Methotrexate?

Thanks for sharing Donna, it does sound scary. But I guess everyone’s experiences are different. all I can do is give it a go and if the side effects are horrible I will probably stop taking it. It’s a hard decision though because you want to do whatever you can to stop the progress… Good luck with week 2 Donna, let me know how it goes, Kelly xox

Starting on methotrexate is nerve wracking, to say the least. I took my first dose, 7.5 mg, yesterday evening. The past 24 hours have been fine - no side effects.

That’s great. I was nauseous with my very first dose, and it continued as long as I take it.

Good luck to you all on the MTX trail, think its also important to remember there are no quick fix remedies out there for us. Most of the time its a case of trusting in the medical research that’s been done and the pathways of care we are put on that are the result of many years of evidence based practice. I’ve learnt that we need to give things a fair chance to start to work and keep a record of the effects you encounter, this helps our care providers to see the evidence of our commitment to complying with their treatment and our engagement with the whole process. In my experience having documentation of how we cope with the meds give our care providers with a much clearer overview.

Good advice louise

Good luck Sally, I hope it stays that way and that you are one of the lucky people who don’t get any side effects :slight_smile:

Kelly, any update to starting Mtx? I am on about my 7th week of it with minimal issues. I did not want to start it and still don’t like taking it but I don’t think I have many options. I am only 36 and newly diagnosed so not ready to blow thru the biologics. As others have said, u may feel a little weird initially. Usually when I take my dose, I feel slightly off or loopy for 1-2 days after. Nothing terrible and, in general, it doesn’t really prevent me from doing things. Right now I have had a decrease in my white blood cell count so I may have to stop it but we will see. Good luck with it and feel free to contact me anytime as I am a newbie myself
Melissa

Hi Melissa, great to hear from you. Thanks for sharing your experience. I see my rheumy this arvo to discuss Mtx. I am actually worried that the NSAIDs (naproxen sodium) is increasing my blood pressure as 2 days ago I started to develop a severe headache that lasted up until lunchtime yesterday, with vomiting and dizziness. Went to see a doctor and he said my BP was up around 140/85 which is high for me as last time I was 110/75. I have noticed my BP has only ever gone up while on Naproxen sodium. Have you ever been on this drug? I’m going to talk to my rheumy about it today.



Melissa said:

Kelly, any update to starting Mtx? I am on about my 7th week of it with minimal issues. I did not want to start it and still don’t like taking it but I don’t think I have many options. I am only 36 and newly diagnosed so not ready to blow thru the biologics. As others have said, u may feel a little weird initially. Usually when I take my dose, I feel slightly off or loopy for 1-2 days after. Nothing terrible and, in general, it doesn’t really prevent me from doing things. Right now I have had a decrease in my white blood cell count so I may have to stop it but we will see. Good luck with it and feel free to contact me anytime as I am a newbie myself
Melissa

I started MTX in May due to the progression. I started with pills and am now doing injections. I surrendered due to the fact that I no longer could deal with flares using only Celebrex and the flares and daily pain was increasing. I went from a super active life (avid runner) to a super slow pace. I started having flares in my late 20’s. My rheumatologist is excellent and diagnosed me in my mid 30’s. I had the occasional patch of eczema until a few months ago when I broke out with psoriasis on my hands and now foot. I’m 41 and am trying to keep the faith…quality of life!

My cell count is down…low on iron but my rheumy said that was not the MTX but the actually disease. Side effects so far have been nausea and fatigue that is usually the worst the first few days…also have an eye thing happen almost like allergies but only lasts a day. I’m trying different things…diet changes and pushing myself to move daily. I miss the old me and am keeping faith that we will find something to get me back to semi normal. MTX is different for everyone. I was very nervous starting it however my flares were happening more often and my quality of life was going fast. My rheumy is also a researcher. She told me the disease could impact my heart…greater chance of heart disease. Again…it’s quality of life.

