Update: not good for my little girl

[Joe M]

Hi Z, here is a reprint from a post of mine from a few months ago that sums up our story: (sorry I don’t know her exact lab numbers, but as you know lab numbers don’t always reflect severity of the disease or pain of the patient):

Background: RA hits wife like a truck in 2002. Lived in denial for half a year waiting for it to go away. Found Dr. Brown’s book and went to see Dr. S in Iowa, a short trip for us. Spent a year on AP with good days and bad. Towards the end of the year on AP, there were more bad days than good. Tried at-home IV’s for a boost, switching to brand mino, all the suggested adjustments. Finally decided quality of life was more important that quantity of life, especially raising two young daughters. A short prednisone taper knocked out the flare while she started Humira. After pred taper, we were cautiously waiting for the RA to return, but it never did. Now, ten years later, after her last checkup a couple months ago, there is still no radiographic damage to her joints, she has never had an infection worse than the common cold, and most days we forget she has/had RA. It does start to creep back if she forgets to inject on a regular basis, but we are also approaching 50 now and some aches and pains are simply part of life.

Whenever people ask me about how she is doing and my opinions on the various treatments, here is what I think are the key points:
1. The newer biologics (Enbrel, Humira, etc) are NOT conventional RA drugs. The conventional RA drugs, like methotrexate and plaquenil, were borrowed from other diseases. The biologics were developed specifically for auto-immune diseases and target only one out of millions of proteins in the joints. They are cutting edge technology. I compare the biologics to the smart bombs we have now, as opposed to something like methotrexate which is like carpet bombing.
2. The fear of these new biologics is unwarranted. Your chance of getting some weird infection that kills you is less than your odds of dying in a car crash today. Every year people die from taking Tylenol, aspirin, and other seemingly harmless drugs. Everything in life is a risk calculation.
3. It is a personal decision regarding how much pain someone is willing to put up with. My only point here is that with all the treatments now available for RA and similar diseases, nobody has to suffer on a daily basis like they did 20-30 years ago.
4. Once I came to the realization that the cause of RA will probably never be found, as I believe it is a combination of genetic susceptibility combined with certain environmental and mental factors, it was easier to make the decision to treat the symptoms. The decision is different for everyone, but for us quality of life was the top priority.
5. The AP vs Biologic debate does not have to be contentious. Everyone is free to pick the treatment that they are comfortable with. But I see synergy. The biologics work. The statistics do not lie. Why not start analyzing the similarities between the actions of minocycline and enbrel, for example? By finding commonalities, better treatments can be developed. I never saw it as an us vs. them thing, which many seem to. Whatever works is my mantra.

[Anonymous]

Joe M,.
I nearly died after 3 injections of Humira. It is very dangerous medication.
Linda L.

[Joe M]

Hi Linda,

I’m glad you made it through and hope you are doing well!

Unfortunately you were probably one of the rare few who get an infection like pneumonia. The National Institute of Health here in the US did a large study which concluded: “Analyses of these data demonstrate that long term adalimumab treatment is generally safe and well tolerated in patients with RA.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798196

So calling Humira dangerous is maybe a bit much. It would be like calling aspirin dangerous because of the few deaths per year caused by aspirin. But you kind of made my point. It didn’t work for you and after three shots you quit. There is no waiting a year or two to see if it works.

Kindest regards,
Joe

[zeljana]

@Joe M wrote:

Hi Linda,

I’m glad you made it through and hope you are doing well!

Unfortunately you were probably one of the rare few who get an infection like pneumonia. The National Institute of Health here in the US did a large study which concluded: “Analyses of these data demonstrate that long term adalimumab treatment is generally safe and well tolerated in patients with RA.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798196

So calling Humira dangerous is maybe a bit much. It would be like calling aspirin dangerous because of the few deaths per year caused by aspirin. But you kind of made my point. It didn’t work for you and after three shots you quit. There is no waiting a year or two to see if it works.

Kindest regards,
Joe

Linda- I am sorry that you had to go through nearly death experience to see that “it does not work” for you.

Joe M – this is also my point. I do not want that my daughter be a statistic number in side effects. She is my responsibility to the end of my life. She is not a lab rat, she is just a helpless little human being with a name, not some number.
I am scared of biologics and I think that most of people on the RBF are trying to find another way to treat their arthritis to stay away from this new age drugs.

