Enbril side effects-help please

Hi:

I'm new to posting to message boards, and posted my message initially as a reply by accident.........duh!  

I would appreciate any input, if anyone else has experienced other side effects like I have been feeling.  I have RA, have bothersome bone changes (no more high heels for me ), and an ingrown toe nail that's killin me---sorri, but had to throw that in for some comic relief.

Don't know which med is causing the problems, so I'll list what I'm taking and what I've been experiencing.  If anyone can help, let me know.

Methotrexate, Prednisone, Enbril.  these are my regular meds. Have pain meds (only take during severe flare ups), Lidoderm patches (only when swelling is tooooo painful), and assorted other stuff like Calcium/Vitamin D, StressTabs w/B's, folic acid, as supplements.

I've only had 2 shots of Enbril to date (tonight will be my 3rd), but have had a headache ever since the 1st shot.  Mild, but just enough to be annoying.  I've also been experiencing a feeling of overheating, so much so that I have a hard time cooling down.  Just walking the dog feels like I've run a marathon, in terms of sweating & feeling so hot, it almost feels like I'm baking from the inside.  I'm assuming this feeling is from the Enbril as that's when the overheating problems started.  Has anyone else had this occur to them?

I also am bruising and bleeding very easily.  I think the combo of the methotrexate & prednisone causes that, however the pred dose has been lowered and Doc says I can go off it entirely in about 4 weeks once the Enbril full benefits kick in.  But she also says that Enbril works best when combo'd with Methotrexate, so I'm hoping the skin situation gets better soon. 

Weight gain---------- !!!!  doesn't help the RA to be overweight, and I've gained 38 lbs. since being on the Prednisone.  Doesn't matter what foods I eat or how much, but since I was having such a severe flare-up, I couldn't do walks or go to the gym.  I'm starting back slowly now, and hope to shed some of the lbs. which I'm sure will help the overall situation.

Eyes------notice on some of the postings that vision can be affected.  I've noticed my reading glasses don't work as well, and am very concerned about that.  My next appt is 6/27, so I will mention to the Doc.  It seems to be getting worse in the last week, and blurring somewhat.

Fatigue.  Again, I think the RA itself causes major fatigue, but don't know if the meds contribute to that also.

Leg & feet cramps:  was so severe I would awake at night and be up for hours trying to get them to stop.  Seems the higher the Prednisone dose, the worse & more often the muscle cramps.  My Doc didn't seem to think there was a connection, but as Pred is lowered, the cramps are less and less.

In general, I've noticed how difficult it seems to be diagnosed correctly.  It took me 15 years for someone to find out I had RA.  Unfortunately, when you have a flare-up, you don't always have access to a Doc.  So by the time your app't date comes around, all is back to normal, and the Doc thinks you're just imagining the pain, etc.  Been there, done that.   If a Doc does not treat you properly, FIND ONE THAT WILL!!!  If there is anything I have learned from all of this, it is that there are wonderful, informed, dedicated medical professionals that will help you; but you have to find them.

I'm going to stick with the program my Doc has me on, until such time that the side effects get to be worse than the RA pain/progression; or unless the meds don't help me.

I miss not being able to train in Martial Arts, but know that I can't bleed all over everyone each time I take a hit or kick.  I miss not running 3 miles every night, which I could do until 6 months ago.  I'm scared to use the gym facilities because my immune system is lowered by the meds; and all the gym equipment is so full of everyone else's germs.  I'm a little concerned about being in So.Fla. with another Hurricane season upon us, as finding a way to keep the Enbril cold without electricity will be a challenge, but as all of us have learned, we will make do the best we can with what we have........

Sorry to be so long in this posting, but I haven't really talked to anyone about any of this, and my Doc hasn't really addressed the side effects.  But, if she won't on my next appointment, then I will find a Doc that will.

Thanks for "listening".

Carol

I was on Enbrel for 2 years...had the headaches, yes. I never had headaches before that and was never prone to them.  It is listed as a side effect.  So is flushing.  A heat or warmth sensation that comes and goes.  Prednisone can double this sensation as it screws with your hormones and endocrine system.

The bruising and bleeding problem I suffer too.  The DMARDs and TNFs and pred have a tendency to thin the blood.  That's why it is CRITICAL to tell the dentist and or if you are to have surgery that you take these meds.  My legs are full of bruises.  But I make light of it when out and people ask.  I respond, "I'm a preofessional women's Rugby player".  It's easier to lie! And more fun.

