Update post Dr. Whitman visit

[Guest guest]

Well, had her first visit with Dr. Whitman on 11/3. Traffic in NJ is

pretty heavy during the rush hour times as they are in most places. The Summit

campus took us by surprise as it is surrounded by a lot of narrow two lane roads

and older, New England style, smaller houses that makes the rush hour din extra

nerve-wracking. The campus itself is a very large, multi-building complex that

resulted in our having to call the office to inquire as to which one the

Department of Rheumatology was in. Luckily, we came a day early so that we had

time to scope all this out in advance.

We both found Dr. Whitman to be polite, attentive, responsive and professional.

Our appointment time was for 9:30 and we were taken back at 9:35. We found the

staff to be very nice and considerate. We met two of the three nurses that Dr. W

said we would be dealing with whenever we called (Tonia, Tatiana – we did not

meet Ellen. We also met Tara.) After an " extensive " visit time (almost two hours

– we truly appreciated the time), he took all the prevailing information and

came up with the following, adjusted game plan.

• Azythromycin (250 mg) and minocycline (100 mg) would be increased to one every

day, 7 days a week from 3 days on the mino and 2 days on the zith. The object

here is to start weaning off of the minocycline as symptoms improve due to the

potential side effects of the mino. AND the fact that it is not usually

prescribed for polymyocitis.

• Continue with the Prednisone at 35 mg every day. However, since lowering this

to as low a dose as possible is a primary concern here, he wants to start

tapering off by 5 mg increments about every three or four weeks, as tolerated.

As we already had initiated this tack on our own we will continue unless

symptoms warrant otherwise.

• Start taking a heavy dose probiotic complex every day. He recommended the

Probiotic Complex Acidophilus from Rite Aid. It's pricey (normally $40.00 for

100) but they happened to have a 2 for 1 sale when I picked it up at our home

town branch. It has a 5 billion per tablet count. I'll be price shopping around

for this one.

• Start back on Plaquenil (200 mg every day) with the object of weaning off of

the Imuran (50mg daily) as symptoms improve. And the sooner the better as far as

we are concerned.

• Remain on 10 mg Norvasc for Raynaud's. We are not sure that this has been

helping any as 's hands are always hurting her but he said that we will

wait to see how she improves with all the other changes before considering

changing this one. Apparently, there is only one other med that is an accepted

treatment substitute (the name slips my mind at the moment– along with many

other things these days) and he wanted to be sure that it was called for

clinically before changing.

• Stop the HCTZ for ankle and facial edema. These were minimal symptoms and we

were not really sure that the HCTZ was what really addressed their abatement in

the first place. Guess we'll find out.

• Change taking the 50,000 units of vitamin D from twice a week to once a week.

He felt that twice was and excessive amount.

• One baby aspirin per day.

• Low Dose Naltrexone (LDN), 4.5 mg at bedtime.

• GI consult for excessive weight loss.

• Also, request a consult from the GI doctor to see a medical doctor of

nutrition … NOT a nutritionist.

• Dermatology consult for sub dermal, " blood-blister " like spots on hands.

• Labs:

o Anti-Histone Antibody, one time.

o CBC, ESR, CMP, Uric Acid, TSH, Urinalysis & CPK to be run once a month.

o ANA Direct and WITH Pattern, C3, C4, C50 to be run every quarter.

o For all you HLA B27 fans out there, I did ask about the implication/necessity

of this test in 's situation but he said that it was not indicated for

the type of Mixed Connective Tissue Disease (MCTD) symptoms she has.

We also were able to have dinner with from this forum while we were up in

New Jersey. It was a very pleasant evening and the food at the restaurant she

recommended was great. really appreciated the chance to talk,

face-to-face, with another fellow rheumy and gave us a lot of helpful

information to take back home. She's a real sweetheart.

Well, that's all the news that's fit to print. I promised an update on our

little journey and I hope it is helpful to some of you.

Rick