Enter Plaquenil

And finally SjoDry managed to secure a Sjogren’s Diagnosis! Of course I had to get totally fed up with the local Rheumies I saw here in Pittsburgh and drive to the Cleveland Clinic. But no worries, my new doc was well worth the drive (even in the midst of Hurricane Sandy)! Now mind you, I am in no way generalizing about all of the Rheumatologists in Pittsburgh, because I am sure there are some great ones that treat symptoms not solely based on bloodwork. I was just not a patient who was lucky enough to find that type of doc in my 3 prior local Rheumy attempts.

I sent out a request on the Sjogren’s World Forum and was fortunate enough to be given the same name by two separate people (which I think is always a good sign).  Since I spent about 5 years living in the suburbs of Cleveland, I know the area and still have friends there. A win-win.  When the female doctor asked why I had come, I told her..I mean really told her. I am seronegative but am having significant issues. Issues that are sabotaging my quality of life in a big way. Imagine my surprise and relief when she announced that she did not waste time chasing bloodwork and biopsy results. Seriously..I think I almost got a little teary. It was as if a huge weight was instantly lifted from my shoulders and my mind. The on-going battle to prove that I am not a neurotic hypochondriac is finally over. Yes, finally a doctor who will help me.

Of course I had already researched the current medical options that many Sjogren’s patients are or have tried.  I spent a great deal of time researching Plaquenil and it’s side effects. On one of the sites I visit (AskAPatient.com) when trying to research drugs & their side effects (as reported from real life random people), I had come to the conclusion that trying Plaquenil would pretty much be a crap shoot. I had read from other’s experiences that the drug was described as anything from a Miracle Drug & a Godsend to it was poison and should be taken off the market. I then started counting the positive, negative & not sure responses to see if that made my decision any easier. While I did not read every response given, I concluded that there were more positive responses, than negative. Yet, the bottom line is that everyone and their responses to various drugs will all be different.

I will be honest, I was scared. After reading that some folks had their hair fall out; terrible headaches, vomiting and more, I was more than a little worried. Yet…my daily, constant high level of pain and fatigue were proving just as bad as any potential Plaquenil side-effect. So I dove in. On November 1st, I took my first dose of Plaquenil.  I think I half expected to immediately see large chunks of my hair fall out…but so far, so good.

Interestingly enough, my Plaquenil side effects seem as random as my crazy (here one minute and gone the next) Sjogren’s side effects. Headaches, while fairly mild, have been consistent after each dose. Some bloating, a touch of nausea here & there, but not too bad overall. But the best part is that I have already had a decrease in my joint pain. It is not gone by all means, but certainly down from the 8 or 9 (on a pain scale of 1-10) that I was living. Unless you live that kind of daily and hourly pain, you cannot possibly appreciate what that means to one’s quality of life.

Yes, I am happy I took the plunge. Do I still feel like a Sjogren’s Crash Dummy from the fatigue…yes, that has unfortunately not changed at this point. Since I already have an immune disorder and am technically blind in one eye, the potential for Plaquenil complications in my eyes and immune system are a concern. But the ” I just want to be normal & function” part of me have overridden any concerns that I have about the complications that can happen from Plaquenil, at least at this time in my journey.

Had a crazy moment in the midst of this. A few days before Thanksgiving, I was feeling  nauseous. Not wanting to possibly be sick on Thanksgiving, I called my doc at the Cleveland Clinic. If you are or have been a patient in a large teaching hospital that resembles and functions like a big machine, you can appreciate how challenging it can be to  actually get a message to your physician.

Anyway…I explained to the nurse or physician’s assistant I spoke with, that I was feeling nauseous & would like to get a nausea prescription of a few pills so that I would not be ill on Thanksgiving. Not sure what messages were heard and translated to the physician on their end. I was able to pick up a prescription (that I in fact did not have to use). But a few days later I received a letter from my Insurance carrier denying my request for the nausea drug unless I had the 2 conditions mentioned. What? I was confused. Then a couple of days later, I received a call from the Physician’s office: The doctor wanted me to stop the Plaquenil. Why?? I asked. The polite gal explained that the doctor did not want me living on nausea medicine each day. What?! I explained that the request was a one time request for a couple of pills that I did not end up using and had never thrown up since starting the med. And further…I do not want to stop the Plaquenil! I am receiving benefit from it and you will have to pry the plastic, child-proof bottle from my cold, dry, scaly hands! So while there may be a few communication inefficiencies with my physician and the machine she works for, they are worth the benefits that I am now experiencing. In fact, I think I just received an early Christmas Blessing!

