Hope you are all trying to remain positive and are tolerating your meds ok... Firstly, I am no stranger to hard work after having studied for 10 years to get to where I am today as an accredited medical sonographer and working 2-3 jobs at a time in various fields of work just to have enough money to put myself through university. I have been working full-time for a number of years and finally finished all my study at the end of last year, which was a huge relief! And then my health problems struck me down like they were waiting in the wings.. I am currently working 42 hours per week, most of that time is spent on my feet, and I am struggling to get through a full weeks work. I don't even have any children to look after like some of you do!! What coping mechanisms do you other full-timers use to get through the week? Is anyone else struggling? I don't know if I'm imagining it, but this Mtx seems to be making me incredibly tired and I had to take a sick day on Wednesday due to extreme fatigue the day after taking my dose. I am increasing my dose on Tuesday, so I have pre-emptively taken leave the following day so I can sleep it off... Does it get easier? Will the symptoms ease?
Thanks in advance for your advice and sharing your experiences xoxox
Hi Kelly, I started MTX 3 months ago and yes I’m finding the fatigue can be tough especially when increasing the dose. I too found the day after and the day of depending on the time of taking the MTX were the worst. I also had a lot of neausea. I went up to 8 pills and am now doing injections. It will be 5 weeks on the same dose 25mg injections this Monday and I’m finding my energy level is slowly getting better and the nausea has decreased. Unfortunately I’m having more pain then prior to going on the MTX but the reason I went on it was because of the increase in flares. I worked through the first 6 weeks but am currently off work. I am also taking folic acid along with the MTX. Apparently this helps with the side effects. Are you taking folic acid?
Yes I am taking 10mg folic acid 2 days after the Mtx... The nausea has settled, its just the fatigue at the moment that I struggle with, but that could just be the PsA symptoms... I am glad your energy levels are on the increase. Sorry to hear that you are off work. I hope you improve soon and the flares become fewer and farther between :)
Those side effects are typical of MTX. Folic Acid is suppose to reduce the side effetcs, but if not taking properly, they can also reduce the effectiveness of MTX.
Just keep your head up and take it one day at a time and do your best to relax. I know it sounds hard, but the more you “stress out” the worse your condition will more than likely be.
Thank you! Yes, very true about the stress, thanks for your advice
mataribot said:
Those side effects are typical of MTX. Folic Acid is suppose to reduce the side effetcs, but if not taking properly, they can also reduce the effectiveness of MTX.
Just keep your head up and take it one day at a time and do your best to relax. I know it sounds hard, but the more you “stress out” the worse your condition will more than likely be.
I struggled a lot on Mtx and trying to work. The side effects were too much for me. I was afraid I would lose my job. I was tired all the time and really couldn't function properly in any aspect. It was a relief to go off Mtx and start different meds. I actually had reached a point where I had to just stop taking them. Once I was off Mtx it was about 2 weeks before I started to feel normal again.
Now I've been struggling with work.I'm having a lot of trouble with PsA in my hands and my job entails a lot of use of tools, lifting and carrying items. It's really been taking a toll on me both physically and mentally.
Good news came yesterday when I found out I'm being moved to another department. Almost the same job but with less physical work. This will be such a relief to my hands and I am sure it will result in less pain and issues. Too bad I don't start the new job until September.
You have got the right idea Kellr. Charting what goes on is helpful. Things do get better, it does take time. All on can really do is adapt and change. We do that in life anyway.
I hear you about the MTX. I say I'm SE free, but that isn't exactly true, although anything that does happen (bad) is worth it compared to what I can't do without it.
Understand I'm very analytical, thats what I do (did) for living. So if this seems anal I understand. I take my MTX at 11:30 PM Saturday nights. If I take it ANY other time I am NOT a happy camper. I simply kept track of every side effect that was noticeable without having to think about it. (You can a lot more SE of you you think about em) and caclulate backwards) So nausea (if I get it) usually comes for me about six hours after taking the meds. 11:30 PM Sat Is a perfect time for me to take my MTX. I sleep in until 7:30 on Sundays, I don't workout in the morning as I usually have something going on in the afternoon. I usually go out for Brunch mid morning (depending on church time) etc etc. so I either sleep through the worst of it or have little going on so it effects me very little. Same with the fatigue. I have the worst of it Sunday evening. we are still raising a special needs Grandchild so the Sunday evening routine is still quiet time stuff (Baths reading etc.) I may doze off but its the time for it. I simply work my Enbrel into the schedule similarly.
