Well, I'm about to take my 4th injection tomorrow. This entire week I have had a headache, pressure in my head and slight nausea. I know this is a normal reaction for many, but how to get through this while my body adjusts to the new medication?? I slept all day Saturday and just laid around yesterday. Today I am up, but oh this headache!
Popped 2 Tylenol, not drinking wine at all until this stops, and limiting caffiene to one cup of coffee per day. Any other advice?
What stinky side effects. I took Enbrel for quite a while but I never got any adverse reactions at all. Has your doctor suggested anything? I know when I was on Enbrel they (Amgen) were always calling me to check in. You could always talk to one of their nurses, too. Hope you feel better soon.
I've divorced my Rheumy...have appt with new Rhuemy in December....
I did forget about that nurse line, thanks for reminding me, they are super nice so will call if this continues!
Isn't it strange that rheumatologists are the ones within whose area of expertise PsA falls. Yet it seems many of them either don't understand the disease or don't believe it exists in their patients. I wonder if this is because of a lack of education or because PsA can't be diagnosed dispositively with a blood test. Hope you find yourself a knowledgeable and caring rheumatologist.
Kestrel said:
I've divorced my Rheumy...have appt with new Rhuemy in December....
I did forget about that nurse line, thanks for reminding me, they are super nice so will call if this continues!
I agree! They don’t really seem to understand it, and treat it like RA.
So my 6th injection was yesterday…I don’t feel so great today, I have some achy joints which I haven’t had over the last 5 weeks. Is that normal? Also I have a bruise at the injection site…I’ve not had that before 
And RA is so well controlled and the patients so pain free. Same with OA, the 2 other 200 kinds of arthritis, Fibromyalgia, AS, and other assorted rheumatic diseases. I hate to deliver a reality pill so early in the morning but PsA along with another 123 seronegative spondyloarthropathy is an incurable progressive disease that has two classes of drugs outside of NSAIDS, and steroids that treat it. Of those medications the three that have the most success are MTX (peripheral symptoms) and, Humira, and Enbrel (axial symptoms.) (The other biologics are not far behind)
The success rate of the best is slightly over 50%. None of these drugs are expected to have any effect on the disease for at least 4 months after starting treatment. Combinations of the biologic and DMARD drugs have a higher chance of success but but each change takes again four months to know the outcome.
If you just deal with SSZ, MTX, Huimira, and Enbrel, you have 16 combinations at 4 months each, it could take 5 YEARS to exhaust the possibilities (including triple therapy) Foertunatly It doesn't take most rheumys who see in tthe neighborhood of 150 patients near that long. Depite the fact it could take as long as 90 years to exhaust the combinations of drugs that may work. Fortuntly because there is some skill involved here, it takes somewhat less than 3 years to bring 90% of PsA patients into a managable condition. That is assuming they avoid narcotics. The use of narcotic pain managemnet during the process so significantly lowers the off of treatment success that ever growing numbers of Rheumatologists won't prescribe it period nor will they refer out for pain managment until the feel confident it is the only option because they are out of others
WEhat is it they don't understand
I appreciate your knowledge, I wont go into what my Rheumy did or did not understand, as it's mute at this point as both my neighbor and myself have transferred our records to a new Dr. I lost faith in her ability to treat me, and in her ability to even show that she cared for me as a patient instead of what was in my wallet. Never have I been treated in such a way as this Dr and staff has treated me...and I gave her two years to redeem herself.
I was told by her nurse that Enbrel was to be my life changing drug, and that I'd see improvement in three to four weeks...4 months was never even mentioned. So, please excuse me if they set my expectations a little high.
I'm not saying there aren't bad doctors, I've canned more than a few myself. Don't get that from what I said. But they DO understand the disease. No one should put up a Doc they don't want.
But that aside if you are having an enbrel hangover 6 weeks into this thing, thats WONDERFUL NEWS (unless of course you have the headache. MOST of the time that is because you are dehydrated. 96 oz of water is the minimum you need at this point. You are losing it fast as the meds are doing their little protein binding dance which is what we are after. You blood levels will go to hell next and make you exhausted as the water has to come from somewhere.
The bruise is just bad luck, the enbrel needles are so small its pretty hard to hit a blood vessel, but it happens.... (happens more with the auto injectors)
In any even unless you keep a detailed log, its pretty hard to KNOW if the drug is working. The change is pretty subtle. I didn't know it was working for me until my wife mentioned she hadn't heard me swear tying my shoes in a while.... There are a lot of pain apps out there, I don't use em' as it creates negativity. But really the one thing the docs look at the most is how long your morning stiffness lasts. There are number of others using scoring system (you fill it out in the waiting room. It then goes into a rather complicated formula t(they don't just add up the numbers) If you are expecting to wake up some morning feeling notably good/ better.
The other thing I will tell you now is to remove as much emotion from your chronic disease as you can. It becomes "business" like balancing your checkbook. The docs treat that way (some hide it better than others but they all do) you should too. Its hard for a scientist to "trust" anything subjective.
Your 5 may be some one elses 2. If it stays a 5, hes not to concerned until it becomes a 6. He is dealing in change, so should you. Its hard but its one of the things we need/must do or the disease will consume us. We also need focus on function before pain. If you want a docs attention, saying I have "achey joints" means nothing saying "I have trouble with buttons, I didn't before" will get response.
I concur with the dehydrahation adding to the headaches. Found the more I drank before and through the night and next day stopped the headaches from settling in. I always had the Enbrel hangover the next day. Eventually I just slept in 1/2 the day.
Also you are right about finding a doctor who understands PSA. I drive around 1 1/2 hrs to see me guy. Usually wait anywhere from 2-4 hours. But when it’s my time he spends whatever time is needed.
Enbrel and other similar biologics are notorious for headaches. More specifically, they can make migraines significantly worse. The nausea may be diseases related. Sadly, it’s quite common for your disease to flare up in response to new medication. It take approximately four months to see results. Surprisingly, even partial reduction in disease activity may translate into clinical remission a year or two down the road.
As far as water is concerned, you should drink enough to keep your urine semi clear. The exact amount of water may vary each day. The best time to drink water is 90 minutes before and after a meal. Also, small frequent meals should also help retain your water. Well, I hope you feel better soon!
Thanks mataribot and candi…I will start chugging the water on Enbrel day and see if it helps. Tilt lamb it’s encouraging to hear that the headache is a sign that it’s working. I have felt better since taking Enbrel, so when moving got harder this week I lost hope that maybe it was no longer working.
I can’t wait to see this new Dr, my friend really likes her and I’m looking forward to having a Dr that will return my calls when I really need some answers.