Happy Holidays!

About VitalSignsPgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in Sjodry's Doctor/Dx Quest. Bookmark the permalink.

8 Responses to Enter Plaquenil

  1. lcstrom says:

    Hi there,

    I love reading info about a Sjogren’s since I am a long-time sufferer. Just an editing tip. It is very hard for me to read this post because it is not broken up into paragraphs like normal writing. Particularly as people age, paragraphed writing is much easier on the eyes. I think your important blog posts will have a greater impact if they are in a standard format that is easier to read (like a newspaper or magazine article).

    Thanks for putting the message about SS out there!

    Laura Strom

    • vitalsignspgh says:

      You are so right! Thank you and sorry about that. I am attempting
      to teach an old tired dog, how to blog. I was so focused on buttons &
      icons, I was not paying attention to formatting. Thanks for the reminder!

  2. Amy Junod says:

    My first Dr. had me start out on a lower dose of Plaquenil because it is so hard on the stomach. He insisted on the name brand also. He said that some of the patients had issues with the generics. He said it would take a while to begin working and thankfully my relief came quickly.

    I did start to feel swelling, stiffness and pain again. By this time I was on to my 2nd Dr. and she increased my dosage. I felt great relief from the bump up.

    I have had issues with the generics though. My insurance wasn’t going to pay for name brand so I tried to stay on generics. I was just too nauseous. It sort of came in waves. It was just interfering with my over all wellness so I went back to the name brand.

    If I am rushing and take it on an empty stomach it was make me queasy. Sometimes taking it with milk insures that it’ll rest in my belly without the icks.

    It’s so great that you have a doctor that you can trust while on the Sjogren’s Journey.

    • vitalsignspgh says:

      Thanks for the heads up. So far I haven’t had enough stomach issues to make a change.
      I think I am just so darned relieved to have a decrease in pain…I am willing to put up with a bit of unpleasantness.
      There is so much angst and frustration that is taken out of the equation when one has a good physician that they can trust.
      Sounds like you have a great physician too!

  3. Heidi says:

    Thanks for the new post! I think most of us can identify with your experience! I too read all the different posts on Plaquenil, but was determined not to let this disease progress without a fight! So I was fortunate to have come across a physician that diagnosed me – where others would not…I have been on it since July and know it has helped me a lot with the inflammation and even dryness (I also started Evoxac the same time – so hard to tell which or whether both are helping – I want to find a doc who wants to work with me to fight this! Even if it means a higher level drug (methotrexate or cellcept) -I don’t want to wait until it has completely take out my lacrimal glands and starts on my lungs….Dunno why docs don’t understand that! Anyway – please keep us posted on your experiences with the Cleveland Clinic…I am going to a new clinic in Houston that is run by Baylor – specific for Sjogrens patients! This is exactly what we need…take care, and thanks again!

    • vitalsignspgh says:

      So glad that you have a Sjogren’s Clinic to go to. It is nice to have specialty facilities available.
      It is well worth the time, drive or expense to go straight to a doc/facility that understands my condition.
      My Aunt lives in Missouri City Texas. I used to spend a lot of time with her when I was younger. I remember going
      to the University Hospital for eye treatment. You are really fortunate to have such great medical facilities. Let me know how it goes.

  4. Linda says:

    I have just been diagnosed with Sjogrens. My rheumatologist prescibed the generic for Plaquenil and I have taken it for 2 days. This is all so new to me.
    For me it all started at the nephrologist where I was diagnosed with stage 2 kidney disease. Because I didn’t have any of the usual causes for CKD the kidney specialist did blood tests to determine what was causing kidney damage. From these tests he found a positive ANA and I was referred to the rheumatologist – and further blood tests revealed a positive 8.0 SSA and SSB blood tests for Sjogrens. At first having a diagnosis of Stage 2 Chronic Kidney Disease was enough, but now an additiona diagnosis of Sjogrens – what’s next???

    • vitalsignspgh says:

      Hi Linda.

      What I have found with my Sjogrens, is that there is no typical presentation that I can count on. One day it is one or two symptoms, the next day something different.
      I have always been fairly unhealthy since I was a kid and am now discovering that all of it was probably auto-immune related. For someone who likes to be in control, Sjogrens is
      maddening. At the same time..about all you can do is take it as it comes. Hope you get some relief from the Plaquenil 😀

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