I'm intrigued with your job though. Can you share anything about the rapidly expanding use in Rheumys office's of sonography?? Its seems a natural for finding enthesis points etc............ More effective injections even???
Thank you Kelly I works shift work (54 hours or 44 hours)on a ship so my job is very physical and I was finding it painful to work. Leaving work for flares in my feet or hands,burning pain in joints from handling lines and doing our regular duties. I hope to be back soon! the plan you have to take the day off after you take your meds is a good one! It’s hard not knowing what the future will bring. I’m new to this site and have found it to be informative and supportive Take care, listen to your body, rest when you can and hopefully the fatigue will eventually get better
I work close to full time. But I also work shift which adds to the fun of this disease. And I have 3 special needs kids at home. It’s hard but right now I’m willing to do just about anything for relief I took my first dose of MTX today. So far so good but I did have a 2 hour nap. (Thank goodness for grandma) I am still hope full I’m gonna kick this thing and enjoy life again. But I am a very one day at a time kinda person. Is there anyway you could go down to part time for a while or is there a better day to take your MTX? I decided on Saturdays even thought I work weekends Sunday is usually a quieter day at work so if I wasent feeling great it would be ok
Hi Kellr - I work full time, commute 2.5 hours a day, and I am a PhD candidate working on my dissertation. My journey towards a PhD started 13 years ago, with an AD in nursing, then BS, then MS, all while working full time, and I am so close to the end, but it feels so far away. I just took my 4th dose of MTX yesterday evening and I have to admit that I have not accomplished a whole lot today. My energy level is a fraction of what it used to be, and I do struggle with trying to keep up, especially with the dissertation. I think acceptance is important, I just keep reminding myself that it is what it is and I am not going to let it get in the way of accomplishing my goals... unless of course it does get in the way, in which case I will just have to re-evaluate and re-prioritize :-). I suspect it doesn't get easier, but like the frog in the boiling pot, we probably don't notice that the water is getting hotter because we are constantly adapting. Hang in there and congratulations on finishing your studies!
Hi lamb, good to hear from you again. In Australia there doesn’t seem to be a lot of communication between rheumatologists and the sonographers but I really think it will eventually head that way… My rheumy was very excited to talk MSK sonography with me when she found out I do musculosketal ultrasound. Too bad the hospital she works in is 1 hour from my practice because I would have loved the idea of working closely with her and her patients to help diagnose enthesis related pathologies. I have to say since learning more about PsA I am a lot more attuned to finding and diagnosing synovitis in patients with similar symptoms to ours. You really have to be looking for it and notice the signs because it isn’t always easy to detect. Having a very experienced MSK sonographer goes a long way in aiding diagnosis because they are on the frontline… If I say it’s normal, the radiologist says its normal, the rheumy says its normal. It’s very important to realise the limitations of diagnosis imaging and identify human error does occur… Ultrasound doesn’t see everything, neither does xray, CT or MRI - please remember that people! The machine does not tell us the diagnosis, it does provides the clues hope that makes sense
tntlamb said:
You have got the right idea Kellr. Charting what goes on is helpful. Things do get better, it does take time. All on can really do is adapt and change. We do that in life anyway.
I hear you about the MTX. I say I’m SE free, but that isn’t exactly true, although anything that does happen (bad) is worth it compared to what I can’t do without it.
