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Is rheumatologist necessary?

Started by Way2dry, April 04, 2017, 09:27:55 AM

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Way2dry

April 04, 2017, 09:27:55 AM
I am so frustrated with the lousy rheumatologists I've seen that I decided to give up and just see my pcp as needed. 

At this point I "only" have severe dryness and most likely Hashimoto's.  No one seems interested in investigating why my "spit" meds suddenly stopped working - like maybe my salivary glands are already destroyed? Or why I can't sleep. They don't think dryness is a problem even though it makes me quite miserable. 

Does anyone just see their pcp? How is that working out for you?
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

SunshineDaydream

#1
April 04, 2017, 10:28:14 AM
What med were you taking that stopped working? Did you happen to switch between brand name and generic or between different generic brands? If so, that may have made a difference.

Another board member and I had an experience where a generic brand we were using was not as effective as a different generic brand we previously used that worked well. After realizing this, I have requested my pharmacy only fill my prescription with the generic brand of Evoxac that works for me (Ranbaxy).

Something to look into regarding whatever med you are taking if you haven't already.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Way2dry

#2
April 04, 2017, 11:41:00 AM
Sunshine - thanks for your suggestion.  I have tried all that.  I even stopped taking it for a while in case I might have built up a tolerance to it.

I really don't like my current rheumy and the only recommended ones are not taking new patients.  So I was wondering if there is anyone who is managing this disease using only their primary care doctor.  My co-pays just went up, so if I could drop this guy, it would save me time & money. 😊
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

wendyoh

#3
April 04, 2017, 11:57:06 AM
If you have a PCP that is open to experimenting with ideas for sjogrens etc you should be fine....some of them like to stay informed outside of general practice  and do the treating and others always refer to specialist...or I think sometimes it depends on politics of the managed care pgm they are connected to

where I am the tendency is becoming to refer out a lot, whereas my doc at a different HMO preferred to do it all himself if he could and agreed with you. I think a lot of us know more than the doctors because of sharing at these forums so if you know what you want it doesn't hurt to ask your PCP............
sjogrens, cervical stenosis, bulging cervical discs 4 level, DDS, DJD, emerging vertigo, cfs, fms, gerd, plantar fascitis, corneal erosion, some other stuff :)
not trained in medical field so just share my experience and opinions as a consumer and lay researcher trying to get more well-ness

irish

#4
April 04, 2017, 09:16:33 PM
I don't see a rheumatologist but I do see an immunologist and would not be without him. I also see dermatology, neurology, gastrointestinal and ENT on a regular basis. I also have a primary that sees me q 3-6 months depending on how I am doing. I have Sjogrens and 4 other autoimmune diseases.

I also want to let you know that insomnia is very common in autoimmune disease. People with Sjogrens seem to have a very high incidence of it. Many people take a low dose of an antidepressant for sleep instead of sedatives or sleeping pills. Seems to work better on a routine basis.

I have seen several rheumatologists without very good luck, but then, I have seen a whole lot of doctors over the years without very good luck. It is hard to find good docs but when you find them hang on to them. Good luck to you. Irish

warmwaters

#5
April 10, 2017, 08:02:55 AM
I had a couple of mediocre rheumies before I got a good one. So I hear the frustration. I did try using my PCP as one of my key resources, and my PCP said he was totally up for that.  However, in truth he didn't have the time to deal with chronic illness because of the way the health care system he worked for had such short appointments. Because of my various issues, even a more or less routine visit is 20-30 minutes because we have to check previous bad reactions, etc etc.

So make sure your PCP is ok with this before you assume it can be done.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

irish

#6
April 10, 2017, 03:22:56 PM
I have to add that I get sick of having so many specialist, but there are times when my internist tells me she has run out of ideas and then low and behold my neurologist will figure out what is going on. With autoimmune disease it takes a lot of time for appt (30-45 minutes) a lot of the time and it takes a lot of time just telling the doc what is going on with the symptoms, etc.

Autoimmune disease is never boring and we know that if it isn't one thing it is another. Sometimes it can be the most simple thing that can cause us problems and those simple things can be the hardest things to figure out sometimes. Good luck. irish
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