I second that notion on subscribing to Enliven services.  The RNs are great; although don't be surprised if you get a generic "see your rheumatologist reply".  But they will go over in detail I suspect the adverse effects to watch for.  They're also listed in the RX material in the box. {hard to read the small print however}

But search around the posts here!  You can go back a page or 6 on the bottom of the screen.  There are many posts and questions about Enbrel.

The best to you!

Hope to hear from you soon.

Sincerely,

Erin  

Thank you all so very much for the replies.  I had read through the Enbril info., but it is so voluminous and in such small print that I never noticed about the flushing.  But I feel a little better knowing it probably is from the meds and not yet another thing going on medically.

I will contact the site mentioned re: Enbril questions.

I will also keep in mind the advice re: bleeding and letting dentist, etc. know of the situation.  My Doc never mentioned that, and I'm not happy about that.  She also never mentioned something about NOT taking folic acid the same day of taking Methotrexate, my brother told me his Doc told him not to do so.  My brother has psorasis (severe) and he has developed RA symptoms as well.

I'm going to pass this site along to him, as I've spent some time reading the posts, and yes you are right.......I've learned quite a bit.

As for the numerous bruises........lolollllll

I get away with saying it is from karate, as I used to get bruises on occasion when I trained......but I really earned those!!!!

I must admit I put off learning about RA until it got to where the flare ups didn't go away anymore.  Was almost immobile from Dec through Feb. before I could get in to a Doc & get on meds.  I know I don't want to go through that again, as I couldn't grasp a doorknob, or hold a cup of coffee, and could barely make it up the 3 steps on my porch.  Also couldn't sleep/think for the pain.  ER visit helped a little, but still took almost 2 months waiting for an appt with a Doc.  Even with the meds, I'm still stiff sometimes, and my knees are not in the best shape.

Knowledge about one's illness does help one to deal with it.  I learned that when my husband was ill (HepC/liver transplant/non-responder to IntronA&Ribaviran), we had the best Docs (UofM/Jackson in Miami, FL), but it was back in 1993 and even the best Docs were finding out new things about HepC at that time.  He passed away in 1999, there have been so many breakthroughs in new meds since that time.

I'm hoping each day will bring new breakthroughs in treatments for RA as well.

I'm also learning as much as I can about Diabetes Type I, as my 15 yr.old son was just diagnosed in Sept.05 (does not run in our family)........never a dull moment in our lives

And yes, I am in Dania Beach Florida, which is between Miami and Ft. Lauderdale.  I just heard we will have a tropical storm off the coast by morning and already I can feel the stress building.  I still have broken windows waiting for repairman (on waiting lists still), from Hurricane Wilma.

Ahhhhhhhhhhhhhhh, but.........

it could all be SOOOOOOO much worse!!

Thanks again for the responses.

Carol

It's nice, in a way, to know someone else is experiencing similiar body heat sensations.  Sorri that you are having them tho, as it is extremely uncomfortable.

My electric bill has gone up $80.00 this month, as I now have the central A/C set at 65 instead of 76, so it runs almost constantly.  My son doesn't mind, as he understands my situation.  At work, I've had the vents opened wide, and my thermostat set as low as it will go.  Everyone who comes in says how it is freezing in my office; but I just ignore them , and I'm sure mostly everyone thinks it is "female" related hot flash problems.  I don't share my health situation at my job, it serves no purpose.

I already went through early menopause at age 39 when my hubby got sick (the stress threw my system into a tizzy).....so I knew it wasn't that.  Thanks for the mention, it has been over 6 years since he's been gone (will be 7 yrs. Dec.21st).......it doesn't really get alot easier, but I know he is in a much better place; and he was the strongest and bravest person I have ever known.  That helps keep me focused and I know that for him to have gone thru what he went thru, and still smile right up until the end; I can get thru my illness & take care of my son's diabetes without complaint.

We now have Tropical Storm Alberto hanging around, trying to stir up trouble for Florida.  It's off the west coast however (I'm on the east coast), and looks like it will head more north, good for me where I am; not so good for the folks on the west coast.  Hopefully it will not gain any strength, and be nothing more than a minor annoyance.

I too bruise at the Enbrel shot sites.  The bruises take about 2 weeks to fade, but the bruises from other things take longer.  Just barely bumping into the car door gave me a huge bruise on my hip.  My little Yorkie/Maltese dog loves to play, and she is causing horrible cuts all over my arms just from jumping around while we play tug-of-war.  That never used to happen, I had tough skin , but now it's like paper and just gets all torn up from the slightest things. That is definitely from the Prednisone.  So, I just wear mostly long sleeves..........lolllllll

Take care, and keep in touch.

