Posted 8/17/2007 10:00 AM (GMT -6)
Wow, sounds like a fabulous rheumy and great appt! I'm so glad you were able to talk to him freely. Sometimes small things on our minds can begin to burden us if we can't talk about it. I really hope his referral works out too. I know that has been a struggle for you. Take care! Oh, and let me know how the Doxepin works. I've tried tricylics and always get horrible side effects. I've never heard of that one though. Right now I just take Lunesta.
Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)

Posted 8/17/2007 11:13 AM (GMT -6)

I'm thrilled that you had a good doctor's appointment yesterday!!! tongue tongue tongue It's great to have a doctor with whom you can talk freely and openly and who shows compassion for what you're going through. I understand now why you like him to much.

I hope that stopping the amitriptyline won't cause your anxiety to come back. My hubby also takes it and I've notice a real increase in his appetite plus weight gain since he began taking it. Crazy isn't it, that you take something to help with sleep and anxiety and it causes you to gain weight which then causes anxiety. Good luck with the new script.

I hope you have a restful weekend and that you continue to feel a little bit better every day. Once school starts next week maybe you can get more rest. Take care of yourself Hippi.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Posted 8/17/2007 11:44 AM (GMT -6)
Hi hippi, glad your appointment went so well. Its good your doc wants to keep you feeling as good as possible. So many docs are like, what's the bare minimum I can do for you to keep you out of the office. I hope the new meds work for you! If not, you might try klonopin, it helps with my neuropathy and sleep, I take it at night before bed, like a valium or xanax, but better.
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

Posted 8/17/2007 12:21 PM (GMT -6)
tongue Hi, Hippi. OHhh, after my most recent appt. with my PCP, it is SO nice to hear about your good one! That is GREAT you were able to go over everything you wanted to with your rheumy and that he was understanding and helpful (even ended with a possible new PCP) . You don't know how much I pray for my rhemy appt. next week to go just like that! I hope you have good luck with that new med. I'm not familiar with that one. Keep us informed. Please also let us know how you do when you begin your taper of the prednisone. I am sure my rheumy will want to taper some more since I am doing okay with the 9mg (aside from the blood sugar ordeal, which I hope I can get his help with too). I am going to mention that every other day taper with the next 1mg drop because it was at the 8.5mg mark last time when the "heart attack"/heartburn feeling came back, and I CANNOT tolerate that one. Wishing you all the best! Thanks SO much for sharing your positive appt...I certainly needed it! yeah
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Posted 8/17/2007 1:51 PM (GMT -6)
Hi Hippi,

I am so glad your appt went well. As you are tapering down on the prednisone, are you doing it in 1mg or 1/2mg increments? Just curious as I am trying to get from 8mg to 7mg. My rheumy has me alternating 8mg one day and 7mg the next for 2 weeks.


dx - sle 2001, fibro 2006, depression

Posted 8/17/2007 2:13 PM (GMT -6)
Great job Hippi! I know how hard it is to speak up sometimes. I am so happy for you that you were able to find the needle in the haystack, a good doctor, I mean. I hope the new meds work out better for you. Never hurts to try something new. I wish you continued progress. Hopefully you won't need to bang your head against a brick wall anymore and this new PCP will be as great as the rheumy. Any chance the rheumy does work on the east coast? Just thought I'd ask. Ahhh, some day. I can always dream for a good doctor. Someday....
Best wishes and HUGS - Kristin
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  

Posted 8/17/2007 9:50 PM (GMT -6)
Woo Hooo Hippie!!

Great Dr. appointment!!!

Its always nice to hear about a caring doctor!! I hope your new med works well for you. Urghhhh!!! blasted weight gain!! I have to REALLY talk positively to myself every time I go for food. It is such a battle, but I'm determined that it is the one non-rx way to help my pain.

Good luck with your switch!!

In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Posted 8/17/2007 9:54 PM (GMT -6)
Thank you so much everyone for your responses. I started seeing this rheumy about a year ago and he was my third one. I was feeling pretty hopeless about getting a diagnosis and getting any help. Luckily one of the members who doesn't post much here, lives a few hours from me and she gave me the name of her rheumy that she said was really great. If she hadn't given me his name, I'd probably still be floundering in the dark looking for a doc that would help me. I was so greatful that he diagnosed me the day he saw me and started me on prednisone which took me from being almost unable to walk to having something that resembled a life again. Even though I have always liked this rheumy, it was hard for me to talk about things like pain management and other things because of some of my bad experiences with other docs in the past. I'm so glad I finally bit the bullet and finally talked about it.

