Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Yep, I know, I know....;)
I've done a million Google searches, done my research, etc etc but sometimes you just need that special little personal touch you can get from a great group of people like you all to prove you ain't just going crazy!
I started MTX injections finally. When I was on oral, the doc had me on 17.5 mg. Then he changed me to injections. The first one was at 17.5 then he jumped me straight to 25 mg (1 ML) per week. Now also....I only started MTX November 10, 2015 with 1 pill....then the next week 2 and so on until I was up 7 a day because of my gastric bypass.
I do my injections on Tuesday mornings and feel great all day and then Wednesday (or Hell Day as I call it comes) and I feel like I been hit by a Mack truck. The last 2 times were the worst. I'm thinking maybe my body is finally absorbing every little last bit at that high dose. Boy our bodies are weird. This morning I just lie in bed, nauseous, not wanting to get up not not being able to sleep either. I get up Monday-Friday at 4:45 (Thank God I work from home) I actually opened the box I had bought weeks ago of Ginger tea I had not really needed until now. YUCK! GROSS! So I ransacked the pantry and found me good old saltines. Yes, somewhat helped. Then I said, "screw it" where's my black tea....felt much better after that.
I can't even describe the feeling. I'm sure many of you "get it". It's fatigue, but it's not...it's more. I feel like a complete zombie, oh and yeah, how about the run to the toilet for the first half of the morning? My job has me dealing with customers on the phone so I have to put on my pretend happy, life is great voice. Not easy when I want to sit at my computer and stare at it thoughtless all day. The brain is lagging....and that's even with my ADHD meds. Then I start to go into panic attack mode because I start feeling like I can't breathe, heart starts racing...but I know I can and out comes the Xanax. Then the new thing....dizziness. Never had that before. But again, I'm only on my second injection of 1 ML.
If I were a cell phone.....someone forgot to plug me in last night. When I walk through the house it's like this huge fog. I am drained. It's now almost 9:45 AM and I just had breakfast so I am stating to feel better tummy wise. My motivation? What motivation? Talk about crashing! I'm a complete mess but yet I know as the day goes on I will slowly come out of the funk. They ain't kidding when they call it the Meth Hang over. I feel like I am completely under water and trying to walk, talk and think. I have animals to deal with, work to do, laundry to put away, dinner to cook, grocery shopping and have to find a good time to run a dog by the vet today to look at and pick up prescriptions for me.
But give me hell day one day a week over the RA and I'm good with that because all in all I do feel better as far as the RA goes.
But the weird thing is come Thursday and I am 100% again. Yeah, good days and bad days but not Meth Hangover day.
I know the oral side effects went away in 2 weeks....anyone on injections and it's just part of life? Or do they eventually dissipate with time? I guess that depends on the individual and and their body.
Just tell me I'm not a hypochondriac. This is all how I feel today. :)
I've done a million Google searches, done my research, etc etc but sometimes you just need that special little personal touch you can get from a great group of people like you all to prove you ain't just going crazy!
I started MTX injections finally. When I was on oral, the doc had me on 17.5 mg. Then he changed me to injections. The first one was at 17.5 then he jumped me straight to 25 mg (1 ML) per week. Now also....I only started MTX November 10, 2015 with 1 pill....then the next week 2 and so on until I was up 7 a day because of my gastric bypass.
I do my injections on Tuesday mornings and feel great all day and then Wednesday (or Hell Day as I call it comes) and I feel like I been hit by a Mack truck. The last 2 times were the worst. I'm thinking maybe my body is finally absorbing every little last bit at that high dose. Boy our bodies are weird. This morning I just lie in bed, nauseous, not wanting to get up not not being able to sleep either. I get up Monday-Friday at 4:45 (Thank God I work from home) I actually opened the box I had bought weeks ago of Ginger tea I had not really needed until now. YUCK! GROSS! So I ransacked the pantry and found me good old saltines. Yes, somewhat helped. Then I said, "screw it" where's my black tea....felt much better after that.