Understand I’m very analytical, thats what I do (did) for living. So if this seems anal I understand. I take my MTX at 11:30 PM Saturday nights. If I take it ANY other time I am NOT a happy camper. I simply kept track of every side effect that was noticeable without having to think about it. (You can a lot more SE of you you think about em) and caclulate backwards) So nausea (if I get it) usually comes for me about six hours after taking the meds. 11:30 PM Sat Is a perfect time for me to take my MTX. I sleep in until 7:30 on Sundays, I don’t workout in the morning as I usually have something going on in the afternoon. I usually go out for Brunch mid morning (depending on church time) etc etc. so I either sleep through the worst of it or have little going on so it effects me very little. Same with the fatigue. I have the worst of it Sunday evening. we are still raising a special needs Grandchild so the Sunday evening routine is still quiet time stuff (Baths reading etc.) I may doze off but its the time for it. I simply work my Enbrel into the schedule similarly.
I’m intrigued with your job though. Can you share anything about the rapidly expanding use in Rheumys office’s of sonography?? Its seems a natural for finding enthesis points etc… More effective injections even???
Hi Kellr - I work full time, commute 2.5 hours a day, and I am a PhD candidate working on my dissertation. My journey towards a PhD started 13 years ago, with an AD in nursing, then BS, then MS, all while working full time, and I am so close to the end, but it feels so far away. I just took my 4th dose of MTX yesterday evening and I have to admit that I have not accomplished a whole lot today. My energy level is a fraction of what it used to be, and I do struggle with trying to keep up, especially with the dissertation. I think acceptance is important, I just keep reminding myself that it is what it is and I am not going to let it get in the way of accomplishing my goals… unless of course it does get in the way, in which case I will just have to re-evaluate and re-prioritize :-). I suspect it doesn’t get easier, but like the frog in the boiling pot, we probably don’t notice that the water is getting hotter because we are constantly adapting. Hang in there and congratulations on finishing your studies!
Wow, I couldn’t imagine coping with children right now!! I don’t know how you do it, you’re incredible xox
dakotasun said:
I work close to full time. But I also work shift which adds to the fun of this disease. And I have 3 special needs kids at home. It’s hard but right now I’m willing to do just about anything for relief I took my first dose of MTX today. So far so good but I did have a 2 hour nap. (Thank goodness for grandma) I am still hope full I’m gonna kick this thing and enjoy life again. But I am a very one day at a time kinda person. Is there anyway you could go down to part time for a while or is there a better day to take your MTX? I decided on Saturdays even thought I work weekends Sunday is usually a quieter day at work so if I wasent feeling great it would be ok
That is a fantastic point about taking the Mtx a different day!! I will speak to my rheumy
dakotasun said:
I work close to full time. But I also work shift which adds to the fun of this disease. And I have 3 special needs kids at home. It’s hard but right now I’m willing to do just about anything for relief I took my first dose of MTX today. So far so good but I did have a 2 hour nap. (Thank goodness for grandma) I am still hope full I’m gonna kick this thing and enjoy life again. But I am a very one day at a time kinda person. Is there anyway you could go down to part time for a while or is there a better day to take your MTX? I decided on Saturdays even thought I work weekends Sunday is usually a quieter day at work so if I wasent feeling great it would be ok
P.s great point about getting a routine, I’m going to talk to my rheumy about changing the day I take the Mtx
Kellr84 said:
Hi lamb, good to hear from you again. In Australia there doesn’t seem to be a lot of communication between rheumatologists and the sonographers but I really think it will eventually head that way… My rheumy was very excited to talk MSK sonography with me when she found out I do musculosketal ultrasound. Too bad the hospital she works in is 1 hour from my practice because I would have loved the idea of working closely with her and her patients to help diagnose enthesis related pathologies. I have to say since learning more about PsA I am a lot more attuned to finding and diagnosing synovitis in patients with similar symptoms to ours. You really have to be looking for it and notice the signs because it isn’t always easy to detect. Having a very experienced MSK sonographer goes a long way in aiding diagnosis because they are on the frontline… If I say it’s normal, the radiologist says its normal, the rheumy says its normal. It’s very important to realise the limitations of diagnosis imaging and identify human error does occur… Ultrasound doesn’t see everything, neither does xray, CT or MRI - please remember that people! The machine does not tell us the diagnosis, it does provides the clues hope that makes sense
tntlamb said:
You have got the right idea Kellr. Charting what goes on is helpful. Things do get better, it does take time. All on can really do is adapt and change. We do that in life anyway.
