Hi all
Has anyone considered coming off all meds and control naturally
Coming off meds : Hi all Has anyone considered coming... - NRAS
Coming off meds
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essexgirl
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To be honest, no I haven't. On MTX from diagnosis nearly four years ago it has controlled the disease very well. No disabling damage to my joints my life is 95% normal. Yes, I do get a few side effects but they're manageable. I never want to go back to how it was at the beginning and won't risk it
Can I ask Gnarli, has your does been reduced during this time at all? I’m on 20mg, and blood tests say well controlled, but fatigue a problem, so wondering about reducing dose
As with so many of us I started at 15mg tablets, changed to injections and titrated up to 25mg. Unfortunately, at that dose the side effects became intolerable and dropped back to 17.5mg. The symptoms crept back so up again to 20mg where I am today. I hope that helps
Thank you. I know everyone’s experience is different but it’s good to know what’s worked for others. I’m currently on 20mg injections, having an ultrasound of a troublesome ankle next month and depending on how that looks (ie if it’s inflammation or osteo) the rheumatologist may reduce my methotrexate dose. I think if there is inflammation they want to introduce another dmard and then reduce the methotrexate once that’s settled.
No, why would I??? Natural methods are not proven to control and prevent joint damage or side effects of RA no research that anything else helps RA,so I'm sticking to the so far proven treatment.
Dont be conned by baseless " cures " why would rheumatology exist if we could do it naturally I think .
Do look on NRAS.org.uk for more information on diets and treatments.
Also some RA drugs are appearing to reduce problems associated with the covid pandemic.
Because the medications are so toxic and you won’t see the effects till later down the line
I’m not worried on the Covid-19 side as I control that myself
I was just curious
I agree with both Jan & Allanah I'm afraid Debs. Actually no, I’m not afraid because I know that I would be in a much different place if it wasn’t for meds. Yes, I have one or two side effects but they're not so bad I’d opt to try to go without, they're tolerable. Also, by helping myself where I can lifestyle-wise, eating as well as I’m able & the exercise I can manage keeps me well.
Medications are only truly toxic to those who don't need them in my view. For those who do they can be transforming & whilst side effects can in some instances outweigh benefits there's usually another option which suits, you've to be very unlucky or so sensitive to meds if there's not. I don't believe that 'alternative' means better with a chronic condition, I’d be far too bothered about the future me & the erosion & damage being done with having no way of checking & halting it.
Yes I have a few times. One just recently. All have ended badly 🤦♀️ My. consultant just shakes his head & smiles.
You won’t know unless you try so if you feel that strongly give it a go but if you have to have meds it doesn’t mean you failed.
Thanks caza I always think it’s worth a try you just never know , I just think personally that meds are a last option & not for everyone but I know it would be hard work but if I can prevent toxic meds then I will have a go
No I agree with the majority who have posted already. I do not want to risk further deterioration of my joints by not taking the medication prescribed by the consultant who is the expert on RA.
But I’m also seeing an applied kinesiologist who is helping me improve my gut health. I’m eating even more healthily than I was before and avoiding pesticides and other toxins as much as possible. I think there has been a difference and it has helped me cope through lockdown when my RA drug infusion has been postponed by 3 months.
Hi
It does help with what you eat too as I’m a Coeliac I don’t eat gluten and I try to eat healthy most of the time
What does he or she tell you to eat
Or avoid
How have you got on without your infusion for 3 months
My rheumatologists have always been keen to make sure I am not taking drugs unnecessarily, so have been supportive of me trying to taper off the drugs very slowly. None of the attempts worked as I would get to a point and find that the RA bubbled up again. I am currently on Enbrel and MTX, and again Rheumatologist is keen that I get down to 10mg of MTX. I have got down to 15mg, and was due to drop another dose this month but slight signs of disease activity so will leave it for another 6 months.
I did go down the natural lifestyle route pretty early on. Lost lots of weight, took up exercise, gave up processed food, etc etc etc. And now have a great diet, and live very well. Which has been good for me generally, but has done nothing to control the RA.
But you never know till you try. But I would say do it in parallel with the drugs, and with the support of your rheumatologist. Don’t just stop drugs.
