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Aimee (Aims)
Posted Saturday, November 07, 2009 9:53 AM


 

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Last Thursday Michael and I go to Nashville for my RD visit. We talked to him about the level of pain I was in and how we felt the pain meds were just not doing what they needed to be doing. I am on Percercet(sp) 10 4x a day and most days take more. This is a script that has to be picked up and signed for unlike Lortabs. Beings we are 2 1/2 hours away from Nashville, my RD and PCP spoke and agreed that my PCP would write my pain meds. My RD explained since this agreement was made that I needed to return to my PCP and talk to him about how to treat my pain-no problem-WRONG.

We phone my PCP on Monday wanting to know what to do about my pain and how to better manage it. His nurse phoned back and stated he wanted to see me the next day. I was so sick and hurt so bad I wanted to just lay down and die. I went in sweats, hair in pony tail and no make-up. I was barely able to walk and probably should have used a wheel chair. When he comes in the room, he ask why we were there. After we explained why, he looked at us and stated he was not a pain doctor. At this point I start to cry. Then he asked us why my RD was increasing my meds and how long I was going to stay on them! He was speaking about the ones for my RA. Then he asked what we wanted him to do. At this point Michael's ears turned red and I cried harder!!! Michael repeated the the conversation we had with Dr. Gore and how we thought they had an agreement about my case. My PCP then says he agreed to do this on a short term basis and that he was doing us a favor. At this point, Michael let him know that we would drive to Nashville and would not bother him again. All this time he was reading on his lap-top. He finally got to the report my RD sent him about my visit on Thursday. It was like he realized who we were. At this point he couldn't write scripts fast enough. One for Oxycontin and re-filled my Percocet. He then gave us a speech on how pain meds would not cure RA-it would be like taking an asprin for a headache-it just relived the symtoms! Michael asked him at this point if he knew what Rituxun was and that it was used to try to control RA.

We were blown away to say the least. I felt like he looked at me as some kind of druggie. I looked like something the dogs would not have even drug up. We have decided to talk to my RD about this and see what he has to say. I know I should get a new PCP but feel like I am kind of stuck due to my condition. What would you do? Has this happened to anyone else? All Michael could say was you will never be treated like that again.

Sorry for the post being so long but wanted to give a good clear picture of what went on. Your replies would be greatly appreciated.

As always, sending warm hugs and love,
Aims

.8cc mtx, Humira, folic acid, prednisone, trazadone, ultrum 300, lortab 10, cymbalta, lasix, hctz and cal w/ vit-d
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Jay in Sarasota
Posted Saturday, November 07, 2009 10:29 AM


 

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Hi Aims,
I’m sorry to read what a hassle you’re having. I’ll try to briefly tell you what I’ve gone through to get a pain plan down. I told my RD (with my wife along) that I was coming up short on controlling the pain I was having and asked if he would refer me to a pain doc. He did and I had two visits and ended up getting 4 hydrocodones a day instead of 3 – and each office visit cost me nearly $200. I asked my PCP if she could just be in charge of my prescriptions and even the PA at the pain doctor’s office thought I was nuts to pay them $200 a visit. So my PCP who is also a friend takes care of my prescriptions. We had a thread about pain pills here a while back and I’m pasting my response from that below. So many people talked about fear of addiction etc. but my experience has been that if you know how many pills you’re prescribed a day and you never take more than that (and always try for less) you are hardly an abuser. The only thing close to taking a pain pill when I might get by without it is when I go to the dentist. I don’t think that’s exactly recreational drug use. I’ve also been baffled by the logic I’ve often seen of the drugs “only masking” the pain. Isn’t that better than experiencing the pain! Here’s my entry to the aforementioned post:

"I’ve finally worked out a pain management plan that gets me through the day pretty well. This might be too elaborate for many people. I take one half of a hydrocodone (7.5/325) starting at 0700 and take another half every 90 minutes with the final one being at 7PM. That makes a total of 4.5 a day. I also take a total of three Dilaudid (hydromorphone 2mg) per day, one at 0730, 1030 and 1330 (1:30PM). The Dilaudid made a real improvement in my ability to handle stressful or complex situations. I sleep well and want all the drugs to wear off by nighttime. I made a nice graph of this pain plan which shows time (24 hours) across the bottom and symbols represent each pill or half pill and lines extend across from the symbols to show how long I believe the pill is still affective i.e. 90 minutes for each half hydrocodone and 3 hours for each Dilaudid. Neither my RD or PCP seem concerned about the amounts I’m taking and both just seem pleased to see that I’ve devised a plan that works for me. In fact I think they found it interesting to see what was working for me and how I have two drugs staggered to level the affects. Before this I was using Tramodol and Ibuprofen but not getting by well at all."

