Ugh, Golfnut. Asthma? Do they think it may have been brought on by Enbrel?
And your daughter … clots are very worrying, aren’t they. I had a post-op pulmonary embolism at 27, and it was awful. But on the other hand, I recovered and I’m still here almost four decades later. My fingers are crossed for her, and for you, of course.
Hi seenie
Yes they think enbrel caused asthma although that seems contrary to everything I have read on enbrel - it is supposed to help asthma!
Just hoping that the injections and new blood thinners do their job - very frustrating to find out after 3 months that the treatment hasn’t worked at all
Just left Psa clinic and I have been injected with humira and given a spare dose for 2 weeks time. Inflammation is the worst in a long time so everything crossed for some relief. I love the Psa clinic!!
I hope that the humira works better for you with no side effects!
Thanks goofy pirate - I have everything crossed! Psa clinic was just fab - they ultrasounded me allover which was fun. My feet are so inflamed I can barely walk so it was super-painful to get there today but so worth the effort. Was hoping for steroid injections in the short-term but they said they would have to do so many it wouldn’t make sense.
Seems like lots of new people here - which is good and bad! Great to share things and get support when you need it, but sorry for anybody trying to find good treatment. On a positive note I was talking to a nurse at er room last week. She had psa and was on enbrel. Had to come off for breast cancer treatment but enbrel has put her into complete remission! How good is that?
Well 2nd humira injection done - the spare dose the psa clinic gave me was only good for 14 days so rather than risk leaving it until tomoro I just took it a day early. Doesn’t sting at all - can’t say I’ve noticed any difference yet apart from being more tired than ever over the last two weeks. I am sleeping all night and then at least another 2 hours in the day. Maybe the summer will bring a bit more energy.
Still no word of approval from insurance company despite their promise that I would be fast-tracked as I was already approved for enbrel. Hoping they will get their act together so that I will have it when next dose is due. Fingers still crossed for some relief as back started killing me yesterday even though I’ve never had any back problems - lots of people seem to notice something with humira after 2 or 3 injections so I’m really hopeful…
Fingers crossed, Golfnut! At least you didn't get a big negative reaction like you did with Enbrel. Onward and upward!
Keep in mind that if your insurance doesn't follow through, Progress (Humira patient support) will sometimes provide some compassionate doses. I had two while I waited for Trillium to approve the exceptional access. Keep the clinic in the loop, as they would be the ones to approach Progress if your insurance drags its little administrative feet.
Here's hoping it's smooth sailing now.
Wishing you better luck with Humira, Golfnut!
Good luck Golfnut! Seenie made a great point, in that your body didn’t reject it, which is good sign. Have you done any more toe joint injections since the first round? I have an appointment tomorrow and plan on them again (we were both getting them around the same time before). I feel like mine have worn completely out but am a little nervous about doing them again so soon. Any options on that? I could use the advice if you have time.
Yes I am happy that I seem to be tolerating the humira although no benefit - trying to remain optimistic but in the midst of yet another flare - all down my right hand side from shoulders to knees.
I am dying to get more injections done - PSA clinic said it would require too many to be worthwhile - but Seenie knows the Doc I saw (before Dr Chandran) and he wasnt the best - poor people skills. I am seeing my local rheumy in April and I know he will do the injections - in fact I am going to pick up the prescription before I see him. Honestly that is the only time in nearly 2 years that I have had little pain in my feet so I feel its worth it. My last ones were done towards end of October and I only had a half dose so I have no worries at all about having it done. Im personally thinking every 3-4 months is ok for me. Yup mine have completely worn out too - am jealous of you getting it done tomorrow althoiugh not the pain of the actual injection - omg the worst thing ever!!!
Thanks Aspyn and Seenie
Spoke to progresso yesterday and they will send me 2 free doses if insurance company doesn't get into gear - she confirms they are behind by about 3-4 weeks currently so not likely to process in time....
Good news! Sure hope you get relief from your flare soon. I have been in one myself for couple weeks, even missed 2 days work, now they’re making me pay for it with OT? I swear our management doesn’t make any sense! Anyway I am excited that you said that I just want the injections to work soooo good again. Yes, super pain but worth it! Wish me luck this is the first time I have done them when having to work the following day, a little nervous about that. My first round I felt like I had new feet the next day and the swelling gone they looked so normal, but last time they hurt the second day. I am also going to ask about increasing my humira tomorrow. Working but wears off quickly and flare etc. Hopefully she will I am not ready to give up on it but its not enough by itself for me. You are so lucky to have Seenie be able to direct you to some great doctors I love my primary but my rheumy is just OK.
Omg Rachael - your job sounds like a killer! Really don’t know how you do it. They clearly don’t seem to have any understanding of psa - shouldn’t surprise me really as I can’t even get my hubby and daughters to understand. Thankfully I’m not working at the moment as honestly would struggle with flares every 3-4 weeks.
I do wish you luck - make sure they inject some local anaesthetic with the steroids - my rheumy only remembered to do this with my second foot - the first foot was super hurty for a couple of days.
From what I’ve read lots of people have more regular injections of humira so hopefully that won’t be a problem. Especially as you feel it is working for you - have you tried any of the others?
I am soooo lucky to have ‘met’ seenie and followed her advice to see the psa clinic. My family doc is great too. My local rheumy who had jra is pretty crap to say the least. If I had to rely just on him for anything I’d be in a real pickle…
What a sad day. Went to work an hour early, 6am start, so I could go to my appt only to have it cancelled. Arg, now have to wait for the 30th not to mention it took a month to get it. Oh well, I know it could be worse. Yes, my employer doesn’t have much sympathy, I even had to work my full normal shift so ended up OT anyway. Good advice about the numbing agent I swear she didn’t use it last time , lol.
Oh no that’s not great - try to keep your spirits up. One thing I noticed with psa is that you really need to develop patience as they send you off with one drug after another to try for 3 months! Yes I think sometimes they forget the numbing stuff - after my injection the first thing I’m going to check is that they’ve got that stuff in the needle!!! Oh the joy of waking up though and your feet not hurting - roll on march 30th
Well after weeks of what seems like doom and gloom I’m here to share some good news! Yesterday was the worst I’ve felt in a long time - in a flare, running a temp, lymph nodes swollen and dog-tired. I was cursing the humira - bad enough aching all over without adding more bloody things in. Anyway around 10.30 this morning, I literally felt everything slowly lifting. My hips, knees and elbow weren’t quite so sore - I had some energy (today is the first day in a long time that I didn’t have a nap). As the day has gone on my feet are less painful - truly a miracle as I have had the same pain for nearly 2 years in these feet. I’m reluctant just yet to give the credit to humira - we all know how fickle this stupid psa is - never wanting to show up for a rheumy appointment!! It has however encouraged me to continue on with the injections in the hope that this might give me some improvement. Oh and also did lots of packing while things were good, as moving to a new house in 2 weeks.
Great to hear, Golfnut!
Fantastic news, Golfnut, but do pace yourself and don't overdo it on account of feeling a little bit better. Way to go yet.
Awesome! Humira or not a good day is good day!! The lifting of fatigue is what I attribute most to knowing it’s working even on sore days. My husband says he can tell just by looking at my eyes compared to prehumira days. I sure hope things continue on such a great path for you. I do agree with Jules on pacing yourself with moving because there is always so much to do. Hope you like your new place!
Something is amazing! Is it the PsA (the way it suddenly leaves town)? Is it Humira? Or is it you, Golfnut?
Does it matter? Not at all. Wonderful that you're feeling well, and long may it last! And now the hardest part: you need to pace yourself very, very carefully. Don't be hopping about like the Easter bunny.