Oh wow! I am sorry to hear what you are going thru with the headaches and vomiting as well as blood pressure. Hopefully your rheumy has some answers for you. Right now I am on methotrexate and diclofenac sodium but it doesn’t appear to have impacted my blood pressure. Knock in wood!




Kellr84 said:

Hi Melissa, great to hear from you. Thanks for sharing your experience. I see my rheumy this arvo to discuss Mtx. I am actually worried that the NSAIDs (naproxen sodium) is increasing my blood pressure as 2 days ago I started to develop a severe headache that lasted up until lunchtime yesterday, with vomiting and dizziness. Went to see a doctor and he said my BP was up around 140/85 which is high for me as last time I was 110/75. I have noticed my BP has only ever gone up while on Naproxen sodium. Have you ever been on this drug? I’m going to talk to my rheumy about it today.


Melissa said:
Kelly, any update to starting Mtx? I am on about my 7th week of it with minimal issues. I did not want to start it and still don’t like taking it but I don’t think I have many options. I am only 36 and newly diagnosed so not ready to blow thru the biologics. As others have said, u may feel a little weird initially. Usually when I take my dose, I feel slightly off or loopy for 1-2 days after. Nothing terrible and, in general, it doesn’t really prevent me from doing things. Right now I have had a decrease in my white blood cell count so I may have to stop it but we will see. Good luck with it and feel free to contact me anytime as I am a newbie myself
Melissa

Tara, my cell count was going down too about 6 weeks after being on Mtx. I have to go back in for a recheck. Initially I was hoping it would stay low so I could get off Mtx because I don’t like it. But, after reading some posts from others I should probably just be happy that it seems to be helping a little. I don’t want to blow thru the biologics and then have nothing. I saw in your post that you were an avid runner. What do you do now for physical activity and how we’re u able to cope with not running? I had started running after my 2 child and actually liked running for the first time in my life. Then I got diagnosed with PsA and had to stop. I am lucky if I can go out and walk. It’s upsetting because I a,so used to love to lift weights and now with my various pains, it seems too difficult. Just wondering if u have any words of advice on this?
Melissa



Tara said:

My cell count is down…low on iron but my rheumy said that was not the MTX but the actually disease. Side effects so far have been nausea and fatigue that is usually the worst the first few days…also have an eye thing happen almost like allergies but only lasts a day. I’m trying different things…diet changes and pushing myself to move daily. I miss the old me and am keeping faith that we will find something to get me back to semi normal. MTX is different for everyone. I was very nervous starting it however my flares were happening more often and my quality of life was going fast. My rheumy is also a researcher. She told me the disease could impact my heart…greater chance of heart disease. Again…it’s quality of life.

Hi Melissa, that’s the part I’m having the hardest time with. I was training for a half prior to starting MTX and continued to run a bit once I started the meds however I ended up having a really bad flare in my knee after a long run. I had never had a flare in my knee and that’s when I stopped running. Same thing with the weights, I was lifting frequently, gradually increasing weight and poof a flare in my arm. My hands started to get really bad and I was finding during the end of my day at work my hands were in pain, a burning sensation after pulling lines at work. I started having the same pain when holding weights or doing anything with my hands that was repetitive. My Rheumatologist told me that I had to slow right down and give the meds time to work. I have a referral to see a physical therapist to work on an exercise plan. As far as my energy level…it’s gone. I walked yesterday and it felt like I was weighted down or pushing against a strong wind. I

My current plan is to rest, do what I can me wait and see if my energy level improves. Long term plan is to remain active. Walking,swimming,light weights and maybe some cycling. Kettle bells are great because they are easier to hang on to. The fact that I flare from activity scares me and I’m wondering if anyone else found that flares were increased after activity? That may be a dumb question however I have a super active job and have always been active and when I flared I never pinpointed it to over use it was always a mystery attack. Generally I would wake up and poof be flaring. I would have flu like symptoms prior too so would start the Celebrex but sometimes hit the point of no return and that meant pain killers and cortisone shots. This would only happen once or twice a year but last winter I started flaring every few weeks…hence starting MTX.

