Hi Everyone:
I know I'm not alone - but just needed to vent a bit. Went to the Rheumy today to discuss my blood test results. Sugar's too high, Arava is not working, cannot increase Prednisone (and don't wanna), have run the gamut of MTX, Remicade, Plaquenil, the rest is not affordable with our insurance. So she says, "There's really not much more I can do for you, except more pain pills."
So I left with a prescription for Percocet and feeling like crying. I know that my situation can change. I know that it's not the end of the world and everything could be worse. But I feel down. My family is always worried, I feel so fatigued and tired, I'm gaining weight, ugh.
Any words of wisdom? Maybe just some cyber hugs? We're moving to Utah from Arizona in a month. I have hope that with the relocation I will find new doctors with new ideas. I'm interested in pain clinics, acupuncture, someone helping me with ideas for exercise, etc.
I just wanted to say "eek" for today. I don't like it when people state that you're sort of a lost cause. Doesn't it seem that way sometimes?
Thank you all.
Hugs,
Jen
aww sweetie, I wish there was something more your dr could do for you. Have you checked to see if embrel can help? I have heard that they will provide a year's worth at no cost to you, if you qualify. I think Humira does the same. Maybe others here have more ideas to help.
I hope your move opens up new options. Big hugs to you.
Bless your heart Jen and gentle hugs to ya. ((((hugs)))))
Check with your insurance before you get to where you are going in Utah for a new RD. Call them up and let them know you are moving there and would like to set up an appt. to meet the RD. Make sure that you get all of your medical records and bring them with you.
Deb has a good idea with checking the enbrel website for financial help to pay for meds. You may also want to check here for some help too http://www.rheumatology.org/public/acrast.asp?aud=pat
Have you tried AP therapy yet? Pip! is a good person to contact for info on it. Maybe it is something you can do and you haven't run out of options yet. Check out the Roadback website www.roadback.org for info too. There are also a few people here that do natural therapy also. I'm sure someone will come along and post or PM you with more info on it.
Hang in there...we are here for you!!!!
Big Hugs to you Jen
Hugs,
Connie
Jen, I'm so sorry you had such a disappointing appointment. First of all, here's a hug for you...
I know what those appointments are like and how much they can knock you down. I'm on Plaquenil only and showing no improvement either in my labs or on exam. I can't take any of the biologics because of a blood disease that makes me more suseptible to lymphoma. The only other thing available for me is Rituxan, and neither my Rheumy nor I are ready to start that yet.
I hope your pain meds work. If the Percocet doesn't there are lots of others to choose from. My pain meds are what allow me to get out of bed. Can't do much, but at least I'm up. I'm just glad that your doc gave you an Rx for them.
Sweetie, I wish I had some wisdom to offer you, but I truly do not know of any new treatments. If my doc comes up with anything on Aug. 8, I'll sure let you know.
I hope you are able to find some good doctors in Utah that have something new to offer you.
Take care,
Hugs and Blessings,
Nini
I am writing to 'third' the AP suggestion! How a rheumy could say you are out of options, when minocycline is listed as a DMARD on the American College of Rheumatology website, is beyond me!! Even if your rheum falls into the 'it only works for mild cases' camp, it certainly is more likely to slow progression than what he did rx!!!At this point the Humira and Enbrel are not options because my hubby makes too much to qualify for assistance, BUT our insurance pays such a little portion, we cannot afford it. It's a Catch 22. It would be great to have better insurance or whatnot - we'll see what happens after our move. Perhaps the new location will bring new healthcare options. I'm going to look into them again anyway - who knows!
I hadn't thought about the AP options. I've heard a bit about that and my Rheumy totally discounts it. But since I'm going to have a different one - I'm going to just as you all suggested and take it with me. I might even mention it to my primary care doctor - see what he says. Maybe I could get started on it before we move.
I'm also going to find a doc before we go - thank you grammaskittles for that suggestion. I forget how very long it takes to get in to see someone! That way I'm prepared!