Oh yeah I won’t just do it off my own back , as of yours my rhuemy is so good and supportive and she is with me if I want to try I was just wondering people’s opinions, I just think sometimes there are options out there and not just settle and if it doesn’t work then hold your hands up and go back on meds
I know without the MTX everything rolls back in quickly and with I have side effects. So I work on and with my GP and RA team to be drugs that work whether for pain but if they do not work I get off them asap.
Without some form of RA drug the unseen damage could be huge so I have to make a decision what is right for me based on the medical input of my team.
I’m following a Mediterranean diet and eat organic produce as much as possible. I’ve reduced my red meat consumption and buy only organic or grass fed if I can. This avoids pesticides, and growth hormone and routine antibiotics fed to animals. I’m eating fish at least 3 times a week and have more vegetarian days. I have osteoporosis as well as RA so cannot give up dairy but make my own kefir, eat yoghurt and cheese as I drink little milk. I eat loads of vegetables, salad and fruit daily (more than 5 a day for sure). Sugar intake is low as I’m not a fan of cake, biscuits or desserts but have some chocolate occasionally. Also I still have a glass of wine or a G&T when I want as life without some treats would be miserable!
The kinesiologist has recommended the diet changes above and daily supplements for Omega 3 and 6 plus I’m taking highly concentrated ginger capsules and a probiotic. These are top quality products ordered through her or online not cheap high street stuff that I took before and was not doing me much good.
I’m not on MTX just my Rituximab infusions and 7mg Prednisolone daily. I would prefer not to have to take the latter but would have struggled without it, especially with the 3-month delay of the infusion. I’m keen to reduce it further as my RA is better controlled long term. I’m really pleased my next infusion will be only a week away as I know I will soon struggle without it.
Look on the internet for The Dirty Dozen and The Clean Fifteen lists produced by the Pesticide Action Network UK and try to eat as many anti-oxidant rich foods as you can.
Hi. I was interested to read that you take Omega 6 because I was advised this can increase/worsen inflammation for RA sufferers. Hence I only take omega 3. Have you had any issues?
I was told my body was deficient so take a borage oil supplement.
So pleased to read your sensible and no-nonsense report. I do agree that diet is very important - a healthy diet and life style won't cure RA but it will certainly help us to cope with it. Like you I eat mainly veg, fruit and fish; pulses and beans. I don't say No to the occasional glass of wine. My weight has been a steady 7.5 stones for many years. My husband is a keen cook - my hands prevent me from doing much - and that is an added bonus. I do take Vits. C and B12. Years ago my rheumatologist advised the Vit. C as it helps the absorption of Iron. RA sufferers are often anaemic. Although I'm not a vegan, meat is never part of my diet, so B12 tablets are useful.
I have taken Methotrexate for 22 years without trouble except a certain amount of fatigue. Last August I fell and fractured my right hip. All went well and I was back on my feet with the help of a good physiotherapist. The trauma did cause a nasty flare which persuaded my rheumatologist to add Remsima (Infliximab) to my routine. I'm still not sure whether this is doing anything for me, but am giving it a good trial. One thing I have learnt over the last 53 years with this disease is not to trust the "snake oil" merchants. In the 1960s, when nothing much was available in the way of treatment these charlatans preyed on desperate sufferers. I never succumbed to that. But with so many treatments available today there's something for everyone.
My husband's signature fish soup for supper! On that note, I'll sign off.
Having been repeatedly told my ‘joint problems’ were all because of my size, I did a massive overhaul of lifestyle and diet, dropped 10 stone in weight in 2 years, and ended up with my - as then undiagnosed - arthritis more out of control than ever. I tried several anti-inflammatory diets, exclusion diets, intermittent fasting, and various combinations thereof, but none of them helped at all with any of my numerous health issues, least of all my joints. I also tried a variety of supplements, including turmeric, and even had a crack with CBD oil all to no avail. These days I just generally eat a very healthy, normal diet, and am no worse or better off for it than I was when I was trying anything and everything I could find online to help. The only thing I’ve found so far that has any benefit at all on my arthritis symptoms is medication, and I really wish they’d diagnosed me correctly from the start, because I have far more joint damage and pain now than I would have done if I’d had access to meds.
