which doc has "big picture"

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Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 7/14/2007 5:39 AM (GMT -6)   
Hi Everyone,

Hope you all are having a good weekend. I'm up early today as my daughter is flying home from Morocco and I am nervously trying to track her flight on-line (it hasn't left yet). She's been there for 6 weeks living with a host family and studying the Arabic language.

Anyway, it is now a little over a year since I was diagnosed with MCTD and I am fairly stable at this time and so, so much better than a year ago. Now I am just trying to do my best with the my situation. But, at my last visit to my rhuemie I got very frustrated (sound familiar). Her answer to my recent increase in pain was to take more prednisone. I fought long and hard to get it to 5mg a day and I don't want to take more. She said no to a prescription for an NSIAD and no prescription for an anti-depressant.

The anti-depressant as long term pain medication has never been properly explained to me. Three different doctor were involved as I moved from amitryptyline, nortryptyline, prozac to paxil. Paxil caused weight gain so I got off it. Now my Raynauds is worse (as a consequence I think) and I have more pain (major joints and muscles) and my rhuemie acts ask if it is not her problem. I started down this particular med road due to sleep issues which remain unresolved.

So, I've already moved my sleep issues (no results from the sleep test yet, just a copy of the bill -- oh my) from my rhuemie to my PCP and I guess I have to move my anidepressent issues there too. My PCP was the one that prescribed the Paxil because I asked her to!

While I am perfectly happy to have the "big picture", I just wish I had a doc who had the big picture with me so that I could put the pieces of my survival puzzle in place with somebody helping. Now I have a therapist also so we can add her to the mix. I also see my hematologist every 6 months. He was the first one to help me resolve things and I don't want to give him up (though he points out that I don't really need a hematologist).

Do you have a doctor that puts it all together? or are we all the here trying to do that for ourselves?

Thanks for reading,
Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Paxil (10 mg, replaces Prozac), AmbeingCR (12.5mg)

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 7/14/2007 8:47 AM (GMT -6)   
Excellent question. I have both the rheumy and the allergist really pushing the pred - like you, I have fought to take as little as possible and want to keep it that way. Right now, it is 7.5 mg a day, and I hate the stuff. I do take prozac (from primary doc), as a pain reliever. The way she explained it, the prozac doesn't really do anything for the pain, per se, but it helps keep me on a more even keel so that I can deal with the pain better, myself. Clear as mud, right? I am allergic to aspirin, nsaids, and virtually everything they have tried for pain. Figures, right? One thing I swear by is Ambien CR. When I take that before bed, I get a good night's sleep. It is rare for me to sleep at all the rest of the time. Both my allergist and rheumy have strongly encouraged me to take the Ambien CR every night if need be, b/c a good night's sleep goes a long way toward fighting the pain. So far, they are right. Sorry this is so long.
Hope you feel better!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Meds: Plaquenil, Zyrtec, Prilosec, Nasacort, Prednisone, Prozac daily.
Meds: Epinephrine, Benadryl, albuterol (as needed).

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/14/2007 10:00 AM (GMT -6)   
Sue, I agree that we all need docs who see the big picture. I guess in my opinion it should be a person's PCP. I see the pcp as the hub of a bicycle wheel with all the spokes leading out to various specialists. Idealy your pcp should know about all aspects of your health and should be sent reports from any specialists. I know my rheumy wants to only deal with a small part of my health and only issues related to lupus. But, like your rheumy he seems to be a little hesitant on the pain management department and the sleep department. I had an amazing pcp who knew me and my health inside and out and she helped a lot with issues my rheumy wouldn't. Unfortunately she quit and relocated, so now I'm hunting for another good pcp.

I'm not exactly sure how the antidepressant help with pain - I think it is like what Fran described. Also a lot of people with chronic illness seem to have low levels of the "feel good" chemicals in the brain. I know for me, the amitriptyline has helped with my sleep, my pain and my mood.

I bet you are eager to see your daughter and I hope her flight goes smoothly and she is home soon.

