A few things to think about

March 11, 2010 at 4:22 am

Hi, Jeff, I have just a few things maybe for you and your team to consider.

First for pain, since you have to stop OxyContin, have you ever tried MS Contin or a fentanyl patch? Both give sustained pain medication. Another one that lots of people do not think about is methadone–in part because it has been associated with drug withdrawal management, but it is really a good pain drug–with a long, sustained half-life. The long half-life helps that pain managment is stable and also it is more “livable” meaning that it can help people to keep living life–it does not have as much ups and downs or as much sleepiness or changes in how you feel. I have seen very good success with kids with chronic pain on methadone.

Second, regarding pain, additional medications like Cymbalta might help with the neuropathy pain. Lyrica did not work for me, but Cymbalta made a big difference. Lyrica is a cousin drug to Neurontin. At the support group that I attend, the neurologist argues that there is no maximum dose of Neurontin. They have only studied it up to a dose of 3600 mg/day and many people have no added benefit after a moderately high dosage is reached, but some people do report added benefit as the dose is raised to the higher levels. Like any medication, one has to balance with side effects and also it is best to not raise the dose too rapidly.

Regarding steroids–as you know, these have good and bad effects and the balance of this is very, very dose dependent. People want to get off steroids rapidly because high doses of steroids have serious side effects. Lower doses do not have so much badness. Often it is very important for an autoimmune illness to be slow and gentle with tapering steroids so that there is not that flair. If you have done pretty well on prednisone 5 or 10 mg a day, for example, taper rather more rapidly down to this level and then stay on that for a couple of weeks and then start tapering every other day–also very slowly. Prednisone 5 mg a day is basically replacement for what your body makes (the exact replacement dose depends on your size–height and weight). I have seen tapering work on the every other day plan when it fails on the daily plan and every other day steroids are much less “toxic” to the body–less effect on bones, glucose, ability to handle stress, etc. I have seen this work when straight daily tapering did not. The other option is pulse steroids–such as weekly “high” doses. This is associated with much fewer side effects, but may suppress the autoimmune response well. Some people use this for CIDP with good results when the daily doses did not work for them. It is also used to bad problems associated with lupus, for example. A lot of the kids I help to care for get pulse steroids (decadron po once a month over 4-5 days) to control their neurologic autoimmune disease. Four days a month, they may be moody, but it is not as hard on them as the sustained daily or even every other day steroids and, obviously, works.

The biggest point of steroids–to emphasize again–is to try to get the disease controlled on as low a dose as seems reasonable and then to gently taper from there–being really, really slow at the end. The every other day tapers from 5 mg daily prednisone might be as slow as dropping one mg every week–for example 5 mg alternated with 4 mg on alternating days for a week (or over 6 days to make it even), then 5 mg alternated with 3 mg for a week, then 5 mg alternated with 2 for a week, then 5 mg alternated with 1 for a week or two, then 5 mg every other day for a week or two, then 4 mg every other day for a week, then 3 mg every other day for a week, etc. It may take 2-3 months, but it is low dose and it is gentle. I explain it as sneaking out the back door so that the autoimmune disease does not notice that the steroids are being withdrawn.
The point is that if there is a flair, all the inflammatory cells get excited and the vicious cycles gets going again. If there is not flair, there is plenty of time for healing as well as for all to stay settled down.

Last question/suggestion. Have you been tried on indomethacin? It something helps with pericarditis and other autoimmune/rheumatologic problems as well as pain. Personally, this is managing symptoms and steroids (despite their potential to do harm) may actually work to settle down the disease, so if it were me, I would want something that might help the underlying diseases like maybe even pulse weekly or biweekly steroids and as second choice maybe the slow gently taper because this may also settle disease down. Pericarditis with the pain associated is easier to tell promptly if there is a flair and with nerves, one has to have enough damage accumulate to know something is not working well enough–so it is harder to manage when the disease is smoldering/lower grade but still active.

I hope that something is found to help settle both autoimmune processes down and that you get stronger.