My own personal experience is that the idea of controlling many conditions, including arthritis, by natural methods is a fallacy. There are occasions where you can improve a situation via methods other than medication, but aside from food triggered conditions and intolerances, there are very few things you can fully manage without pharmaceutical help. As someone else has said, though, if you feel that strongly then you need to try it for yourself and see because no amount of people telling you otherwise is likely to dissuade you. If you do decide to do so, just remember that when you’re getting pain from a flare, it’s also active joint damage. The pain is your immune system eating away at your joints, so if you go off your meds and start having issues, don’t be stubborn about it because you’ll regret it down the line, and you have the choice. I’d have killed to have the choice for years, and now that I finally do, for me personally, the possible long term effects easily balance out the prospect of being genuinely crippled before I even reach 40.
essexgirl in reply to
Well done you for loosing all that weight
Oh yes there are lots of different things to try and as you say it’s always in the back of your mind I can do this , if I fail , I fail but at least I tried
helixhelix in reply to
Huge congratulations for 10 stone! I lost 3 and felt as if it was as big an achievement as climbing mount everest, so you made it to go walk on the moon!
in reply to helixhelix
Thanks, Helix 😊 Three stone is an achievement, trust me. Any amount of weight is if you get it off and keep it off. I’ve been maintaining for almost 3 years now and I am fairly proud of myself. I went from a 3xl and 48” trouser to a medium and 32”, and knocked 20 points off my bmi along the way. Unfortunate thing is people say I must feel so much better for it physically, when the reality is I feel worse than ever. I believe they call that Murphy’s law!!
Mmrr in reply to
Congratulations on the weight loss. I gained 5 stone during the first 18 months of my being unwell. I've taken off just over 4 stone now and slowly getting the last off.
To be honest, whilst I look better, enjoy wearing my clothes again, I don't feel a whole lot better. But I am pleased to be back to looking more like me.
I tried the AIP diet, Autoimmune Protocol. The diet is extremely restrictive, expensive supplements. I lost 14 pounds in a month, I couldn't tolerate the diet long enough to see if it helped. There was no way I would enjoy life on this diet. My rheumatologist was shocked at my weight loss. Told me to stop.
Now I try to follow a Mediterranean diet, eat organic as much as possible, make my own kefir and sourdough. I do notice that I experience more pain and GI upset when I eat poorly.
Yes a lot of people have .....most have really, really regretted that they did.
Damaged joints because no DMards are taken do not repair themselves I’m afraid.
Were it remotely possible to control,RD/RA without the drugs most of us take ...I really think our scientists & rheumatologists would have taken it seriously by now.
Put the question in the search box, you will see how most attempts turn out...not happy reading.
I really don’t regret my lifestyle changes one little bit. I am much healthier because of it, and far less likely to get other nasty things to join the RA. And because I did it with my rheumy and in parallel with drug tapering no harm was done, as stopped tapering the minute there were signs of disease activity.
My main bit of permanent damage is due to my next rheumy who stopped my hydroxy as said I didn’t need it on top of the MTX and Sulpha. Bad mistake.
Well then after 12 years .....as you will see from all the replies here...most of us are gonna stay on our prescribed medication and have as good a life as that makes possible.
In a perfect world that would of course not be necessary...but as none of us seem to have found a better way .....that is what we choose to do.
I’m sure we would all love to stop medication- but for now that just doesn’t seem possible.
Hi essexgirl
Good question. I think if you want to do anything try all the natural things like autoimmune diets and see if you improve, see if you can do without anti inflams and painkillers. But keep taking the disease modifyers to control the inflammation. If you improve you can talk to your rheumy.
I've done the autoimmune protocol (Dr Sarah Ballantyne) but it didn't have a big effect on my RA but I've been on a forum where people have completely gone into remission and not needed any drugs.