Take care and have a great day.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 7/15/2007 8:49 AM (GMT -6)   
Fran and Hippi,

Thanks for the replies. I guess I need to reorganize my thinking to shift some items to my PCP. It's just that my rhumie originally did these things for me. Fran, so glad the AmbienCR works for you. I still wake up 4-5 times a night on it but can go back to sleep more quickly. I wonder what the sleep test results will say. Hippi, yes, I recall now your mentioning on other threads about needing a new PCP. Good luck in your quest. I'm not thrilled with mine but she doesn't hesitate to address any issue I bring up as opposed to my rhumie who dismisses many of the items on my index card list.

Tracked my daughters flights home from her International experience (through the college she attends -- she lived with a host family and it was a great deal) and she is upstairs asleep so I am less stressed.

Hope everyone is having a good weekend,
Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Paxil (10 mg, replaces Prozac), AmbeingCR (12.5mg)

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 7/15/2007 9:33 PM (GMT -6)   
In the end we need to put things together. I have great doctors but I make sure they are all informed about all the issues.  It would be too easy for one of them to overlook something that is not normally their concern.  A lot will depend on how capable and interested your doctors are in you. 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (7mg & tapering), 100mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 7/15/2007 9:33 PM (GMT -6)   
Well, for me all the doctors I go to, will write notes to each other....so, they all are informed with all my issues. My rheumy sends notes on my check ups to my pcp and all my others doc's I see I make sure that they send notes to my rheumy and copies to my pcp...That way hopfully I don't full through any cracks...

Best of luck with you daughter caming home....My son is due back soon from being in Spain for 6 mos
Enjoy what you can today and leave the rest for another day.

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 7/16/2007 8:26 AM (GMT -6)   

Very good question, and one that we all have/are struggling with even now.  For years, I depended on my rheumy because I did not have a PCP that was even remotely interested, and in fact, had suggested that nothing was wrong.  Why was I even taking enbrel and mtx?  so for a long time, I used my PCP as a source for referrals to specialists only.  As a result, I never had anyone actually coordinate my care.  It wasn't until I went to an infectious disease doctor that the pieces were finally put together, and I realized that I needed to find a PCP who actually wanted to coordinate my care.  Now, I do have a new primary, and thanks to my infectious disease doctor, the new PCP is fully informed of my weird characteristics and complicated history (it always sounds better coming from another doctor rather than telling him/her yourself).

I agree with hippimom--it should be the role of your PCP.  Specialists do not want to be involved with that unless they absolutely have no choice (as in a life-threatening situation).

I would find yourselves a good primary (internal medicine) doctor.  I've been warned about going to a PA--AI disease is too complicated for a PA.  My primary is not an internist, but he is well-researched and very thorough.


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/16/2007 10:58 PM (GMT -6)   
I think that most docs are afraid to treat us, they give us what the text book says, prednisone. I have never found prednisone to do anything for pain, particularly, though cortisone helps, I don't react well to prednisone as a whole. Your doctor might not be realizing that giving prednisone all the time does have repercussions on your health and can cause adrenal insufficiency and other endocrine problems. As for antidepressants, I am of the position that they do absolutely nothing for pain, they merely make you not realize that you are in pain, they short circuit the pain response before it reaches your brain and in other words, you just don't care. You are still in pain and damage is still being done to your body. I think they mask problems and often help people overdo it, because your mental frame of mind may be that you just don't have time to be sick, and so you just go on and do too much.
We feel pain for a reason, it is a protective response, and we don't just feel it for no reason or because we are mentally ill or too sensitive. Just because medical science cannot explain why we may be in pain, does not mean there is not a valid medical cause for it. You have a right not to suffer, not to be in pain.

NSAIDs are very hard on the liver and I'm not a big fan of them for that reason. Tramadol is a non-narcotic pain reliever that is not an NSAID and acts like a narcotic but does not cause respiratory side effects. It is effective long term on chronic pain and I've used it for years and it is non-addicting. I've found you do need to get a few doses in you and keep it in your system daily for it to work best. I have never found a doctor that would not prescirbe it on request, it is a very reasonable medication for chronic pain.

