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Mary
Apr 3, 2008, 7:08:34 PM4/3/08
to Engelmann's Syndrome
Hi guys! Hope all is well with you all and I hope the weather is
treating you well through this winter time. It is rainy here in So.
California so I'm in bed hoping the pain will subside soon. My meds
won't even take the edge off today and that gets so exhausting!
My doctor is asking that I go to the Pain Clinic up at UCI (University
of California Irvine) I have visited there a few times and that is how
I got the recipe of meds that I'm on today. My doctor is looking for
me to go up there to see if there are other treatments available
today. This is a very scary time for me because there have been a few
times that my pain has gotten out of control while changing meds
around. I have been hospitalized because of having to change meds so
it is not something I like to do.
I would like to go into the pain clinic with your e-mails telling me
what pain meds you are taking. If you don't take pain meds you don't
need to reply. With the amount of pain I am in on a daily basis, I
have to be on pain meds.
Will you please e-mail me or reply to this post to tell me what pain
meds you are taking? If you have taken something that doesn't work,
please write it down. I want to go in there with as much information
as possible.
Please send me as much info as you want and think might help me.
Thanks group for helping me out.
~Msry
treating you well through this winter time. It is rainy here in So.
California so I'm in bed hoping the pain will subside soon. My meds
won't even take the edge off today and that gets so exhausting!
My doctor is asking that I go to the Pain Clinic up at UCI (University
of California Irvine) I have visited there a few times and that is how
I got the recipe of meds that I'm on today. My doctor is looking for
me to go up there to see if there are other treatments available
today. This is a very scary time for me because there have been a few
times that my pain has gotten out of control while changing meds
around. I have been hospitalized because of having to change meds so
it is not something I like to do.
I would like to go into the pain clinic with your e-mails telling me
what pain meds you are taking. If you don't take pain meds you don't
need to reply. With the amount of pain I am in on a daily basis, I
have to be on pain meds.
Will you please e-mail me or reply to this post to tell me what pain
meds you are taking? If you have taken something that doesn't work,
please write it down. I want to go in there with as much information
as possible.
Please send me as much info as you want and think might help me.
Thanks group for helping me out.
~Msry
Mary
Apr 3, 2008, 8:13:06 PM4/3/08
to Engelmann's Syndrome
Oops! I signed it Msry and it should be Mary!
clip
Apr 5, 2008, 5:35:42 AM4/5/08
to Engelmann's Syndrome
Hi Mary, I also take 2000 to 4000iu's of vitamin d3 and 50mgs per day
of the heart medication Cozaar, in an experimental attempt to regulate
the bad tgf-beta 1 gene. However I have never noticed any benefit from
any of that? Good luck, Blaise
of the heart medication Cozaar, in an experimental attempt to regulate
the bad tgf-beta 1 gene. However I have never noticed any benefit from
any of that? Good luck, Blaise
GRETCHEN OBST
Apr 5, 2008, 11:34:40 AM4/5/08
to clip, Engelmann's Syndrome
Mary,
I also take 2000u's of vit D3. I am also taking a med called calcitriol. they are weening me from that & hoping the D3 will replace it as it it basicly the same thing in different form. Now i'm on 0.25mcg BID . i used to be on 2x that. (0.5 mcg bid).
luck
Hi Mary, I also take 2000 to 4000iu's of vitamin d3 and 50mgs per day
of the heart medication Cozaar, in an experimental attempt to regulate
the bad tgf-beta 1 gene. However I have never noticed any benefit from
any of that? Good luck, Blaise
Christina
Apr 8, 2008, 10:04:25 AM4/8/08
to Engelmann's Syndrome
Hi Mary,
I am sorry to hear that you are having such a tough time with your
pain at the moment.
It seems to have been a tough few months for most of us, me included!!
In response to your email..
I am currently on rather mild pan relief, as I have had bad withdrawal
symptoms from the stronger painkillers that I have taken in the past.
My current medication is Paracetamol (2 x 500mg tablets, 4 times a
day), Ibuprofen (300mg, 3 times a day) and Pregabalin Capsules (75mg
twice a day).
This doesnt rid me of pain completely and when my pain is at its worst
it doesnt help much at all, but I am getting by alright and the side
effects are minimal!
The Pregabalin is an anti-epileptic drug, but is also prescribed as a
treatment for nerve pain and it works quite well. Although if you are
on a dosage that is too high it can make you really drowsy! Although
after a few nights of really bad pain and no sleep its quite a relief
to have a decent sleep!
