Good Moanin' All! The old page can be reached here... please carry on! Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds - Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
i was on the horn with about 2 dozen people yesterday about this Promethius Test i need to pick up tomorrow.
totally out of pocket. blah! bummer. $200 for the kit. but the lab/blood is covered.
i called my MIA pappy on Sunday....just to feel the waters (and because he hasn't called since May) so i thought i'de be the better person (the adult) & call to see how he was making out in the heat. it was all B.S. talk, nothing significant. he says, "So are ya better yet?"
mmm yeah this is all going to go away just like that! just snap your finger and POOF...all gone!
in the end, he cuts me short & ends the call. also, no offer to help with the Promethius Test or GI visit...OR EVEN GETTING DOWN TO THE OFFICE for crying out loud. but i WAS prepared for NOTHING...so disappointed?...kinda...surprised?...no.
hah...this is funny. Enbrel and CAREMARK that provided me with Enbrel for 2 years under his HMO, tee hee hee, they sent em' a bill for over $3,200 for the medication. awe...too bad, poor baby.
oh, his first words on the phone was "Erin!....I used to have a daughter Erin." {alright, WTF? is that an A**hole thing to say or what?} i should have said, "Oh yeah, because I used to have a father, Robert, and health insurance too! How funny."
hanging in there. have a good day all.
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Erin, this makes me mad to hear! Listen, when my girls were very young, but old enough to understand, I told them that their Mother and I brought them into this world, and that they had no say in the matter. Therefore if ever life got them down, just come on back home to Momma and Pappa, where we would continue to support them.
I felt, at the time, that if they knew that they had a dependable safety blanket that they could count on, that this would probably make them more successful. I also truly meant it. It's called unconditional love, because under my breath, I would have considered them lazy and unmotivated if they had of come back home and slept till 11:30 an so on, while being healthy, lol. But good or bad, they were my wife and my creations. We would be responsible for them, for life. Boy, I feel like an angel here, ha ha ha.
Thing is, they never had to move back in with us to break us, lol! No they haven't quite broke us, but we have made sacrifices because of their need for many.
Well, my back is hurting due to all the patz I have laid on it :) .
I hope the test goes well for you and your Dad gets a wart on his nose .
Rj
P.S. I had steroid injections yesterday and realized about 5 am why I couldn't sleep all night !
Oh yeah, I greeted the rheumy nurse yesterday with "hey good looking". She said, "I like you".....She was young enough to be my child, lol, and big enough to whip my tail too!
Oh Erin... Where does he live?Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds - Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Rj you made me cry. But nonetheless it was really nice to hear that you did that for your children.
My Aunts, my mom & boyfriend all tell me that he's just "not in reality" and will never EVER get it. so i really don't bother with him at all because he's never ever made me feel good about myself, if anything makes me feel bad/guilty/ashamed that i'm ill and like this. nothing ever supportive or positive.
Ducky, if you find em' he's all yours...usually in some bar or tavern around 6pm.
Rj, hope you get some rest tonite. if not...clean the house. (that's what i do when i get shot up with steroids)...oy! but then you're a hurtin' the next day! can't win!
So the GI visit & Promethius test will have to go on the ol' AMEX. wash my hands of it and be done....what ca ya do. Hope all goes well.
Erin, your father does sound like a complete A*&*. Honestly, my reaction would be to completely alienate myself from him, but then again, you can't help hoping that things will change. I'm so sorry that he disappointed you yet again.
On a positive note, enjoy the nice weather! It has been a beautiful day, and it's supposed to be purty tomorrow too.
hi everyone, hope this finds everyone doing fairly well...... well i have tried to cut back my prednisone this week with the increase mtx but i think it is too soon as i am starting to go down that rocky road of joint pain ... gosh i want to get off that drug and get my face back! i hate having this round head and swollen neck! bad enough you feel rotten but do we have to look it too!
oh well enough complaining, i hope an evening dose with help a bit as it is only what 2 days that i cut back one pill and i feel it in every finger, wrists and feet. oh well i just hate this dang disease yucky RA ! evil opps complaining again, so how is everyone doing? well i hope well, the weather seems milder around our nation? have a good evening and night everyone ~*yalinda
Hi everyone! Happy Friday!!!!! I'm teleworking today, so I didn't have to face the dreaded commute into my job. I work out of a telework center every other Friday--it's a great relief.
