FDA reviews TNF blockers: Scrutiny may worry some patients, derms say

My husband, Lewis, took Remicade, Enbrel and Humira four years and developed Non Hodgkin's Mantle Cell Lymphoma. Humira was the last TNF Inhibitor he took when he was diagnosed with deadly Non Hodgkin's Lymphoma. He has recently had a Stem Cell Transplant; however the effects of these drugs have turned our lives upside down. The RA Doctor who treated Lewis for the past 15 years states that these TNF Inhibitors cause the onset of Lewis's illness. The same doctor treated Lewis for RA for 15 years and Lewis never had any problems until he took the TNF Inhibitor drugs, especially Humria. The drugs companies are sending out warnings for children and young adults but will not admit that these drugs are also causing the Lymphoma in people over 50. Be careful before you allow a doctor to administer these drugs to you.

Since 2002 I have taken Remicade and now Humira. I will be starting another drug which is a TNF blocker. Sorry about your husband and I hope he fairs well.
Without these drugs and many more I would have been home unable to work or do the things I like to do. Surgery was of no help, I had 5 and each time Crohn's would come back to the same site.

Richard

I'm on Enbrel and have also used Humira to treat AS. These are high risk drugs, no doubt about it. In additional to the lymphoma, there is a risk of life trhreatening infection. Some of my fellow spondys won't take the risk.
For me, it was a qualify of life choice. I had pretty much given up my whole life to this disease. The relief that the TNF gave me was life changing. I know the risk and it's not that I think that it can't happen to me, but I want to live the best life I can while I can.
This is a very personal choice. Anyone who decides to use the TNFs should carefully consider the very real possibility of complications.

Diagnosed last year, March 2007 - Suspect had R.a. a Long time - much suffering and anguish - too scared to find out result. Been on Methotrexate/anti-inflamm/pano does, tramahexal,plasmoquine. This yr 2008 - Been on Enbrel Inj - after taking 2nd course of injections developed nose bleeds/earache/severe headache/felt pressure in head - then enlarged lymph nodes in neck - told Dr. the Enbrel Inj did this to me - she says NO - Had biopsy - result Sinus Histiocytosis - dont know what it means - Dr not much help either. Says it coud go dormant or go to stage 11 whatever it is - wants me back on Enbrel Inj in 1 Month's time. No ways! Too scared now - Dont want anymore disease names coming up. Is there someone out there going through the same thing? Or a Dr. to advise me? I read on another website - someone diagnosed at age 45 yrs - without full treatment - cripple in 6 years! I also had both hands operated on for Carpel Tunnel Syndrome in Mar/April 2008. I need advice and real life stories from fellow sufferes.

When I was diagnose with RA three years ago I didn't know that RA was an autoinmune disease. The area that get worse are my knees. I refuse to use metrotexate and continue with panadol and voltaren. I lost 18 kg to help my legs, at the same time I look for herbal alternatives. The best I have found is Devil's Claw first as a tea in Spain and now in capsules in Australia. I also use Schuessler tissue salts "Rheumatism,COMB M", the panadol I'm using at the moment is osteo panadol. I eat gluten free since May. I believe that the gluten free diet have made a difference. I complement my diet with salmon vegies and fruit everyday, red meet and chicken once a week. Now I'm able to wear my normal shoes and court shoes. Before I was wearing shoes that were 3 sizes bigger than what I normally used. I also do aqua aerobics twice a week, and dancing once a week. I believe that may pain resistance is high but sometimes I get really frustated because the pain doesn't go away. I work full time, to deal with the morning stiffness I take the voltaren and osteo panadol 1 hour before I get up then I don't have to go through the frustation in the morning. I found out that it is important that I move and don't seat for long periods of time. I have a lot of determination and since I being diagnose I have never been in a group. My husband is may pillar he is alway looking for a herb or something that can help me. He also does everything at home which take a lot of pressure from me. I believe in choices and some doctors have been upset at me because I exercise my right to decide what's good for me.