Tuesday, May 29, 2012

The persistent rash...

My rash was gone. Then it came back. Story of my life, honestly. Hahaha. When I drop below 2.5-3 mg prednisone, the rash on my shin returns with a vengeance. I'm really not even supposed to be on prednisone right now (meaning, my current doctor did not prescribe it for me, it's just leftover from 2009 treating myself Dr. Ashley style. Yes, I know you aren't supposed to mess around with prednisone. Yes, I'm aware of the dangers.). I don't have insurance and cannot afford to go see the doc whenever this rash rears its ugly head.

Anyways, I've read extensively about the link between thyroid antibodies and rashes and the connection is clear. When I see the doc next I might see what he thinks about treating euthyroid Hashimoto's. Not many docs are keen on the idea but it's worth a shot. I'm thinking... lowest dose of Armour thyroid, which is a combination of T4 and T3.

Thursday, May 17, 2012

Cannot tolerate 200mg minocin, reduce again

Since my stomach has been having issues, I have reduced the minocin again to 100mg once a day. I continue to take a probiotic supplement, Jarrow Formulas AF with 10 billion strains.

Had bloodwork drawn yesterday, and now I am going to start Zithromax Tues./Thursday 250mg once per day.

Bloodwork didn't show any major changes, though sed rate and CRP are still low, which is great. Neutrophil count is way up. Usually it's around 53% for me, and this bloodwork showed neutrophils at 69%. I've read that an increase in neutrophils can indicate a bacterial infection. So maybe it is the strep that is just taking up residence? I suppose we'll see after starting the zithromax. MCV and MCH are still elevated slightly. Platelets still at low end of normal at 206.

Sed rate = 2, CRP <0.3 mg/L.

RBC count still low at 3.8.

TSH at 1.44, Free T3 at 2.4 pg/ml (range:2.0-4.4), Free T4 at 1.04 ng/dL (range: 0.82-1.77).

RA elevated slightly at 15.4. ANA is still positive, no big surprise there only wish I could have afforded to get the titer for the ANA.

Saturday, May 12, 2012

Ended medrol pack - increased Minocin

Well the Medrol pack is now finished and I'm on 2.5mg prednisone, hopefully tapering to none by the end of next week. The rash on my shin is now gone, but I still have some small spots on my upper back.

Yesterday I increased my minocin dosage from 100mg to my normal 200mg per day. I was taking 200mg of the generic stuff from December 2011 until the beginning of April, then switched over to brand name and it seems to be stronger so I lowered the dose to 100mg. Not sure if I'm ready to handle the 200mg yet, especially since I'm still on a small amount of prednisone, but we'll see. I'm a bit anxious to try out the Zithromax to see if it has any effect, but I think it would be best to wait a little bit and give the brand name minocin a chance to do its thang.

As far as today goes, I've noticed a significant increase in muscle pain and sacroiliac joint soreness along with that damn left knee pain that is almost a constant nowadays (as it was in pre-plaquenil days). 200mg ibuprofen earlier in the day didn't do a whole lot for the pain.

Tuesday, May 1, 2012

Medrol pack

Stopped by the doctor's office yesterday to pick up Zithromax that had come in from the patient assistance program. So that's great news. 

In not-so-great news I am currently starting a Medrol pack to reduce inflammation and get rid of the multiple spots of itchy hives that are just begging to spread like wildfire. 
Shin rash
I need to get this flare under control before I can even think about starting up the Zithromax. Though I did test high for strep antibodies (as well as the mycoplasma, obviously), I've read that you should be treating the strep antibodies either before or at the same time as mycoplasma. 


My History:

I was diagnosed with Sjögren's syndrome (in addition to Fibromyalgia) in November of 2007. I had never heard of Sjogren's before, and wasn't even going to attempt its pronunciation. 

I believe my immune problems started way back in the day when I came down with mono in the 5th grade, and then had a recurrence of it in 7th grade... and then after that I whenever I started to feel crappy again it was simply assumed to be associated with past bouts of mono. I never was the same after that. 

Many years after the mono business, while in college, I was referred to a rheumatologist - Dr.Carol Beals in Lansing, MI - whom I no longer see, unfortunately, because she is a wonderful, intelligent, and caring doctor. I saw her for 3 years and then had to stop due to my lack of health insurance. 

Bloodwork done by Dr. Beals showed that I had been exposed to Parvovirus B19 at some point in my life. The parvovirus exposure, in addition to the mononucleosis, most likely led to my increased sensitivity to autoimmune problems. The fact that my maternal grandmother had lupus (and died of complications due to it) was not helping my genetic case any. 

My initial symptoms were overwhelming fatigue, joint paint (mainly my knees and hips), trouble concentrating, problems with word retrieval, loss of hair, muscle pain, depression, and horribly itchy skin rashes. I was started on 400mg of Plaquenil in summer of 2008, and continue to take it without (many) problems. My skin rashes are a bit worse on the Plaquenil, an overall increase in skin sensitivity, but I do believe that the Plaquenil helps with fatigue and joint pain. So... I took the trade-off and keep a tube of hydrocortisone cream with me at all times and steroid cream for the tough times. 

In 2009, I had a lymph node removed in my neck due to enlargement and an oncologist's suspicions. It was not cancerous! Many people with Sjogren's syndrome are at a significantly increased risk for Lymphoma.

December 2010Thyroid antibodies detected. Anti-thyroid peroxidase (TPO) to be exact. I also had my DHEA-S levels tested (serum and saliva), and were found to be low. 

May 2011: I had my second Laparoscopic surgery for ovarian cysts/endometriosis. Of course, after the surgery I was told to take hormonal birth control pills to control the endometriosis, which tends to worsen my Sjogren's symptoms (and I don't really believe in taking synthetic hormones). I feel that you need to find the root cause of the hormone imbalance, and fix that. Most doctors  are "glorified drug-dealers", and would rather throw some pills your way than to investigate symptoms in order to find a root cause because that would be expensive for insurance companies. And would actually require some effort. But I digress. 

Nov. 2011:

Had blood work done for food allergy detection. The delayed sort of allergy, that is. Which tests for IgG antibodies versus the IgE ones which are typically the result of an immediate allergic reaction. Allergy testing results show that I have an allergy to Baker's yeast and Brewer's yeast, which I had already suspected. This also means no vinegar, miso, mustard, ketchup, etc. Mild reactivity to bananas, peanuts, eggs, oats, soy, and oranges. I've switched out my peanut butter for sunbutter (made with sunflower seeds), and am now eating Perky's crunchy flax cereal for breakfast instead of my usual granola. 

Dec. 2011:
Seeing a new doctor here in Chicago and was tested for mycoplasma antibodies, which are thought to be linked to autoimmune diseases (mainly rheumatoid arthritis). Tested positive forMycoplasma pneumoniae antibodies and elevated strep antibodies. Started 200mg minocycline every day and will continue low dose antibiotic therapy for at least the next 6 months. For more information on autoimmune disease and mycoplasma infection, check out this site: rheumatic.org

Supplements added to regimen: Banyan Botanicals Healthy Vata, L-Methionine, L-Glycine, GABA, 7-keto-DHEA 25mg. 

April 2012: 
I just got the results back from my saliva testing (via snail mail) through ZRT labs, and results show that I have some issues with the rhythm of my cortisol levels. I suspected this, along with the thyroid problems/symptoms (which are still going untreated). High-normal "morning" cortisol levels, which drop sharply by "noon", only to rise again (abnormal) for "afternoon" and "evening" times, which explains why I need to take sleepy time supplements in order to fall asleep at night. And even then I don't get to sleep until around 2am. 

Medication switch: from generic to brand name Minocin