Rheumatologist put me on Cellcept and I was able to start it today at a mid-to-low dose (1g/d). Supposedly it can take a drastically different amount of time to "kick in" just like Plaquenil ranging from days to 6+ months, so we'll see how it goes from here.
I'll keep you guys in the loop as far as how well it works and if there are any side effects.
Btw, if any of you guys need a good doctor, I recommend the one I'm seeing in Houston, TX. I've seen dozens of doctors, and she's by far one of the best. You spend no more than 5-10 minutes waiting in the lobby/room before you see her, she listens, she's very intelligent and up to date. I highly recommend her if you're having problems with your current doctors and are within driving range. I know us southerners don't have many options because all of the Sjogren's specialty places are on the eastern seaboard, but I'm very glad I was told about her. If you want her information shoot me a PM and I'll get it to you.
Glad to hear that you are so happy with your doctor...that makes all the difference in the world doesn't it?
Please keep us posted on how the cellcept works for you...hope it helps!
I started cellcept last year when I had a big skin rash from sun exposure (lupus) which didn't seem to go away with just plaquenil. I noticed cellcept starting to make the rash better within a couple of weeks. It was totally gone in a month. I hope you find relief with it. I haven't noticed any bad side effects of it.
I've been doing much better on it, so my rheumy suggested I reduce the amount and now go off it entirely. He also said he has some patients that only need it in the sumer. (I like my rheumy - in Seattle - as well!)
Quote from: Sooki on April 03, 2012, 10:06:07 AM
I started cellcept last year when I had a big skin rash from sun exposure (lupus) which didn't seem to go away with just plaquenil. I noticed cellcept starting to make the rash better within a couple of weeks. It was totally gone in a month. I hope you find relief with it. I haven't noticed any bad side effects of it.
I've been doing much better on it, so my rheumy suggested I reduce the amount and now go off it entirely. He also said he has some patients that only need it in the sumer. (I like my rheumy - in Seattle - as well!)
That's great that it worked so well for you. My rheumy said that they're (rheumatologists in general) starting to prescribe it by the gallon, even though it has never been FDA approved for any autoimmune disease because it's safer than a lot of the chemo drugs and usually works well. It feels good to know that my doctor is being proactive for once and that you're doing everything that can be done; there are a lot of shitty doctors out there...and it's a shame that many of us have to put up with them for years.
You mind if I ask which dose you were started at or have taken?
It's definitely expensive though! $1450 for the brand name and $850 for the generic, insurance covers about half that. I think that's a 60-day supply though.
Wooly- I take 500 mg of the generic form, mycophenolate, each day. When I started, I was on 2 pills a day (1 g). My insurance doesn't pay for my prescriptions, but it does give me the insurance-negotiated price.
At Costco, when I was taking 2 per day, I was paying $75 for a month's worth. For comparison, I just checked drugstore dot com (although I've never used them) and they quote 100 pills (10 wk supply) for $130. The prices you mentioned sound really high. It's still expensive, but not like that.
Costco has a prescription drug program for people without prescription coverage. I think the drug price is about equal to the insurance-negotiated price. You might ask them about it, if you're interested.
Unfortunately, the closest Costco is 140 miles in the same city that I see my rheumatologist in.
I'm paying $300 for Androgel and Evoxac, each. And that's with insurance. Walgreen's is probably taking me to the cleaners... so it might be worth it to the make the drive and get them all filled there every month, probably save $600+ if your prices are accurate.
But I was told that I'll probably be able to discontinue the androgel and evoxac once the Cellcept kicks in.
I hadn't really thought Cellcept had helped dryness. I noticed the big difference in joints and skin. Nothing changed when I halved the dose. But now that I'm trying no cellcept, I woke up with dry dry eyes and mouth. I'm not sure I'm happy about being off the cellcept. So, Cellcept may indeed help your dryness and enable you to get off evoxac (even if not right away).
Hi
just wanted to say we have several dermatology pts on Cellcept and they have reported no adverse side effects. We monitor them with regular scheduled lab work as well.
So glad for you that you like your rheumatologist, that is such a plus when your dealing with AI problems.
eye2dry
Sooki, your rheumatologist should not have taken you off if you had a good response. Sjogren's does not go into remission like other autoimmune diseases.