On the anti-depressant side, I think they are estremely addicting, difficult and dangerous to quit, not effective for pain or as a sleep aid--often causing strange dreams and difficulty waking fully, bad on the liver and kidneys, easy to become allergic to, bad side effects including personality changes, and just a way for docs to dismiss patients. For people with real psychiatric conditions, some medications are effective, but I just think they are a doctor's way of avoiding prescribing proper pain medications. Usually, a doctor that will not prescribe appropriate pain medications has a problem with their narcotics license or their license in general and is probably a screwed up doctor.

Another medicine that is used for restless leg that is also used to treat bipolar disorder is klonopin. It's a benzodiazapine and addicting, but it helps me sleep and keeps me from being depressed the next day. I take a very low dose, 1 mg and have been on that for five years with no desire to increase, but I am definitely addicted to that dose. I'm allergic to most antidepressants but have tried about twenty. Have they checked your thyroid and antithyroid antibodies--they need to check both.

I would find a doctor that you can see regularly that is sympathetic and understanding of your situation and will give you what you request, if your requests are within reason. While this doctor may not be the best diagnostician or have a ton of degrees and board memberships, if he or she has a heart, they are a very valuable member of your medical team. Usually these docs don't work in the big medical centers. My primary care is very sweet and though she's missed the boat on diagnosis a few times, she manages my regular blood work fine, is willing to treat my chronic pain and post surgical pain, will refill any of my regular meds from other docs if I need her too, and listens and will refer me out and is a very kind person.

I hope you find a good doc or get your docs to give you what you need and listen to you. Your requests are not out of line. I wish you the best and hope you get what you need. Sending good thoughts your way.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/17/2007 12:35 AM (GMT -6)   
Sue, Great question. I agree with Hippi about the PCP being the hub of the wheel with all the specialists being the spokes and reporting back to the PCP. I'm fortunate to have a very good, very thorough, very interested PCP who goes through my chart every time I go to see her, which is quite frequently. She refers me to specialists and makes sure she gets lab results and reports back from them. Since she's the referring doctor, the specialists are more likely to work with her, plus they are doctors she knows and has worked with when dealing with other patients. It's an excellent system and really works for me.

Hippi, I sure do hope you can replace the PCP you liked so well. I suppose you have your chart from the old PCP to give to your next one. I'd be lost if my PCP relocated, and I know you must feel that way.

And Sue, just because you don't need a hematologist right now doesn't mean you have to drop yours. He's just on the back burner for the time being until you need him again someday. That's how I feel about my oral surgeon. I hope I never need him again, but in the event I do, I'm still his patient.

You're on the right track and I wish you luck in putting it all together.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 7/17/2007 10:48 AM (GMT -6)   
Thanks you all so much!

Good information here and you are all helping me to form a plan. Right now, I am actually feeling pretty good. I have a therapist appointment this afternoon (this is new for me, only my second time) so I will "use her" as a sounding board (she's a psychiatric nurse as well as a counselor). I think I was relying on my rhuematologist to have the big picture (and she clearly does not want to). I like my PCP (Elcamino, she is an internast!) well enough and I think she will give me medications (within reason) and I will work on her being the "hub" (thanks Hippi) while keeping in mind, as Bill said, that we are responsible, in the end, for putting it all together for ourselves.

This leaves me with the NSAIDs/anti-depressant questions. I decided to give up the Paxil because of weight gain and just "did it" (20 mg a day down to 10mg a day for two weeks then cold turkey). I have more energy than I have had in months! So, I think (listening Marji) that I may just stick to taking neither of them unless the pain is "too bad". So, in more pain but have more energy, at the moment, seems good. Oh, and Patty, I have an appointment with my hematologist in Oct. and have taken to seeing him every six months. I actually look forward to my visits as he is such a wonderful person. He had me come in (now over a year ago) so he could hold my hand while he broke the news that I (with bad Raynauds and an ANA off the charts) needed to see a rhuematologist because he suspected I had Lupus and he was the one who recommended getting a second opinion and the doctor to get if from when my (local -- now I drive a distance) rhuematologist wasn't working out.

Stay Strong and thanks for all your support,

Frank -- hope your son's trip goes smoothly. I spent the day watching the tracker as the little airplane icon moved across the Atlantic and got to breath a huge sigh of relief when it landed at JFK.
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg), Imuran (2X50mg), Prilosec (20mg), AmbeingCR (12.5mg some nights)

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