I hope you get adequate relief soon. Your being in pain does no one any good. (Sorry I wasn’t too brief here after all.)
Jay
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Gramma
Posted Saturday, November 07, 2009 10:59 AM


 

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Hi Aims,

You have been on these drugs since last November? If you are still in so much pain, there is something wrong. I agree your PCP was boorish and insensitive, but it seems to me that someone on your medical team is missing something. Have you started Rituxan yet?

The best way to control your pain is to stop your disease activity, and if the dmards you're taking aren't doing it, then try another one.

Being "elderly," I have a high pain threshold, and get dizzy and nauseous with most pain meds, so I can't relate to your pain. But I can tell that you are truly in agony, and I feel awful for you. Is there a rheumatologist closer to your home? I understand you are fond of the one who treated you from the beginning, but I was just wondering if you could put together a PCP/rheumatologist team who can treat you in cooperation with each other. I realize that's not an easy thing to accomplish. They're all sovereigns in their medical practices, and it's rare to find one willing to play nicely with the other.

It just seems to me that you are suffering unnecessarily, and as a grandmother, I want to fix it for you.

I hope you can get this straightened out, and perhaps find a new PCP at the very least.

Hugs, Spoons, & Prayers,

Gramma Ellie
Post #4258315
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Aimee (Aims)
Posted Saturday, November 07, 2009 12:23 PM


 

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Jay I really like the way you have scheduled your pain meds. I really think I am going to give it a try to see if it will work for me. Thank you for getting that spread sheet to me and Michael. I think it will be so very handy.

Gramma I totally agree that my RA is out of control. I have tried Enbrel and Humeria but neither worked and I had to stay on both for 3 months. I start my infusions on the 19th. We do not have a RD in Paducah so I was able to get a referal to Vanderbilt and took it. I am hoping after I start the infusions I will not have to have this type of pain medication but I am afraid that there may already be damage that Rituxan will not help.

One thing I will say, I have never lied to either doctor about me taking more pain meds than they have written script for. I have even been able to tell them the days I have taken more and why. I have been telling my RD through visits and email how bad I am doing and how bad my pain has been. I really did not like bringing in another doctor for my pain meds. Even though I have been going to my PCP for over 10 years, I felt strange about him taking over this part of my treatment.

Gramma I would love for you to fix me! I have just been so sick for going 3 months now with no relief. I'm tired so very tired. I just didn't need someone that I trusted to treat me this way.

Thank you both for taking time to respond.
Aims

.8cc mtx, Humira, folic acid, prednisone, trazadone, ultrum 300, lortab 10, cymbalta, lasix, hctz and cal w/ vit-d
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Grandpavan
Posted Saturday, November 07, 2009 12:25 PM


 

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I agree with Grandma Ellie. I'm not impressed with either your PCP or your rheumatologist from what I read. Some people just have bad luck with doctors and you sure seem to be one of the unfortunate ones. I hope you are able to get both your RA and your pain under control. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
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Captex
Posted Saturday, November 07, 2009 1:19 PM


 

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Aims,

I don't think that the plan to have your PCP deal with your pain issues independently of your Rheumy works. RA is the responsibility of your Rheumy and it, plus the pain issues should remain at that point. All that is happening here is that you have to see a referee, at an additional cost, who plays interference, to get your pain issues under control.

You are the only person in the loop that really understands your pain.

If you Rheumy is not responsive, I suggest that you seek another. It sounds as though your PCP is reluctantly acting, in place of your Rheumy when it relates to pain. It's not fair to you. It only allows your Rheumy to deal with your RA without considering your pain, that sounds cruel to me.

I would be blunt with both of them and say what you feel and get them to justify their positions. If you don't agree, your PCP should willingly allow for a second opinion/referral from/to another Rheumy.

I pray that things work out for you, your battle should be with RA, not with your doctors.