When I do taper my prednisone I'm going to do it 1 to 2 mg at a time, but will stay at each new dose for about 4-6 weeks at a time, while alternating every other day with a little bit higher dose.

For those of you who are still searching for a good rheumy don't give up. I was about to give up before seeing my current rheumy.

I took my new med a little bit ago and I can feel it starting to make me sleepy. Hopefully it will work well for me with minimal side effects.
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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Posted 8/17/2007 10:05 PM (GMT -6)
Hi Hippi:

Yay yeah yeah yeah yeah yeah I'm so pleased to hear that your appointment went well. I'm proud of you that you stood up for yourself and talked about hard issues with the doctor. They can be so imitating at times. I hope the new medication works well for you and that your taper works well too. Hopefully, you won't have any flare ups while you're trying to taper.

Just wanted to pass on some ((((hugs)))) to you and say well done. Please keep us posted on how your are.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Posted 8/17/2007 10:20 PM (GMT -6)
Hippi, I am soo glad your appointment went soo well.  It is great to be able to have a doc be it rheumy or PCP that you feel is really understanding you and your disease and what it is you need from him/her.  Also glad you were able to get a referral to a new PCP.  I know you and I have both been talking about the fact of trying to find a new PCP.  I have an appointment with one next Tuesday that sounds like a good one so we shall see.  Keep us updated on how you are doing.  Sending some hugs your way.

Diane (ocean1)
Primary Biliary Cirrhosis 2007; UCTD 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra, Zantac, Lunesta, Ultram PRN.

Posted 8/18/2007 7:29 AM (GMT -6)
I am so happy for you Hipp. I have to find a new pcp. I also need to decide what I want to do about the huge pain increase I have been experiencing since last night- my nerve block wore off again. I will be asking them to kill the nerve at my next appointment. I cannot take having such a short relief from something that is supposed to last for months. I may call my own rheumy because she offered me darvocet at my apt and I am thinking maybe it was a mistake to wait for the script. I hate dealing with narcotic pain meds but they are a necessary evil for us. I have a similar story about my own rheumy. She literally saved my life because without her I would have been dead in a matter of months. I hope the med change works. Good luck.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Posted 8/18/2007 6:33 PM (GMT -6)
yeah   tongue yeah tongue   Congratulations on getting a compassionate and wonderful rheumy! You had a great appointment. Can you fold your rheumy in an envelope and send him to me???? LOL. My rheumy is only available now one time a week. Scary huh?
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06 (gone after ablation 07), SLE '07, Raynauds '07....Plaquenil,  NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.

Posted 8/18/2007 11:25 PM (GMT -6)
Oh, kitty, that is so sad. There is such a shortage of rheumies! In about six years there will be at least one more, though, my daughter is in pre-med at Michigan State and is focussing on rheumetology. My rheumy has asked her to work in her office during school breaks and next summer. Strange how this crazy illness helped my daughter focus in on her life's work. I hope you can find an available rheumy very soon if your current rheumy's not available enough for you! Audrey Ann
Audrey Ann
Diagnosis: Lupus and RA
Medications: Plaquenil (400 mg), RelafenMethotrexate Injections, Folic Acid, Aldactizide for High Blood Pressure, Lipitor for High Cholesterol, Actonel for Osteopenia, and Allegra & Patonel Eye Drops for Allergies.


Posted 8/20/2007 1:07 AM (GMT -6)
I am sooo glad that our dr can help you,  I told you he was the BEST.  I pop in and check on you sometimes,  just have not posted for a long time.  Keep your chin up.  That goes for all of you!!!!!!
Hope all is well.
Your Friend
SLE 9/99-Autoimmune Hepititis 2006- The list is tooo long for me to type!!  Just ask I will tell.
Most important of the 19 medications is Methotrexate and Predisone.

Posted 8/20/2007 8:44 AM (GMT -6)
Nicki, everytime I see our rheumy, I think about you and am so grateful that you encouraged me to see him. He is such a great doctor. I'd love to hear how you are doing.
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Posted 8/20/2007 9:02 AM (GMT -6)
I am doing good. I had surgery last Wed. My liver was attached to my abdominal wall by scar tissue. All went well. Other than that I doing good.
SLE 9/99-Autoimmune Hepititis 2006- The list is tooo long for me to type!!  Just ask I will tell.
Most important of the 19 medications is Methotrexate and Predisone.

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