Weaning off METHETREXATE

[Nashraf]

I have been on 17.5 gm Mehthetrexate for just over 3 years. A couple of months ago, due to remission, I was told I could wean myself off METHETREXATE. I reduced it to 15mg and felt fine so I further reduced it 12.5 five later. Within 4 days of doing this I began to fell the old symptoms of joint pains and stiffness . I would be grateful if anyone can tell me the correct way to wean off. What should be the time span between the dose reduction. The Rume Nurse helpline at my hospital has been removed due to cuts. I would appreciate any advice. I have returned to my earlier dosage of 15mg.

[flow4]

I have only just started on methotrexate, so I'm no expert on weaning off it, but I think that means you are in 'drug controlled remission' rather than true remission. In other words, your RA hasn't gone away; rather, your symptoms are controlled by the MTX, and come back if you stop taking it. I'd say you definitely need to talk to your consultant or rheumy nurse about this. It doesn't seem to me that you should be weaning yourself off MTX at all.

[helixhelix]

I'm afraid I can't be more hopeful either as I've never managed to get off the drugs. I've been on MTX, hydroxy and Sulpha for seven years now. And have had longish periods of remission. Each time, with my rheumy's agreement, I try to reduce the drugs. I usually start by dropping doses of either sulpha or hydroxy. Anyway I've never got far before the joint pain and inflammation returns and I have to go back up to where I was.

I think I've tried 5 different times now over last 4 years and my total achievement is that rather than 3mg I now take 2mg a day of Sulpha (plus the MTX and hydroxy). So my conclusion is that for some people going drug free is not an option. My rheumy has now told me I should wait at least a year before I try again.

So I think you need to talk to your rheumy.

[popsmith1874 in reply to helixhelix]

Hi there I couldn't really help as I'm not fully controlled , but I remember my Rheumy said at the start of my journey that I would be on this drug or some other drugs for the rest off my life at some sort of dosage and if it's going to help I'm quite happy with that take care

[Nashraf]

Thank you popsmith1874, helixhelix, and flow4. At this start of this journey I was on 9 different medication, some even twice or four times a day. Including steroids. I am now left with METHETREXATE and folic Acid (plus medications for other problems). I was advised by my Consultant to try and gradually wean myself of Methetrxate. Personally I don't care if I stay on it as it has allowed me to live a pain free and independent life. I had just hoped to reduce the dosage.

[nomoreheels in reply to Nashraf]

I've been on MTX (presently 17.5mg) coming up for 7 years (diagnosed 8) & considered reasonably controlled (to my mind only because I'm still on steroids) but I've never been told I could wean off it. I've had my dose increased or reduced as disease activity dictated & had 3 months off all my meds whilst waiting for a Rheumy to reinstate them. I had the biggest flare as you would expect! Long story but it was when I returned to the UK from living abroad & a cancelled appointment wasn't reappointed correctly hence the delay. I don't understand how your Rheumy can say you're in remission whilst still on meds anyway to be honest, drug induced remission I understand but what did he do to come to the conclusion you're in remission & can taper your MTX? Sorry if this seems dim of me Nashraf but I'm genuinely interested in knowing how or what did he do to decide you could. 

Beautiful pic. l inherited some red & pink & white striped amaryllis in my previous garden. They needed no looking after & learnt if I just let them die back & leave them in place they'd reward me with another flowering later in the year. 

[cathie in reply to nomoreheels]

I had exactly the same experience..

I did come off it because of liver problems and my OA really flared. So I would be very cautious.

[DawninCornwall]

I just stopped! was using Methojex and got a hernia following a keyhole op. Surgeon told me the MTX slows healing - henceforth hernia. Surgeon advised stopping it until hernia repair fully healed so I did. Stayed off for 18 months! hurrah! disease activity has made me restart it again this month. No side effects from simply stopping.

[Nashraf]

Dawnincornwall could you please tell me your dosage.

Kai thank you for reply relevant pages, which I will look up. I was told to wean off on the advice of the Doctor. But it was not clear about the space between the reduction. Since then I read that it should be at least 3 months. So I will try again in 3+ months. Yes that my Amaryllis grown from bulb and flowering for the second time.

[helixhelix]

I don't object to you adding this in at all, as diet can help hugely. But do be aware and recognise that it doesn't work for everyone. I tried for ages to follow strict diet regimes with no success, and still eat carefully (ie eat not too much and mainly plants as the saying goes). So for me my only option is the drugs, so please respect that too.

[Simba1992 in reply to helixhelix]

Did you try the AIP diet? It is only recently that effective diets for autoimmune conditions have been developed. It is an important fact, even though research is still lacking, that thousands of autoimmune patients have benefited and many have been able to leave hard meds. So why not give it a try if there is a chance of treating RA without the side effects ? True that it does not work for everyone but the % for possitive results is quite high.

[helixhelix in reply to Simba1992]

Depends how prepared you are to risk permanent damage.  I know that despite trying a range of diets each time I come off my meds I flare badly.   And that is over a 6 year period, so not just trying stuff for a week.  I've never found anything that shows more than a very small percentage (2 or 3%) of people having success - so interested if you have stuff that shows it's more. 

[Simba1992 in reply to helixhelix]

Diet is seldom the only support needed for the immunesystem, but fixing the gut goes a long way. I don't know if you are familiar with Dr. Mercolas work if not it is quite interesting reading. I think he was talking about 60%. Where did you get your information of 1-2%?

[helixhelix in reply to Simba1992]

Medical research papers in peer reviewed scientific journals

And yes I've looked at Mercola's information, plus the various FDA warnings he's had about making unsubstantiated claims on his products/advice.  Which doesn't mean that diet isn't useful, just that I don't trust someone who has made multi millions from selling products while also criticising big pharma for making money out of people's health. 