Medications that I have taken in the past are as follows...
Tramadol Hydrochloride (100 - 200mg twice a day) - These are a
synthetic type of Morphine and worked well for about 2 years and on
many occasion was strong enough to rid me of pain completely. But
after that I became used to them and they became less and less
effective until they provided no relief at all. However, I suffered
terrible withdrawal symptoms when I stopped taking them, so this is
something to be aware of if you ever try them.
Solpadol (30mg Codiene, 500mg Paracetamol, 2 tablets 4 times daily) -
Again this worked well for me in the beginning and I took it for over
a year before I began having serious headaches and eventually my GP
told me to stop taking it. Again I suffered terrible withdrawal
symptoms while the drug worked its way out from my system.
Voltarol (Diclofena Sodium) (1 x 50mg tablet 3 times a day) - This was
prescribed to me a few years ago and I used to take it alongside a
wekaer version of the Solpadol (Cocodamol contained 8mg Codiene and
500mg Paracetamol). My pain was controlled by this for some time, but
as with all the medications it soon became less effective and it
started causing me stomach upsets.
I was also given a low dose of Pamidronate (a drug from the group
known as Bisphosphonates) in 1999. My doctor at the time explained
that it would be a miracle cure by reducing the rate of bone turnover
and therefore all-but eradicating the pain. HOWEVER... This is nowhere
near the effect it had on me and I must strongly advise against anyone
trying this drug!!
I never thought that anything could hurt more than CED pain, but how
wrong I was! Within a few hours of recieving the Pamidronate
intravenously I was in agony. I had the worst headache I have ever
known and couldnt open my mouth as my jaw was so painful. As the days
went by the pain spred to every single bone in my body and it was far
worse than any of the CED pains I have ever experienced... from the
top of my skull, to the tips of my fingers and toes was just agony and
this pain lasted continually for 6 weeks!
I know that this drug is listed on many medical pages referring to the
treatment of CED, but I have yet to meet anyone who has tried it and
recieved anything beneficial from it! Most of whom experienced the
same terrible effects as I did. And I wouldnt wish that on my worst
enemy!!
I have also tried Naproxen, Oruvail, Aspirin and Calcitonin, but these
had little/no effect.
I hope that this has been of some help and if you have any questions
then please dont hesitate to get in touch!
Love Christina, xx
I am sorry to hear that you are having such a tough time with your
pain at the moment.
It seems to have been a tough few months for most of us, me included!!
In response to your email..
I am currently on rather mild pan relief, as I have had bad withdrawal
symptoms from the stronger painkillers that I have taken in the past.
My current medication is Paracetamol (2 x 500mg tablets, 4 times a
day), Ibuprofen (300mg, 3 times a day) and Pregabalin Capsules (75mg
twice a day).
This doesnt rid me of pain completely and when my pain is at its worst
it doesnt help much at all, but I am getting by alright and the side
effects are minimal!
The Pregabalin is an anti-epileptic drug, but is also prescribed as a
treatment for nerve pain and it works quite well. Although if you are
on a dosage that is too high it can make you really drowsy! Although
after a few nights of really bad pain and no sleep its quite a relief
to have a decent sleep!
Medications that I have taken in the past are as follows...
Tramadol Hydrochloride (100 - 200mg twice a day) - These are a
synthetic type of Morphine and worked well for about 2 years and on
many occasion was strong enough to rid me of pain completely. But
after that I became used to them and they became less and less
effective until they provided no relief at all. However, I suffered
terrible withdrawal symptoms when I stopped taking them, so this is
something to be aware of if you ever try them.
Solpadol (30mg Codiene, 500mg Paracetamol, 2 tablets 4 times daily) -
Again this worked well for me in the beginning and I took it for over
a year before I began having serious headaches and eventually my GP
told me to stop taking it. Again I suffered terrible withdrawal
symptoms while the drug worked its way out from my system.
Voltarol (Diclofena Sodium) (1 x 50mg tablet 3 times a day) - This was
prescribed to me a few years ago and I used to take it alongside a
wekaer version of the Solpadol (Cocodamol contained 8mg Codiene and
500mg Paracetamol). My pain was controlled by this for some time, but
as with all the medications it soon became less effective and it
started causing me stomach upsets.
I was also given a low dose of Pamidronate (a drug from the group
known as Bisphosphonates) in 1999. My doctor at the time explained
that it would be a miracle cure by reducing the rate of bone turnover
and therefore all-but eradicating the pain. HOWEVER... This is nowhere
near the effect it had on me and I must strongly advise against anyone
trying this drug!!
