the same day. They always offer a resolution be it an appointment or a consultant directed change to prescription. I am lucky, but really all RA departments should operate in this way.

[Hidden in reply to Brushwork]

Hi! Yes, when I read some of the replies, I realise the difference in the systems. I will be firm!!

[stbernhard]

I had to stop my meds twice this year (still off now) because of other treatment and I have gone from remission to swollen painful joints, reduced stamina and energy, back to fatigue and reduced flexibility. I would highly recommend not to stop without a consultation with Rheumatology.

[Wadebridge]

I feel your situation. I was the same. Definitely tell your Rheumy team. They tapered mine right down but tbh it wasn’t working for me anymore. Best of luck. I really do understand, I came to loathe it so much, even though I knew it was protecting my joints. 🤷‍♀️ Devil of a drug hey!

[Tatiana13]

I was prescribed meta 3 years ago it didnt suit me and my compaints fell on deaf ears till my blood test alerted the nurse and I stopped taking it , I am now on benepali which hasnt upset me so far ,it is trial and error ,keep positive x

[Hidden]

Hi… I know I’m late to the party, but also get your Rheumatologist/ GP to check for drug toxicity. When I was on naproxen and diclofenac (and Mx and Sulfasalazine) I felt grim all the time 🤢. I now take cyclizine an hour before Mx which helps considerably (suffered for years 🤢).

[Hidden in reply to Hidden]

Thank you!

[Wannabeabago]

Ask to swap meds mate, you don’t need to feel like that everyday.