I take curcumin supplement but still days when I need my anti-inflamms. 🤷♀️
I can understand not wanting to take medication, as I have always wanted to follow natural routes, try to keep my diet healthy(ish) and exercise where I can. Not take pain killers unless I really had to. But the amount of pain I was in prior to knowing I had RA was unbelievable, I couldn't even hardly dress myself walk and walk up stairs. I pushed really hard to see a consultant and get a diagnosis that when they gave me the medication, which took the pain away fairly quickly, I swore I would never experience that pain again. Even though I was diagnosed fairly quickly 4 months, my hands have permanent damaged in that short time. So even though I'm happy to help myself with diet, fitness and keeping stress under control I am not prepared to damage my body any more or ever experience that pain again. Please be careful you don't end up with permanently damaged joints that no amount ts of medications would then be able to help. Good luck.
I went from being fit and healthy in my 20s to barely being able to walk. Doubt a vegan diet would have helped much. I’ll stick to the drugs.
And people that are vegan are still getting RA
Do.Not. Do.It.
I can’t stress it enough! I tried a few years ago ( without telling my doctor) I even weaned off slowly ( or so I thought). At first I was great for about 2 months. Not an ache or pain and so I was happy. And then once the meds completely left my system i felt the full force of my condition all at once. I wasn’t able to move or walk or sit or work or anything. Your meds control so much more than pain. They control inflammation, prevent joint distraction, and damage to vessels and organs. If you are to lower your dose or wean off you have to do it with your doctor and still be managed.
Take care of yourself.
I have stopped taking my meds ( methotrexate and some others) I was having trouble sleeping and even sleeping aids had stopped working, my teeth were crumbling as were my fingernails and toe nails....I started by cutting the dose and tried to walk more. It was painful at first but now I’m managing ok and take pain relief on bad days. My RA has def improved through taking more exercise although my hands are still painful and swollen with osteoarthritis . I’m so glad that I wasn’t on any immune meds when the present covid crisis started. I will try and carry on as I am but a cold damp winter may well get me back on the hard stuff!
This sounds so positive. How long were you on methotrexate for?
I was on it for 16 years. When I was first diagnosed it was a Godsend as I was in excruciating pain. But over the years I felt that I was improving, not so much swelling of joints and stiffness. I’m glad I’ve done it and if I do need to go back I will make do with a lower dose as sometimes the RA does lessen but if we are taking the really high dose how do we know if we are improving or the drugs are masking the pain?
I have reduced to 10mg a week and upped turmeric, that is working well for me , with pain I would come come off completely if I could but I am frightened that I will go back to the same pain when I was first diagnosed .
I would definitely not come off mxt through choice. I have taken mxt for 18 years and only had to stop it once for 8 weeks while other medical investigations were carried out. It was the worst time of my life. I had the mother of flare ups when I was in the most excruciating pain everywhere and my Consultant, at the time, was shocked at how bad I was. I needed massive doses of steroids on several consecutive days, which gave their own horrible side effects. I was a long time getting back to how I was before even while back on mxt. These drugs aren't given lightly and your Rheumatologist would not prescribe them if they weren't necessary. x
Exactly.......If only people could accept that when you are diagnosed with RA .....99% of people will need to take one or more Dmards to lead any sort of bearable life.
Rheumatologists don’t endure expensive trainIng for years to learn how, when & why to prescribe the drugs we take.....if a certain diet & a bit of exercise would produce the same result.
Of course there are degrees of RA.....some find a treatment that suits them early after diagnosis....for others it’s a life long search.....but we do have to put in the effort & be sensible......most get relief from their drugs rather than sticking to a diet.....but trying to carry on without RA drugs does usually leads to pain & disappointment.
Be really careful with this. If you go on Facebook groups that espouse natural measures, They was lyrical about AIP, tart cherry juice, celery juice and all sorts of stuff. Yes, I’ve tried the lot in desperation but now on biologics. it’s rare to hear anyone say how well it works. Most are still in pain to some degree.
There was a really sad post from a lady who’s husband died at the start of this year. He was determined to not take meds and he ended up with it on his lungs. He still refused and it ended up being too late in the end and he died from lung inflammation. It was horrible to read.
And that’s the thing. It’s not just a joint issue and people often forget that.
I came off MTX in February after first tapering the dose. I was having major problems with the cornea of my eyes which seemed to be linked to when I started the MTX injections. I'm now taking a Turmeric supplement and have lost a little weight. I'm now 5 months down the line and don't feel any worse for being off meds (as yet)!
