I work somewhere different everyday. Always an adventure. Today just increased my snarki-ness with this whole rheumatology world.
I was working in a major dept. store, and I overheard one of the clerks tell a customer she had rheumatoid arthritis. After she had helped the customer, I told her my daughter had JRA.
I was impressed that she would be working standing on her feet all day, and asked what meds she was on. She said, "Oh, they had me on Darvocet, but that just made me too loopy, so they gave me this" and she pulled Biofreeze out of her bag.
I was taken aback. I said, "Wow. They want my daughter on Enbrel....Have you heard of that?" Her eyes got wide, like she knew, and then she shook her head, like she wouldn't do it.
You know, about a year ago I saw a friend working in a store and told her about my daughter. She said she had RA, too, which I had never known. She showed me her crooked fingers, like when you google 'RA hands'. I asked her what she was on. She said nothing, at that time. The only thing that ever helped her pain was Celebrex, and the rheum wouldn't give it to her anymore.
What is the deal??? Why do people I meet, with obvious signs, pain, and bonafide RA dx's, get only the fluffiest fluffy treatment, and my poor baby has the big guns pointed right at her head???????
< =text/>_popupControl(); Your baby probably has the big guns pointed at her head because she is a child. They want to treat children aggressively to avoid the RA hands etc. They really want to try and get these kids into remission as fast as possible so there is little to no damage to their growing bodies.
It is up to you to decide on what treatment is best for your child. If I remember correctly, your daughter is still a bit too young to weigh in on treatment decisions. Every doctor and every patient has differing opinions on what is best and what works for them. It is up to you to muck through everything and figure out what route you want to go to treat your childs arthritis. It is all about research, research, and more research. Asking doctors questions and quite possibly getting 2nd and 3rd opinions so you can make the choice that fits your needs, wants, and expectations for treatment.
My daughters RA is no longer under control with just the plaquenil and celebrex. So now we have decided to go with those bigger guns and talk to the doc about either adding mtx or upping her plaquenil dose to twice a day to see if everything calms down again. But we came to this decision after much talking between her (she is 12 and very smart), my husband, and me.
Suzzane, I know how you feel. I haven't been on meds in 10 years and I recently went to a new doctor who instantly wanted to put me on enbrel I reluctently said yes and I have been on it for 4 weeks. I have an appointment on the 20th and I am going to tell him I don't want it anymore.
I am 24, so maybe gramma is right, they want the younger people on it to prevent the damage. Not sure.
I think the doc took one look at my hands and feet and decided I was bad off. Who knows.
Are your daughters hands and feet looking ok? I so wish they would have caught mine earlier so I could have avoided these ugly hands and feet. I feel like everyone stares at my feet! I hate it! So if you can avoid that with her I think she will thank you in the long run. The enbrel injection is a pain, but had I known (or my mom) I would have taken it in a second!
Christina, I'm confused... why do you want to be taken off enbrel? Suzanne, when I read your post, I was wondering what was wrong with those other peoples RD's. I'm happy mine pointed big guns at me. As of right now, I have no permanent joint damage. I super hope to keep it that way. Of course, it's a different situation for me. I'm making a choice for my own adult self. You're deciding for someone else. Big decision on your part. I understand how you feel I think. When my son was little, I was in your place only deciding on anti seizure meds instead of RA meds. Sometimes it's hard not to second guess yourself.Isn't biofreeze like a topical spray type stuff? That definately won't do anything to slow the progression of the disease.
I wasn't dx'ed with RA until my early 20ties but I had a lot of "Growing Pains" when I was very young. Really bad pains to where my Mother had to get in the night and iron towels and wrap my legs in them.
When I was 12 they discovered a growth problem in my legs. One leg was longer than the other. I had surgery to correct it before it got too bad or I would today be one of those people that wears one shoe raised higher than the other.
My point is recently I found research that said that RA left untreated in children can lead to growth deformities. I suspect I've had RA for a lot longer than they know. I don't know for sure.....but I now suspect it. Please do a lot of research on JRA. We have so many friend here that were only treated with childrens pain medication when they were younger and are now in horrible shape.
I agree some of these medications are really scary....but a furture like many live is even worse. I can only imagine what a hard decision that is to make. Please keep in mind that only a small precentage of people on these RA meds have bad problems with them. Research, research, research.
Even a weaker DMARD would be better than nothing to slow the progression. They do work well for many. Biologics are not your only option.
