Friday, February 6, 2009

Bite Me!

And so it personal journey just gets, more bizarre, more exasperating and it's funny too. (or that's just my E.I talking)
Adding to my list of new meds, the last one being bird poison (4-AP) I now have an antimalarial. Plaquenil.

Lisa over at Brass and Ivory posted about people who have one autoimmune disease often double-dip and are diagnosed with yet another. It seems to be prevalent with Multiple Sclerosis and Rheumatoid Arthritis.

On a recent blood test that was ordered by my neuro after I listed symptoms that were not explained by my MS, I had a positive speckled ANA. I had no idea what that meant, it sounded like an Easter egg of some sort. Upon asking my neuro he responded by announcing that it wasn't his department. I needed to go back and see my old friend, Dr. Chicken Little, my rheumatologist.

Dr. C. Little (not his real name, the moniker I gave him when I realised that whatever horrible possibility he is thinking spilled directly out of his mouth. His real name is stranger still) was given my case by my first neuro before my MS diagnosis. I had aseptic menengitis, lesions in my head, and a list of neurological symptoms. I was a mess. They did all these same blood tests then but had nothing conclusive. I was treated with Cellcept and Imuran which I did not tolerate for long. Then finally I was given the diagnosis of MS even though it presented itself in a manner that kept it in question for some time. So, I hadn't seen Dr. Little in over 4 years until this speckled whatever showed up.

To my amazement he remembered everything about me. I found this both refreshing and unsettling. He ordered more tests and announced that I now have Sjogrens Syndrome. WTF!
Well, I do have a dry mouth...thought it was cotton mouth from my...ahemm...medications.
Not knowing much about Sjogrens, I thought it was nothing more than a little dry mouth, eyes, annoying little disease. Hell...I deal with MS, what's a little dry mouth? WRONG! Sjogrens can effect not only your glands from producing moisture, it can effect your brain and CNS (like I need something else to effect my brain), lymph glands, joints causing pain, internal organs including liver, pancreas, kidneys, lungs. This Sjogrens thing is not a welcome addition.

Back to the skeeter. I was told that Plaquenil works well for Sjogrens. They don't know how, but it does. WTH...I'll try it. Side effects seem to be minimal from what I've read. And as an added bonus It would seem that I can stroll around the African continent without concern if I so choose.

I'll have to learn more, obviously. It seems that a drug that works for one autoimmune disease can actually worsen another. A fact that I'm sure other double dippers have found to be true. I have been told that it would be in my best interest to start methotrexate, it would treat both Sjogrens and Multiple Sclerosis. I'm not sold on that idea. I have follow up appointments with both Dr.C.L. and my neuro in the next few weeks. I have time to think about it, even though I'd rather NOT.

Any input from some of the other "double-dippers" out there would be appreciated.



Bubbie, I'm so sorry!!

I hope that the Plaquenil works well for you. My rheumo had me try it for the RA, but it made me unbearable fatigued and sleepy. Be sure to have your eyes checked regularly while on Plaquenil as it can cause visual damage.

I do take methotrexate for RA and have found it to be very helpful for me. Of course, we are each different so who knows. My neuro did say that it could only help with the MS and not hurt at all. Be sure to take extra Folic Acid daily to counteract the potential negative effects of methotrexate.

My impression is that methotrexate is less drastic of a medication than Cellcept or Imuran. I don't have an concrete evidence of that, it's just an impression.

Just imagine, perhaps after getting the Sjogrens under control, you might find renewed energy and might feel better than you have in a while. That would be cool.

Bubbie said...

Thanks Lisa. I knew about the potential vision problems with Plaquenil. I do see an optho-nuero at least twice a year. I didn't know about the folic acid intake and methotrexate. I thought cellcept and Imuran were lesser guns than the methotrexate, but I think your impressions may well be correct.
I'm trying to stay positive and imagining feeling better..and yes, it would be very cool.

Denver Refashionista said...

Man that's rough. I have no advice to offer but I am worried that I am going to develop rheumatoid arthritis because my joints have been getting sore and swollen. So far I only have a slightly elevated rheumatoid factor but still test negative for anything else...

I hope you find a medication that works for you and keeps you feeling ok.



The only double dipping I do is the unseemly kind with chips and dip! I've got nothing creative nor soothing to offer here...except to join in the "That sucks!" mantra with you.

Bummer...what's a girl to do???

Linda D. in Seattle

have myelin said...

My mom has that- along with Lupus and RA.

She uses eye drops, the special toothpaste and mouthwasth (Oasis) and so do I.

I think I'm developing it as well.

It sucks.

What to do....

herrad said...

Take care.

herrad said...

Hi Bubbie.
Hope you are ok look forward to your next post.

Miss Chris said...

Thankfully, I only have MS, as far as I know, but my mother has RA. Seems these diseases run in families even though "they" say they don't.