Saturday, September 06, 2008

Health update

I have decreased the prednisone to 9 mg and my skin looks great. I am supposed to reduce my prednisone by 1 mg every 2 weeks now. At that rate I hope to be done with taking the prednisone by my next Dr visit. I noticed this week that my fingernails are fully recovered from the stress reaction from when I was so ill. In fact they are back to growing quickly and have good strength and thickness. Before my BP first showed up I had noticed my nails were always breaking and had gotten very thin. So I am taking this as a great sign that I am very healthy right now :)


bmama said...

Hi! I came across your blog when I was running a search regarding PV. My mom is awaiting the final results from her biopsy. I am in the process of researching PV doctors and came across Dr. Morrision at OHSU. I am hoping that you might be able to give me some feedback regarding your experience. My mom has had mouth ulcers for over 6 months and we are hoping to finally get to the bottom of it. She lives in S. Oregon and I also saw that you have a derm in Medford. Any specialists you could recommend would be greatly appreciated!! Best of luck to you and thank you in advance for any help!

Joyful Dreamer said...

Chayna I am happy to help in any way. You or your mom are welcome to contact me any time you have q's or need support.

I see Dr. Morrison at OHSU, and Dr. Mendelson in Medford as my local derm and she is very knowledgeable and her staff is also very responsive if you need to have a question answered between visits. She can refer your mom up to Dr. Morisson. I got in very quickly once I saw Dr. Mendelson.

Are you familiar with the International Pemphigus Pemphigoid Foundation? It's a really fabulous resource. I flew to the annual conference in April and they were so supportive and gave me the info I needed to treat my condition correctly from the beginning. Many derms are too hesitant to treat with high enough doses of prednisone to get it under control in the beginning but it is really critical to see people who have lots of experience treating PV. Dr. Morrison is the absolute best person you can see in OR. All the experts at the IPPF conference in Dallas told me she was the person they would send me to in Oregon. :)

I hope your mom can get the treatment she needs to go into remission as soon as possible.


bmama said...

Hi Rebecca! Thank you so much for your help! My mom has an appt with Dr. Morrison on Tuesday and she started on prednisone last night. She hasn't received final confirmation on the pathology report, but the definitions might as well have her picture attached. Do you also see an internist

Joyful Dreamer said...

Hi Chayna,

I am glad your mom got an apt so soon. I am sure Dr Morrison will be able to help your mom.

I don't have an internist. I see my regular physician, and an endocrinologist/bone Dr to monitor my bones and help with any side effects. I have monthly blood work to monitor my potassium levels and other things.

So far I haven't had any problems other than insomnia when I was on high doses.

Be sure they put your mom on Fosamax to protect her bones! (Ask for a bone scan asap for a baseline measure of her bones.) Prednisone eats your bones up really fast so the Fosamax keeps that from happening.

How is your mom coping? Please let her know once the Pred starts working she will feel much better. The flares afterwards are never as bad as the first round before meds are helping. With any luck your mom should start feeling much better within a few weeks of starting the immunosuppressants. I noticed some benefit once we got the prednisone dose above 80 mg. It needs to be a high dose at first not tapering at all for awhile to get it under control. Unlike most skin diseases where they give you a high dose and very very quickly reduce it every 4 days. I needed to go up to 125 mg for almost a month to get mine under control. Most people don't need that much thank goodness. I started off taking tetrycycline and pred, then they added Imuran which I couldn't take because of a liver enzyme I don't make. So Dr. Morrison switched me to Cellcept. It has worked really well for me. It has allowed me to lower my prednisone dose to 9 mg. It has taken since April to lower the dose weekly at first by 20 mg, then reducing by a few mg, then biweekly by 1 mg. The combination of the immunosuppressant med with the prednisone takes a few weeks to kick in before you can lower the prednisone a bit. You want to taper that as quickly as possible, but not too fast or you will cause a flare and have to up the prednisone again.

Also be aware that prednisone will probably make her very very irritable and miserable. I went several days with almost no sleep and it was several months where I was NO fun to be around.

Let me know how the apt goes and if there is anything else you need!!