My rheumy has me on a weaning schedule to see how I am with less Mtx while Rinvoq is still doing its thing. I’ve been on 25mg/week of Mtx for a few years but in the last 8 months have been reducing the dose by 2.5mg (one pill) every 5 weeks. I’m now down to 10mg/week from 25. And old aches are returning. My knee/leg/foot pain is waking me up again, fatigue is sneaking back. Getting moving after being stationary for +20 minutes is painful and stiff.
The only thing that has changed is my dose of Mtx but then again, maybe it’s just a flare of sorts. Is mono-therapy a reasonable goal? Have others been through an Mtx weaning? Thanks and enjoy each moment of the day that reveals a sense of wonder and gratitude, we live in a rapidly changing world that can cloud our view but underlying it all, much beauty can be found!
I think everyone has a different experience with this. Mono therapy will work for some but not others, same as for many people a good biologic lasts for ten years, but some of us have immune systems that wriggle their way around them in a year or two.
I’ve never been through a period of weaning, MTX barely touches the sides for me anyway - I’m gonna say that in a big flare it might give me a 20% improvement in my hands only. They are usually the least of my worries, coming well after my spine and large joints (though right now I am awake too early because of my carpal tunnel in my hands).
Despite that, MTX is the only thing I have available to me right now so I’m taking it (plus plaquenil - but it doesn’t work at all for me - that’s all about the hoops).
My question is why wean at all? MTX can have unpleasant side effects, but you’ve obviously overcome those if you’ve been on 25mg for some time. It also can do damage to the liver, but for most people significantly less damage than fatty liver disease or alcohol.
It’s not like steroids which cause this incredible cascade of problems if taken long term, so why the goal to wean off it? (Totally get it if it is just to take less medication, I think we’d all like that).
Can you give your Rheumy a call about it? If it were me I’d be tempted to go back up an increment, see if the flare sorts itself out, then resume weaning.
If trying that a few times keeps resulting in increased pain and stiffness, then I guess you have an answer.
Thanks @Jen75. My rheumy seems set to find the right mix of rx and probably less intending to wean off as much as I want to. I guess it will go as you suggested, up a bit and down a bit to find the minimum dose that is effective. If I quit completely all at once I might regret it and the long process back. I don’t really get how fast it loses its effectiveness once stopped and why it takes so long to get it up and running again. (Mtx). At least I won’t be guessing as to its usefulness in this battle.
If it’s not broken don’t fix it. The only reason I’m on a biologic on its own is because sulfasalazine had an argument with Benepali (biosimilar to enbrel) landing me in hospital with virulent diarrhoea. Had that not happened I’d still be taking sulfasalazine now. Possibly albeit at a lower dose but still taking it too. Especially with mxt, they say it helps keep your body on the roll with the biologic better too. But if things were going well why change anything? You’re not yet on a year with Rinvoq yet are you?
Rinvoq for six months. A couple of background things also going on. 1. I started developing sores, random welts sort of like acne but large and deep under the skin. They take 3-4 weeks to go away. When I reduced Mtx to 15, they greatly lessened. 2. My blood pressure was always very low, 110/60 was a common average. Since Mtx, it has been slowly increasing to 138/85. It has sort of peaked now but I think my rheumy is eyeballing possible Mtx side effects and cuz I’ve been feeling pretty good, looking to tweak things. Unfortunately, my super rheumy is about 70 and lately his availability seems to be less and less. I’ve only seen him once in person in 18 months and one phone call. All decisions made are based on my 3 month blood work and how I express how I feel, no hands on joint inspection or imaging etc. He does answer questions via email through his assistant. I suspect that he will tell me to increase Mtx to see if I get better pain management. Because of his longevity in the field, he has a bazillion patients…who all want special attention.
Maybe it’s also time to proactively start the search for a new rheumatologist. At 70, he is going to retire sooner rather than later.
Well, the thought has crossed my mind but I am hoping that he will give a “heads up” when that day is looming. Thanks
Agreed. The hope is always a smooth transition, but you know that doesn’t always happen. Especially since you seem to have some questions about your current treatment, a second opinion can’t hurt.
Susan
Re: monotherapy I’m not a believer at least for me. The bios do a Great job in prevention and long-term disease control but seem to peak and then wane in term of controlling day to day symptoms that are a result of pre existing damage. There really is nothing in their mechanism of action that does that. That leads you the choice of DMARDs or NSAIDs. If one were to pick from the options available to us a medication with the most potential for serious side effects and long-term damage it would be NSAIDs. Routine lab work will catch DMARD damage early as those numbers show up in the liver which has a great potential for self repair. NSAID numbers show up in the kidneys which don’t plus REAL gastric issues.
What I have learned is tha weaning back your MTX dosage is not only a good idea but very possible. It seems for many me anyway to take less over time
As far as a old Rheumie, I wouldn’t worry. This is the last area of intellectual medicine These guys love what they do. Its not uncommon for them to practice well into their 70’s. Besides 70 isn’t that old. (At least I hope it isn’t…)
As said above, I was on 25 mg Mtx and then settled at 20 according to rheumy advice. I was quite encouraged with how I was feeling being 6 months into the Rinvoq. But after being at 10mg Mtx, pain is creeping back…I feel like I am slipping backwards instead of holding on and even seeing improvement. So I just went back to 15mg because that was the last amount in which I felt “good”. I think the rheumy was blasting me hard initially to get a quick handle on things and now it is a matter of fine tuning the meds…me thinks that 10mg is insufficient. I have no idea how long before I might notice an improvement now that I am back at 15mg Mtx.
Depending on how you are taking it in my experience makes a difference. I suspect it has a bearing on how much of the med is actually put to work… Pills - worthless, subQ injection better, IM by far the best and I could literall feel it going to work. Since my stroke and all the blood thinners back to subQ but had to increase the dosage a bit.
I’m fortunate (or not) that I have a builtin MTX meter - seriously. Life is very busy these days and as religious as I am i tend to forget my MTX injection (or in all honestly just am not ready for the poke despite that I feel nothing Its just attitude) Sure enough I start with a bit of P Burn/itch between two of my toes. If I ignore that its is raging shortly after a half day, Within hours of injecting Its done. My “meter” is so accurate that I prolly only inject every 10 days. I may go “on time” or even a dy eaarly if I have an alcohol involved event coming up or need to mow which of course requires a cold brew reward.
Thanks, I didn’t know that pill form was less effective…I only heard about some people being unable to do oral MTX for stomach reasons. Is there much cost difference between oral and sub-q? It sounds like you have really fine tuned your body…kind of like an expensive sports car!
That’s somewhat anecdotal though more than one doc says it is. I switched to injectable when there was a MTX shortage a number of years back. (There was plenty of injectable) it was cheaper at the time dunno about now. Pharma always to the rescue instead of making more pills introduced Rasuvo and Otrexup. Not sure if they ever caught on. They were nothing more than MTX in a prefilled autoinjector at a very high price. My old rheumy say there are still parts of the world that calls Americans Wimps for using folic acid…