the rheumy is driving me nuts about my meds! SOS SOS

 ok, so i have my list of stuff that i know i will forget unless i don't read them from a scroll like a nitwit!  i was under the impression that enbrel will work for up to a number of years after being under therapy! this is wrong?  he says it's a fast acting drug and this will be a life long regimen with the enbrel and possible adjuncts.  i have been without any injections for 3 weeks (the Rx was lost at the pharmy co.) and my body has been regressing back to what it was like before i started treatment.  he said that the enbrel is probably out of my system by now....and that's why everything has been getting worse! second problem: i inquired about pain management. trying to see if he can treat the RA plus the pain (my primary writes my pain meds and trying to kill 2 birds with 1 stone since money is tight). i don't understand!   i explained that the darvocet is not relieving the joint and back pain as it used to and i asked for a suggestion on what else there is to do. so....he does not give narcotics to any of his patients because they do not work for RA pain. this makes no sense to me!  i've been through all NSAIDS and cox 2's and had no relief.  the enbrel did ease alot of the pain, but i still needed something for breakthrough pain.....so how can he say this?  when i saw a pain specialist back in december he agreed that darvocet was a good idea and that he treats his arthritis pt with it. but anywhoo...he's gungho on putting me in a chemical remission with the enbrel and possibly using arthrotec or MTX after 3 more months of enbrel.  Is this familiar to anyone?  Does anyone else have to go to one doc for this and then another doc for that?  but he is very good....he reported my weird weight loss to the pharm co. and insists i see an endocrinologist or hemotologist about it.  but where do i go from here if he refuses to write an opioid?  the mobic he gave me ..... i had to take 6 of them to get a little relief!  had to do some smile therapy, was getting angry for a minute. any feedback from anyone would be much appreciated, thank you for listening. take care to all!    erin

 Oh Erin, I'm so sorry.  So what is next for you?  Another trip to your primary care dr to see if you can get something better from him?  It makes sense what you were saying about certain dr's only being able to perscribe certain things, but like you said too, it gets irritating having to see 10 different dr's for 10 different things that have stemmed from one thing!  I guess that's why dr's make so much money!  Have you made appts to see a Hemotologist or an Endocrinologist?  Like you said in another post, I think we must be long lost cousins or something     I need to see an Endocrinologist too.  My appointment went ok, I have been having some pretty significant headaches since I've been on the Enbrel.    My rheumy said that he's not heard of that before, so he told me to start taking one Voltaren every morning and see if that helps.  I asked him about the menstrual cycle thing and he said that it could be a lot of different factors, not necessarily pertaining to the Enbrel.  But since the Enbrel is making me more active and I am doing more stuff, my body is changing and therefore my hormone levels are changing also... makes sense I guess .  We'll see, I don't have to see him again til August, unless I have more problems and then I get to go in whenever.  I hope things get better for you, are you started back up on the Enbrel now?  I know a lot of people take Enbrel and Plaquinel, but you didn't mention that in your posts... Is Plaquinel like arthrotec or MTX?  Well, remember today is a new day... it'll get better I promise!  I wish you good weather and as always best wishes - Ducky

Oh Erin, I so hurt for you. As your Dr said after 3 weeks the Enbrel will be completely out of your system. It takes 2 weeks to really get into your system and max effect after 3 months. But down side to the quick action is that it only takes 3 weeks to get out and your system. That is looking at best case senario. The drug levels actually start dropping off after about 4 days which is why we have to take it 2 times a week. As to adjunctive therapy, it is very common. Your body will develope a "resistance" to the drug and there is a maximum dosing that is allowed. To offset that, the Dr will often prescibe more of an anti-inflammatory type drug. Plaquenil (anti-imflammatory) and MTX (biologic) are the two most common ones. I chose the plaquinel because the nausea I had with the MTX was too much for me to handle. Also, since the MTX slows down fast cell growth, I really didn't want to add insult to injury with my immune system. The plaquinel helps with the swelling and the Enbrel slows down the rate of the disease. A nice combo for me.
I hope that the Enbrel gets into your system really fast this time. I also hope that it works as well this time as I did the last time.
Erin, did you ever look into the meds being sent from Canada? How did it turn out?
Gentle Hugs for you ((((HUGS))))
Oreo