God Bless,


captex

I'm off Prednisone! and off Bactrim, currently taking Atenenol, Albuterol, Glipizide, Lozol, NOMORE NSAIDS and trying to lose the 30+lbs that I gained recently from Prednisone. Just added Arava. Diagnosed with RA in 1982. Fighting ILD. I'm dealing with my Diabetes and I've only begun to truely understand RA.
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Barbara Schwefel
Posted Saturday, November 07, 2009 2:44 PM


 

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Hi Aims,
Now you really have me thinking.My rheumy would like me to do the same thing!hmmm.What is wrong here?I know I'm just recently diagnosed and I can't take prednisone,so that means I shouldn't take anything else either.When all this first started for me,I couldn't get in to see my regular pcp.They ended up having me see his PA.What a nightmare. I was crying sooo bad from the pain in my shoulders I really couldn't stand it.She said to me if you're here for narcotics you can show yourself to the door! Imagine the look on my face!
Do they really think we're making this pain up?I'm not even going to go or get to the point where I think I'm an addict,After all,I only take them when I need them.And believe me when I say,I really need them.I have only two Hydrocodone left and I feel I have to use them so sparingly that if I don't I may not get more.I have been on these for about six years.In 2000 we had a motorcycle accident that I've had back issues.I'm praying to GOD that now with the RA it won't be as hard.My answer to the PCP is going to be "If I didn't have to take them I wouldn't" I'm glad you got what you needed,but for you to go through that is wrong.Thanks for sharing this with us and I am looking forward to seeing what my PCP has to say about my meds.LOVE,HUGS,and PRAYERS Aims!!!!

A SMILE IS THE LIGHT IN THE WINDOW OF YOUR FACE...IT LETS PEOPLE KNOW YOU'RE HOME.

Author unknown



Diagnosed 08/09 Am currently on Methotrexate,Folic Acid,Nebumetone,And Hydrocodone for pain.
Post #4258427
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teacherrobin
Posted Saturday, November 07, 2009 3:52 PM


 

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Aimee, you're going to have some site mail in a few minutes from me.

Robin
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MaryFran
Posted Saturday, November 07, 2009 4:09 PM


 

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Aims - sorry you had such an awful visit with your PCP. I was surprised when yo said he's been your PCP for 10 years. One would think he'd know you by now and know you don't fake pain when you have RA. And then his change when he got to the bottom of your records on his laptop and found the information from your rheumy. What a jerk. If you stay with him, maybe next time you tell him to read the records before you tell him what you are there for. Sometimes I think these docs have to see so many patients in a day that they can't keep us straight. I'm so lucky to have the Kaiser system where all the docs are connected and have access to my full records on each visit. I don't have to sit there and go through telling them what I'm being treated for - they just look at the screen that tells them all the current and past issues I've had. I really like their system and hope it does not change with any new plans the government has for us. Hope you find some relief soon.

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
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Grandpavan
Posted Sunday, November 08, 2009 1:08 AM


 

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Barbara, you are running low on your pain medication and I recommend that you get a refill now instead of waiting till you really need it. At the rate it takes to get new prescriptions for pain medications you might need all the time you can get. I hope that you never need any pain medication, but if you do, I hope you have a ready supply. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
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Liz M
Posted Sunday, November 08, 2009 11:48 AM


 

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Oh, Aims! That is tough! I have cried at the doc, too. They just don't get it sometimes! It is so frustrating to deal with more than one doc and they don't communicate! I understand that sometimes pain can be a marker of how the RA is being managed, and thus they don't want to mask it, but we shouldn't have to live in pain! No one should! Just wait until one of those docs has chronic, unbearable pain and see how they do with the pain meds situation!!! UGH!

HUGS!

Liz xoxo
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Meridith
Posted Sunday, November 08, 2009 5:49 PM


 

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Oh gosh Aims,

I am so sorry you are going through all this pain. I don't know if you can change doctors or not. But I def. wanted you to know I read this and feel so bad that you are in so much pain. I would not let them leave me like that for sure. They have to get you flare under control. I love that fact that you hubby is with you and helping you. Just know you are in my thoughts. Let me know how you are tomorrow and if you can't type it I understand. Maybe your husband could for you.

In my thoughts and hoping the pain lets up soon,
Meridith
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Tommy4
Posted Monday, November 09, 2009 8:27 AM


 

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Aims,

I would get a differant Rheumy and PCP I have never went without pain meds my original rheumy who I had for 15 years said pain meds were for pain they dont do any good sitting at the pharmacy if people in pain need them.

Tommy
Post #4259277
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Tommy4
Posted Monday, November 09, 2009 8:30 AM


 

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Barbara,

Wouldnt hurt if you had a understanding docter also I use a schedule similar to Jays my Rheumy always said better to take a little at a time then to try to catch up when you are in severe pain.

