FED-UP: Should I switch Rheumatologists?

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I'm am so upset. About three weeks ago my Rheumy told me I had Lupus and started me on Plaquenil. Today, after finally getting a hold of him for urgent bladder issues (and then referred to a urologist), he said that he cannot definitively give me a diagnosis of Lupus, but he is 100% positive that I have an autoimmune disorder and "fairly sure it's in the Lupus family", to quote him. Then he said to keep taking the Plaquenil to see if I improve on it (which can take up to 6 months!) because that will help him with diagnosing! [[ IMG]]

I really cannot believe this. Can this really be the right way to be doing things? Starting me on meds without a definitive diagnosis, not even knowing if it's going to work? I"m mean I am really new to all of this but it doesn't seem to be right? I have been EXTREMELY sick and in/out of the hospital since JUNE. I had to withdrawal from school, quit my job, and leave my beloved Nashville home to move to PA to stay with my grandparents during these medical issues. I am tired of not knowing what is wrong, I am tired of being sick ALL THE TIME, and I cannot believe that this is happening after I finally thought progress was being made. I am going to see if I can get a second opinion from another Rheumatologist. UGGGGGH.  [[ IMG]] [sad] . Any suggestions or opinions?

In case you were wondering, my current labwork is:

-ANA Titer 1:320

-ANA Pattern: Speckled

-SSA ANTI-RO 52: Positive, high-71

-SSA Anti-RO 60: Weak Positive

-Low WBC

-High MPV

-Low Absolute Eosinophils (0)

-DSDNA: Unsure: It says "Double-stranded 157 zz"?

-REALLY messed up Urinalysis, with protein, bacteria, leukocytes, calcium oxalate, and mucus but with a clean culture (reason for Urologist referral).

:'( :'( :'(

 

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11 Replies

  • Posted

    I was diagnosed with mild lupus 3 months ago. I am on Plaquenil 400mg and prednisolone 5mg. Only after 4 weeks of treatment did my joint pain almost dissapear but my muscle stiffness continues as well as my fatigue. It takes between 3 and 6 months for the medication to work properly. I am still be under observation/investigation for other overlapping AI diseases. I am on a sick leave so that I can rest and manage my health conditions. Brain fog, etc. I am also new to this world of AI. A second opinion is always helpful and may tranquilize you but from what I have learned most treatments begin with plaquinil. I too am having doubts about my blood work and antibodies. Do follow this link: https://healthunlocked.com/lupusuk/posts/136847619/lupus-diagnose-other-antibodies.-help-please...

    Hope this helps you ×

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  • Posted

    Hi cmmusiclover

    Need to know your symptoms...

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    • Posted

      Hey Lillian.

      All of my symptoms match up with Lupus, though of course, I realize that there is overlap in symptoms of other autoimmune disorders. I am just really upset that he said I had Lupus and put me on meds, but then said he couldn't give me a definitive diagnosis 3 weeks AFTER starting the meds and told me to "just keep taking them' to see if they help. It doesn't seem right to be on a med for Lupus if the doctor isn't even sure I have it. Anyway, that is what my frustration is about. I just REALLY want answers, and I hate the thought that I have to wait 6 months for Plaquenil to work and I don't even know if it is what I need (and apparently neither does my doctor!) sad.  

      My symptoms are as follows:

      -EXTREME DEBILITATING fatigue. I have been sleeping 16-20 hours a day for a long time now.

      -Chronic dry and gritty eyes that rarely produce tears when crying.

      -dry mouth

      -Easy exhaustion after simple tasks

      -Constant viruses and infections over and over

      -Rashes in sun

      - fatigue and lightheadedness and muscle soreness in sun and heat

      -joint pain and stiffness in morning, in the cold, and throughout the day depending on the use of the particular joints (usually hands, fingers, ankles, shoulders, knees).

      -chronic sore muscles and muscle spasms, particularly in shoulders, neck, and lower back.

      -chronic low grade fevers off and on

      -chronic headaches off and on, WAY worse with fatigue, in the sun, and in the heat.

      -hear arrhythmia (tachycardia)

      -frequent breakouts of canker sores in the mouth and sometimes nose sores as well (though for the nose its usually just one or two and not NEARLY as often as the mouth sores).

       

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    • Posted

      Oh I dont know if this is related but my hands and feet sometimes swell as well.
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    • Posted

      Well it certainly sounds like Lupus doesn't it and your bloods are looking that way too. In the end as my specialist told me, a lot of the tresyments are the same fir Lupus Sjogren's and other disorders.