Almost everyone I know in real life that also incindentally has RA uses prednisone as their front line med, except me. To me, that just seems so crazy. But one of them is 91, one is using mostly homeopathic remedies, one I don't know what else they're on (although she's in pretty good shape and has had RA for over 20 years), and one uses nothing most of the time (she's not doing so good). There just seems to be so much randomness at how people and Drs approach this disease, who can say?There's also a big difference in the way the disease affects folks as well.
Some can get by on weaker medications while other become crippled waiting to be dx'ed.
[QUOTE=Hillhoney]Christina, I'm confused... why do you want to be taken off enbrel? [/QUOTE]
Well its kind of a long story so I will try tomake it short. I have been exactly the same since I was dx when I was 10. The joint damage is has been done but everything is still the same from when i was 10. Haven't been on anymeds. Tried naproxen when I was younger but stopped that at age 12 or 13. Went to a new doc about 2 months ago because i was having some wrist and knee pain. Nothing bad. Well, during that firsts visit he wanted to put me on enbrel with out any blood work or anything (blood work=COMPLETELY normal) I was very uneasy about it because of the side effects. It has been a struggle to take it everyweek. Actually that is an understatement! So I am going to ask him to put me on a weaker drug with less side effects. ((Sulfanazine) I feel exactly the same since I have started the enbrel. Just a gut feeling for me I guess.
Yeah... I think I would have liked something more than baby asprin when I was growing up. And now 10 years later of coming out of teenage remission, I am a "Dear Valued Disabled Customer".
I was given baby asprin until I went into teenage remission. Then when I was starting to come outta teenage remission, at age 17, I was given Lodine XL. Then when I was preggo with daughter at 19 I was in preggo remission. After having daughter I went to my first RD since beening DXed. I was put on all those starter meds... plaq, sulfazine.. ect. But none were working... then they talked about MTX... injectable at that. Nooo nooo noooo. Went to another RD, was put on Arava and pred and then she talked of injections. NOoo nooo nooo. I tuffed it out with celebrex for a year and then I became preggo with son and now here I am... a "Dear Valued Disabled Customer" and labled disabled by the state.
Yeah... I think I would have liked to had something more than baby asprin. A good bit of my problems happened when I was a kid. My knees, ankles, wrists, a few fingers and toes and not to mention my deformed left foot (always a plus! NOT!). But a good portion is caused by what is happening to my body now and back in 2005.
Suzanne,
I understand your frustration. You want what you perceive as the least med that WORKS for her now and for you that's AP. She was doing well but the Rheumy is pushing for the other stuff and pushing hard - yet you run across people with rheumies that aren't pushing the hard stuff and you go 'why did I have to get this guy?'
Just hang tough!
Pip
Dear Suzanne, I understand how scared you are for your daughter. My gosh as the parent you must decide what is best for her. The amount of these drugs varies and I sure hope they are selecting the proper amount for her size and all. This must make you wild!! PM me anytime. LyndaIt is crazy how docs differ. When I was 18 I was put on Mtx by my secondI look back to where I was a couple three years ago and I am glad that I have the moderate guns. I don't want to go back there again.
What would be a moderate gun?
Pip
I wish i knew what to tell you. And with these other people that have RA is it there doctors that are not giving them the medicine or them not wanting it? My poor dad still dosn't know how to help me but he trys. i came out to pay my bill at the dentist and they said this man stood vigil worried about you. I mumbled yes thats my dad. He used to check on me so worried when i had strep throat as a child. I have been trying to figure out how long i have had this. I remember not eating potatoe chips as a kid because i thought it was the cause of pain and swelling in my hands. Now i wonder how many kids cut down on salt and don't say anything to there parents. I would want to know how many other kids are on this treatment and how they responded. I would ask the docs alot of questions. I will pray for you to come up with the right decision. I know of two people that suffer badly, but that is their choice because they refuse to take any drugs.Thanks, Mekarres. It is not that I don't want her on any drugs, I'd just like to keep her on what was working for her - AP.
We tried mtx. She got pneumonia and staph. No one except ped rheums (her other doctors, our doctors included) has said they would put their child on Enbrel in the same situation. No one.
Thats very interesting and even makes me scratch my head. Know you are being prayed forSuzzane, sorry you are having a tought time making this decision. I am trying to make the same decision for myself right now and can't imagine how hard it must be to make it for yur child. I say go with your gut. Do what you think is right. Thats what I am going to do.