Tommy
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Bekah M
Posted Monday, November 09, 2009 10:02 AM


 

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First, (((((AIMEE))))) I feel so bad for you my friend

This last visit with my PCP I had to see another doctor at the clinic because she was out sick. He tried everything in his power to trip me up on information questions, like he would ask me in several different ways how long I'd been on Lortab, I caught on and told him, "Hey, she provides me the pain scripts as per her agreement with my Rheumy, so whatever she has on that laptop about my pain is what sticks"...He agreed that he was trying to be sure I didn't have a "problem"...I told him to let me nails his toes to the floor while pushing his head down with a forklift and we'll talk pain and what he'd like to take for it...He got nicer quickly. I told him to read that I have severe reactions to prednisone and sulfa drug and they have tried all sorts of meds to help me and so far all I tolerate is lortab and plaquenil.

I can tell you that most of what is wrong is all people in different states with loophole laws and shady fly by night pain clinics where everyone,no matter what you have wrong with you, gets 120 lortab, 120 soma, 120 xanax. It's these "quacks" in it for the money that ruin our lives when we have true pain and true conditions that need pain management.

This new doc gave me only 90 instead of my 120 but gave a refill which my regular does not do. I have to call it in each month and pick up a hard copy from her. She called and we talked a good while before I went on my trip and she said that senior doctor wanted her to drop me to the vicodin ES 7.5....She told him unless he was demanding it she would not put me through it..she wants to talk to my Rheumy about putting me on Oxy 10..

I wish I could fix you and me both darling! I love you Aims!



Plaquenil 600mg., Metoprolol 200mg.,, Hydrocodone 10/500, Elavil 100mg, Lisinopril 20mg,Ativan, Omega Complex, Milk Thistle
Primary Lupus and SecondaryRA, Fibromyalgia/CFS, Raynauds, Sjogrens...
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Gramma
Posted Monday, November 09, 2009 11:50 AM


 

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Dr. Billy Dean Bailey
578 Huntleigh Ln
Paducah, KY 42001
(270) 528-5774


Dr. Amar Sawar, MD
405 Rushing Dr
Herrin, IL 62948
(618) 549-1727
23 Years of Experience

There are a couple of arthritis doctors listed in your area. I don't know what their reputations are, but it's something for you to look at. (For all I know, they may have moved away.., internet listings aren't very reliable.)

Good luck, my dear. Something has to improve for you soon.

Hugs, Spoons, & Prayers,
Gramma Ellie
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Polly Sue
Posted Monday, November 09, 2009 1:13 PM


 

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Aimee,

This all sounds perfectly insane! I have been around for a little bit now and I do not understand why your/anyone's PCP would be in charge of medication for a disease your rhumey is treating you for?

I know this is the case for many of you and it just doesn't make any sense to me? I would either pressure the rhymey to provide pain management or seek a new rhumey that is willing to to manage all aspects of your disease!!! The only other choice would be getting a pain management specialist!

I fully understand that its takes several weeks to determine if drugs are going to work for a person but there are so many ways to manage pain and inflamation that I hate to read posts like this NO ONE SHOULD SUFFER any more pain than is absolutely necessary!!!!Gosh honey if you need pain meds to get you through till they find something that works for you then so be it! If you still need some pain management afterward then so be it! That's what the developed such great medication for!

Remember the doctors work for YOU!!!

Susan (pollysue)
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Chrissie
Posted Monday, November 09, 2009 6:13 PM


 

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I have nothing much to add besides:

*HUG!*

_________________________________________

28 y/o - Diagnosed: April, 2009.
MTX (15 mg/wk), Enbrel 50 mg/mL autoinjector, Naprelan (500mg), Prometrium (200mg), Supplementing Folic Acid and Vit D
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Bekah M
Posted Tuesday, November 10, 2009 2:27 PM


 

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AIMS...How are you feeling hon? I have been praying for you to get some relief! I know it's hard to feel pain and feel that the doctors aren't getting it. You may have to tell yours what I told the substitute I saw a couple of weeks back...I asked him if I nailed his toes down and put a crane pushing his head down what would he ask for, for the pain. As many say here, the doctor works for "you"....We often forget they are our employee's and we pay a lot an hour!

Love you Aims...Let us know if you are okay!



Plaquenil 600mg., Metoprolol 200mg.,, Hydrocodone 10/500, Elavil 100mg, Lisinopril 20mg,Ativan, Omega Complex, Milk Thistle
Primary Lupus and SecondaryRA, Fibromyalgia/CFS, Raynauds, Sjogrens...
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