
Megan Rusty and I went to
OHSU (Oregon Health and Science University) to meet with a
MF specialist recommended by the
dermatologist. Well, we found out that Megan has
MF and that the patches need to be dealt with. The specialist said he was just asked to be consultant and so he recommended that we go BACK to the
dermatologist. The good news was 1. the
dermatologist is in Vancouver so we don't have to go to Portland for every treatment. 2.
OHSU is covered with insurance 70/30
Dermatologist is 90/10. Bad news - 1. Another doctor/specialist visit telling us everything we already knew and 2. Another doctors bill to pay...
Today we went to the Dermatologist...
Here is a picture of Megan in a hospital gown laying on the doctor table. We got to the appointment at 9am and sat in the waiting room for 20 minutes. They took us back to her room...three magazines and a couple of cell phone games later (over an hour) we met with the
dermatologist. He looked at her her new spots. He told her that they want to make sure the new spots are
MF and not
eczema - so they will know how to treat each of them. Megan has been taking anti-
histamine for the itch - it makes her really drowsy. She asked if they is something different she can take. He said her dose was 10mg and a normal adult dose is 100mg. She said she would fight it out. Also, the doctor is going to get insurance approval for UV-B treatment...if approved, treatment will start in 3 weeks...
and now a word from our UVB sponsor -Broadband UVB has been used for treatment of MF for several decades. A new form of UVB called narrowband UVB uses only a few selected UVB wavelengths. Narrowband UVB is generally more effective than broadband UVB; however, narrowband UVB phototherapy has only been available in the U.S.A. since 1997, but is gradually becoming more accessible. UVB penetrates the skin less than UVA; therefore, it is used primarily for patch stage mycosis fungoides.
Phototherapy is initially administered three times a week. It typically takes 20-30 treatments for a response to become apparent. If no response is seen at that time, an alternate light source (phototherapy) or medication should be considered. If improvement occurs with phototherapy, the frequency of treatments will be reduced and eventually discontinued.
The side effects of phototherapy differ with each light source, but early side effects include: skin redness or sunburn, blistering, itchiness and tanning. Premature aging and wrinkling of the skin is increased with phototherapy, but is more common with PUVA than UVB. Damage to the cornea can occur with all types of phototherapy.Meet Happy the encouraging Trash Can...
While we were waiting I found Happy the encouraging trash can. The said part was, he wasn't very positive. It took me a while to figure out why...
- He eats garbage all day.
- He is always in the dumps
- He is always trashed
- Everyone bags on him
- Everyone says he stinks
- Everyone wants him to shut up.
- No one will play with him and adults say he is full of germs.