This has been an off week for me.
Last Sundays injection didn't do a thing! Besides the fact it was a very painful injection, my pain and "umcomfortableness" is still in full swing. It also doesn't help that I haven't had one good night sleep this week, even with Amatrip. Maybe it's a flare, maybe it's an off week. I hope these words make sense. Another injection coming up on Sunday. Hopefully I'll feel better next week.
How are you feeling today?
How many weeks have you been on Enbrel, Amielynn? For me, the response was gradual, and improvements didn’t necessarily follow the timing of the injections. I noticed small changes gradually, but didn’t see the full effect until at least three months.
Seenie, It's been a year. I really think this was an off week or an off injection. The injection was very painful, more then usual, so I am assuming it didn't absorb properly. We will see how Sunday goes.
Lack of sleep definitely makes everything worse. So are you one of those people who usually feel better straight after your shot? It's not like that for me as far as I can tell, it's the overall picture that's better and the fluctuations don't follow any perceivable pattern.
Sounds like a vicious cycle ... the PsA's disturbing sleep, lack of sleep may be exacerbating PsA pain. I wish I had some handy tips for breaking that cycle. Wonder if your rheumy might have anything up their sleeve?
Normally I feel better on day 2 after an injection. It noticeable. Then it tapers down for the rest of the week. The lack of sleep is due to pain at night. My right knee is acting up. I can only lay in one position, thus making my left side hurt from immobility. Mostly tossing and turning. I know the lack of sleep is making the daytime pain worse, but I'll have to find the magic button to make things better.
So if this continues and the pain is mainly localised, maybe a steroid shot?
amielynn38 said:
Normally I feel better on day 2 after an injection. It noticeable. Then it tapers down for the rest of the week. The lack of sleep is due to pain at night. My right knee is acting up. I can only lay in one position, thus making my left side hurt from immobility. Mostly tossing and turning. I know the lack of sleep is making the daytime pain worse, but I'll have to find the magic button to make things better.
Maybe so.
..... and meanwhile major attention to that knee ... heat? Or ice? Or both! Pillow under it ... stretching if it helps .... I know you know all this but if I was exhausted and in serious pain I might just forget to do the obvious. Though you are usually on top of things I think.
amielynn38 said:
Maybe so.
I wonder if it could be an off injection/injector. I've had two like that with Humira--injected like I normally do, waited for the nearly immediate benefits which improve for the next day, then spent the next 10 days wondering where the heck anything was and found them with the next injection.
I talked to Dr. Abbas about it; since everything else was going well (after the next injection), he thought it was likely an off injection.
I'm pretty certain I've had an off injection too, with Simponi. The company that used to supply it consistently provided syringes that had pretty short expiry dates. The last one from them expired at the end of that same month, it gave me no benefit at all and it was the first time I'd ever had an injection site reaction too.
In fact, I think I might have posted here to ask if short expiry dates were the norm with Simponi .... I now know they aren't. My new delivery company is providing syringes with expiry dates 6+ months hence.
So I think it can happen. Maybe the expiry date is approaching so it's losing its efficacy or maybe there has been a glitch in the temperature controlled storage which has rendered it ineffective. On the plus side Amielynn, you only have to wait a week for the next one. Hope you can manage the pain 'til then ... I totally sympathise with the being unable to sleep as my throbbing heel kept me awake most of last night.
Sybil, Yep. Ice and heating pads. Pillow under and around the knee. Even short walks. Extra pain meds. Today's injection day!
Sixcat, my rhemuy also agrees with the off injection. He said sometimes you get a bad one. There's no way to know why or how. Just like sometimes the needles isn't super sharp.
Jules, I did sleep better last night. Took a hot bath and packed my knee with ice. Took a sleep aid. It really helped. I feel a bit better. Today's injection day. We will see how it goes. I am going to check the expiration dates on the box. If anything, I have an extra box of shots. I'll switch to those injections.
My daughter who worked in a dermatology clinic offered to give me some free Enbrel that was to be thrown out because it had expired. I had told her to go ahead and throw it out.....now I'm glad I didn't take it. She said typically the med is okay for awhile after the expiration date, but I didn't want to take any chances.
Blimey, it's one thing if we don't keep the injections correctly, quite another if some are just duds, considering the cost.
I am a stickler for expiration dates. My hubs is a pharmacists and does agree that some meds are good well past the expiration date.... I still don't take them.
Concerning the cost, yes, it happens but not often.
I am too, with everything I buy....at the grocery store I always check dates and pick the best date on everything--especially milk, because it takes us more than a week to finish a half-gallon of it!
Hi, amielynn! Sure hope the next shot brings you the releif your hoping for. I started checking the dates on my humira right after Jules post. So far all good but I have had no change after this week’s shot myself. I do have continual toe joint swelling that no bio has touched yet and does seem a little worse these last few weeks. Trying to determine if I am worse because bio is starting to fail or if I am just more affected by PSA and humira is doing the best it can with what it has to work with. I just seem to expect the unusual these days but like you hoping for the best. Pain meds and unrealistic expectations are not how I want my life to be lived either but we have to stay positive because there are great people here who have proven perseverance leads to good things! Hope this helps a little, you’re not alone, chin up we’ll get there.
Grandma J, what is it with grocery stores lately? If I didn’t check the date on everything I could easily fill my fridge and cupboards with spoiled food. After a few terrible returns I have learned my lesson, lol!
Rachael,
I also checked my enbrel shots. They were fine. Today I woke stiff and in pain. I'll give it another week, then I'll make an appointment. I don't like making a fuss over seasonal pain. Most times if I wait a week or two it's a good indicator of seasonal versus something else. Hope you find some relief with your toe. Sometimes you have to take the pain meds. I have a 5 year old son, on bad days if I don't take the pain meds I can't take care of him. It's only one day. Just go day by day.
Thank! I am the same way, if it doesn’t last a week or more I never worry. Boys that age are a handful! I can’t imagine raising mine with PSA but the good news is it does get easier. I gave Enbrel a good 3 1/2 months to be sure before switching. That way I was sure my results were not just a controlled flare. Good luck hope it works out, it has been a real game changer for so many!
I wanted to update everyone:
After two weeks I am back to "normal". It must have been a off injection. The date was fine, so I am assuming my body didn't absorb it properly or the medication was a dud. Things are good here. I just went out and did some much needed yard work. I feel horrible now, but it was worth it.
That's such good news, amielynn! Hopefully, it's the beginning of long-lasting success with Enbrel. I get a little nervous when my fingers get stiff, or my back and legs hurt more than usual, but lately when that gets to be a problem I take an ibuprofen and it really helps. I do know that it feels good to be busy with my job or housework or activities with our grandkids. I don't do well with being lazy or idle. It can be tiring being in motion so much of the time, but it's tiring getting stiff and painful from sitting too much, also!
Yard work is pretty strenuous, so next time pace yourself-it sure is easy to overdo it when you're feeling better than you have in a long while. The first 8 weeks of being on Enbrel was the best I had felt in years. I still feel okay, but with bad feet and a bad back, there's always some pain. Sometimes I think we get so used to having pain we are able to ignore it.
Rachael, I was looking at the juice on the refrigerator shelf at the grocery story mumbling to myself about all the expired dates--until I realized 3/09/16 is in the future--I've got my March trip to Georgia on my mind so much I was in March and not January! Weird, huh?!