      I can understand the difficulty in giving an absolute diagnosis as there is no absolutely reliable blood test but as he says....you have something auto immune. In a way you are lucky to get that far down the road. So many have these disabling symptoms and struggle to get diagnosis/ treatment. I am diagnosed with Behcet's which is similar. I wish I had a penny for every time I am told some symptoms are atypical for this disorder. I too use plaquenil and it is helping massively.

      I am not sure I would rock the boat at the minute. Try to let the meds settle your symptoms and the doc monitor you and reachva conclusion about diagnosis. There is the option not to take meds that is your choice but sounds like you are feeling pretty unwell. Is it helping??

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    • Posted

      Hi cnmusiclover

      You do have symptoms of 3 autoimmune conditions:-

      1)..Dry, gritty eyes and dry mouth =Sjorgens Syndrome.

      2)..Sore muscles shoulders and neck and stiffness in the morning and fatigue. Headaches which could lead to GCA ..Giant Cell Arteritis which will have to be watched because can affect eye sight=Polymyalgia Rheumstica which could lead to GCA.

      3)..Sun rashes, joint pain ,low grade fever, canker sores in mouth ,fatigue=Lupus..do you have the tell tale butterfly rash across your cheeks and nose?

      You could have all three of these autoimmune conditions..It's no surprise your rheumy is erring in the side of caution here..if after a month you are still presenting with muscle pain and headaches it could be PMR..if still dry gritty eyes and dry mouth it could be Sjorgens... or you could gave all three combined..your rheumy must be puzzled..I think he is doing a process of elimination with the med..because PMR is usually treated with prednisolone steroid which i was on for PMR. It was initially thought i had Lupus because i had a rash across my cheeks and nose which my doc thought was a butterfly rash but rheumy said was rosecea. My friend has Sjorgens which is treated with artificial tear drops for her dry gritty eyes and artificial saliva spray for her dry mouth....roll with your rheumy's instructions and see how the plaquenil pans out....keep us posted....my very best wishes for an eventual firm diagnosis 🤔😊..

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    • Posted

      Hi mmusiclover

      Forgot to say...if the symptoms of Lupus have abated with the plaquenil..you may be still presenting with PMR and Sjorgens Syndrome symptoms....your rhuemy can then decide what the next step is....keep us posted...your in a bit of a situation but chin up there is light at the end of the tunnel...😊

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  • Posted

    Hi again, cmmusiclover.

    My first comment is waiting moderation. Maybe because of the link I pasted with my blood work results in another forum. I agrre with everything Margaret221116 said. Allyour symptoms are like mine and you shall wait until plaquinil works. Between 3-6 months.

    Hope this helps.

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    • Posted

      I have had very good results with Plaquenil...it began working straight away and got better and better. My feet are pain free after suffering agony because it was so painful to walk. Fell over twice badly giving myself concussion and pulling a muscle badly in my chest. Still sore after about 3 months. The plaquenil sorted that out totally. I understand it doesn't work for everyone but I would give it a bit of time.

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  • Posted

    I really pray you will find answers soon so you can get on with your life. The body is so complicated. They are far from knowing everything. There are to many deseases out there. Wish you all the best. Hang in there. 
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  • Posted

    Hi cmmusiclover, I can almost guarantee that you have Lupus and Sjogrens Syndrome. I'm not a doctor but have become quite an expert on these/my diseases. The two (and more) usually go hand in hand with SLE and some people. And yes every doctor wants to wait to give an absolute diagnosis for Lupus because so many other diseases can mimic Lupus. He told you he's positive but he wants to see if the Plaquinil works because it works so well for Lupus. If after a few months you start experiencing a lot less pain, stiffness, fatigue, etc., then tell him what all it's helping then he will give you the diagnosis. It took years before I got one, and even at that I had to diagnose myself, tell them, have them run tests after test, then finally gave me an SLE diagnosis, which I already knew. What came afterwards is a diagnosis for RA, Sjogrens, Small fiber neuropathy, COPD, Fibromyalgia, Degenerative disk disease, Scoliosis, arthritis in lower back, Carpal tunnel and other various issues. Because of the Lupus I've had to have my appendix out, I'm having gallbladder issues, kidney problems, etc., etc., etc.. Not everyone with SLE will get all of the health problems that I have, but the Sjogrens is somewhat typical for about 30% of SLE patients. Please let us know the diagnosis once you finally get an accurate one. Stay vigilant, hopefully you're on pain meds, if not demand them! They're the only thing that kept my sanity on course! The Plaquinil will help I promise, it just takes awile. Best of luck to you!

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