Enbrel

[troysmom]

I did a search on here about Enbrel but didn't get too much information.  I wanted to get the opinions of you folks.  Troy see his rheumy on Wednesday, to review his symptoms and to go over his recent blood test, we are back to getting the blood drawn every 4 weeks.

Someone mentioned I should ask the rheumy about Enbrel it can be used for children with arthritis, in Maine here it is already cold and these months get hard for Troy.  He gets so stiff, his body feels more heavy then usual and he gets fatigued very easily.  I would like to vamp up his treatment some way to help deal with the way the cold settles into his bones, he never feels warm enough.

What are your thoughts on Enbrel, for some of the veterans on here I really value your opinions, opinions from real people who fight the battles everyday, not opinions from doctors or pharmacetucal companies, real people, real stories, real opinions.

Thanks

[sierrra]

My opinion is that it is a very useful drug, but best used short-term because of its risks. I work with someone who had an acute onset of RA and used Enbrel for about a year. She regained her health and went off the drug with her doctor's blessing. She continues to do well about a year later.

Sierra

[Cheryl F]

Troysmom,

Did Troy ever get the quality Lyme testing done.  I would be very concerned to begin Embrel without that information from a reliable source.  A biologic immune suppressive drug on top of a Lyme infection could mask problems. 

That's just my two cents.

Cheryl

[linda]

Hi Troys Mom,

I know I'm going to shock some people, but in Troy's case I would avoid any of the biologics unless is symptoms become life threatening. I don't know his complete history, but even my rheumy doesn't like giving Enbrel to kids because the cancer risk is higher. Also it seem that young people are being affected more seriously by this swine flu, and he would be more susceptible to any kind of infection, but that one really concerns me. He would have to get both flu vaccinations. Remember that these drugs are not for short term use, and it's best if they don't have to be started at such an early age, if at all. Having said that, they do work, and I would go to that option before prednisone, if I had a choice.

I've been on all the biologics, I'm currently on the newest one called Simponi, a once /month injection. I'm also on prednisone, but trying to wean off of it-again. It's very difficult. I hope you don't have to make a decision about this, but if you do, ask your doctor for the Enbrel injections that you mix yourself. It's easy to do, and doesn't have the same preservative as the premixed injection. That preservative, which is also used in Humira, is painful, and with Enbrel being a twice a week injection, it makes for a difficult time.

I know it must be difficult to see your son in pain, but i do think the risk/benefit for someone his age is too great unless there are no other options. I'm going to try a TENS unit for pain since it is supposed to have the same effect as acupuncture, which has worked very well me but is not in my budget at this time. There are some other alternatives for pain and inflammation that your doctor might know about, too. Good luck, and give that brave kiddo a hug from us!

[Trudi]

[user=11]linda[/user] wrote:

I know I'm going to shock some people, but in Troy's case I would avoid any of the biologics unless is symptoms become life threatening. I don't know his complete history, but even my rheumy doesn't like giving Enbrel to kids because the cancer risk is higher. Also it seem that young people are being affected more seriously by this swine flu, and he would be more susceptible to any kind of infection, but that one really concerns me. He would have to get both flu vaccinations. Remember that these drugs are not for short term use, and it's best if they don't have to be started at such an early age, if at all. Having said that, they do work, and I would go to that option before prednisone, if I had a choice.

Hi Troysmom–

I agree with Linda in her assessment.

In reply to one of Linda's posts on managing her pain, I talked about low-dose naltrexone (LDN).  Here is my post and the link to the thread:

“Endorphins” caught my eye.  At my visit with my primary doctor, Dr. D.M., on Tuesday, she suggested LDN for pain and inflammation.  Since then, I have been doing some research and found that LDN–

…clearly is the most potent endorphin stimulant that we know of, and used in conjunction with the other endorphin-friendly interventions holds much promise for those suffering from the often devastating effects of immune dysfunction.

http://www.westonaprice.org/askdoctor/low-dose-naltrexone-leukemia.html

Dr. D.M. spent a week with Dr. H in New York learning about Lyme.  Dr. H is also an advocate of LDN–

Which brings me to the second “I”: Inflammation, which, according to Horowitz, causes free radicals and oxidative stress that damage cell membranes, mitochondria, and nerve cells. Pro-inflammatory cytokines also create symptoms through other mechanisms. In addition to antioxidants, such as fruits and vegetables, magnesium, zinc, omega-3 fatty acids and CO-Q10 (see my post on April 18th), Dr. Horowitz advocates low dose Naltrexone (one of the new buzz drugs of 2008) to modulate cytokine response, and glutathione for “pulling” cytokines out. Glutathione, by itself and when taken daily, improves Dr. Horowitz's patients' symptoms by an average of 20%. That is significant.

http://lymebytes.blogspot.com/2008/07/addressing-three-is-of-illness.html

When you're in chronic pain and nothing seems to help, it's easy to “hate life.”  You're in my prayers–I sincerely hope something will give you substantial help soon!!

http://www.rbfbb.org/view_topic.php?id=3212&forum_id=1&highlight

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Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Joe M]

Hi

If Troy had JRA I might have a different opinion, but after doing some reading on dermatomyositis, using Enbrel is not something I would do.

Tumor necrosis factor (TNF) inhibitors such as etanercept (Enbrel) and infliximab (Remicade) have not been shown to be effective in trials with small numbers of people with polymyositis or dermatomyositis.

Source:

http://www.mayoclinic.com/health/dermatomyositis/DS00335/DSECTION=treatments-and-drugs

Best wishes to you and Troy.

Joe

[Parisa]

Troysmom,

I can understand you wanting to speed up the AP process but I feel that Enbrel would not be a step in the right direction.  I would definitely pursue Lyme diagnosis (as overwhelming as that may seem). 

[superperroRA]

have you considered voltaren? I know I sound like a broken record, but read what I've said about voltaren here
http://www.rbfbb.org/view_topic.php?id=3284&forum_id=1

[Eva Holloway]

Hello troysmom,

Enbrel can also cause infections and if he is very easy to get aninfection I would not go that route. I took Enbrel for a year and had a lot of infections and got a bad fungus in my sinus, hands and feet. I know you want the best for your child and also that he would feel better soon.:(

I have been on LDN for two months now and doing better. I am not sure if it is advisable for children to take it. Talk to your doctor first.

Eva

Eva Holloway

[Author]

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