I think I need to see the rheumy again

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jeanneac
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Date Joined Feb 2009
Total Posts : 1812
   Posted 6/2/2010 7:31 PM (GMT -7)   
I saw a rheumy about 8 weeks ago. He gave me plaquenil and I am still having bad days of pain. Think I should call back and go in to see him? I don't think it is working. I don't have a follow up apt until July. Kind of a long time for a follow up apt. 3 months. I am tired of being in pain. What is the next step of therapy for mixed connective tissue disease to get the pain under control? How can they tell if it is the auto immune disease or fibromyalgia or possibly both? I know the diagnostic criteria for fibromyalgia and I think it might be both. In the past cymbalta seemed to help me but it gave me anxiety and insomnia, so I switched to wellbutrin. It isn't doing a thing for my pain. Any advice?
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 6/2/2010 7:55 PM (GMT -7)   
First, I don't have Lupus or MCTD-I have RA.
Second plaquenil is pretty much essential for MCTD. It may not be enough on it's own.
Definetly call your Rhuemy and ask what else can be done. The medications for autoimmune disorders do not directly address pain. They address disease process. Sometimes pain is a symptom of active disease but sometimes it is a symptom of joint damage which means that the meds won't fix it.
Talk to your doctor because it really sounds like you need a combination of meds.

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 6/2/2010 7:58 PM (GMT -7)   
Hi Jeanneac,

So sorry you're dealing with so much pain. Plaquenil usually takes up to 6 months to really kick in and see improvements. I've been on it for 10 months and I don't see any improvements at all. Maybe you need to give it a bit longer of a try?

I have Lupus and Fibro. Getting the diagnosis of Fibro was easy for me. I had all 18 tender points plus a bunch of extras. I also noticed that when I took more prednisone to help the pain, the pain actually got worse. That was a red flag to my rheumy that my pain was fibro and not Lupus (most of the time anyway). Prednisone and Fibro don't go well together. Takes a fine balance.

Definitely bring up the fibro possibility with your rheumy. There are a few different meds that do help. Lyrica, Gabapentin are two that pop into mind. Gabapentin works very well for me.

Good luck!
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/2/2010 8:14 PM (GMT -7)   
Thanks Ginny. That was good info. A few months ago, I had to take prednisone for just one day as pre medication for a CT Scan and it made me feel like a new person. That doesn't sound like fibro then..... Sounds like I need to go back to see the rheumatologist to get out of this pain.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 6/3/2010 6:29 AM (GMT -7)   
I find that if I'm on an increased prednisone dose for only a few days, my fibro doesn't flare up. It's the long term prednisone use at increased doses that make fibro go crazy. So, you might still have fibro. Hard to say. I know this is complex and frustrating. Hope you have a better day today. blush
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/3/2010 3:04 PM (GMT -7)   
Thanks Ginny. It seems that when we get these afternoon thunderstorms, I start hurting! I can't take NSAIDS or aspirin. I went back on cymbalta today in hopes that may help with the pain. If not, I am back at the rheumy. I ran into my dermatologist today and she wants to biopsy my rash again. Maybe there will be an answer there and I hope it isn't a bad one. There is some skin lymphoma they were a little worried about. Apparently, the biopsies are not very conclusive. They said it was skin scleroderma but had a ? by possible skin lymphoma and lyme disease too!! I just want to be out of pain and fine the skin biopsy is not a skin lymphoma.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/3/2010 5:18 PM (GMT -7)   
Plaquenil took a good 4 months to start working for me and even then it wasn't until I stopped taking it that I noticed what it was doing.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/3/2010 5:38 PM (GMT -7)   
OH my!! Maybe it was just a coincidence but the first time I took it, the next morning I felt great. Right now, we are having unstabile weather with thunderstorms every day. I think this is what has me hurting so much. It starts in the afternoon at the same time that the storms do!

Puccini, what sort of symptoms did you have in your mouth with Sjorgren's? Do you have rashes with it as well? I went to the dentist a few weeks back and while I was there I asked her to look in the top part of my gums b/c it was sore there. She was it was a blocked salivary gland. Can that be a symptoms of Sjogren's? Should I get it biopsied? It is not going away. I've had a very dry nose at times with sores and bleeding. I am tired of feeling poorly without a "real" diagnosis. So far, he just says it is a mixed connective tissue disease. I guess that is a diagnosis...... And I have this skin thing going on and they are going to biopsy that next week. Before, it said it was skin scleroderma. I can't seem to get anyone to agree on anything! LOL....
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!

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