New to HealingWell.com

Hello, I've been lurking since I discovered this wonderful site a few weeks ago. I have yet to be "officially" diagnosed as only my ESR and RF factor were only slightly elevated.

My journey began a couple of years ago when I developed Bilateral Iritis which is almost always an indicator of some autoimmune disease activity. At that point all blood tests were negative yet almost as soon after the Iritis diagnosis I began experiencing joint pain and a host of other symptoms.

Fast forward to today and in addition to joint pain, brain fog, random muscle swelling (some connective tissue disorder), excruciating heel and shoulder pain, feet and hand pain, hair loss and the beautiful butterfly rash that is still very faint for the most part, they believe it is Lupus but haven't made an official diagnosis because the blood work still does not support it.

My issue is that my Rheumy and my PCP want to start me on Methylprednisolone and Plaquenil to help with pain and inflammation. However, I have maintained that I will try to manage my pain with pain meds until I receive an official diagnosis. I can't wrap my head around treating me for something you have refused to name. Am I just stubborn and has anyone been in my shoes?

Auto-immune diseases are VERY hard to diagnose -- and they are elusive enough that very often Drs/patients aren't sure of the exact diagnosis until the symptoms respond to a course of treatment known to control disease.

Plaquenil is not going to hurt you - it's been in use for many years as an anti-malarial, and is known to inhibit progression of Lupus. (Some people do have upset stomach, but when taken with food that should go away after 7-10 days. )

MTX I might be more hesitant about. Most Rheumies start with Plaquenil & Prednisone to get the inflammation under control, then once it's more managed use either Imuran, Cellcept, or MTX to keep it quiet. Auto-immune diseases manifest so differently from person-to-person that we don't really know how anyone is going to present symptoms, nor do we know what med might work for any individual.

Most likely your pain is coming from inflammation which is coming from an auto-immune disease. They are trying to address the disease with Plaquenil, and the inflammation with Prednisone, Imuran, Cellcept, MTX. Doing that will make the pain stop. Just taking pain meds for pain will not stop the underlying source! Ignore your instinct to stick to pain meds and let the Drs get to the root of the problem!!

Check out https://www.lupus.org for more information. Diagnosis is by suffering from 4 of 11 symptoms, and how they respond to treatment. There is no ONE test that tells us what we have.

Many of us have trouble understanding the diagnosis & treatment process for these types of diseases. I hope I have helped you understand it. Let us know how it goes and/or with more questions.

Mocha2009 said...
Hello, I've been lurking since I discovered this wonderful site a few weeks ago. I have yet to be "officially" diagnosed as only my ESR and RF factor were only slightly elevated.

My journey began a couple of years ago when I developed Bilateral Iritis which is almost always an indicator of some autoimmune disease activity. At that point all blood tests were negative yet almost as soon after the Iritis diagnosis I began experiencing joint pain and a host of other symptoms.

Fast forward to today and in addition to joint pain, brain fog, random muscle swelling (some connective tissue disorder), excruciating heel and shoulder pain, feet and hand pain, hair loss and the beautiful butterfly rash that is still very faint for the most part, they believe it is Lupus but haven't made an official diagnosis because the blood work still does not support it.

My issue is that my Rheumy and my PCP want to start me on Methylprednisolone and Plaquenil to help with pain and inflammation. However, I have maintained that I will try to manage my pain with pain meds until I receive an official diagnosis. I can't wrap my head around treating me for something you have refused to name. Am I just stubborn and has anyone been in my shoes?

I have been in that position for quite a while. The only thing I refuse to take is prednisone cause it made me wired and then depressed when they would stop it. I refused to take it again till they could diagnose me or prove that I needed it. All it did was mask the symptoms. However I have to say so far plaquinel works great. Been on it for month and a half and most my symptoms have toned down or gone away. I would try it. Better to try it then tirture yourself. If it works it will prove that you have it or get you closer to a diagnoses. Dr told me if my symptoms where truly lupus or autoimmune disease, it would make an impact. After 1 1/2 I can say it truly is making a differance and I can't wait to see her agin to tell her it works!

That is very true! The other thing about plaquinel is it protects organs from failing

Welcome Mocha2009! That is how I looked at it. Regardless of the name of the autoimmune disease, treatment is the main concern. We can drive ourselves mad, stress out and make our symptoms worse by fretting over a diagnosis. It can take a long time.

I'd definitely recommend giving plaquenil a try. It has helped so many people. I've had a bit of a bumpy road with it so far but I'm surely in the minority as far as side effects go and I'm still hanging in there because of the benefits.

Slowing disease progression is key and starting treatment of that in the early days of an autoimmune disease is truly a gift and a blessing in my opinion. Better that than starting after irreversible damage has been done.

I don't intend to scare you unnecessarily, I'm just very grateful that my treatment was started now and I've been given a really good fighting chance rather than after a slam dunk diagnosis when the disease has possibly had additional negative effects on my body.

That's just my 2 cents on it. :) I have discerned that with autoimmune diseases things tend to be outside the box of my previous medical experiences. Nothing is straightforward. It's backwards and sideways lol.

Hi Tashalynn97!

I always get hives when I have an infection, sometimes it's the only way I find out I have one! I had walking pneumonia forever and was exhausted but never found out until I broke out in hives and finally went to the doctor. You could be the same as me that way.

I've been on plaquenil a month now. I was going to cut the dose in half because I was getting so dizzy and vertigo, nausea (which I'm told could be lupus symptoms, not actually the plaquenil) but instead I tried the last few nights taking it with my supper. I find it's really helping as I'm going to sleep anyway. I'm a little dizzy in the mornings but I find that once I have my breakfast it usually sets me straight again.

I also spread out as far as I could all my other medication doses and take each one with a meal on their own.

Sometimes just a few adjustments can make a huge difference!