I was going to the gym 3 days a week and doing lots of weight when my flare hit me. It started off with my wrist swelling after doing bicep curls with the free weights and then my knee started to swell after doing leg press :frowning: was so annoyed cuz I’d just lost 10kg. In the last 2 months I have put 2 kg on that weight back on :frowning: so frustrating after working so hard. I’m really desperately wanting to get back in the gym. Do u guys think I should wait until I have settled on the Mtx ? Or maybe I can start off really lightly now…


I just made an appointment to start an exercise plan with a Physical therapist. I’ve gained at least 5 pounds and have gone from active to nearly. My rheumy said keep moving but no 11 mile runs or heavy weights. To be honest I wouldn’t have the energy to do anything major. I would recommend you listen to your body and do something :-). I’ve been pushing myself to get out and walk and swimming in my friends pool and I find it perks me up a bit. As far as weights go light, if you feel pain then lighter, still pain then skip the exercise. I started injections two weeks ago slightly increasing the dose so I’m exhausted but I found with the pills during the later part of the week I had more energy and was able to lift light. I hope the same happens with the injections.


Kellr84 said:
I was going to the gym 3 days a week and doing lots of weight when my flare hit me. It started off with my wrist swelling after doing bicep curls with the free weights and then my knee started to swell after doing leg press :( was so annoyed cuz I'd just lost 10kg. In the last 2 months I have put 2 kg on that weight back on :( so frustrating after working so hard. I'm really desperately wanting to get back in the gym. Do u guys think I should wait until I have settled on the Mtx ? Or maybe I can start off really lightly now..

Thanks for the advice Tara, I feel as though I can do some really light exercise, maybe just some light cardio and very light weights…

It seems everyone is different. Some do well on Mtx.

Not me, I couldn't function, it made me loopy. I felt like that all the time. I had about 12 side effects.

This is my second week on Methotrexate, its rough, but I think it is helping. I take it in the begining of week, 2 days later it seems to help then 2 days later I'm back to itching and hurting all over again. Hopefully in time it will work better.Is this how it works for other people? Any tricks to fighting the fatigue that anyone can share?

Dini said:

It seems everyone is different. Some do well on Mtx.

Not me, I couldn't function, it made me loopy. I felt like that all the time. I had about 12 side effects.

MTX is a DMARD. By way of explanation that is more illustrative than technically correct It controls inflammation more like birth control pill than anything. The whole inflammatory process goes on, it just never results in inflammation. So on the one hand you get a measure of pain management and on the other it acts like its inflamed. The fatigue is not "real" its "chemical" it can believe it or not be overcome BUT it requires some pretty heavy training. You need to get your heart rate up in the "endorphin rush" state to kill it or push yourself enough, that it gets the idea its not fatigued. ANYONE can do enough low impact repetitive activity to accomplish this (even deep breathing/meditative yoga poses will help) That being said if you take ANY opiates/narcos in any amount even a few times a month you are mostly screwed. The "chemists" working in your body become cluless as what to do. The body becomes perpetually lethargic.

If you are taking an opiate antagonist like tramadol its even worse. The ultimate effect is even though you have "pain control" (you really don't, your body function has been suppressed enough that you just don't notice the pain) is you will eventually have more and different pain.

The antagonists also have a psychological effect that is NOT good making them more difficult to come off than heroin if you have been on them any length of time (The used to be a whole bunch of them available - most have been taken off the market) Few modern Rheumys will prescribe any narcos and more than a few will fir a patient who accesses them elsewhere. - The essentially undo most of the treatment the rheumys do) Just stopping them won't restore normal function. That instant relief comes with a big price. It can take months to get back to normal.

So all of that to say act like you are not fatigued (work out or just work) so your body gets the idea - it will eventually and NO narcos.