Yikes! You should hear the terrible storm raging outside! It's definitely monsoon season. I be that's also affecting my level of ouchy. The wind is incredible! Just heard a big THUMP on our rooftop. Hoping the air conditioner is safe. Yikes!
Thank you all again. I cannot tell you how much your kind words and support mean to me. You are truly a light in my otherwise dreary day today. Thank you so much.
Many hugs,
Jen
Jen, I am feeling for you and like the others, send you lots of hugs. These ones from the other side of the world I hope your insurance coverage improves in Utah.
Hugs, hugs, hugs. I'm pretty new to the disease, so I don't have much advice to offer. The other friends on here are much, much more knowledgable. All I can give you are my air hugs and the fact that I'm thinking of ya. Keep your chin up - always!
Yes, check with your local PCP and see if you can start sooner. And please ask questions here or at the Roadback! There are many people who are going down that same road and are willing to help you. We all have to help each other with this. It's not an easy road, many times it's 2 steps forward one step back - but you WILL get better! See if the PCP will prescribe Minocin DAW (dispense as written) so you can get the brand. Generic will work - but get the big guns in the beginning before you move!
Thank you Gramma for making the suggestion. Hugs and Kisses!
Nini - run a Google search on lymphoma and mycoplasma. Big connection. AP should really help.
Sparkey - now you know I'd say 'do AP in the beginning before any of the other stuff'. (wink). LOL
Pip
Awwwww Jen, soooo sorry you have doc w/ small brain pan. There is always new drugs, new combonations. Leaving the docs office in tears is the worst feeling in the world. That's when you feel most alone in that situation. Shame on that doctor. Hugs from me too gal. You should turn the doc on to this website, maybe he'd learn a thing or two. Schmuck. Feel better.Monk -
Small brain pan! Oh, LMAO
Pip
Hi dear, Sorry this is such terrible news. How can any doc say, 'i can't help you'? I have never heard of such a thing! I hope your move to Arizona will give you a new perspective, new doctors to give you hope, and you will feel better in the warmth. I feel better away from this dumb fog on the coast of california. I would love to live in Arizona. Let us hear how you are doing. LyndaThank you all for the hugs and understanding. Hi Lynda, actually we're leaving Arizona to go to Utah. :) I've lived in Arizona all of my life and swore I would never leave. Lately the heat has been unbearable and I've been missing my brother something fierce. My mom is getting older and we all agree that we should live closer together. Therefore we are taking my mom and moving up closer to my brother and his family. I'm hoping that the cooler weather might feel good on my inflamed body! You never know!
Arizona is lovely - but lately it's just too much heat. It's monsoon season and the humidity was 46 percent yesterday - ugh.
I was thinking about my discussion with my Rheumy yesterday and I think what annoyed me the most was when she said, "Well, you have not responded to any medications up to this point." She said it like it was my fault or I wasn't trying. You know what I mean? Sort of the head tilt with that "look".
Okay, I know today is a new day and I'm going to move on from that unpleasantness. Thank you all of the hugs and good thoughts and ideas. I am looking forward to the next chapter of my life and have high hopes that it's going to be much better with new opportunity. Thank you all for helping me see that. :)
Hugs,
Jen
My last Rheumy said the exact same thing to me, & I put up with it way too long (12yrs) Everytime I went to see him, he would tell me he didn't know what else he could do, nothing I tried helped, refused to give me anything for pain, saying I would just abuse my joints, or get addicted.
You'll be glad to be rid of him!! And never put up with it again. I have been on everything too & after all this time still haven't found the right thing but at least I'm not told I'm a lost cause!
(((HUGS))) Jen
Have you tried looking into any of the prescription assistance programs? There is help out there even if you have health insurance. Here's a few to get you started if you're interested. Hang in there and good luck to you.
Peace & Love...Neasy
Ah, Jen, what a nasty experience you had. I feel for you.