View Full Version : Saw the Rhemy at Johns Hopkins today

08-31-2006, 11:05 AM
Well everyone I went today to see the rheumatologist at Johns Hopkins Lupus Clinic for a second opinion on treatment options. She told me that after reviewing my history and past/present treatment she recommened the following:

1. Since I can't take the effective dose of 3 grams per day of cellcept I am to continue on 2 grams and she recommends that my docs start me on prograf (FK-506) in addition to the cellcept to help protect my kidneys.
Prograf is another anti-rejection drug/immunosuppressant.

2. She wants them to start to lower my prednisone ....YEAH!!!!!!.... I'm ready to lose my moonface :lol:

3. She also wants them to add in addition to the one bp med I take (atacand) to add an ace inhibitor (lisinopril) to my meds. She wants my targeted systolic pressure to be 100. She told me since I have minimal scaring to my kidneys there is a chance that I may always lose protein...but right now I am still losing too much (1 gram)

4. She wants me to start a low protein diet

5. She said for me to stop taking actonel especially since I want to have kids in the future....she said it stays in your bones and can cause defects to the fetus even if you are not taking it anymore. She said the best thing I can do is take my calcium and vitamin D

6. She also recommended that I have monthly 24 hour urines to check my protein/creatinine ratio

7. She also runs a lupus pregnancy clinic and she said when I do get better and am ready to get pregnant she wants to care for me monthly to watch me closely

So overall I think things went well. Now it's up to all my doctors to get this new regimen started. I see my regular rhemy next week :lol:
And she also said for lupus patients to never take an injections called G-CSF (such as neupogen, neulasta) to boost WBC because it can cause really bad lupus flares. That is important for all of us to know!!

08-31-2006, 12:22 PM
Thanks for the tips Butterfly. Glad this visit was helpful for you and has opened up some new avenues toward healing. Certainly doesn't get any better than JH.

08-31-2006, 02:55 PM
Isn't it wonderful to finally have a doctor who cares about getting you better. I am so happy that things went well for you and that getting pregnant is a real possibility!!

I wish you the very best :lol:

Peace and Blessings

08-31-2006, 03:34 PM
I'm really happy that you are going to be able to decrease your prednisone, and that your doctor thinks you will be able to manage a pregnancy! Let us know when it's time to start knitting the baby booties (since it's the only thing I ever learned how to knit, it's my standard baby gift)

I'm glad to know that bad reactions to nuelasta are a lupus thing - I thought it was just me. Docs tried it when my wbc went below 2000 on cytoxan, but it sent my sed rate through the roof and caused terrible bone pain, so never again.

08-31-2006, 03:54 PM
Wow Butterfly, what a great outcome....you've found new answers and someone to help you through your pregnancy !!!

I bet it felt like a huge relief to hear that you can lose the moon-face, I dream about it everyday, but more importantly I hope this visit helped you, and that you have a good sense that you were in good hands.

I'm so happy that you were able to meet with this doctor. John Hopkins is such a stellar medical community, and it must bring you comfort knowing that you can be under the watchful eye of such great caring doctors.

I'm glad your visit went well, and I hope reassuring for you.

Thank you so much for keeping us informed; you provide so many great answers for us, it's nice to see your questions being answered now.

I wish you all the best Butterfly, keep us posted.

Much love,

p.s. I promise you won't miss the moonface (smile). I will keep you in my prayers.

09-01-2006, 02:03 PM
Thank You everyone for your responses. It's so nice to have all of you to share ups and downs with. I'm so blessed to have all of you. ~ Butterfly
ps Marycain- I'll let you know about the baby booties!

09-01-2006, 04:18 PM
Did she say how long you should be off Actonel before getting pregnant?

joyce dous
09-06-2006, 04:56 PM
:roll i/m computer stupid and i trying to join ur group and i don/t know if i/m doing this right i/m a first time user of ur group do u have a chat group r do u email i/m not sure well i/ll try to tell u a little about myself i/mm 55 and got diagnose about 4 yrs ago however had it since i was 12 told i had thyroid etc etc i was in the hospital and had a bad kidney infection which came out of blue never quite got over it and i always broke out in rashes from sun had terible joints and swollen knuckles told dr to test me 4 lupus and show rash he tested me and dna was over 700 went to rheummy and was diagnoized i have been in and out of hospital last 5yrs on so many meds and i get so tired of it all but i put on a happy faces 4 all aat work i/m known as a trooper and 75% of employees don/t even know i have a diease i/m getting better at amitting now i would just love to talk to u and others but i don/t know how to post yet can u help tks joyce

09-07-2006, 05:48 AM
First I'm going to address Bama- Sorry for not replying sooner. somehow I missed your post. Youc CAN NOT take actonel period. It builds up in your bones and never goes away. Even if you stop taking it 6 months before getting pregnant then you still have it in your system for life. So if you are thinking of getting pregnant I think you need to talk with your doctor. I do not think that it is being clearly stated by the drug company. I saw my regular rheumy yesterday and he said he was going to call the drug company because that is not clearly stated. So be careful :)

Joyce- Frist let me welcome you. Posting is pretty easy. You can start a new post of your own by clicking on the post new I think it says which is found at the top of the forum index. And if you want to post a reply to a current topic you just click on the post reply. And then type away and hit submit or preview button first if you wold like to see how your message is going to look. I hope that will help and we look forward to talking with you! It's hard sometimes to be sick and try and not act like you are. Even as many of us know we don't look like we are that sick. People just don't understand. It's important to educate yourself and others. Because if we don' t then lupus will continue to go unnoticed and not looked at by others as serious which it is!!!

joyce dous
09-07-2006, 07:31 AM
thank u 4 ur reply if it wasen/t 4 u getting this to me in my e mail i wouldn/t have gotten it . i don/t know how to get on my board. its great talking to u and ur right however i/m starting to show my ilness last yr everyone kept telling me i didn/t look good, haha if they only knew/// i am starting to get better telling people and this yr i went to the shore and came right out and told them that i was allergic to the sun and had lupus

thanks again god bless u joyce