Children and Embrel

My l3 year old grand daughter was diagnosed with reactive arthritis age 11 which is now being treated as juvenile RA. l8 months on ibuprofen and paraceutamol left her missing school days unable to walk, pain mostly confined to her knees and feet. Now for 4 months has been on methatrexate, again on pain relief. She began embrel a month ago and is now painfree and quite a different girl. However her GP wants discussion on her very low white blood cell count. Ive had a sleepless night after scouring the internet and reading an american website where contributors blame embrel for various cancers leukemia etc. Would be grateful to hear from anyone who can hopefully dispel my fears.

8 Replies

oldestnewest
  • Hi I was also 11 when I was diagnosed but that was back in the early 70s when the only treatment was pain relief and bedrest. I'm now 48 and on my 3rd biologic drug. Ive read the reports on the links with biologics and cancer and I wouldn't want to comment one way or the other but I do know that my life would have been much less of a painful struggle if these drugs had been available when I was younger. By the time I got the chance to try them the damage was done. Early Aggressive treatment for RA has been proven to have the best results but I can understand why you would be so worried. For the record I went on to have 3 kids and lead a full life (albeit with restrictions) - all now grown up and completely healthy. My only advice to you would be speak to your grandaughter's rheumy nurse. Be very careful about reading too much on the Internet. These drugs are incredibly expensive so they must believe it is the best treatment for her. GPs are great but for specialist treatments like this you really need to be guided by her rheumatologist. My GP will always flag these things up but will always defer to the hospital for advice. Your granddaughter should have direct access to the rheumy nurse so please speak to them to try and put your mind at rest. Hope this helps x

  • so kind of you to reassure me. I am grateful that we have access to the bio drugs and I believe my daughter is contacting the rheumy nurse who has been wonderful, wish I hadnt stumbled on the american website giving horrific accounts of embrel. I recently took my grand daughter for her usual opthalmic test and the doctor told us of another 10 year old who had been wheelchair bound for several years and was now walking thanks to embrel. Thanks again for your time and help.

  • i think this is something we`ve all done .. "scared yourselfs silly" .. on the net

    unfortunately the internet can be abit to powerful at times , no matter what you search for you will find something somewhere . and this can like you say give you sleepless nights with worry .. i am so sure , if you searched something postive about enbrel , the results from your search will way out number the results from anything negative ..

    . i had white cell count a few months ok .. unsure why . virus? , cold ? bug ? or just the way i was that week .. we`re regularly monitored so these things do crop up from time to time ..

    good luck with the enbrel .. grand daughter..

    hope this helps too :)))

  • thanks so much Andy, I think we all drop into negative mode from time to time especially now Im not working and more time to magnify problems, I am so so grateful to you this is want I wanted to hear, I continually remind myself just how lucky we have been to have access to embrel and I think its probably over 'sold' in the US. Would be interested to hear how many injections you take, Franki my grand daughter has been on 5 a week since they put her on it 3 weeks ago, plus methatrexate, Im wondering if she could take a lower dose, its so expensive.

    Thanks again Mo

  • Hello,

    I've been on embrel for 18 months now and have had problems with low white cell counts, I think it's quite a common problem with this medication.

    Its does show the medication is working also, lowering the white cell count means lowering the immune system therefore controlling the RA. When mine does go very low, I have weekly blood tests which is re-assuring. My consultant also suggested a viral infection could cause the low white cell count, againm far more likely than a side effect (or so he told me!)

    Mine has taken around 9 months to settle and it has now, I would write more but I have a demanding toddler, no wonder your worried though, some of these websites are sooooo scary!

    Take care, hope it improves soon x

  • thanks so much, so informative and reassuring, and so glad its working for you

  • I think we have to remember that having untreated RA is very damaging to the body and can affect vital organs as well, That's what the consultant said to me when Iold him I was scared of going on any RA medication. I am now on Enbrel and have my life back. I keep fit with a good healthy diet as well as exercise and I think all that helps to protect me as well.

  • Many thanks for helpful info, yes we are lucky to have access to embrel the american website was just frightening however as you can see other people as well on this website have reassured me on the white blood cell deficiency, thanks again for your time and info.

You may also like...