[Simba1992 in reply to helixhelix]

Mercola is by far not the only specialist in the field of functional holistic medicine. It is a constantly growing medical field where doctors are trying to use what new research are comming up with. In todays world, unforunately the clinicians and researchers are not on the same page, which ofcourse is also quite understandable. Following the treatment protocol with its diversity of meds and monitoring all the secondary problems keep the rheumies swamped with work. The fact however remains that from the patients point of view, the whole picture should be as clear as possible so that the decision conserning treatment can be made together with the doctor not just by the doctor.

[Simba1992 in reply to Simba1992]

Sorry got your% wrong! The effect of the hard meds usually do not kick in before after 3 months, sometimes longer, sometimes never. Usually with a strict AIP diet you see changes in symptoms and wellbeing after a month. Also inflammation markers decrease in blood tests. Whatever form of treatment you choose you are always taking a risk but the main thing, you would think is that you have as much information about your condition and treatment options and their mechanisms of action as possible. The good thing is also that you can do your autoimmune diet along side the meds you are taking. Itis not unusual that people are able to leave mtx in stages after starting AIP. Paleo mom has a lot of info that helps you understand what the effect of the diet is and why it so often makes a difference.

[nomoreheels in reply to Simba1992]

As much as your comment about DMARDs is misrepresentative so is your claim about AIP diet. It depends on how leaky your gut is, how inflamed your body is, exactly what types of antibodies your body is producing & what cells in your body they are attacking. Just like your genetics will predispose you to developing autoimmunity if you have a leaky gut, they also dictate how easy it is for your body to stop producing those antibodies & heal your gut. Interestingly, this doesn’t necessarily mean that those people with more severe autoimmune diseases will take longer to see improvement. It’s actually quite hard to predict who will see dramatic, rapid improvement & who will have a long drawn-out recovery.

[Nashraf]

Nomireheels. I am not sure how the doctor decided I was in remission, but I think it was decided by the monthly blood test, and X-rays and physical examination.

[nomoreheels]

The link is community only but maybe simpler communicating is the answer? I know I find your posts difficult to read, I don't know if others agree? So possibly less is more, I don't know but simple text is easier to take in & stay in with me. Like helix I appreciate diet can help, what I eat suits me & appears with my meds to keep me well or so I'm told!

[Scottishlad]

Remission can be either because your disease is less active or that the drugs are working well. Apart from the odd minor flares I am said to be in remission, however I am on fortnightly Cimzia injections 10mg methotrexate and Hydroxychloroquine. On the advice of my rheumatologist I tried 7.5mg methotrexate but started to flare so after speaking to her again I returned to 10mg. 

These drugs are can have side effects so it makes sense to try to find the minimum dose that works for you. My rheumatologist says that the odd flare is better than being over medicated. 

[Nashraf]

Thank you scottishlad. Greatly appreciate your comments as they are very relevant to me. I have returned to my previous dose of 15 mg.

[Sheila_G]

I have been in remission for about 3 years now and it has never been suggested that I start to come off mxt.  I have always believed that my remission is mxt induced and would not even consider coming off it unless I had to for other medical complications.  I once had to stop it for 8 weeks after a breathing problem during which time I was bedridden with 23 joints affected.  Fortunately, it wasn't anything to do with mxt so I could go back on it but with all I went through and masses of steroids which caused their own problems, I am staying on mxt for as long as possible.  We have to respect and take the advice of our rheumatologist but never do anything without their advice.  Best wishes.

[healthygenes]

I have been on methatrexate for almost 20 yrs and have been taken of it several times for different reasons, I have never yet been weaned off it, it's not a neuro drug where you do have to be weaned off, also one doctor I seen recentley told me you come off it while you are on antbiotics so there wouldn't  be time to be weaned of.

[Nashraf]

It has been at the suggestion of my Consultant that I will be weaned off. At the on set of my illness, which was sudden and dramatic, I was put on about 9 different medications. Gradually as my condition improved I was taken off some of the drugs one by one.  METHETREXATE is the last one with the Folic Acid. I successfully managed to reduce from 17.5 to 15mg. But my jump from 15mg to 12.5mg was too soon and now my GP has suggested I wait for 2 months. I think the plan is to see whether I can come off it successfully or be kept on the lowest dose possible.

[nomoreheels in reply to Nashraf]

Trying to get to the lowest dose whilst keeping you controlled would make sense Nashraf. As you've been able to come off your initial meds it would indicate that you reacted positively to them, got the disease under control & stopping each over time has been successful. Unless you have a palindromic form of arthritis (& I wouldn't think you do) I'm not sure you'll react positively to fully tapering off MTX, it does sound as though 15mg or maybe 12.5mg could be your holding dose, your drug induced remission dose. It goes without saying I'd be happy for you if you can manage to come off it though!

[Nashraf]

nomoreheels thank you for your comments, sincerely appreciated. It seems you have deep knowledge on this subject. Even though I would love to come off the Methetrxate but if it not to be then I don't mind as I have no wish to return to the quality of life I had prior to going on it.  Can I also just add that your names brings a smile to my face as it is one of the things I had to give up recently as I developed Osteoarthritis of the knees and had episodes of just falling over for no reason. I have never been able to wear high heels but now I wear only flats or trainers.

[nomoreheels in reply to Nashraf]

It's just great when you find something that works. I know I was so thankful when I reacted positively to the first meds I had. It all changed about a year later but the MTX is what's kept me going. My user name is a bit of a misnomer nowadays, I've to wear wear wedges now. Because of how rubbish my feet are my Podiatrist says I've not to wear flats so I suppose it's a bit misleading!