I never thought that anything could hurt more than CED pain, but how
wrong I was! Within a few hours of recieving the Pamidronate
intravenously I was in agony. I had the worst headache I have ever
known and couldnt open my mouth as my jaw was so painful. As the days
went by the pain spred to every single bone in my body and it was far
worse than any of the CED pains I have ever experienced... from the
top of my skull, to the tips of my fingers and toes was just agony and
this pain lasted continually for 6 weeks!
I know that this drug is listed on many medical pages referring to the
treatment of CED, but I have yet to meet anyone who has tried it and
recieved anything beneficial from it! Most of whom experienced the
same terrible effects as I did. And I wouldnt wish that on my worst
enemy!!
I have also tried Naproxen, Oruvail, Aspirin and Calcitonin, but these
had little/no effect.
I hope that this has been of some help and if you have any questions
then please dont hesitate to get in touch!
Love Christina, xx
Vera
Apr 21, 2008, 4:06:03 AM4/21/08
to Engelmann's Syndrome
Hello Mary,
these are the medications our daughter Hannah (11 years old, height:
124cm, weight: 20.5kg) has taken during the last years:
Prednisone: helps a lot with the pain, ability to walk and appetite
when taken in high dosages, but causes as a side effect a severely
reduced growing velocity. Hannah is now taking a dosage of 7.5 mg
three times a week.
Rofecoxib (Vioxx): helped a lot, but for 2-3 years it is prohibited in
Europe, because it caused severe heart problems in some older
patients.
Tramadol: helps as an additional pain killer (100 mg in the morning
and 100 mg in the evening), improves her nights.
Naprosene: She is taking it now as a substitute for the Vioxx (125 mg
in the morning and 125 mg in the evening) and it is effective.
Pamidronate: Between the age of 5 to 7 years, Hannah got five
infusions with Pamidronate, because her doctors were convinced that it
might help her. The Pamidronate should also substitute the Prednisone.
During the first infusion she experienced flu-like side effects, like
fever and pain in her legs, from the second infusion on we noticed no
more side effects but as the Pamidronate has not been effective we
stopped the infusions and gave her again a higher dosage of Prednisone
that helped her much better.
Please tell us what kind of medication the doctors advised you to take
as we are also searching for a better medication. The combination
Hannah is taking at the moment helps her to ease the pain, but it does
not take away the pain completely. I also hate the Prednisone because
it causes such big problems with the growing, but it seems impossible
to get rid of it, because whenever we are trying to reduce it Hannah
experiences a much higher amount of pain.
Many greetings
Vera and Hannah
these are the medications our daughter Hannah (11 years old, height:
124cm, weight: 20.5kg) has taken during the last years:
Prednisone: helps a lot with the pain, ability to walk and appetite
when taken in high dosages, but causes as a side effect a severely
reduced growing velocity. Hannah is now taking a dosage of 7.5 mg
three times a week.
Rofecoxib (Vioxx): helped a lot, but for 2-3 years it is prohibited in
Europe, because it caused severe heart problems in some older
patients.
Tramadol: helps as an additional pain killer (100 mg in the morning
and 100 mg in the evening), improves her nights.
Naprosene: She is taking it now as a substitute for the Vioxx (125 mg
in the morning and 125 mg in the evening) and it is effective.
Pamidronate: Between the age of 5 to 7 years, Hannah got five
infusions with Pamidronate, because her doctors were convinced that it
might help her. The Pamidronate should also substitute the Prednisone.
During the first infusion she experienced flu-like side effects, like
fever and pain in her legs, from the second infusion on we noticed no
more side effects but as the Pamidronate has not been effective we
stopped the infusions and gave her again a higher dosage of Prednisone
that helped her much better.
Please tell us what kind of medication the doctors advised you to take
as we are also searching for a better medication. The combination
Hannah is taking at the moment helps her to ease the pain, but it does
not take away the pain completely. I also hate the Prednisone because
it causes such big problems with the growing, but it seems impossible
to get rid of it, because whenever we are trying to reduce it Hannah
experiences a much higher amount of pain.
Many greetings
Vera and Hannah
GRETCHEN OBST
Apr 21, 2008, 5:36:33 PM4/21/08
to Vera, Engelmann's Syndrome
Hi all,
As I read everyone med list, I realize that i have been on most of these @ some point in my life. I've been on so many that I can't remember all,esp b/c i have soo many 4 my epilepsy as well. I do find that the prednisone works really well.
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