My boyfriend, now 22 years old, was born with a debilitating form of
JRA and OA; they realized he had it when he was 6 months old and his
condition has been worsening ever since. The pain from the condition
forced him on painkillers (Oxycontin) when he was young, and he became
addicted to narcotics because of this. He no longer is allowed to use
narcotic pain relief. We all thought he was in for a life of hell
until when in November his rheumatologist suggested that he get a new
injection: Remicade. After the first two injections, he was actually
able to fly out of bed without bouncing, nearly run up the stairs, and
do all sorts of other things that he hadn't been able to do in years.
However, after the second injection (he gets injections every 4 weeks),
the effectiveness of the treatment has steadily decreased to the point
where it has not helped at all. He wakes up every morning with muscle
cramping and in such severe pain it takes him about half an hour to get
to the couch. He is actually doing worse than he was before he got
started on the treatment. Admittedly, some of this can be attributed
to the weather; we live in Central Pennsylvania and it *is* mid-winter.
But I really don't think that all of his problems are because of the
cold.
I spoke with his mother about some of the precautions about Remicade
and the "warning signs" that he was showing - muscle/joint pain, severe
fatigue, dark urine, fungal infections, severe cough with excess sputum
- and she waved me off, saying that Remicade worked, and that they just
needed to increase his dosage - already! He has Hepatitis C and is on
other medication for his addiction. Although his doctor knows this,
I'm still worried that he's having an adverse reaction because of his
liver problems, although his liver specialist told him his liver was
just fine in October. Have these problems occurred with anyone else
who has had the Remicade injection? I've looked online and have not
seen many/any stories of people whose pain has actually increased since
beginning treatment.
Are there any pain remedies/habits that I should know about/talk to him
about that don't include ibuprofen or narcotics? Can anyone help at
all? He's very depressed about his situation, and so am I. I just
feel that there has to be something we're missing; how can you be 22
and barely be able to walk at all?
debbie m - 05 Mar 2006 20:24 GMT
(((((((Jenn)))))))
I'm so sorry to hear about your boyfriend. He sounds like he has been
through so much. I don't know anything about Remicade, but there are
some here who have used it.
Maybe the will be along soon to answer some of your questions. I hope
you get some answers and your boyfriend feels better soon.
debbie m.
blades49456 - 05 Mar 2006 21:49 GMT
Enbrel, Remicade, and Humira are all anti-TNF medications, but not
exactly alike.
A different kind of medication, Rituxan (Rituximab) has proven useful
for some autoimmune diseases, including RA. It might be worth looking into.
--
Bruce (WG '97)
Mary Z - 06 Mar 2006 14:02 GMT
> spoke with his mother about some of the precautions about Remicade
>and the "warning signs" that he was showing - muscle/joint pain, severe
[quoted text clipped - 8 lines]
>seen many/any stories of people whose pain has actually increased since
>beginning treatment.
I have been on Remicade for 5 years and it put me in remission. Dose
increases are very common, and many of us also take the drug at
shorter intervals. This is all very common, not sure where you read
it is unusual. Remicade doesn't really effect the liver so I would
be surprised if there was an effect. Joint pain can increase if the
drug is not working well. I am slightly more susceptible to fungal
infections but it is not a big deal. Give the dose increase a chance
before you decide Remicade is not working. You might have him get a
chest x-ray if lung issues are a concern. RA can effect the lungs,
especially if the disease is not under good control. Good luck. --
MZ