I can't even describe the feeling. I'm sure many of you "get it". It's fatigue, but it's not...it's more. I feel like a complete zombie, oh and yeah, how about the run to the toilet for the first half of the morning? My job has me dealing with customers on the phone so I have to put on my pretend happy, life is great voice. Not easy when I want to sit at my computer and stare at it thoughtless all day. The brain is lagging....and that's even with my ADHD meds. Then I start to go into panic attack mode because I start feeling like I can't breathe, heart starts racing...but I know I can and out comes the Xanax. Then the new thing....dizziness. Never had that before. But again, I'm only on my second injection of 1 ML.
If I were a cell phone.....someone forgot to plug me in last night. When I walk through the house it's like this huge fog. I am drained. It's now almost 9:45 AM and I just had breakfast so I am stating to feel better tummy wise. My motivation? What motivation? Talk about crashing! I'm a complete mess but yet I know as the day goes on I will slowly come out of the funk. They ain't kidding when they call it the Meth Hang over. I feel like I am completely under water and trying to walk, talk and think. I have animals to deal with, work to do, laundry to put away, dinner to cook, grocery shopping and have to find a good time to run a dog by the vet today to look at and pick up prescriptions for me.
But give me hell day one day a week over the RA and I'm good with that because all in all I do feel better as far as the RA goes.
But the weird thing is come Thursday and I am 100% again. Yeah, good days and bad days but not Meth Hangover day.
I know the oral side effects went away in 2 weeks....anyone on injections and it's just part of life? Or do they eventually dissipate with time? I guess that depends on the individual and and their body.
Just tell me I'm not a hypochondriac. This is all how I feel today. :)
So I'd suggest you call your doc and ask to lower the dose back to the 17.5 you regularly get as by injection you'll get more anyhow(same dose I take). No point in taking a drug that makes you feel that bad and he can't know how badly you are feeling unless you tell him. So call! I doubt he put it that high for a reason so he'll probably gladly lower it.
Call!
hugs...........Jen
Jen
So here we are....the conundrum.....at about 11:15 I started to feel "normal" again. It seems the side effects hit 10-12 hours after the ejection and last until 11-12 the next day.
My RA is in the "severe" category so maybe that's why the high dose.
Unless my body adjusts. My doctor is on Vacation until April. The only answers I get is "Go to urgent care" and I am not spending 8 hours in that mess to be told "that's all normal" lol
The whole point of MTX is not just to slow down cell division....why it's used for cancer....slows it down....but it also affects purine metabolism and that affects Ra directly(don't ask me to explain...I'm not sure I got it all). So MTX is not just used for the same effect it has on cancer cells...it actually works on Ra itself.
I used to have major problems with diarrhea 36 hours after my injection.....have for years....but recently found a different way to deal with it. Instead of taking it at bedtime(as it makes me tired) I take it in the AM and then keep eating all day and that seems to stop that diarrhea. Maybe has something to do with taking the shot at bedtime and not eating for 10-12 hours and it affects the intestines...maybe?????? But I don't get the diarrhea if I eat all day after my shot.
Here's the thing. We all have some problems with our meds but we each have to use trial and error to figure out how to modify the bad reactions we get. You felt like you'd been hit by a truck but yet, it went away pretty fast. Can you deal with that? Can you consider changing your shot day to a Saturday so you are feeling badly when others can help you and you aren't working? When I was working full time, the weekends were my busiest time so I did it on Monday and took Tuesdays off. The only thing you have to take into account is that the best reading of your blood work on MTX is when the blood is drawn on the 5th day after your injection.
If you think you can handle it, get the license plate number of the truck and lay low until it goes away and hope your Ra really responds.
gentle hugs......................Jen
PS....I'm considered severe too as I have internal organ involvement. There actually are a listings as to what constitutes mild, moderate and severe Ra. Bet RA Sally knows where to find that list!
When I was working I would take mine on Sunday as I was off work Sunday and Monday. The ultimate fatigue and brain fog would hit me on Monday and last through the middle of Tuesday before starting to wane. During that 36 hour period I was just a zombie. But the worst part of it is that I can't nap during the day like I do the rest of the time.
