Methotrexate tablets, does anybody experiment with their dose, for example, taking 15 mg but decide to cut back to 10mg., as things appear to be going ok.
I appreciate you cannot give medical advice, but curious if people take control regardless of GP recommendations and is their a problem if you change your weekly dosage?
Perhaps useful info what this experienced rheumy says about the efficacy of MtX 15-20mg dose vs 7,5-10mg. Less is not neccessarily less effective.
rheumnow.com/content/dsb-ma...
Thanks for the information, really helpful, dare I say I have felt better, after cutting back my weekly dosage, perhaps less is more.
Hi I had to stop the tablets as they made me so Ill for months and changed to the methotrexate injections and what a difference, I can do alot more even if it's just sitting up on my couch speak. A stopped them 3 wks ago cause there not working so AV gave up now but my hubby is telling me to get bk 2 rheumy but AV got the AM severe and it's progressing really fast. Ma hair has also falling out a lot but a read that the methotrexate can do that, I just hope u get the answers u need. Anyone know of any thing else a could possibly try for AM? X
Hello Oneta - an interesting question especially for me at this time. I can tell you of my goings on in this regard! I have been on Methotrexate Metroject 17.5mg weekly for four years now which is nothing too onerous and I am in good health and blood tests are normal. Just after Christmas I went to India for two weeks and this sort of put me out of sync with dosage as I had made a decision not to take it whilst abroad. I am now find myself taking the dose fortnightly rather than weekly now. Methotrexate stays in the system for quite a while so I do not expect too much in the way of symptoms and it has been only six weeks or so taking alternate Sundays. I have just had my bi monthly blood test yesterday (the results of which I can check out myself) as well as the GP. I have a regular appointment with the Rheumatologist mid March where I can discuss all this. He may say that's fine or say it's not fine and that's fine with me, will listen carefully. I am happier with being interactive concerning my meds. A year or two ago another Rheumatologist put me on Sulphsalazine because it was the protocol for the treatment I was under at that time. It had side effects and did nothing useful that I cold see, so took myself off it. In trepidation I told this guy expecting a telling off but he just shrugged his shoulders and said 'probably a good idea!' That surprised me I can say! But then I am only one of many patients in his life and am the only patient in mine!
Whatever changes you make Oneta, make sure you keep very precise notes for discussion with your GP and best of wishes.
Sandra
I think thats a very interesting question. Thank you. I have to pay to get my results from gp so dont anymore, I get told them when I see rheumy.
Best not to mess with dosages without speaking to your rehumy nurse.....it could skew your blood tests.
Definitely would discuss it with a professional at some stage
I would always discuss what I wanted to do with my rheumy. And usually she agrees and supports me. Sometimes if you do things without their support they can respond by being less interested in you as they feel you aren't interested in their opinions.
I keep careful track of my blood results and note my symptoms, and then have a clear list of things I want to ask the rheumy. So for example, my last appointment I asked her whether I coukd reduce my does of MTX and she was happy to do so.
I agree we should take control, but with the rheumy not against them.
The research paper Simba links says that lower doses MAY be more effective.... so it could be fine for you, or equally it could allow the disease to get out of control again. If you suffer with side effects from the MTX then perhaps that's why you feel better, as it will take a while to see if this dosage changes the effect on your RA.
Agree, so will experiment a bit and let you know the outcome.
Hiya Oneta. Not without prior agreement with my Rheumy. The thing is you could send yourself into a flare, which would show in your bloods & then your Rheumy would wonder why!
Your MTX dose is best not messed with even if you feel as though you're under control, although I don't think mild improvement would be a reason for me to consider reducing my dose. Your Rheumy will discuss it with you, so mention it at your next appointment, he may think it's a good idea to try reducing it a little but on the other hand he may think it's the ideal dose for you & keeping you in clinical remission.
Do you keep a drug monitoring record book? If so it might be helpful for you to see what your levels are, that may impact on what your Rheumy decides is best for you. As your GP only represcribes (wasn't the initial prescriber as MTX is a specialist med) he would want your Rheumy to take the lead on dosage.
Keep thorough records, so keen to experiment as taken the same dosage for the rest of my life does not appeal, I would prefer to increase dosage when the need arises, but I need to know how long any adjustment takes effect on my body.