Carol

Hi again:

Thanks for all the encouragement, it really does help. 

Craig: thanks for the input.  I'm familiar with Prednisone and the effects of this very powerful drug, as my husband was on it for 4 yrs. after his liver transplant.  In addition to it's anti-inflammatory properties, it's used in transplantation in varying doses to lower the immune system to avoid organ rejection.  My husband developed many other problems from the Pred; but it was always just looking at it as the lesser of the evils.  Enbrel I'm not as familiar with as I had mentioned earlier; I actually was trying to ignore the RA.  Yes, I know that is a very ignorant thing to do, but I guess I was so done with medical needs and Dr./hospital visits and drug schedules/regimes/etc.etc.etc.; from caring for my husband at home for 6 years...........not in a way of being bothered about it, I was just tired of thinking about it.  Don't get me wrong, I wouldn't have changed a thing about being able to have my husband at home & care for him, it only enhanced our love for each other, and made us all stronger.  But after this last RA flare-up, I knew the time had come to deal with it head-on; as I not only want to be in as good a shape as I can be, but I need to be well for my son too.  I'll make sure to let my Doc know about the problems, but you are correct in stating the obvious...........when it comes right down to it, a person better be well-informed to know what is going on with their bodies and their illnesses.

As for you RA girl.... .........yep, same thing here with the sun.  Understand that I am a Florida native, I'm used to the heat and sun...........it has really floored me to have this kind of reaction.  I get sunburned so fast, I suspected it must have something to do with the Enbril & the way my system reacts to it.  Soooooooo, since I'm trying to build back up with walking (not going to be running--knees are not so good now).....I'm doing it at night, and staying out of the sun during the day.

And Erin:  it's pretty funny with my son & our shots.  He's been in the Bahamas for the last 2 1/2 weeks, he left the day after my 1st Enbril shot at the Doc's.  So, he hasn't actually been at home to see me do my shot yet.  We joked about how we'll be "shooting up" together on Saturday nights............. .  And yes, he's been self-injecting since Sept.05.  They finally put him on the "pen" injector for his Novalog, but he still needs to inject w/syringe for his Lantus......hopefully he can go to the pen for that as well, depends on if our insurance covers it.  I have to give him so much credit..........to be diagnosed at 14 was really hard for him...........he said he'll miss getting drunk on his 21st B-day, (I told him he wouldn't be missing much) and the commercials on TV regarding erectile dysfunction for men w/diabetes scare the hell out him........as he said he hasn't even had the chance yet to be nervous for the 1st time w/a girl and have erectile dysfunction for a totally different reason..........lolllllllllllll  I've told him he has a long way to go before he has to be concerned about those things, and may never even have those problems.  He's making the best of things, and keeps track of everything he needs to.  He can carb count with the best of 'em.  

He's always been a very responsible person, even as a young child.  He's always wanted to go into medicine, mainly because of his dad's illness, but now even more so.  If anyone can do it, it will be him.....as he also is in all honors classes and is a very good student.

As I said before...........all could be SOOOOOOOO much worse, I count my blessings every day.  Erin, you have your hands full and I look at the meds you take, and know how hard it is.  I'm handling the few things I take, and don't know if I could deal with the magnitude of what you deal with.  Thank you for being here for me, and others with your help, information, and encouraging words. 

We'll talk again

Carol

your son sounds like a gem!  he should ABSOLUTELY pursue medicine/medical fields.  15?  in highschool...if he gets advanced Anatomy & Phisiology classes or Honors A&P and Honors BIO, many times they can transfer that into college.  that's what i did. (but for nursing i ended up haing to take them all over again, ugh!)

honestly, i don't think he should worry about ED or anything like that for ANY TIME SOON.  as long as his arteries/cholersterol etc...are good, he'll have a great teens and 20's and 30's and Lord knows what lies ahead in the years to come in breakthroughs.

you're alright Carol.  sometimes it takes a big kick in the rear by RA to kinda not "ignore" it.  for me?...i was convinced in the beginning that as long as i ran & trained, i'de be fine.  that only lasted a few months.  lucky to crawl if i could.  but you're doing all the right things.  early diagnoses, early treatment with TNFs and DMARDs is key.

it's a hard fight.  may we all keep our gloves up.

take good care & again, so glad to have you here.

erin