I'm still doing great with the joint pains (or lack thereof). MTX is definitely doing its thang; and I'm on such a low dose (only 7.5 mg/week). One thing I'm still worried about, and my husband is too, though are the side effects of this drug. I still have that cough. It has gotten a bit better since the beginning of the week, but I've noticed the past 2-3 weeks that it appears to get worse after I take my weekly dose of mtx. I take my dose this evening, so we'll see if it gets worse tomorrow. If so, I will definitely call my rheumy.
Also, I have gotten my first mouth ulcers--gosh they hurt, although they more annoying than anything else. I can't eat certain foods (ketchup, and spicy things). I'm a bit surprised that I would get mouth ulcers on such a low dose, but the drug info. clearly states that the side effects are not dose dependent. I'm sure my rheumy won't take the mtx away, though, since its been so great the last two weeks. I'm more concerned about the cough than the stupid mouth ulcers, although I've read that these ulcers can be a sign of a low WBC?
How is everyone else doing? Yalinda--hang in there and give it a bit of time. I swear when I came down off the prednisone I must have been crazy! But I only took it for a week, and at unusually high doses. I started at 80 mg and tapered down to 20mg, then went cold turkey. I think I could get away with that because I only took it for a week. I do remember the joint pains hitting me as I tapered down to 40mg; by 20mg I started wonder why I was even taking the stupid drug. I never felt as bad as I did, though, before I started taking the prednisone.
Erin, how are you feeling today? Again, so glad that you had a great GI appt. the other day.
Duck? CaMama? Aldo? Anyone I missed?
Have a great weekend everybody! Provided I'm not wiped out by the mtx (since I take it on Friday nights), I'm planning on playing keyboard with the contemporary worship band at my church tomorrow night, and going out with some girlfriends for dinner on Sunday.
elcamino, sry to hear you got the mouth sores..... i kept looking for them cause my doctor said it was common but i never got them yet.... knock on wood..... hopefully it is the wbc thing and you can somehow boost it? dont know for certain? erin would know :)
glad your liking the job esp fridays it is always nice to have a good tgif! i am glad to hear you play the keyboards..... i always wanted to learn how to play and thought this RA would be the end of that dream? my daughter plays piano and i just love it. i also love contemp worship music. what is your favorite song?
i am off today going to our local county fair .... not a diet day today! fried dough and italian sausage :) bad bad bad but oh so good! :) have a geat day! ~*yalinda
yummy fried dough... I can't wait til our fair... hhmmmmConfirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds - Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
oh no mouth sores! now, there can be a few types. some medicines like MTX and a bunch of others can cause mouth sores. and they are just that...ulcers in the mouth (on the tongue, inner cheek, lips) and can also cause the gums to recede, swell, throb, get red & puffy, bleed easily and hurt like heck. these ulcers do not necessarily have a correlation with WBC count.
now...when you get too immunosupressed you can develop mouth ulcers of a different type. the white blood cells get lowered & you become more prone to oral candadidis infections. so you'll get circular, reddish, crater like sores...they can have a white or green tinge to them too. and a fuzzy hairy tongue! the oral thrush is a real telltale sign of the immune system going down. this is my unfortunate case. ewwwww. my mouth ulcers are so sore that it's sometimes impossible to eat, the throbbing is so bad. brushing my teeth is TORTURE!
no matter which one it is, it helps to keep really bland foods on hand because yep...acidy stuff BURNS! ouch.
Nystatin (oral swishy stuff RX) helps with the immune wbc realated tongue & mouth ulcers & thrush.
i've found that TOM'S OF MAINE toothpaste is the ONLY toothpaste i can use that doesn't hurt.
take extra acidophilis to help heal the mouth ulcers.
depending on how bad they are, there are oral anesthic RX creams & applications for the sores.
best wishes.
