Treatment plan

[mich911]

Hi everyone,

I finally got to see my specialist Dr. Sreih at UPENN yesterday. He is the most professional, compassionate doctor I've ever met. He spend about 1 1/2 hrs with me & my husband going over bloodwork and explaining everything.

Then he gave me the treatment plan which scared the heck out of me. Currently, I was only taking 10mg of pregnisone but he is raising it to 40mg for two weeks, then taper to 30, then two week to 20 etc. Also, I have to take bactrum antibiotic 3x week. And I also have to get Rituxan intravenous once a week for 4 weeks. I'm so nervous about side effects but I know I have to trust the doctor. He wants to go aggressive with the treatment. If anyone has some helpful advice to get me through the treatment, please let me know:)

Michelle

[Pete]

Dr Srieth is very good. Just remember that all of the side effects listed for a med are to protect big pharmacy. In most cases, you'll have few, if any, side effects.

[Dirty Don]

Whatever side effects you do experience will be worth the time spent getting better. He's got you on an aggressive plan which is how WG/GPA should be handled from the onset. My rheumy was very upset with the hospital that treated me originally in that they did not go after the WG aggressively so my recovery was much longer than needed IF they had treated me properly in the first place. Best to you...& hang in there...patience goes a long ways with the recovery.

[Alysia]

Sounds like a perfect plan to me. You are in good hands. Hitting wg strong and fast is the way to reach remission soon and for long time. Good luck.

[mich911]

Thank you everyone!! It makes me feel so much better discussing this with people who are familiar with the disease and have gone through the treatment. I'm so happy to have found this support group. I just went to the pharmacy to get my pnemonia shot that the doctor suggested and to pick up my new pregnisone dose & bactrim antibiotic. Here we go!! On the way to feeling better:)

Michelle

[Alysia]

Thank you everyone!! It makes me feel so much better discussing this with people who are familiar with the disease and have gone through the treatment. I'm so happy to have found this support group. I just went to the pharmacy to get my pnemonia shot that the doctor suggested and to pick up my new pregnisone dose & bactrim antibiotic. Here we go!! On the way to feeling better:)

Michelle

Well, as for the pneumonia shot... it is more an issue of controversy here. Did your wg dr. Prescribed it to you ? When are you going to get it considering the other treatments, especially rtx ?
Personally, I refused to take it. I know others around did take it. It will be best to make sure with your wg dr. About it and its timing.

[mich911]

Well, as for the pneumonia shot... it is more an issue of controversy here. Did your wg dr. Prescribed it to you ? When are you going to get it considering the other treatments, especially rtx ?
Personally, I refused to take it. I know others around did take it. It will be best to make sure with your wg dr. About it and its timing.

Hi Alysia,

Yes my WG doctor did prescribe the pneumonia shot and he said get it immediately so I did get it yesterday. My RTX treatments probably won't start until July. UPenn has to get approval from my insurance company and the doctor said the insurance companies don't like to pay for this treatment because it's expensive.

[Alysia]

Hi Alysia,

Yes my WG doctor did prescribe the pneumonia shot and he said get it immediately so I did get it yesterday. My RTX treatments probably won't start until July. UPenn has to get approval from my insurance company and the doctor said the insurance companies don't like to pay for this treatment because it's expensive.

Whew... then it seems ok. You have a good wg dr.
The problem with vaccins is once we are imunne compromised but you are not yet.
There are also other debates about them but I dont understand enough to comment. You can read in marta's threads if you are interested.

Yes. Rtx is very expensive. There are some programs of research who give it for free. If I remember correctly, Victor (blue4runner) is on one. But I hope that your insurance will not make any problems.

Good luck and please update us.

[drz]

My consultant expert at Mayo said there are some indications that the more aggressive treatment plans may result in a better long remission. Your doctor might agree with this thinking. Your plan sounds pretty typical and should not give you much trouble and yield quicker improvement so best wishes for better health soon.

[blu4runner]

Glad you liked Dr Shrieh. I started basically the same routine as you but I was at 60mg prednisone and 4 weekly infusions of the rituximab. I think you will find the staff at the infusion center at UPenn very professional and personal. They treated me great whe i had my infusions there. Best of luck as you start the treatment

[Alias]

It's so good that you are on a definitive, aggressive treatment program, which seems very mainstream and sensible.

My specialists recommended the pneumovax, as well as the shingles vax and yearly flu vax. Timing is important, as someone mentioned, e.g. I think I had to be below 20 mg of prednisone before getting the shingles one. Some have very strong anti vaccine opinions. I don't want to start a debate. I just follow the advice of my trusted physicians.

I started on 60 mg of prednisone and gradually tapered to 0. The side effects of pred can be unpleasant, but you are on the road to feeling much better. Best wishes.