Thank you both.
Good luck with your decision, Christina! I trust my instinct, too, but with our AP dr. retiring, it looks like I might not have a choice but to go against it. This is a really hard time for us right now.
I forget, did you say the doc said NOT to put her on sulfanizine(sp?)
I feel the same way about the enbrel, so I am going to ask my doc to put me on that drug. It has A LOT less side effects and I think I woud be comfortable with that. But I don't know about what it does for kids.
The thing that helped me most when I was younger was naproxen and some maleria drug. But I don't ever remember really being in pain, there were things I do remember like not having enough range of motion to sit on my knees and turn my neck all the way. But Physical therapy fixed that.
Are you sure those people have RA? Many people mistake OA and RA. MyChristina - the Sulf thing was because of the allergic reaction, that's all. It is supposed to be a good choice.
Birdy - you missed some of our story - my daughter isn't getting damage, per recent xrays, and she is very active - dance class and runs in kid's races. And, yes, the people said "rheumatoid arthritis" and "rheumatologist", so I don't think they have OA.
Oh darn! That is too bad!< =text/>_popupControl(); First of all...Hi Bird Girrl and welcome to the board.
Ok on to the RA stuffs. Our RD does not break out the big guns right off the bat for the kids (he treats 12 years and older) or adults he treats for RA. Even I started off slowly with trying plaquenil again first. It is a difficult decision to make. Has your daughter had xrays recently? Does she have baseline xrays? Has she had an MRI at all to get a good look at the damage? You really might want to consider some xrays to get a good look at the damage and then make an informed decision about meds.
If your daughter is not doing well now and you are doing the AP...and they have lowered her dosage...could she be having a herx from the lowered dosage? That is something to think about too. Ask Pip! how to get her through that....she will know better than I would.
Children in general tend to be treated with the big guns right off the bat because the docs do not want too much damage to take place. I have a friend on my parents board with a 14 year old that went undiagnosed for too long (doctors fault not moms fault...mom was on top of everything) and now it has affected his hands despite meds. So with that in mind, you want to make an informed decision, but you don't want to wait too long to do it.
Plaquenil is technically an antibiotic. First used to treat malaria. Accidentally found in patients with malaria and they had RA...that it helped with the RA. So if you like the AP route, plaquenil may just be up your alley.
Yes, her xrays are good while on AP. We are not letting stuff like that slide! It has been more than a year since she had an MRI (she has to be sedated, so that adds a lot of risk). The last one showed what I know - hands and wrist, yes; feet/ankles, no activity, despite the fact we are told there is activity from physical exams (well, they stopped saying it after the MRI....)I'm going to jump in here and say some things - I'm not trying to 'start' something but only explain things from the 'other side' - so, people bear with me.
One of the factors in my choosing AP was exactly what Suzanne said. What if I blew thru the meds? We've seen it here in post after post. Yes, some people don't blow thru and can last a long time on each med, but with infections and starting up and stopping and restarting, the chance of that med maintaining is lowered with each infection. So I would have had to switch meds until I ran out of options. When I was diagnosed all I could do is look at my little girl and pray I'd be able to watch her grow up. A little girl is a petrie dish, everything she got, she'd bring home. For me, it wasn't an option. I'd seen the posts on the RB about being able to get back on the floor and play with my child. I've since seen posts here about the biologics being able to work that way too. BUT if the infection rate is higher on Biologics, and it is, then for me, how long would relief last?
I had to get 40+ years on medication. Suzanne's daughter had to get 80+ years.
APer's tend to be 'fighters' - not in the traditional sense of 'anybody want to throw down' but in the sense of how they come to AP. Most people are NOT told about this choice from their rheumies. Yes, we've seen posts here of some people that were - but the whole process is usually not explained to to them and can fail without somebody who walked the road back to health holding their hand. It's a HUGE learning experience - trust me - I HATED science and the fact that I read this garbage daily will sometimes stop me in my tracks. ME?!?!?! Science!?!?!?! It's hard as heck to buck a system that tells you your gut reaction is wrong. I had to approach 10 docs to get mine and one reason we moved accross the country was to be closer to an AP doc. When you approach doc after doc who tells you that 1) it doesn't work or 2) scares you with skewed side effect profiles (you'll get Minocin-Induced-Lupus or black teeth) you're too new at this to rationally figure out if that is a true assessment. Who knew that if they wanted the true assessments to go to the Pharma manufacturers' websites? I didn't. I never looked there because I don't trust Pharma (I know this shocks you guys :-). Go to the Amgen website and look up the Enbrel and the Minocycline/Minocin side effect profile and see for yourself. There Pharma has to list the real facts. Getting info from other sites is usually paid sponsor info - paid for by Pharma. And the info changes. Hmmmm.
