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PearlGirl
08-31-2013, 09:59 PM
Hi everyone! I have been reading so many threads on here lately and I sure feel like I know a lot of you already! I finally took the plunge and decided to join you all, as I am in need of an understanding support system! Thanks for having me!

I'm not going to post all of my symptoms... It would take far more energy than I have right now. I was diagnosed with UCTD a few months back after years and years of symptoms that have slowly crept up on me. Many, many doctors and a whole bunch of self-advocacy later, and I have a diagnosis... sort of. My rheumy wants me to try Plaquenil, but I'm being stubborn and don't want to go on meds unless I can't bear not to be. He also wants to sit back and "see what other symptoms develop." I get that AI diseases are very ambiguous, but I'd really rather make an attempt at keeping other symptoms at bay. I recently started seeing a Naturopath and am hoping that she can steer me in the right direction. Is anyone else as stubborn as I am and resisting meds? Or has anyone found any relief through Naturopathic treatments? I've realized recently that I'm officially having "flares." This current flare is particularly tough, as I have been feeling well enough to actually RUN the last month or so! That was a big victory for me. And now... it's all I can do to walk up the stairs or play with my kiddos. Frowny face.

I have so much else I want to discuss with you all! I'm really excited that I finally joined. I have a second-opinion appointment at the Cleveland Clinic in October with the hopes that they will do further testing to pinpoint what type of AI disease I'm going to be fighting tooth and nail with!

I'm looking forward to leaning on your shoulders and being a shoulder to lean on!

Be well everyone!

SleepyInSeattle
09-01-2013, 10:01 AM
I am sorry you're going through all this - it really is no fun - but I am glad you're headed to some (hopefully) good doctors. Diagnosis and coming up with a treatment plan can take a while with this stuff. Be patient!

As for medications, do be aware that there are no proven "natural" treatments for autoimmune diseases, and these diseases CAN kill you. If you wouldn't try to cure cancer with "natural" means, then don't make the mistake of taking autoimmune disease less seriously.

That being said, many of us do work with our doctors/nutritionists/etc to find holistic ways to vastly improve our quality of life and help keep the disease symptoms/medications to a minimum. Personally, I have had great improvements following my Rheum's directions on eliminating problematic foods, etc.

In my own case, I also resisted medication and I really wish I hadn't. Plaquenil is a pretty benign drug (safer than many OTC products we take without a second thought...), and it can me a huge difference. Early on, looking at blood work and symptoms, my Rheum urged me to try methotrexate - which REALLY scared me. I flat-out refused, and I'd give a lot to go back and reverse that decision, because my Lupus progressed and attacked my ear, resulting in almost complete deafness in one ear.

Well now I am on plaquenil and methotrexate, and my life is SO MUCH BETTER than it was before. Both medications took several weeks to get used to, and had side effects at first, but I stuck with them and now I can't imagine going back to how I used to feel without them. I don't know if I even realized how sick I was. It scares me to thing what was happening in my body with the diseases progressing unchecked all those years! The only lasting side effect so far from the medications is that my hair is thinner. I don't love that, but I can live with it. I know there can be long-term side-effects, too - but I have truly come to believe that the long-term damage from the disease is much worse than the medications.

Does it suck to have to take these drugs? Yes....
Does it suck MORE having your body eat itself alive? Y-E-S.

Sometimes you just have to pick the less-crappy of two crappy choices.

Whatever you choose to do, I hope it works well for you - just remember to be HONEST with your doctors about whatever you try, and work WITH them...you're going to need their trust and to have a good working relationship/partnership with them over the years. It's your body and your decision, but if you have good docs, they really are experts in this stuff, and it's complicated...you'll need a good guide/advocate.

I hope all that helps - it's just one person's experience, but there it is, for what it's worth. Those are the things I have learned so far.

Best of luck, and let us know how things go!