One day 6 months ago it hit me - I was going through this MTX phase on Mondays and Tuesdays when there were times that we wanted to do something or go somewhere. We never go anywhere on the weekends to avoid people as much as possible. So I changed to taking the MTX on Fridays now so I can do my zombie thing on Saturday and Sunday.
It is what it is.....there have been so many things in life that I've had to make adjustments with and this is just another.
Does make sense to see if reducing the dose helps with side effects..as long as it provides relief. Couple attempts of MTX but spent to many days off my feet. Pill form my dr never once mentioned injection form.
Hope he's a good dr. Have to admit it would upset me to have no answers but urgent care. Interesting to see what a place like urgent care would recommend in a case like this. Depends on just how bothersome you find it I suppose.
Good luck, sammy
Jen......Oh yeah, that is a BIG 10-4. It is worth it. I started feeling better then fatigue and zombieland hit later again. Luckily I was able to take my dog to have vet look at her real quick then get prescriptions picked up.
My house is a mess and laundry all over because of how I been feeling. STRESS. It's amazing how that can affect you and make it worse.
I thought about changing the day....but I am fortunate to work at home and I am still active on the weekends. I am still active after 5 when the time changes because I will not give up riding.What kills me the most are those planned group rides I wake up at 5 AM for and have to hustle. But we make our choices and live with them. My horses are my therapy and medication on the bad days too.
Coaltrain...so true. It's all about adjustments. I almost thought about changing injections to Thursday so my Friday would be bad but then I worry about the crash leaking into my Saturday. So I figured Weds are the best.
Sammy....I agree about the urgent care thing. It sucks, I have an HMO and don't have many options where I live as far as the medical groups. Mine happens to suck! My husband is not going to like the idea but when our health insurance renews I may just go back to our old Medical group when we lived in another area if I am able to. I liked that group and there are many RA Docs to choose from and the whole group was better all around. It's 45 minutes there and back and he hates when I am not in the office. Being self employed means a missed call is missed money but what good is money if you don't have your health?
I am hoping the side effects dissipate with each injection like they did with oral. All in all this may/is the better route. Now it makes me wonder how much MTX was getting absorbed into my body (due to the gastric bypass) and maybe that's why the 25 mg injections really hit hard. I was up to 17.5 with the pills. Hoping they taper off.
I just read a blog written by a women who was put on 20 mg injections and had to go off it for a month due to catching the flu. When the flu was gone she went right back to the 20 mg shot and it hit her like a mack truck. Doctor suspected she should have started half the does. It was written with comedic flare. I totally got it.
Yesterday was a "barely a MTX Hangover Day" I am really surprised.
I am wondering if it's because I ate...and ate....and ate.
Tuesday (Injection day) I had a meeting that was a potluck. The host made tasty oven roasted chicken thighs and I actually went back for a second one. Then I ate half a brownie which I NEVER do.
Weds. I woke up so hungry I had a 3 egg cheese omelette....then at lunch I had to pick up my dog at the groomer and grabbed a Chicken thigh, leg and a side of beans at El Pollo loco. Had husband come in early because we had to drive to look at a car 2 hours away. Shared a few Dorito's on the way. Finally stopped at about 9 PM and had a grilled cheese sandwich before heading back on the 2 hour ride home. Got into bed at 11:15 PM (keep in mind I been up since 4:45 AM) I knew the night before we were doing this and I was dreading it due to last weeks MTX day after.
I actually feel really good (2 cups of tea and a Vyvanse later) today. But this morning I was very tired and Grrr...and he says to me, "It was only 2 hours later than you normally go to bed."
On the way to work while talking to him on the phone he was saying how exhausted he was. REALLY? I teased him (he does it to me). I got your tired buddy! lol
So maybe the connection to a non-MTX hangover is PROTEIN? Just a thought.
But I KNOW I will crash. It's coming. This Saturday we will be out all day. Then Sunday (daylight Savings) when we lose an hour I have to wake up early for a group ride.......so I know for a certainty Sunday I will be exhausted....and his exhausted is not the same as OUR (RA) exhausted.