So you study and study and lurk on the RB and you can't really believe it's this simple. I mean, why isn't this info getting out there? So you go back and forth and wonder if you're hanging out with a cult and you can't make a decision because...
Now imagine you're a Mom dealing with that. And you're jumping into the vortex but NOT for yourself, but for your baby. The fear and doubt must be trememdous.
Especially since children do not have the ability to tell you what's going on. You have to hover and watch and pray (which we APers do but that's for US not for our KIDS). My baby is 6 1/2 and is STILL not able to articulate where the pain is.
So, you go with the gut. The child is playing and dancing and singing! Singing! But only on AP. Not on the other meds. She's sick as hell on the other meds. Nausea. Swelling. Etc. The only definitive proof you have is X-rays. And they show no change, Thank God.
Because to be honest here - I'd rather risk a little damage NOW on the chance AP could work and stop the progression, then try to crawl back to health later if the progression continues on the biologics. And we know it can. We've seen the posts.
Like Suzanne says - its a ladder. Before we get on it, we'd better have exhausted all other options. That is just my opinion and I truly hope I haven't offended anybody.
This all being said - GrandmaSkittles is right. I do think it's a herx. I don't know if Zith has been linked to immunomodulation but people on AP/Minocin report herxing all over again at lower doses. Suzanne's problem is that there are very few pediatric rheumies and NONE willing to do AP. Did you all know that the ARC is trying to fix the problem of no ped rheumies by combining with Pharma to offer a Chair at Universities and Hospitals? How many docs whose very job is paid for by Pharma are going to be willing to risk learning/using off patent meds? So how do you get a doc dead set against AP to let you continue when you are happy with the results - and there are NO other ped rheumies available? This doc is saying AP is not working but is unwilling to let her put the dose back up and end any herxing. Like Suzanne said - like a rheumy would if it were an adult.
Do some of you remember a month ago when I was sooooo frightened for my child; when I thought she had Scleroderma? RA is a walk in the park compared to that. We have pain and suffering and possibly damage - but we're alive a lot longer than the SDer's. Harvard stopped seeing SD patients under 15. I'd have had few places to go, and from talking with Suzanne, knew the problems of finding a ped rheumy. I can honestly tell you - I'd have left the country if my baby had SD. And, no, I do not feel like I'm being overly dramatic. There is not a person on this board that wouldn't do the best thing possible for their child no matter what the consequences.
The point of this ramble?
Suzanne, I salute you!
Pip
Wow, I salute you too, Suzanne! And you, Pip! Especially because I'm a bit of"Plaquenil is technically an antibiotic"
well that is not quite true. Malaria is caused by a protozoam parasite not a bacterium. Protozoas actually can destroy the unicell bacteria. Protozoa must have a host ( in the case of malaria is the hemeglobin of infected mosquitos and other living beings) to survive. Bacteria are independent and can exist without the presence of any other living being.
One of the theories is that the quinine in the plaquenil acts as a poison to the protozoa..kind of like spreading rat poison around the house.
so technically Plaquenil is a anti-protozoal agent not an anti biotic
Thanks, Buckeye, I did not know that.
You know, I raided AF for science posts earlier this week. There were a few about how we're infected with parasites, amoeba's and ugly yucky critters. When I get done reading them, if they're appropriate, I'll post some of them here.
Pip
P.S. I HATE even thinking of this kind of stuff!
Wll, it sounds like you have your mind made up and really only hear theBirdy -
Wouldn't you be just as biased?
Please go back up and reread Suzanne's post. She's avoiding 'the ladder' to buy her child years.
You are new here - you haven't read this woman's posts before and yet you have the GALL to come in and say 'not best for your daughter'.
WTFAY!
Pip
Excuse me. I wasn't writing to you. I don't understand buying her years. IsAnna - is that you? Long time.
Pip
It is Anna. I knew it from her first post. She never reads mine, just inserts her bias wherever she sees me post.Well, she made my blood boil. Being a Mom and having/dealing with these diseases is horrendous pressure. Of course, the child wouldn't be having a walk in the part either but trying to figure out what to do for a child...
