Just got back from my Dr and while we were looking at my daily journal it shows 4 major flares during the 4 weeks that I have used Enbrel.
Now it is possible that I would have flared like that Enbrel or not since I had 1 major flare prior to starting it but just wanted to see if anyone had more and worse flares after starting Enbrel. She is not too happy about it and I go back in 2 weeks to see if this pattern remains.
If I have a major flare it would last at least 4 months. So I don't quite understand what you are saying.
Could you describe in a little more detail? For example, I would inject my enbrel and about 3 hours later a headache would begin. The headache lasted close to 24 hours. Tylenol didn't help at all. The headache became less severe over time but the still stayed about 24 hours.
Bonny--Everyone has such different meanings for the word flare; also need to hear more about it. But; if the Enbrel isn't working yet for you , you haven't lowered the MTX, and you've had similar feelings before--I would just think it would be happening anyway--and if Enbrel will help with that you don't know yet.
I also started Enbrel 1 month ago; and have had headaches from it--now decreasing in severity. Still hasn't made a difference in joint pain or fatigue. here's hoping for us both.
To me flare is an event of the past.
In a lighter mood, I like to describe flare as "the monsters" become agitated after tolerating in between flares "series of bombardments of meds and undesirable bad food". "The monsters" have somehow developed the immunity to meds and started to consolidate the strength when the body is showing weaknesses (symptoms such as fatigue, headache, sore throat, feeling cold etc.). When the body at lowest level, "the monsters" turn havoc, emerge as aggressors to mount an attack. Sometimes, there is no hold bar "the monsters" can move from one joint to several joints to cause pain, damage and rampage
In the past I tackled flare in a different manner.
Whenever the body showed symptoms, on the diet side, I took a lot of fruits and juices like papayas, pears, watermelons, avoid deep fried & oily foods, abstained from any form of shell fish, meat and all the food that I awared of. I drank a lot of water and took soupy meals.
I would boil herbs and took three times a day and continued to do so unitil the situation was in control. I ensured that good daily toilet habit was important.
As long as we know how to "tame" the monsters, we are their "masters".
Good luck!
My Dr added Enbrel to the MTX since I stared flaring in Dec. with no end to it. What has been happening about once a week is a dramatic surge in pain for 24 to 48 hours. I guess I consider a flare a breakthrough the RA meds with a lot of pain and some swelling but I could manage to do a couple of things a day. These extra surges produce a bedridden situation no cooking etc. Also the swelling is minimal since MTX but not the pain is horrible. I hope this helps.
We are all different but I was just hoping someone could shed some light as I am so confused. I do get the Enbrel headache for about 2 days but it is my hands, knees, ankles and feet that won't settle down. I do know that the Enbrel may take up to 3 months to help any but being sero-negative I sometimes wonder if RA is the correct Dx. This can be so confusing and I consider you veterans of RA to be much clearer answering questions. Also does anyone flare with only a little swelling but extreme pain? Thanks.
Bonny, I don't hardly ever swell when I flare. I didn't have much luck with the Enbrel but so many do. If you don't see results soon, which it seems that you doctor is already considering, a trial of something else might be the solution.
I've heard of a lot of people that have failed Enbrel and then gone on the Humira with great results. Remicade was a lifesaver for me. I just couldn't keep taking it.
Flares are strange beasts. Over time, you can feel when you are starting one. Then, resting and avoiding triggers becomes very important. I love the fact that kokako has given you some really good advice about what to eat. I do find that fresh fruits also help me as well as avoiding greasy foods.
It is possible sometimes to increase the MTX or add Plaquenil to the mix. They both work well with Enbrel. Then later, they can back off them again.
My flares are a lot like yours. I get intense pain, my joints get really hot, I might feel feverish and I am very tired. When I fall asleep, I often hurt so bad in my sleep that I actually cry out. This is rather disturbing to other family members. But I cannot help it. I find that if I eat fruit, especially citrus, it seems to boost my body back up. So, I definitely would look into what things work for you and have them handy.
I agree with the soupy foods as well. A lot of times, my appetitite is not good when I feel so ill. But soupy meals are easier to digest, help you get more fluids while still helping you get nutrients. You might even want to start a little notebook of what works well for you and what you notice makes you feel worse. Breads seem to be bad for me. I suspect it is the gluten in them as many people have found that gluten triggers their symptoms. I just know I don't feel as good when I eat much bread.
Keep trying to find your answers. You'll will most definitely get there.
Thanks Deanna. It helps to hear that yours are similar even though I wish you didn't flare. I will add more fruit. I drink a lot of water and eat a lot of veggies but like you I just don't want anything right now. I have lost 12lbs since early Dec. which is not a bad thing, yet.
You said that you are off of biologics but are you on MTX or Plaquenil? I think that the 20mg MTX is keeping my swelling down during this flare.
Yes I will get there eventually. This is a very tough disease and you veterans are sure needed and wanted.
Dear Bonny, I am soooo sorry to hear you are not able to 'do things', I know staying in bed, not getting dressed, etc. makes me feel worse. I have had 'the swelling, pain,etc. again but the prednisone (back to the 3 X5 I was taking!!) brought me back to where I was. I want to get off of Pred, but not just right now. WE KEEP looking for answers in the meds, (Is it the Embril?), but maybe it is just the nature of this dang disease. It comes and goes no matter what we do? I'm wondering? Not feeling so much better--again!Bonny, the only things I'm on right now for RA is Plaquenil and Pred. They had to take me off the biologics because they said my immune system was destroyed. I'm waiting for my new doctor to confirm that assumption. I had to go off the MTX because they said my bone marrow was damaged and that I had dangerously severe anemia. Now, both those things were said by that really absurd Rheumy I told you about a while back. But I do feel like I need to be off the MTX right now. I know that I have healed remarkable well from my knee surgery which was one of my concerns. So, I think a break at this time is probably very advantageous.
However, I may not be able to go on any of those meds again. I've come to accept that if it is true. It scares me, of course. But it is nice not having such poisons running through my body. But if the next doc wants to give it a try again, I'm game.
Bonny I'm sero neg too. I've been wondering for 30 years if they really have it right.
I went to the enbrel site and down loaded the info for perscribers. Toward the end thye had a section on 'spontaneous' reports from the public after approval of enbrel (not found in testing) was joint pain. So you are not the only one. I imagine to report joint pain in an RA patient it was really bad pain.
I think you are really brave to keep trying it. How about calling the enbrel folks and see if they can shed some light on it. I'm wondering if you could take benedryl with it to tone down the reaction, also wondering if it would shut down the headache. Benedryl administered with remicade prevented the headache for me.