[Joe M]

Zeljana, that’s what I’m saying. We chose AP too. Then we chose something else. There are choices.

I have a very very low tolerance for seeing my loved ones in pain. Other people make other choices. My only point is there are choices and a little education goes a long way.

Best wishes,
Joe

[Trudi]

Zeljana–

The following website may be of help in your future decision making as to what you would feel comfortable in giving your daughter: http://www.askapatient.com/rateyourmedicine.asp

Some people do well on drugs, others do not. I am one of those that do not. I found out that I am homozygous for the MTHFR mutation. This means that my body only works 10-30% in what is called “methylation”–the biggest problem being an inability to detox. If you cannot detox the drugs, you will have major problems. I would encourage having your daughter tested for this mutation. Treatment is high doses of the active (methylated) b-vitamins, folate, b12, and b6. In my case, I can only tolerate supplements that are free of fillers, dyes, and any other additives. I have not needed pain meds for 5 months, so know that treating my MTHFR is helping!

All the best to you and your daughter–
Trudi

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?

[zeljana]

@Trudi wrote:

Zeljana–

The following website may be of help in your future decision making as to what you would feel comfortable in giving your daughter: http://www.askapatient.com/rateyourmedicine.asp

Some people do well on drugs, others do not. I am one of those that do not. I found out that I am homozygous for the MTHFR mutation. This means that my body only works 10-30% in what is called “methylation”–the biggest problem being an inability to detox. If you cannot detox the drugs, you will have major problems. I would encourage having your daughter tested for this mutation. Treatment is high doses of the active (methylated) b-vitamins, folate, b12, and b6. In my case, I can only tolerate supplements that are free of fillers, dyes, and any other additives. I have not needed pain meds for 5 months, so know that treating my MTHFR is helping!

All the best to you and your daughter–
Trudi

Thank you for all this informations!
How did you find out that you are homozygous for the MTHFR mutation? What happened that it was necessary to test on it?

Zeljana

[Trudi]

I had elevated homocysteine: http://m.circ.ahajournals.org/content/111/19/e289.full

Take care,
Trudi

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?

[zeljana]

@Trudi wrote:

I had elevated homocysteine: http://m.circ.ahajournals.org/content/111/19/e289.full

Take care,
Trudi

Thank you!

Zeljana

[Trudi]

This article is very good at explaining homocysteine: http://drbenkim.com/articles-homocysteine.html
It might be easier for you to read and understand.

Best to you,
Trudi

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?

[Suzanne]

@Joe M wrote:

1. The newer biologics (Enbrel, Humira, etc) are NOT conventional RA drugs. The conventional RA drugs, like methotrexate and plaquenil, were borrowed from other diseases. The biologics were developed specifically for auto-immune diseases and target only one out of millions of proteins in the joints. They are cutting edge technology. I compare the biologics to the smart bombs we have now, as opposed to something like methotrexate which is like carpet bombing.

However, most RA and JRA patients continue to use mtx in conjunction with a biologic. The carpet bombing doesn’t stop.

I know we would have tried Enbrel if my daughter had pain that affected her quality of life. (Humira is a painful injection for most kids, so painful that many refuse it once they are old enough not to be forced. Ped rheums like to start with Enbrel and hope it works, if not Humira is next.) At the same time, a mother’s instinct means a lot! A LOT! The easiest thing to do is go along with whatever the doctors say, but sometimes what they say makes no sense in your situation. It isn’t always fear pulling you in another direction, it is what you have seen happen to your child already. No mother wants to makes anything harder than it has to be.

My heart goes out to both Zeljana and her daughter.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[zeljana]

@Suzanne wrote:

@Joe M wrote:

1. The newer biologics (Enbrel, Humira, etc) are NOT conventional RA drugs. The conventional RA drugs, like methotrexate and plaquenil, were borrowed from other diseases. The biologics were developed specifically for auto-immune diseases and target only one out of millions of proteins in the joints. They are cutting edge technology. I compare the biologics to the smart bombs we have now, as opposed to something like methotrexate which is like carpet bombing.

However, most RA and JRA patients continue to use mtx in conjunction with a biologic. The carpet bombing doesn’t stop.