Erin - Sounds like you are doing a little better... Did you get your Enbrel today?  As much as we hate to admit it, dr.'s sometime do know what they are talking about.  But it is always easier said than done... They tell us what to do, but unless they feel what we feel, sometimes that advice, pardon the expression SUCKS!  Good bad or indifferent, I guess they know best.  But it is always easier for the dr.'s to say one thing, especially when they have no idea what pain we are in.  I get that way alot, I feel like I'm a little whiny cry baby sometimes, but then I think, "SCREW IT, I hurt and I shouldn't, somebody needs to fix me!"  Hang in there girl, you'll be fine!  We'll get you through it one way or another I promise!  Oh and by the way, I figured out my problem with my headaches, I had one too many special pepsi's (crown royal and pepsi) the other night.  And I may have dehydrated myself!  But all the other headaches haven't been too bad, I just notice I have a lot more of them.  They'll go away for a little bit, then they come right back.  It's weird.  Well, I need to check the other posts... hope your day is going good!  Hi Oreo!  Hope everything is going good for you today! - Best wishes - Ducky

 Hi, I'm new to this forum but have been on the lupus forum and AIH. I have what I think is osteo not RA but I don't know. Do they have a test for the RA vs. osteo?? I, like everyone else, doesn't like needles for blood tests so I hope it's some other way. I also have sjorden's syndrome, GERD and fibromyalgia. I really like these forums because everyone has been so supportive and helpful.   I'm  not taking any meds for the osteo? I do take meds Gerd, as well  as paxil and wellibutron and nexium and iburoprofen to help me sleep at night. Lately the arthritis as well as the muscles have really been hurting. Thanks for the help and God bless you all. Take care, Neworleans

I could have swore I posted a reply on this post yesterday.... hhhmmmm... maybe I forgot to hit my submit button... No telling Knowing me! Anyways - Erin - I didn't even realize that they still send out the 2 25mg shots... I thought you could only get the 1 50 mg shot now... Pretty cool, hopefully that will do you ALOT of good.  When I got my first Enbrel shot, I too passed out for a couple of hours.  I thought at first,  "darn, I can't do this, I inject at lunch... I can't be napping in the middle of the day every week!"  Not that it would hurt my feelings, I know I'd be alot less cranky at work if I did that, but it's just not practical! 

Yes, the coolers are a godsend!  Between my husband and my kids, I don't get to keep a cooler for myself! 

Well, as far as my headache goes, I think I have also isolated another source of the pain.  Of course my Special Pepsi theory did prove true... I drank some water to re-hydrate and my throbbing, want to pull my hair out and scream at the top of my lungs head ache went away.  Amazing!  hee hee hee... But also, my hair is all one length... LONG... it is to the top of my butt and it is curly, so when it is wet it is past my butt... and it's thick... very very thick... so of course it is heavy... well, being in the military I have to wear my hair up... I think all that weight from having to wear it up all the time is giving me my headaches.... time to find a good salon and get my hair cut... it was funny I was in the shower last night with my hubby (conserving water of course, just doing my bit for the environment ) and I had an epiphany (big word... look out!  I'm on a roll!)  My hair, has got to be the culprit of my headaches!!!!  I'm gonna give it a try anyways... It needs to be trimmed and I need to find a new style that is functional for my line of work, but still looks pretty when I'm out of uniform... something that I can still keep some of the length for my hair... don't want it to short, but can't have it this long either... any suggestions? 

