mama whose curiosity knows no bounds

Posts tagged ‘methotrexate’

CellCept – not yet

Last December, I saw a new rheumatologist. He is a professor of very prestigious university and usually we don’t get to see him. But thankfully, I had another option available through my employer. My employer subscribes to Personal Medical Guidance doctors service. This service let’s the employee and their family see or phone a doctor and help understand the situation, or if needs arise, secure referral for the second opinion. The doctor I consulted clearly saw the need for a second opinion or switch the rheumatologist, as I continue to suffer. It’s incredible to see such a prestigious doctor in 3 weeks wait. I know seeing ANY specialists take at least a month, if not more. Let alone the famous one! I’m very happy that my employer has this service!

Of course seeing the well-known doctor has it’s drawbacks. First, the wait time was awful. I waited for about an hour to see a resident physician, then wait another 40 minutes to see the doctor. And even though I need to see him in a month, there was no opening. So he found a sole opening slot in the RESIDENT’s schedule, in a different campus where he doesn’t see patients directly and only teaches. This means that I need to drive an additional hour for the next appointment, but I think it’s worth it.

For the first time, I felt that all my concerns are legitimized. He didn’t minimize, or make a comment like “it’s all stress!” So I felt very validated. AND HE TOUCHED ALL MY JOINTS AND CHECKED THE MOBILITY! My 3rd rheumatologist touchd all my joints, but even she didn’t check my mobility.

Anyway, he decided that my methotrexate is not working – at least not in a way it should. I still have flare up about once a month and background joint pain is always there. I was taking 15 mg/week of methotrexate, and when it was raised to 20 mg, I felt much better but my liver wasn’t happy and showed in the blood test. So the new rheumatologist prescribed CellCept – an immunosuppressant that is usually used in post-transplant patients to prevent organ rejection. He told me that it has side effects like nausea so that the dose needs be slowly increased. I started at 1000 mg/day, a week later, 1500 mg/ day and then a week later, 2000 mg/day, the supposed working dosage. 

I did have nausea and it somehow kicks in 3 days after starting the certain dose. As I started on Wednesday, I suffered nausea for the last three weekends. But it wasn’t too bad. What was worse came from stopping methotrexate. By the second week, I had all the joint pains coming back, and this time, unlike any flare-ups, the pain doesn’t go away. Similarly, I had rather rough fatigue and inability to focus. But my inability to focus may be from another reason, which I plan to write in a separate blog.

Just to be functional, I need Vicodin now. I hate to take it, so I limit to 2 tablets a day maximum and if not needed, I do my best to rest. Therefore, I need to use it wisely. I usually reserve one for the evening as pain when I try to sleep is really awful. During the day, I try to distract myself by doing lying meditation or watching videos. Not having a consistent routing doesn’t help, either. Thanks to polar vortex part 2, the school barely opened for the new year. Although S is mature enough to leave her alone in the home, I still need to check in at least every few hours. And I don’t want to drive on icy road while on vicodin, although the medication doesn’t make me drowsy or high at all. This is just a safety precaution. Now I can type only because I’m on Vicodin. Otherwise, I can’t really do anything.

Since now Cellcept reached to the full dose, I expect the effect to kick in soon. But immuno suppressant seems to take days, if not weeks or months, to kick in, based on my experience with methotrexate and Plaquenil.  I hope it’s not the case for CellCept. I can’t wait to see the effect. It’s not an easy medication as it needs be taken in an empty stomach and having two more empty stomach medications (synthroid and Fosamax) is not very helpful. Now I take it with synthroid and I’m not sure if that is the problem or not. Pharmacist didn’t have the definitive answers, either. I do plan to ask the rheumatologist at the next appointment about 10 days away, though.  I might change the way I take if it doesn’t kick in soon. Ugh.

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Long, winding road – my lupus journey #10

With rheumatologist #3, communications generally went well.  But anti-dsDNA never went down and I still had lots of swollen joints, pain, and flare-ups.  And my call for short term prednisone increased.  So she rather wanted me on low-dose prednisone on a continuous basis.  We started at 15 mg.  It definitely helped because finally anti-dsDNA started to go down. She slowly decreased to 10 mg, but then anti-dsDNA stopped going down and frequency of flare-ups went up.  But she didn’t want to be on higher dose of prednisone because of the side effects (remember that ophthalmologist told me that I could take 20 mg for my comfort?).  Meanwhile, my “fibro”symptoms were improving.  I was skeptical of that diagnosis, but with Savella, the number of painful points among the tender points decreased.  I had to accept that Savella improved my fibromyalgia thus I indeed had it.

She added methotrexate (MTX) on my Rx list.  This is originally a chemotherapy drug and still being used mainly for leukemia at high dose.  This is basically an immuno-suppressant. But low dose methotrexate is the first line medication for rheumatoid arthritis and off-label use of methotrexate was pretty common for lupus.  It had its own risk like liver failure.  So she started at very low – 7.5 mg, and slowly increased by 2.5 mg (one tablet).  At first I didn’t feel much impact, although anti-dsDNA started to go down.

I felt the difference when the dose reached 15 mg.  My energy level was up, less pain in joint, less fatigue and less frequent flareups.  Except one problem.  I got insomnia.  Since 2006 when I had an extremely stressful event, I’ve been on Ambien at all time.  Ambien was heavens-sent.  I really needed sleep after a long day caring kids and everything else and sleep was hard to come by.  But that stopped working.  When I told about this problem, she suggested switching from MTX to Imuran, another immuno-suppressant, rather than increasing Ambien or exploring other sleep meds.

I was disheartened.  I finally got a combination of drugs that work on my lupus and now the doctor tells me to switch to something else.  I searched the Internet and found that Imuran had a black-box warning about its side effect — cancer! This freaked me out.  On top of that, my husband and S were visiting Japan at that time, and I was alone taking care of K and everything else.  I felt so alone and helpless.  I called an employer support program – my husband’s and my work were contracted with a company that had counselors on call 24/7.  The counselor referred me to a medical doctor on call to answer.  It’s like a free second opinion by phone.  The doctor’s response was great, but not necessarily reassuring.  Counselor saw the seriousness of my situation – I already told that I have lupus, fibro, and being suggested of Imuran, and I have a severely autistic son to raise.  This was apparently a red flag to her.  Although I didn’t ask for, she arranged a face-to-face counseling with a psychologist, making sure it is covered by health insurance because counseling could be long term.  This psychologist turned out to be helping me through the most difficult time in my life – my son’s transition to group home.

As for sleep med, I consulted yet another PCP and she prescribed Klonopin, which worked in the past, stopping Ambien.  So far, it is working and I’m slowly decreasing the dose hoping to be weaned off completely.

At least sleep meds issues were settled, so I continued on 15 mg MTX. My anti-dsDNA kept decreasing, to slightly above the normal level.  Prednisone was down to 7.5 mg. One time, anti-dsDNA went up a bit high.  The rheumatologist asked me, “what happened?”  She thought I had a stressful event triggering flare-up.  That particular time, I couldn’t connect to one particular event.  Otherwise, the things were stabilized, lupus-wise, though everything else was a mess. I will be writing about them when I’m ready.

Then spring of last year (2013), I received a letter.  The rheumatologist #3 was leaving.

To be continued.

B.

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