Any info appreciated - Reumatologist has given Plaquinil plus other meds

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It Never Stops
New Member


Date Joined Aug 2016
Total Posts : 8
   Posted 8/21/2016 9:04 AM (GMT -6)   
Hello all,

This is the first post on the "lupus" board and I don't really know if I am in the right place.

After many, many years of pain and at least 7 years of pain mgt, 20 plus of fibro treatment, and failed fusion and now an SCS, I was sent to a new Reumatologist almost two years ago. When I first went, my test results were really off, with the positive ANA, and of course the very high SED and CRP tests (with other things I can't remember). The lab determined primarily an overlap disease and I was told I had mixed connective tissue disorder. I also have Reynauds very badly in my hands, my feet, my nose, and sometimes my ears. This started several years ago with a few fingers feeling ice cold to the touch and others on the same hand feeling warm to the touch.

Move on several years and all of the sudden, one finger got huge and hurt. It was very hard in the knuckles and all of my knuckles looked very swollen and hard in both hands. Every Dr who saw immediately said RA, but X-rays show perfect bones. After many years with hand pain getting so bad I would cry and hubby and daughter trying desperately to warm my fingers if I touched anything cold (though I am always hot and sweaty), this Reumatologist told me it was fluid retention under/in the synovial tissues. I was started on Plaquenil and given injections of natural steroids (as I am allergic to synthetic steroids). The hand pain is so much better and I now take two Plaquenil each night, which helps tremendously.

The first year, my tests were all really bad, however, they got much better the more tests they ran. This year I have had two sets of lab tests and they continue to improve, with inflammation markers now being the only thing out of balance.

I do still have the red butterfly rash and a horrible skin sensivity to the sun, plus I sweat insanely and I have horrible GERD and stomach issues, despite having had the surgery for GERD.

For some reason, my Reumatologist has been insistent on me taking methotrexate, but I have always been too scared. I already take almost 30 meds a day, most of which are taken multiple times and I already do stomach shots for pituitary disorder (no HGH production).

Finally, last week, I agreed to do the methotrexate shots and started last Sunday. I have been horribly sick to say the least. I have also fallen pretty badly and am very, very sore. I'm just praying I didn't do any permanent damage.

Lastly, I am scheduled for an endometrial biopsy and ultrasound to look for cancer, since I a post-menopausal and have started menses again. I also have just had a new mammogram and a new thyroid ultrasound to look at my thyroid nodules (I already knew they were there).

My dr tells me basically nothing, but insists on the methotrexate, which I HATE. Does anybody have any ideas what he is shooting for here? He did not know about the thyroid issues, since that is my Endocrinologist who ordered that and the mammogram was simply past due.

Thanks for any response. I know this was too long, but I don't know what is connected.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7472
   Posted 8/21/2016 12:41 PM (GMT -6)   
It is very important to tell ALL your Drs about ALL you diagnoses and treatments. Otherwise they may be advising you to do things that are contra-indicated by your other issues.

It does sound like you have Lupus or a connected tissue disease. Drs generally use Cellcept, Imuran and/or MTX to treat these, along with Plaquenil. It is impossible to know ahead of time which of these 3 might help us, it's basically trial and error to see which we respond to. The order in which they are tried is really up to the Dr's preference - sounds like you Dr prefers MTX.

I'd suggest getting ALL your symptoms and ALL your treatments on one piece of paper, then going over it all with your rheumy. Maybe he will still suggest MTX, maybe not.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/21/2016 4:38 PM (GMT -6)   
I couldn't tolerate the MTX. It made me so sick within minutes of taking it. I was violently sick for 3 hours after taking it. You might be having the same reaction.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

It Never Stops
New Member


Date Joined Aug 2016
Total Posts : 8
   Posted 8/22/2016 2:39 AM (GMT -6)   
Thank you for the replies. I think I was unclear when I said the Reumy didn't know about the Thyroid US. He Does know about my Thyroid issues and the nodules, but neither one of us knew the Endo would have me do another US to check to see what is going on. I'm sorry for the confusion.

One thing the Reumy said at my last apt was "I want you to have Lupus." Then he quickly redirected and said "I don't want you to have lupus, but I really think you have lupus. It's just that your test results don't support it". I'm certain this is because the ANA and all the other "serious " things have gone from positive to negative, on a slow decline, for the last two years. He also said that my "positive " response to the Prednisone really points that way.

I have taken the advice of a very great friend and sent an email asking for my diagnosis and the reason why Methotrexate is so heavily recommend. I simply cannot take another dose of this med until I fully understand why I NEED it.
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