Well, I should go, more posts to read and don't want to bore anyone with my rantings and ravings!  Happy weather, warm hugs and as always - Best wishes - Ducky

Ducky, I agree with you, conserving water while showering with someone is a great idea. EXCEPT when the air is cool and you have to share the water. Great for company, but lousy to stay warm. Another excuse is that it actually saves time in the morning if you both need a shower but have to get out of the house in a hurry. Hubby and I do it every Sat. We don't have time for him to have a 1/2 hour shower as well as me. At least that is our story and we are sticking to it.
Hair? I would take it up in increments until you find the length that you like and works for you. That way it is not a big shock when you first look at it. I did that when I first started shortening my hair. Didn't want to loose the length but also wa tired of the length. Eventually ended up with a short style after my son was born because I wanted to be able to get up and do nothing with it and have it look okay. Now 8 years later I am trying once again to grow it long. Finally is long enough that I can put it up in a ponytail if I use pins to hold the hair at the bottom up. I had forgotten what I looked like in a ponytail. I like it. So does hubby (leaves my neck bare). Let us know what you decide.
Oreo

erin, I am so sorry. Don't know what goes through people's heads when they decide to do something like that. Wish it were not you. Will be praying for you as you go through this. I wish you rest from the pain and a great sleep.
Oreo

 thank you Ducky. feeling blue still....on top of pain and overall lousiness. usually i'm still upbeat through the pain and rough days, but i think my psyche is taking its toll as well. well, the story with my father is he is in general, a lousy person.  he makes too much money, drinks too much, and doesn't want to hear the words "sick" or "doctor" or medicine or anything. always has, always will. for a while, he was at least helping me with paying for school, appts, meds and having on his insurance policy. then he stopped one by one and stopped calling me (although i was always the one to call him!) i never asked him for anything because i'm too proud and stubborn, but when i got really sick i needed alot of help. he was good for a couple of years. last month he asked very bluntly "when are you moving out" meaning when will i leave my house i have with my mom....because under the divorce, he won't have to pay full alimony if i don't live with her (but i need someone with me 24/7!)  basically, he's too busy cruising the islands with his girlfriend and going on $$ vacations.  he thinks: i'm 23 so i should work full time and have my own benefits and be better by now. i've explained this to him but i think he's too ignorant to understand.  he believes no one gets ill i suppose....and then drops you like a hat when you do get sick. he did it to his own mother, so by all means i'm not surprised. never had any kind of relationship with him because he left when i was born (but that's okay....i had a terrific life besides being not too well) and in all actuality, i am better off just writing him off altogether if he'll be nothing but disappointment and heartache, no one needs that in their life. the only thing i ever asked was for some assistance through the past 4 years.  but....some people are just like that, and it's sad.  so now, i'll always have my Joe, who had some choice words to say about this situation; i'll apply again for medicaid; apply for more financial grants to help pay for school so all my savings can go towards my meds and docs. hopefully i'll be able to work 2 or 3 times a week. i believe for every problem there is a solution....i wish i just didn't feel so lost right now. just going to take it week by week for now. getting a bit choked up right now so i'll end this long rant.  have a good night, thanks so much for listening. erin  

Thank you for understanding CaMama. you are correct, some just do not understand what they have not gone through. it makes me feel like a failure sometimes that i don't have any control of what happens to my body. and sometimes i fight so hard and push and push through days where i really should be resting and staying put....and then i end up worse for it ir in the hospital! i guess it's a matter of trying to please those who find it easy to say "oh, come on ge better!" it's difficult when spouses do not understand either. i hope communication stays open for you guys. where you ill when you were first married? i understand what you say about it adding to already tough days.
as for today...i'm okay i guess. having some crying jags now and then. there uncontrollable...like out of no where! but i look at it still as whatever doesn't kill me will only make me stronger. perhaps this is for the best. just wish there was a way to not let people effect me like that. thank you for sharing CaMama. have a blessed day. sincerely, erin

Good Morning Everyone!  Erin, I am glad you are doing better today...  I know all about the fits of crying... I do that every once in a while too, for now apparent reason too... Weird stuff!  I remember watching that @#!$ Folger's commercial... The one when Peter comes home for the Holidays?  Holy crap, I can't watch that without going through a box of Kleenexes!  My husband thinks I'm nuts, and sometimes I do too... 'cause something will happen and I'll just boo-hoo like my dog died... then a few minutes later, I'm ok.  It's not often that I do cry, but when I do, I can't stop... All day it will be on and off... kind of like when I get the hiccups.... Once I have them... I can't get rid of them!    I hope your day continues to get better and better...