PearlGirl
09-01-2013, 10:45 AM
Thanks, SleepyInSeattle! Your post actually put things into perspective for me. I guess I still want to believe that I am smarter than this disease and that I can fight it naturally... but the last week is leaving me longing for relief that my vitamins and supplements and diet are not providing. I'm going to call my rheumy tomorrow and schedule an appointment to discuss Plaquenil. I intended to wait until after I go to Cleveland, but you are right, I am probably allowing my body to do damage that can and should be prevented. I wonder if I should have another round of bloodwork done prior to starting meds. My last work up was several months ago. Do you have your bloodwork checked frequently?

I am currently doing an elimination diet. My brother has Celiac's and that prompted me to give up gluten about a year ago. Other than that, I take a plethora of supplements and am trying to reduce stress and exercise regularly. I Newd to realize that I can still do all these things and that they will still be beneficial, even if I choose to take medication.

Thank you for your eye-opening response!

Lightworker
09-01-2013, 09:45 PM
Hi PearlGirl, I am sorry that you have this disease. I am glad that you found this site, the information and experience from others can be helpful. No two people are exactly alike but, for me, knowledge of other patients experiences can help us understand our own symptoms sometimes. I am on Plaquenil, have taken it for 7 months now. When I first started taking it, I had the gastrointestinal side effects but then took tips from others on this site and now always take it AFTER or during my meal. Over time, probably 2 months (?) the side effects lessened quite a bit. My doctor encouraged me to keep taking the drug for 6 to 8 months without stopping because with some patients it can take that long for the drug to start helping with your disease symptoms. I also have Sjogren's, which affects mucous membranes as well as joints and connective tissues. After taking Plaquenil for 5 months I started to see the Sjogren's symptoms dissipate significantly. I haven't yet noticed joint pain lessening but then, who knows - perhaps my pain would be significantly worse by now if I was not taking the Plaquenil. If you do decide to take Plaquenil, I encourage you to give it time to work even if you don't have immediate relief. Best wishes to you in your choices and many blessings to you for good health and well-being!

SleepyInSeattle
09-02-2013, 10:08 AM
Do you have your bloodwork checked frequently?

I have complete blood work done every 3 months, and also urine tests every 6 months...they also do liver panels at each of those because of the methotrexate. But blood work can be tricky - some people show almost nothing in their blood work but feel HORRIBLE, and some people have awful-looking blood work but minimal symptoms. It's a weird, weird disease.....

But personally, if I hadn't had any blood work done in several months, I'd want a new baseline set of tests before starting any medication - then re-test after 3-6 months to see what's what. But of course every doctor will have different protocols they are comfortable with, and everybody's insurance/health service is different in what they will PAY for, and that's always a consideration.

It is really important to get a baseline eye exam before starting Plaquenil, and when you do it, let your eye doc know you are planning to start plaquenil. They often want to do a visual field test in addition to the usual stuff. In EXTREMELY rare circumstances, long-term use of plaquenil can cause vision problems, so it's important to go in for regular eye exams - they usually recommend every 6 months. My insurance pays for one optometrist visit a year and one ophthalmologist visit, so I alternate them every 6 months so I am covered. The eye problems with Plaq are really INCREDIBLY rare, and are a longer-term issue, not a short-term one. If you are going for regular eye exams, any problems should be caught before they become significant. Hopefully your doc will guide you through all this stuff, too - but these forums are also a great place to gather info (though keep in mind we're not docs, just other patients!) :-)

PearlGirl
09-04-2013, 10:23 AM
Thanks, Sleepy! I'm glad that Plaquenil is working for you! I'm hopeful that I'll have at least some relief. I've been on the up and up that last few days. I'm still not myself by any means and I have to take it slowly, but I feel like I might be on my way out of this one. I keep going back and forth about going on medication before I go through testing at the Cleveland Clinic... just in case they want to treat me differently. I like my current rheumy, but I don't think he's doing all of the testing that he could and should be doing at this point. So wouldn't be surprised if my dx and/or treatment plans changes. It's frustrating, but I know we've all dealt with frustrating docs. It's just a part of the AI lifestyle, I guess. Thanks for the info on the medication and the blood work. I think it's due time that I had mine checked again.