Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications 2nd Enbrel shot! Much better!!

Hey D...
Well done on the shots! I think you said you're on the 50's right?.. I saw a video of a guy doing his enbrel shot on youtube... (helpful but wierd!) he had an alarm in his fridge in case the temp went too high... above 4 celsius i guess.. might be an option. My fridge has all kinds of fluctuations of temp especially in summer so think i'll get a new one.. Still waiting for my approval.. (end of June) I'll go on it for a while guess but i'm getting increasingly frustrated by doctors and their blatent lies and big pharm companies and their profit before patient mentalities. Thinking about asking about LDN out of spite, but I already know how thats's gonna go down. I've been withdrawing from a notorious ssri aswell at the moment which is pretty close to hell on earth.. .all I get is lies and generic answers in regards to that. ARRRGH!
Hey sorry I'm ranting off topic. But you guys are the best doctors specialists around!! Hope yr feeling better soon D. Keep posting on the progress pin cushion.haha. : )
Peace
Rob
ps. naprosyn.. naproxen is making my hair fall out.. in clumps!! Awesome!!!!!!

So glad.. I am so chubby I did not even consider the belly.. Maybe I shoud try..

Great Idea! I have thousands of $$ in my fridge too.. And I am off of it for a good while until the ankle heals..

Oh my gosh Rob,
My friend, I am really sorry about your troubles. I wonder if the herb St. John's Wart could help you while your getting off the ssri? It's like a natural anti-dep.
Is Naproxen an nsaid? Your hair is falling out? Ahhhhh I am so sorry. Deep breaths, my friend. Yoga style deep breaths. OK anybody else out there with hair falling out advice?? Maybe folic acid?? I'm not sure. That really stinks though!! OK,now I need the deep breaths. I'm freaking out in your behalf from across the world. In.....Out....
So I am thinking LDN would be a great option for you right now, especially with the ssri withdrawal. Go for it. And if your Doctor says, "low dose what?" then get it YOURSELF. www.ldners.org/resources.htm has a list of Docs who prescribe it. If you can get an appt soon with your doc, you might casually mention that matter of factly you ARE going to try this drug and ask him if he would like to be the one to prescribe it or if you should get if from one of the doctors on this list.

Stay strong Rob, you can do this.
-Donette

p.s. yes I am on the 50's of enbrel

Tamara, you are so funny!! One of the side-effects of AS is unintentional weight loss, I'm wondering--so like when is that going to kick in?????

Take Care,
Donette

Hey D...
Thanks sooo much for your support. Its really nice to wake up and get a message like that. In fact its the most genuine realest concern communication i've had lately.. family and friend included... thank you. It's ok though, as far as the ssri goes, its just going to take a while feeling crap. I've been "stuck" on it for 8 years unable to get through the withdrawl.. done my research though so i know what i'm in for. note: I was never depressed til i went on the med. I found out about the hair stuff.. naproxen (nsaid) apparently puts yr folicles to sleep or something so hair comes out.. I guess i'm molting!! maybe i should post in the pet corner from now on! Anyways... hope yr feeling really good today and its one of those days you can kind of skip and whistle through. All these medical dramas are... well amusing after a while so don't freak out for me! I'm all good... just doin some hard yards. Have you got incredible hulk superpowers from the enbrel yet??!!
Thanks again D.
Rob ; )

The only time I had unintetional weight loss was when I was on Methotrexate and Indocin. The indocin made me dizzy and almost car sick feeling and I was ill often.. But Nope not me.. I am a HEARTY GAL!!

I've been thinking that too - unintentional weight loss - how come I get the rest but miss out on that? Doesn't seem fair to me.

Hey Rob,

You are so funny! Thanks for keeping a good attitude through it all. "A hard yard" That's an awesome way to think of it. Your attitude makes the rest of us stronger too. Although for you, I think I would call this one a "wild mile." We would miss you terribly if you left for the pet forum, those people are REALLY nice though and I'm sure they would take care of you and you know, brush you often, or whatever proper protocol for this situation would be.

I totally know what you mean about the friends and family not understanding what we deal with on a daily basis. When I was REALLY sick before my Dx, I imagined what my family saw when they looked at me: I was really mentally messed up, nobody could touch me without it hurting, I couldn't lift anything, reach anything, or dress myself most days. I couldn't stand up without help. I slept 18 hours a day. My outlook on life was terrible and I'm sure I just looked like a black hole of despair and there was nothing they could do for me. The weirdest thing is, besides being weak, stiff etc, there was NO outward appearance of the disease. I started to wonder if I was the ONLY one who really believed anything was wrong with me. At the time I was having numerous tests and MRI's all coming back "normal" which was maddening! Even now with my Dx and meds there are days when I just can't DO what I normally would have been able to. I think for me, its a matter of building my strength and endurance back up from being "sedentary" (what a word!)Once I described my pain to my family like this, "it's like someone poured razor blade studded cement into my joints."

And as for Hulk's attributes, so far I feel pretty good and I'm sure I have his personality nailed!! GRRRRRRRRRRR!

Take Care,
D-

Hey Wendy!

You've got nothing to worry about! You look great!! It doesn't seem fair though!! When I first read the symptoms of the disease I actually thought, "hey I might get skinny again after all!!" How twisted is that?? Of course that was after crying my eyes out over the other symptoms!! Ha! I'm so glad I found this site, every other site's description made me want to take a short walk off a tall bridge. After I read the description on this site, I thought, "OK, I CAN do this!!"

I did lose 7 pounds in December though!! So maybe there's hope!

Take Care,
Donette