So eventually, my liver sac was hurting all the time, and I had some really ugly mouth sores, that my family doctor thought was cancer. They went away quickly after I had to stop mthx.
I agree for me, how the drug worked was what counted. I really fought to stay on it for years when my liver enzymes were saying I needed to go off, because it worked so well with Kineret. Those were the days.
Strong dislike of the med for ADHD but it helped more then I can say.
Enough to put me at the top of my class & I quickly understood how my daughter felt about taking medication.
I tuck what you've shared away for the future just in case.....
Not sure how you feel but IMO having both ADHD & RA can be challenging & often feels like the two combined is a cruel joke.
Then again I'm not on medication so it may have made a difference.
I do thank you for sharing....Never hurts to have that food for thought.
Speaking of food can't hurt to try adding that protein to see if your on to something.
You made an excellent point about doctors, insurance & work.
Preventative measures are important. Better to miss work to deal with preventing problems then waiting for those problems to prevent work.
Sammy
When I started to research how amphetamines blocked pain signals to the brain, the light bulb went off in my brain. I had tried Vicodin but did not like the "high" but I liked the Vyvanse because it did help with the fatigue A LOT. But now I realize the RA brain fog is back but now I'm not fatigued everyday....just a day or 2 after my MTX injection. Even Vyvanse does nothing for that. It's like hitting a brick wall. My husband suggested medical Marijuana but I wouldn't due to the whole lung issue and that's another "high" I don't like. I just don't like being "high" or feeling weird. I drink a glass of wine on weekends and I am starting to not like that either. I think my anxiety has got so bad due to the RA (worry to the point of panic) I live on Xanax. MTX and Xanax with a side of Vyvanse...and I feel "normal" like in the old days.
Also Sammy....I am self employed and run an office 8:30-5 PM...answer phones and deal with the public. When I would go into panic mode I was a complete idiot on the phone. I can barely talk to anyone and would want to crawl under my desk. I do everything from making/taking calls, dealing with manufacturers, billing issues, taxes (as in IRS 940 and 941), accounting and in between run a household...laundry, dishes, cooking.....(unless I'm having a really bad flare) oh and before I even start work I am out there feeding goats and horses and cleaning stalls......so I take my first dose of Vyvanse at 7 AM so I am out there by 7:30.....then the second dose at 1:00 before I go out and let the horses out of their stalls and water them again.
I guess you can say staying active is a good thing for the RA. I can definitely say the injections are way better than oral. It has helped a lot.
Actually would run over to his home still wearing PJs in the morning when problems occurred. Not leaving me the option of sitting idle.
Stressful but in some bizzaire way it kept me going & out of the house.
I know I was exhausted & playing Russian roulette with my health. Yet I've found the pain can go up if I'm not active enough & the restlessness is setting in. Lord knows my grandson is a handful but I simply became used to it all. You know darned if you do darned if you don't.
Although girl I'd end up with the phone in the washer & the horse in the house LOL. No way could I manage what you pull off. Bless you.
I'm much like you don't like the feeling certain meds can cause.
Went through that with Adderall (sp?). It did wonders for me through school. I could remain focused & sit still long enough to not drive everyone else crazy. Little things did not distract me. Put me at the top of my class....yet I felt hyper focused to the point any disruptions would make me angry. Hard to describe.
Now I simply feel restless even when I'm exhausted. To strange....
I'm the same on the phone. Hate the phone. Can't seem to string a sentence together to answer or ask a question. Feel like a complete air head. I'll actually write down as much as I can pertaining to the call.
totally get what your saying.
Glad the injections work better for you & hope you do find something that relieves that after effects of the MTX. Sure sounds like you've got enough to juggle. Although staying active helps be careful my friend not to get in over your head. Sounds like your almost there. Worries me that you have the need for Xanax to that point. With that said I get the anxiety lord knows. Just be careful. For me the body cannot keep up with this over active mind & when put to the test it does create a lot of anxiety. Your life really keeps you going. Remember to proceed with caution. You won't be completing much if you don't do what's best for yourself in the long run.
Hugs
Sammy