I have had absolutely no discernible side effects so far so that's great...
I'm pretty sure he'll let me go back on if I get worse. I appreciate that he's trying to keep me on the lowest dose I need.
How's it going to for you? Any side effects? Any improvement?
What an uplifting post. It is wonderful to hear about members of this forum that improve - - it can and does happen!
That trip to Mayo was certainly worth the time and effort.
Wishing you many more good days ahead.
Quote from: Sooki on April 05, 2012, 09:19:47 AM
I'm pretty sure he'll let me go back on if I get worse. I appreciate that he's trying to keep me on the lowest dose I need.
How's it going to for you? Any side effects? Any improvement?
I've felt so good over the last couple of days that I wasn't sure whether I should post it or not, because everything I've heard says that the medication should take weeks to kick in.
I don't know what's causing it but I've had more energy and my cognition has been better than it has been in a very, very long time. Yesterday I was able to play basketball for two hours, clean the house and the car, shop, and probably spent no more than 30 minutes inside the house. Also started doing what I did for a living again, something I haven't been able to do in over six months.
Normally when I do anything strenuous, I wake up with severe muscle pains and really bad fatigue (spend the entire next day in bed). Today I jumped out of bed... but the best part is it seems like my brain is functioning again and not stuck in snapshot mode due to all the brain fog.
Autoimmunity has it's ups-and-downs and quite a bit of deviation so I don't want to say it's the Cellcept yet, but I do want to say that I'm doing great right now. Just hoping this lasts!
QuoteWhat an uplifting post. It is wonderful to hear about members of this forum that improve - - it can and does happen!
That trip to Mayo was certainly worth the time and effort.
Wishing you many more good days ahead.
Thank you!
I wouldn't recommend Mayo. They did end up giving me my diagnosis but I could've saved a
lot of time and effort by getting a repeat salivary gland biopsy and CT scan down here. My intake doctor was pretty good but even he said that, "we're not really suited to this kind of thing here" and he recommended that if I had anymore problems that I should be seen at John Hopkin's. He actually recommended them and gave me their information. He also had a few underhanded things to say about their rheumatology department.
My rheumatologist back home is very pro-treatment and with the information Mayo gave her, she decided to put me on the CC.
Wooly - I'm so happy for you! Good days are good days no matter the cause! I hope the cellcept is the cause and continues to improve your quality of life. Isn't it great when meds do what they're supposed to?
If Costco pharmacy can't help you, you might check some of the online sources. The Dr would just send the Rx there. I think, maybe, you don't need to be a member to use the the Costco Pharmacy, but I'm not sure about that. You do need to be a member to enroll in their Rx program, though.
Keep us posted on how the cellcept is working for you.
Hey woolygimp I'm so glad someone is having good results. I see my rheumy (I'm searching for a new one in Boston) in 2 weeks and I'll bring up Cellcept among other stuff. Interesting comment by your MD about John Hopkins. I just returned from JH and had a devastating experience. If you would PM me I would love to hear about the "underhanded things about the rheumy dept. @ JH". I was seen @ the SS Center in the rheumy dept.
Be kind to yourself, Ceceraven
He was referring to the Mayo clinic rheumatology department which is notorious around here for their amount of emphasis on having positive serology results, which gave me problems because I'm seronegative. I no longer have reason to go to John Hopkins, Mayo gave me a diagnosis (through the neurology department) and I have a wonderful rheumatologist down here.
Sorry for the confusion. Best of luck. ;D
woolygimp, I am so glad you are happy :) with your doc!
Be good to yourself, Ceceraven
Woolygimp,
I too had a very quick response to cellcept. I noticed a huge difference in about 2 weeks (at 1gm/day). Sadly, I got an unrelated, possibly life threatening, infection and had to stop. I never did restart it, but may consider it at some point again.
Still doing great. Been very active the last week and going on 4-5 hours of sleep on some days, and waking up refreshed. Normally, I'd sleep 8-12 hours and wake up almost like I had never slept to begin with.
I do want to say that Cellcept isn't the only thing I'm doing to treat this. I'm on a gluten free, dairy free, soy free diet, prednisone (tapering), Plaquenil, and vitamins.