I hear you about the MTX. I say I’m SE free, but that isn’t exactly true, although anything that does happen (bad) is worth it compared to what I can’t do without it.
Understand I’m very analytical, thats what I do (did) for living. So if this seems anal I understand. I take my MTX at 11:30 PM Saturday nights. If I take it ANY other time I am NOT a happy camper. I simply kept track of every side effect that was noticeable without having to think about it. (You can a lot more SE of you you think about em) and caclulate backwards) So nausea (if I get it) usually comes for me about six hours after taking the meds. 11:30 PM Sat Is a perfect time for me to take my MTX. I sleep in until 7:30 on Sundays, I don’t workout in the morning as I usually have something going on in the afternoon. I usually go out for Brunch mid morning (depending on church time) etc etc. so I either sleep through the worst of it or have little going on so it effects me very little. Same with the fatigue. I have the worst of it Sunday evening. we are still raising a special needs Grandchild so the Sunday evening routine is still quiet time stuff (Baths reading etc.) I may doze off but its the time for it. I simply work my Enbrel into the schedule similarly.
I’m intrigued with your job though. Can you share anything about the rapidly expanding use in Rheumys office’s of sonography?? Its seems a natural for finding enthesis points etc… More effective injections even???
I take my MTX on Saturday. Because it does make me drowsy so I choose a day that I can afford to be so. I guess I am fortunate because it only makes me tired so I am able to cope. Some of those days it is really hard to get the energy to do anything, but it is strange, today was my MTX day but I am full of energy but last Saturday I couldn't hardly get myself out of bed, the only thing that got me up and going was the opportunity to spend time with my twin grandbabies! I don't understand these meds but I will say that MTX and Humira have made me so much better that I will take the side effects that come with them. I hope you get to the same point in your life that I am.
It’s so good to hear the meds are working for you!
MAT said:
I take my MTX on Saturday. Because it does make me drowsy so I choose a day that I can afford to be so. I guess I am fortunate because it only makes me tired so I am able to cope. Some of those days it is really hard to get the energy to do anything, but it is strange, today was my MTX day but I am full of energy but last Saturday I couldn’t hardly get myself out of bed, the only thing that got me up and going was the opportunity to spend time with my twin grandbabies! I don’t understand these meds but I will say that MTX and Humira have made me so much better that I will take the side effects that come with them. I hope you get to the same point in your life that I am.
I take my MTX on Saturday night for all the same reasons. Sunday usually ends up to be a lazy day after church because i am very tired and little energy. My 15 minute power nap usually ends up to be a couple of hours. But that is okay. It is now part of my regime and my partner understands totally. With football season starting shortly, my Sunday afternoons will be relaxing and watching football cause that makes me happy. Over the last couple of years I have found the key is to find what works for you and helps you get thru each day. I cannot tell you how all of your insight brings me peace and helps me feel not so alone in this crazy world of PSA. blessings to all of you.
Sonna
MAT said:
I take my MTX on Saturday. Because it does make me drowsy so I choose a day that I can afford to be so. I guess I am fortunate because it only makes me tired so I am able to cope. Some of those days it is really hard to get the energy to do anything, but it is strange, today was my MTX day but I am full of energy but last Saturday I couldn't hardly get myself out of bed, the only thing that got me up and going was the opportunity to spend time with my twin grandbabies! I don't understand these meds but I will say that MTX and Humira have made me so much better that I will take the side effects that come with them. I hope you get to the same point in your life that I am.
Thank you so much everyone, you all have great ideas!! And yes, it feels great to know I am not alone and I am not imagining this extreme tiredness I feel after taking my Mtx. I am hoping the first few doses are the worst and I will def change my Mtx day to a Friday or Saturday night thanks again everyone
I works shift work (54 hours or 44 hours)on a ship so my job is very physical and I was finding it painful to work. Leaving work for flares in my feet or hands,burning pain in joints from handling lines and doing our regular duties. I hope to be back soon! the plan you have to take the day off after you take your meds is a good one! It’s hard not knowing what the future will bring. I’m new to this site and have found it to be informative and supportive