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Hi all. Thanks for the info. Erin. I didn't know there were different types of mouth sores. I'm sure I have the former type; my gums are bleeding easily too, just like they did when I was pregnant. I'm just trying to brush my teeth gently. The sores feel a lot better today. Can Listerine be bad for them? Or can it act as an antiseptic and keep them clean, especially since they're in my mouth?
In any case, I'm glad that they're not the type associated with low WBC; I thought that my dose of mtx is not even high enough to do that, even combined with the enbrel. Sorry to hear that you do have those types of ulcers. What can they do for you, other than try to bring your wbc back up?
hey, well, autoimmune means too much immune...so really the whole point of everything is to lower the immune system! that's why we're given immunosupressants. this drug called Neulasta is a drug that gives paople more WBC's so they don't catch any serious illnesses like the flu anf pneumonia, etc... Listerine can actually dry out the sores further & make them crack and NOT heal & actually make them worse. BIOTENE works well, I've used it, also salt water swishes. Try to find stuff witout alcohol in it, yikes.....gotta go to bed; fallin' asleep here! (only 2 hours last nite)Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
I just wanted to jump in and say Hi. Thanks to all for the mouth ulcer topic and advice. I run into the more minor of the two types without even being on serious meds yet. Why do they last so darn long too? I do a peroxide/water rinse 4X a day when I have them and that clears them up a bit faster. It's an Old-timey remedy my MIL hooked me up with.
We just had our fair. For me it's all about Cheese-on-a-Stick, French Fries, and Elephant ears. Yummm.
I have been doing better with Relafen and Plaquenil, but this ankle just won't let up and I still can't really exercise without ankles and knees flaring (even in the pool, unfortunately). I am debating whether to give the Plaq. a few more weeks to do its thing or whether to just start the MTX at my next appointment. Of course, I guess I can see what the Rheumy thinks too. What do you all think?
Rocky
Actually happy to be sick and not just crazy . . .
Hi Rocky. So, you get mouth sores too? I know that some people tend to get them, even without medication. Although several of the drugs they use for AI disease can also cause them. The sores I had went away on their own--I did nothing but keep up my regular dental hygiene routine. But I'll have remember that peroxide rinse for next time.
As far as trying mtx is concerned, I put it off for over a year. I was terrified of the drug. But now that I'm on it, I can honestly say it's the best drug I've taken so far. MTX combined with enbrel will most definitely put my RA (or whatever it is) into remission; it's really just a balancing act with the potential side effects. I also take plaquenil, and I wonder if my rheumy will simply take me off the plaquenil, or if I should continue taking it so I can be weaned off the mtx later? In any case, I'm taking all 3 (enbrel, mtx, and plaquenil) and I'm feeling very little pain for the first time in over a year! I'm not doing anything to mess that up just yet....
"El", Wow, that makes me so happy to hear that! I too, really do hope that this combo is the ticket for you. :)Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
hi everyone, glad to hear the meds are working for you elcamino! i took my 8 pills friday night without a hitch. been busy all weekend kinda sore and stiff but i wont complain :)
rocky what are elephant ears? is it like fried dough? i also do not know cheese on a stick but can guess?
well only home for a bleep g2g take care everyone yalin
Hey Erin and Yalinda--yes, it is great that the mtx/enbrel/plaquenil combo is working. At some point though, we all have to ask at what cost? See my new post regarding the lungs.
i am so bummed for you elcamino, just bummed. hopefully the doctor can find another "cocktail" that will work just as well without the side effects. as for me i dont think i am going to get off this prednisone without something else. i know it is just one week at 20 mg of mtx but everytime i try to decrease the pred. i hurt all over. but this is not about me it is about you ..... i wish you the best and will keep you in my prayers. ~*yalin
Good Moanin' All! The old page can be reached here... please carry on! 
moanin' ya'll
blah! bummer. $200 for the kit. but the lab/blood is covered. 
!
... gosh i want to get off that drug and get my face back! 
opps complaining again, so how is everyone doing? well i hope well, the weather seems milder around our nation? have a good evening and night everyone ~*yalinda