If you're wanting to experiment please discuss it with your Rheumy, that way if you run into trouble he's aware. As I said before he'll wonder why if your drug monitoring bloods are awry, especially your CRP. My experience is no MTX for 2 -3 weeks & my joints really grumble. In the 10 years I've been on MTX I've reduced my dose probably 3 times under the supervision of my Rheumy but had to go back up to a higher dose than previously. Now on the highest dose I've ever been on, 20mg subcut.
Thanks for sharing, I will be extremely careful, but I feel it’s worth a try.
Ok, but it was only a fortnight ago you said you had mild improvement on MTX so it seems odd you're wanting to reduce the dose. Honestly if that's how I was feeling I'd stay put until my next Rheumy appointment, he may wish to add another DMARD or just increase your MTX to bring you under better control. We don't know what the future holds but it does include treatment as long as we have RD whichever they may be.
Thanks for your comments
If you experiment & end up with a long flare your doctors can't control because you have tinkered with doses, you will regret it. If 'x' mg of a drug keeps your disease under control. ....what's the problem?
Many of us would love to be controlled by one drug forever.
Consultant Rheumatologists train for many years to know how to "experiment " with drugs,& do not take kindly to patients who think they know better. By All means ask if you can up or down doses, but having a guess yourself is as good a way as any to get your rehumy to lose interest in helping you...& that is not good.
Talk to your doctors....that way they can help you.
I will discuss it with my doctor when I next visit. But, do you not think it’s worth questioning as one standard treatment may not suite everyone. I will record any changes that affect me, so I have a detailed information to share with my doctor after a trial of a few weeks. I just feel being told to stay on medication for the rest of your life, may not be the solution for me.
I don't think anybody "stays on one standard treatment for life"as a matter of course. Have you been told that by your doctors, or is that what you envisage will happen?
I have been on RA/RD drugs for 20 + years. I have taken many,many drugs. If a drug has worked well , controlling inflammation & pain & my rheumatologist has been happy with my overall condition & my blood test results & I have had a good quality of life, I have remained on it until it ceased to help me.
My RD is well controlled & I live as good a life as friends of my age.
Yes I still take RA meds.....I am reviewed regularly & I discuss my treatment with my Rheumatologist or Rheumy nurse at regular intervals.
RD treatment is different for everybody....as has been said many times - no one regime suits all. That is why it is so important that patients do not to decide to alter prescribed meds doses before thorough discussion with their doctor.
I hope you find the drugs that help you very soon.
Thanks for your thoughts and yes I was told i will be on mx for the rest of my life, obviously the dose will be adjusted to my needs as I get older I imagine, hence whilst I can manage the pain at the moment keen to lower my dose as I appreciate there will be a time maybe in the future when I will want all sorts of stuff to manage my condition and any discomfort I experience.
Not to question your Rheumy because he's your Specialist after all & who knows what's the best treatment for you presently but I don't see how he or any other can say you will remain on MTX the rest of your life. There are so many variables to consider. Maybe for the time being he thinks it's the best option for you but the future? Who knows? You may be able change to another DMARD such as hydroxychloroquine but equally you may need better control & need to progress on to biologics. There's no changing doses on those except at the behest of your Rheumy.
Yes you probably will take some drug for the rest of your life, unless you are one if the lucky few who go into remission. So if Mtx suits you,controls your disease & allows you a good life...... what's wrong with that?
If your rheumatologist is happy & convinced it is controlling the disease.....surely that is better than lurching painfully & miserably from Dmards to Biologics & maybe back again?
Unfortunately no doctor,no matter how well qualified, can know how this disease will progress ....most of us would love to be settled on a drug that suits us & allows us a decent life style.
Very few are on Mtx for the rest of their lives. Sooner or later the effect of the drug will wear off or the side effects stop its usage.So not exactly correct information. I can only understand it being more beneficial getting along with lower doses. Important perhaps to follow your inflammation status. How much synovitis you have. MRI and US most dependable exams to monitor this. Blood tests seldom dependable. Keeping inflammation down, whatever way you manage to do this is essential. Good luck.
