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!