I know we would have tried Enbrel if my daughter had pain that affected her quality of life. (Humira is a painful injection for most kids, so painful that many refuse it once they are old enough not to be forced. Ped rheums like to start with Enbrel and hope it works, if not Humira is next.) At the same time, a mother’s instinct means a lot! A LOT! The easiest thing to do is go along with whatever the doctors say, but sometimes what they say makes no sense in your situation. It isn’t always fear pulling you in another direction, it is what you have seen happen to your child already. No mother wants to makes anything harder than it has to be.

My heart goes out to both Zeljana and her daughter.

Thank you Suzanne!
You have made me cry.
Your words mean a lot to me. Being a mother is a very difficult task especially when your child is sick.

Zeljana

[lemons]

QUESTION FOR JOE M : Hello Joe I have read some of your posts and in them you have compared Biologics to smart bombs opposed to other drugs like Methotrexate being like carpet bombing. While it is fantastic that your wife responds so well to the ” smart bombs ” , a lot of people don’t. I recently attended an appointment at my rheumatologists and got talking to several women there, all of which had RA. Three of them had tried the whole bag of tricks on offer, biologics, methotrexate, Plaquenil etc and were still in terrible pain. One was in her 4th month on Humira and was doing well but felt very tired and said she was suffering from frequent infections. Another lady was in there for a steroid shot in her shoulder and then there was me, the only one in complete remission and the only one taking Minocin. I realise that AP doesn’t work for everyone or it may take time to work, so doubling it up with Metho or Biologics can be a good idea while waiting for the Mino to kick in, but what I do not agree with is your claim that Biologics are so smart. How does anyone know what the outcome of taking this ” cutting edge technology ” will be in ten twenty years ? If they are as smart as you claim they are, then why is close hospital monitoring so vital while on them ? Yes for many they are a life saver but for me personally quality of life not only means living pain free but it also means not having to live in fear that maybe, just maybe I will one day regret ever having succumbed to taking them. One more thing, I am an adult and needle phobic. The thought of self injecting terrifies me, so I cant imagine how a small child deals with the pain and fear of administering these drugs, let alone the added stress for the parents. With all respect its not you taking these drugs , your wife does. Its not you diagnosed with a chronic disease, its your wife. Would you be so eager to take these drugs yourself without knowing the consequences if it was you ? I am so appreciative that I have RA and not my children, but if they did I know what avenue I would go down first.

[zeljana]

@lemons wrote:

QUESTION FOR JOE M : Hello Joe I have read some of your posts and in them you have compared Biologics to smart bombs opposed to other drugs like Methotrexate being like carpet bombing. While it is fantastic that your wife responds so well to the ” smart bombs ” , a lot of people don’t. I recently attended an appointment at my rheumatologists and got talking to several women there, all of which had RA. Three of them had tried the whole bag of tricks on offer, biologics, methotrexate, Plaquenil etc and were still in terrible pain. One was in her 4th month on Humira and was doing well but felt very tired and said she was suffering from frequent infections. Another lady was in there for a steroid shot in her shoulder and then there was me, the only one in complete remission and the only one taking Minocin. I realise that AP doesn’t work for everyone or it may take time to work, so doubling it up with Metho or Biologics can be a good idea while waiting for the Mino to kick in, but what I do not agree with is your claim that Biologics are so smart. How does anyone know what the outcome of taking this ” cutting edge technology ” will be in ten twenty years ? If they are as smart as you claim they are, then why is close hospital monitoring so vital while on them ? Yes for many they are a life saver but for me personally quality of life not only means living pain free but it also means not having to live in fear that maybe, just maybe I will one day regret ever having succumbed to taking them. One more thing, I am an adult and needle phobic. The thought of self injecting terrifies me, so I cant imagine how a small child deals with the pain and fear of administering these drugs, let alone the added stress for the parents. With all respect its not you taking these drugs , your wife does. Its not you diagnosed with a chronic disease, its your wife. Would you be so eager to take these drugs yourself without knowing the consequences if it was you ? I am so appreciative that I have RA and not my children, but if they did I know what avenue I would go down first.

I am going to cry all day long, obviously, because of all you supportive, wonderful people.
Thank you Lemons!!! You wrote everything that I think and feel.
Bless you all!!!

Zeljana

[Suzanne]

@zeljana wrote:

Being a mother is a very difficult task especially when your child is sick.

Zeljana

Nothing in my life has been as difficult as this, and there were days when I didn’t know how I would be able to handle it another minute. I haven’t felt that terror in a long time, but I will never forget how it feels.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Author]

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