I had a telephone consultation with my consultant last week and she was supportive of me giving it a go. I'm sero negative and she told me that many people can achieve remission following drug therapy for a few years. I've been given the reassurance that if things flare up again I just need to ring the helpline and we can explore options.
This was something I needed to try so I understand your desire to wean yourself off, if it doesn't work for me I'll hold my hands up and look at other options but at least it will stop me wondering 'what if!
If you are sure it's what you want and your consultant is supportive then give it a go, you can always put the brakes back on.
Everyone is unique and you have to do what feels right for you. Best of luck
Yes. I took this approach for some years, with some success.
However, of course, RA is a progressive disease for many of us and it eventually goes beyond natural control. My philosophy, on this is to have the least medical intervention I can cope with. So, whilst I now take meds I also exercise and eat a clean diet, I take care of my body to the best of my ability and that helps the body deal with RA.
I refused to be scared off by the many warnings of potential joint damage, and have been fortunate to keep that at bay.
It’s about educating yourself in all matters RA, and being kind to yourself, reaching for meds when needed.
I hope you find the right path for you.
My advice would be dont do it.
I'm 40 I've been diagnosed with RA for nearly 20 years. I've not had much luck with drugs for one reason and another. Now I cant walk without a stick and a knee brace. I'm even considering a mobility scooter.
Try whatever diets etc you want but keep taking your meds.
I came off mine for a couple of month as had cough and didn’t feel that different but my left eye has been a bit red and itchy and read it could be a sign of inflammation throughout the body , ie uveitis ( they’ve never tested me for this at the hospital) I’m due an eye test at optician, have you been tested for this at the hospital. I’m on methotrexate 15mg injections
I did this. Huge mistake for me. The RA came back quickly and with vengeance. Eventually giving in and going back on the meds (methotrexate and be nepali) that had kept it under control for a couple of years didn't help, I've had huge pain since the beginning of the year and the rheumatologists aren't prescribing new drugs as yet. I did this to myself and I should have listened to the medics. I'm sick that I did it, SO wish I hadn't
I've not had a lot of success with meds and had to stop them after several months due to side effects. In the times I have been off meds, waiting for new prescriptions my condition has always deteriorated.
On more than one occasion I have considered if it is worth carrying on trying to find the medication for me, but then I feel so unwell that I take the new one. If I find something that works I'll most certainly stay with it.
I think it is easy to forget just how unwell we can feel when unmedicated.
I wish you well.
I have just stopped my Abatacept injection on Abatacept from rhuemy nurse because of my persistent diorhea been on it 7 months its been fantastic then 3 months diorhea started but I get 2 days a week when I don't have any the dsy before and the dsy of the injection. I'm 4 days now without Abatacept and 4 days without diorhea so its looking conclusive. I'm just hoping I can get to see a consultant to see what the way forward is. But to answer you these drugs are a miracle but you have to feel confident yourself best wishes x
Hi ......i never concidered coming off drugs...i had to stop taking them the side effets were doing more damage and the drugs did not work for me..That was over 20 years ago. I was diagnosed in my thirties. I am now in my early 70s.
So for thirty years i tried lots of drugs ....
But with each one my body rejected....
Yet i know friends who have been on their drugs quite happily for years no real side effects but they are stabilized...
I am not.. my bodies immune system fights me every day Deforming and incapacitating me....in a very painful way...
.For me it was the luck of the draw....
You need to talk to your consultant and go into all your options.....
I hope you find a solution that suits you.
Good luck..
.
Very sorry to read your experience. Life must’ve been and may be still is such a challenge . The RA journey is hard hard hard but to not be able to tolerate a drug is awful.
Not a chance in Hades. I'm never going back to being so disabled that I wanted a motorized wheelchair, and then realized that the only way I'd be able to drive it was with with my eye movements or a breath tube.
There's nothing "natural" about this disease. I don't expect anything natural will kill or cure it. If that was in any way true, we'd have beat it in the millennia before now.