Cheers
There are constantly happening new things in the treatment of RA. By following new research we have a possibility bring in new things into our discussion with our rheumy and I'm sure come to more individual treatment strategies and at the same time make real cooperation possible. Here is a new review on the eficacy of mtx. And what factors are at play.
I do alter my dose a bit. I’m prescribed 15mg but if I take this dose all the time my hair starts to fall a bit so one week I take 12.5 and the next week 15mg. It seems to help it a bit but it’s got so thin anyway maybe it’s just wishful thinking. If the bio I’ve started works we’ve decided to try to drop the Mxt altogether. We’ll see! ....I haven’t mentioned messing around with the doses to my Rheumy but as I’m seronegative nothing shows in my bloods anyway, not even when I have a bad flare.
?? Seronegative is just the antibodies......if you flare do your inflammation markers change? Mine don't change much and always have a battle to get the hospital to remember that for me an ESR of 9 is bad when many other people would think ot wonderful. However there is still a small change.
Well I don’t routinely get copies of my bloods but I’ve looked at the few I’ve got from the last few years and I don’t appear to ever have an ESR test. My CRP seems to be either 5 or 7 all the time. In other words in 4 years my tests have pretty much stayed the same, however I’ve been feeling.
Like to have balance in my life, love your comments
I wouldn’t change the dose, I have so much respect for my Rheumatologist and the knowledge and expertise that she has is so valuable in dealing with her patients. Please discuss it at your next appointment but as MTX can take a long time to get into your system to work at full strength and thus impacting on the RA, these DMARDS are not something to be played around with, without expertise.
Thanks for those wise words
No, I don’t experiment with my meds. Simple as that. It’s taken such a long time to get any kind of control over my RA and to be actually living some kind of life I can’t understand why anyone would want to risk a flare by not following their rheumy’s advice. I’d always talk things through if I’m not happy with my treatment and jointly decide what is best to do.
As others have said, not one treatment suits all and everyone here is on different combinations of drugs that have been worked on to give them control of their RA. I feel in control now for the first time in nearly 30 years and that’s because of new developments over the years in medications. Yes you may be on mtx for the rest of your life but you may not too, nobody’can foresee that but I would think you would want your RA controlled and if mtx is doing that surely that’s a good thing.
Sorry if this sounds like a rant it’s not meant t to be. I wonder if you haven’t been diagnosed long?
Thanks for your thoughts, appreciate all the feedback
Personally I wouldn't alter any doses, as others have said this would give a false impression to your Drs about how effective the meds they have put you on are working and wouldn't be able to adjust meds accordingly. If you're concerned about meds speak to RA team The nature of this disease is it's progressive and it's the meds that control the damage it can do to your joints. X
Thanks for your opinion
I cut back from 25 to 20 because I was getting pains in my stomach and afraid of an ulcer. All over pain has worsened. I go back in a couple of weeks. I’ll see what rheumy says then.
My Dr recommends 15 to 20 mg as well and he is smarter than me.
Yes, I have cut back my methotrexate with Doctors advice, but be aware it takes 3 months before you will notice a difference, a long time to build up in your system & a long time to go down.
I learnt how to inject upper legs - love read online gets into body 70 % better than pills I back up !
I alter my dose of meds, preferably with rheumatology support, but sometimes, in my experience you just need to do it alone.
I had to drop my MTX due to side effects, after I experimented with alternating weeks of 10 /12.5 mgs MTX, and initially found it useful, I phoned rheumatology and explained what I had done, they supported me and wrote to my GP. The GP had initially refused to support my change, despite mucositis and gut problems, fortunately I had a few 10mgs metoject at home that allowed me to do this.
Thanks for your comments, very enlightening
Hi Oneta, i was on 6 x 2.5mg weekly, i cut down to 5, still felt fine, cut to 4 and some pains returned so i have stuck to 5. I haven't mentioned anything to either my doctor or blood nurses, as i was having monthly blood tests. Nothing has been mentioned about any markers in my blood having raised levels and i feel ok. My recptionist at the doctors should be taking 12 a week and has dropped them to 8, again she is ok. I think you have to test how your body reacts, as we are all different.
I agree entirely, keen to give it a try and listen to my body, thanks for your feedback.
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