JRA - 2 year old with Systemic JRA started on Humira last month

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fedupsa
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/3/2009 8:23 AM (GMT -7)   
hi all newbie to this site was hoping to get some feedback from other ra or jra ( parents  ) out there on their experience with Humira in teh treatment of JRA. My daughter got diagnosed with systemic JRA in Dec 08 and started off on methotroxate and predisone,  she has now started Humira last month in the hope we can now wean her off teh methotroxate as well as teh predisone which has had a severe effect on her in terms of her bloating , also her liver started takign strain from all the meds so we ha dto readjust all her dosages to limit damage. I know it takes quite a while to know whether  a medication is working for an individual or not , but was hoping for some feedback from parents who have more experience or are at a later stage in the treatment of their child.
 
Also an idea of what these meds cost in South Africa as I will be heading there for a couple of months.
 
jra mom, charlotte, NC

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 7/14/2009 6:58 AM (GMT -7)   
 
 
Dear Fedup
It is so sad to hear of your daughter at such a young age suffering from RA. I can't help but think  RA is a severe form of allegy to some everyday food. I wonder if you gave your daughter a very plain diet of rice and pears, unprocessed meat (no ham, bacon, corned beef, franfurts)and plain vegetables with no spices. No artificial colours and flavours and no lollies or sugar, and no high acid foods such as oranges and tomatoes. Avoiding such foods could lessen the severity of her complaint as it did with me.
Also if you could make a juice of one stick of celery, half a carrot,an apple and a little ginger and get her to like to drink this, it could give her relief.
I never had RH as a child, but the drugs your daughter is having, I have had. The humira may be a great blessing to your daughter and bring her great relief. The thing is, whatever drug is given, they will be carefully monitored by your doctor. If she develops any unwanted side effects, these have to be taken into consideration and weighed up as to whether the benefits out way the problems. There are many drugs out there and we all have different benefits from them. With this disease, it is a matter of trying to find what works for that particular time. I was only able to take Hirmira for a relatively short time. But in the time I had the drug, I found new strength, speed and less swelling to the extent that I felt free from my pain.
Good luck and prayers for your lovely daughter who is suffering. I hope the problem will disappear and one day she will be free of its hold of her.
 
As to the availability of Humira in South Africa- could you get enough of the stuff before you leave. If you're currently getting your Humira subsidised by the government(this depends on which country you are in) you can get your doctor to get permission to issue you enough for your stay in South Africa. Hurmira is a very expensive drug without the government paying most of it.
 
Love and best wishes
DebbieLou
DebbieLou


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 7/19/2009 6:14 PM (GMT -7)   
     Back in the dark ages (about 30 years ago) my 2 year old nephew was diognosed with JRA. The doctor put him on 18 baby asprin a day. It took 6 months before he could walk again but he has  been in remission for years. I think now he is 32ish and is starting to experience some pain. I myself was 7 and so was my dad. I have my granddaughter, who is 12, living with me and she is experienceing some of the pain, popping and crunching in her joints. She has it in her upper body, where mine started with my feet and has now taken over most of my body.  Seeing as she is older and weighs 150 I am considering putting her on bio-sil to work with her joints.  I am taking it with super cissus and have a lot  better control over the pain.
     I hope you work out well with your son as no child should hurt like this.  People don't understand that it is not an old people disease.

cestlavie
New Member


Date Joined Jul 2009
Total Posts : 8
   Posted 7/26/2009 5:51 AM (GMT -7)   
fedupsa,

I was diagnosed with Systemic Onset Polyarticular JRA at the age of 2; I'm now 31. It's been a long road, but not all bad. I think the biggest thing is to get a Rheumatologist that you are confident with and make sure that the disease is kept under control so as to minimize the risk of deformity and complications. As mentioned in a previous post, 29 or 30 years ago the options were very limited, but thankfully things have come a long, long way since then. If I can be of further help to you please don't hesitate. Good luck.

ltpfaith
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/30/2009 7:37 PM (GMT -7)   
I am 35 yrs old and have had jra since I was four.  I have never taken any meds long term.  I swim 3 times a week and exercise.  It has been interesting.  I have deformities in my hands and feet; but somehow I always adapt.  I seen your post and wanted to comment.  I only know what I have experienced?  Being around people who are positive and confident has allowed me the opportunity to be independant!  Take Care  

brittjordan88
New Member


Date Joined Oct 2010
Total Posts : 11
   Posted 10/4/2010 3:20 PM (GMT -7)   
Hello! I am 22 and was diagnosed with JRA at the age of 2. I despised being on MTX. Enbrel seemed to help alot and could be treated without the help on MTX. I know your 2 year old cannot talk and tell you everything. But i can say from experience... if you see bad side effects now it will only get worse. Hope this helps!
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