I sympathise with you essexgirl. I am sero negative and have been blessed with periods of remission when I didn’t take any drugs. My last remission lasted nearly 13 years and it was like a miracle. I try to eat super healthily, drink little alcohol or coffee and try to walk through the pain. Reflexology and yoga have helped me a lot. I try to eat an 80% plant based diet. My best friend also had RA and she wasn’t interested in diet or exercise and embraced every medication she was offered ( she had an A4 of a whole list of drugs which she had laminated. She also had asthma and had the central heating on in June and 2 small dogs). She died when she was 60 and one of the reasons for her death was all the side effects of so many drugs but I’m sure her lifestyle choices also contributed as they wouldn’t have helped her lungs. I think we all need to have a balanced approach. Do our best to lead a healthy life as much as possible but also make choices where necessary about using meds.
Hi Kalimer65 wow fantastic to have periods of remission I bet that makes it easier to go drug free , Yh I also think that some people just take what they are given and ask no questions , I know it will be a case of 100% dedication as it depends how much you want to try , if there’s an alternative I’m there to try ,Thankyou for your positive reply
😁
I’ve just had six months without medication because of chest infections, the loss of my dad amongst other things. I had to beg to speak to my rheumy consultant because I’m in a terrible state I should have spoken to rheumy sooner because I’m seriously regretting it now. Do whatever you have to do but dedication to a cause for the sake of try it and see rarely works out. I just hope whilst you give it a go that you’re honest with yourself and don’t just plough on in pain for ‘just a little longer’. I know if I’d have known that I was going to end up like this I would have sought help sooner and there’s no way I will ever be unmedicated again it’s not worth it but you might be a lucky one but it’s very rare for that to happen.
I have had RA for 20 years I eat healthily and maintain a good weight, 5 years ago I was taking methotrexate, naproxen and Humira which was all working well then I developed what my doctor called an "unexplained malaise" I was generally very unwell and struggling to function normally. She advised that I stopped taking all medications so I did, for the first week I felt better then the pain started, it was far far worse than anything I had felt before.
My rheumatologist was horrified that I had been given this advice and was very annoyed that he had not been consulted.
I was not able to go back to Humira as revisiting a drug like that does not work. I have since been on several other biologics trying to find one that works as well as Humira, it has been a long and painful journey. I am now on Baricitinib which is great, no side effects and no need for Methotrexate.
I would certainly not recommend stopping any medications without proper consultation with a rheumatologist.
My intent of coming off of MTX was to feel better because I was so sick on it. It’s been a year and a half and I’m starting now to feel the need for something to help but I’m in a quandary. If I take something now I become more susceptible to Covid. If I don’t, what’s happening to my body? Will be making an appointment with my rheumy soon to check out my bloodwork to see what’s going on at this point. I think it’s a personal decision that every one must make together with advice from their rheumy as to what’s the best thing for you to do. Best wishes.
Lots of diseases are natural and RA is in the fossil records so hard to understand how people had it then when no fast foods etc, a balanced diet is always a good idea as is a healthy weight. But honestly I think your choice, take a chance and ignore medical wisdom proved to work and try to control an auto immune disease by diet or natural methods and if it doesn't work lets hope you don't incur permeant damage or any of the things linked to RA like pain, blood clots, lung inflammation etc. All medications are toxic ? yes no such thing as a safe medicine but paracetamol is a medication not without risk and yet most take it without a second thought.
If you don't want to take anything I wish you the best of luck but I do think if your considering buying some book or package promoting a "diet plan" that claims to have "cured" RA that you are aware of the risk of irreversible damage to your joints.
I have never taken any because all I was offered was cancer drugs which I refused. I have been fine.
I have turmeric and B6 complex - used to take more but just take those 2 now - Rheumatology only ring me once a year which is quite enough! I do have a weekly massage and a paraffin wax bath for my hands at my hairdresser's house - I got stiff because of not being able to swim most days and so had to go to the chiropractor but hope to start swimming when our leisure centre allows from 10 August.
Hi, How will you go about trying to come off of meds and control RA??
Gradually reduce meds with excercise healthy diet but being monitored, I have actually been in remission before so it’s getting back on it to see if it’s possible
Unfortunately when I'm off my drugs for any length of time my RA hits back with avengance. I would be too terrified of the internal damage that it could cause to my lungs heart.... not to mention the damage to my joints. I'm sure everyone would love to stop medication and live the life that once was, but realistically this is never going to happen until there is a cure. Sorry 3 months late but was I terested in your post.
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