Anyway, on the plus side, one thing I noticed is the real people on this board, even if not understanding exactly where we come from with this, made a serious attempt to understand and offer comfort.
I love this board.
Pip
Yes, this is really great board, and I'm sorry they had to see me reach a boiling point!!!Wow, that is a huge drop out rate. And I don't think a parent would stop anything that was working. Do you think they are counting opportunistic infections in the 'parental' side?
Are there any studies you're watching coming thru the pipeline? Are they researching JRA at all?
Pip
Edited for use of the wrong word.
Oooh, what color! I want to paint a mural on the baby's bedroom wall but Mr. Cranky says 'no'. Something about having to 'put it back'.
Pip
Carmel..I have dark cabinets and I hope, finally to have my new birch floor installed next week...Limited amount of time to get things painted before the floor is laid. I am the world's worst painter...I'm messy, so not having to worry about spilling on the floor is good for me. Back to the painter's tape for me.
Lynn, sounds fabulous! So dark cabinets with a light floor? Sounds gorgeous. Best advice I can give is 'Baby Wipes". I personally recommend the Pampers unscented. We bought paint wipes at the paint store and when I opened the pack I said, this is just 'baby wipes'. Sure enough, the ingredients were the exact same. And the paint wipes were 3 X the cost. Best invention on the planet. And good at removing paint that gets where it's not supposed to be.
Happ - you know, I'm seriously thinking about it. I'm not an artist-artist but I've been obsessed with doing all the things I wanted to do and always put off for one reason or another. I'm thinking some poster paints, some brushes, and maybe some blending in of a couple of colors. She wants a 'Princess" motif so trees, a castle, etc. How hard could it be? I have a friend that is willing to help and she does have artistic talent. And the best part - my daughter is 6 - not much of a critic! LOL
Pip
6 year old daughters!! They're the BEST. They think everything you do is better than anyone else's mom could ever do. They even still like your singing voice. They think you're the smartest, prettiest, funniest, most clever person ever. I miss those days"Plaquenil is technically an antibiotic"[/well that is not quite true. Malaria is caused by a protozoam
parasite not a bacterium. Protozoas actually can destroy the unicell
bacteria. Protozoa must have a host ( in the case of malaria is the
hemeglobin of infected mosquitos and other living beings) to survive.
Bacteria are independent and can exist without the presence of any other
living being.
One of the theories is that the quinine in the plaquenil acts as
a poison to the protozoa..kind of like spreading rat poison around the
house.
so technically Plaquenil is a anti-protozoal agent not an anti
biotic
Linda -
My daughter started covering my mouth when I sang when she was 2! I'm that bad. But that never stops me. :-)
Lori -
You might consider that Grapefruit Seed extract that Lev posted about it. My AP doc is kind of against diflucan and so I'm constantly starting and stopping it but I can say I've noticed a long term benefit from the GSE. It tastes ugly, tho. I'll be starting the Oil of Oregano I have on my counter later this week.
Happ -
And I'll be sure to mention that when he figures out what happened! LOL
Pip
[QUOTE=Lynn49] Oops...I don't follow long threads...it requires to much energySuzanne, you may tire of hearing this, but I have to say it.....you sound like an amazing mom. I can't imagine how difficult it is to have a child with health problems and my heart goes out to you and especially your sweet little girl. You sound like a fighter (in a good way) with determination and a positive outlook. As frightening as this all may be for you, you continue to do "the next right thing" and put one foot in front of the other and research, advocate and fight for your child to be in the best possible health she can be. I know you say that "any mother would do this", but certainly that doesn't diminish any of your experience and what you have been going through with the doctors, treatment, ongoing battle. Keep your faith and attitude. I do hope your daughter returns to excellent health.
Jenna
I got the liquid I was told about here. It's not too bad, price-wise. But I wanted to warn you, I did herx a bit on it. I should up the dose now but it's ugly tasting. Think I'll mix up my ugly tastes. :-)
Pip
Edited to say...once again, sorry for being off topic. Darn...mea culpa...>>deep sigh<< Sorry.Happ -
Can you rewrite what you just did in idiot-speak for me? Infuse? Which herbs? Fermentation? I know what all the words mean, just not in this context.
Maybe a much more detailed recipe or two and maybe start a new thread?
Pip
Edited for spelling