CaMama - I am sorry you are going through such strife... Have you and your husband tried counseling?  Maybe this is his way of dealing with your illness?  'Cause he doesn't really know how to deal with it, know what I mean?  As far as being a failure, you are being too hard on yourself.  I'm sure you are a great mother and wife.  You're just going through some really tough times and your husband (for whatever reason) is making things harder on you.  You said it yourself:

"...We have to remind ourselves of that. We are dealing with things we cannot control and are doing our best to survive. We fight to find out what we can do to help ourselves and hope for the best results from our best efforts. I have faith that we will find our answers and be able to find comfort from the pain. It takes time to climb out the holes we fall in emotionally sometimes, so cherish the time it feels like someone sent down a ladder..."

 

Those are very wise words... Things will get better...  We've just all got down days... Let me tell you... for a long time I hated who I saws in the mirror... I used to be so young and vibrant and THIN!  Now I feel old, decrepit and as fat as a cow... I am about 30 pounds over what I used to be and since being on Predinose for so long, regardless if I loose the weight, I still have a very fat, puffy face, what they call "moon face".  I need to have 2 more surgeries on my eyes, because of the Graves Disease that I had when I was pregnant with my son... so I no longer look like me... and it has ALWAYS made me crazy... Not that I was this raving beauty before, but now I feel like Quasimodo's sister!  But like you said above, I can't control any of that, all I can do is take it a day at a time and fix what I can when I can.  If today is a bad day, that's ok, 'cause there is always tomorrow... That's what I live for now... the good times and I try to always make things as good as I can.... I wish you much luck and happiness... Happy Weather, Warm Hugs and as always - Best Wishes - Ducky

Thanks Ducky! Did you have Graves prior getting pregnant? Is it gone now? Wow. Unbelievable. Do you cry at those Sylvan commercials too? I mentioned them in another thread and I was happy to hear I am not the only one who cries at commercials. My kids still like lullabies and often I get choked up trying to sing and can't (not that I can sing in the first place, it just makes it harder to try!)

Hang in there Erin! You are lucky to have a doctor willing to work with you. I know some that will not. Good luck with that. What is a "brain herniation?" That doesn't sound good at all.

Thanks for being there and listening.

Hey Erin, when you hit the lottery and have that Healing Well Convention... lets have it in the Bahamas.... it's warm and sunny there... we won't have worry about moisture hurting our arthritis... not to mention the Cabana Boys!    Woo-hoo!  I'm kidding... But hey, it was worth a shot wasn't it?  I'm so glad your Primary Care Dr. is willing to work with you and your insurance problems... I don't blame you, I'd try and get as much stuff in before the insurance company catches on... that crap is expensive!  I'm glad my words have helped you and have made you feel better... it warms my heart to know I've helped someone's day, there has been many a day that you as well as everyone else on this site have helped me through so much!  It's truly amazing how much just talking about all this stuff actually makes you feel better.  How are the cats doing?  Pets are good therapy too.. however, this puppy that I am babysitting for the next couple of weeks is already starting to get on my nerves... her owners said that she is potty trained, well, she peed on my floor twice already... hhhmmmmm I'm gonna give it a couple days before I really get angry... I'm going to chalk it up to she is nervous and still unsure of her surroundings... I know if my hubby was here, he'd be fit to be tied!  Always looking for the brighter side of things! 

CaMama - yes, I did have Graves prior to getting tied up in a preg-knot.  I was diagnosed with it in May of 1998, and got pregnant with my son in July of 1998... I failed all treatment, so when I was 11 weeks pregnant I had a total thyroidectomy.  I still have to see an Opthamologist quite often to make sure that the Graves isn't in my eyes...  it can cause problems with vision as well as build up mucus and stuff on my optic nerve... if that happens they have to do surgery to take my eyes out and clean all that stuff off the nerve and put my eyes back in... Pretty gross huh?  Sorry about that!    Yes, those Sylvan commercials cause me to go into hysterics... I don't know what it is... I can just think of a day that my kids were sad, not even hurt or crying, just sad, and that will cause me to tear up... I've got issues!  Happy weather, Warm hugs and as always - Best Wishes - Ducky