June 27, 2013
Message from a chick:
I have been on Remicade, Methotrexate, Prednisone for 7 years. Whilst in the hospital in January following knee replacement I had a seizure that revealed a tumor in my brain. Now I’m following a radiation + chemo pill protocol to shrink the tumor. My rheumy (whom I love) denied the tumor was due to Remicade even tho we are all required to sign a Release before beginning Remicade due to it’s possibility of causing lymphoma and other cancers. Wondering if any of you developed any cancer issues following years of Remicade?
Thank you in advance for your input and sharing your experiences to help answer this members question. (((pain-free internet hugs)))
P.S. If you are wondering what Remicade is, you can learn more here: http://www.remicade.com/
What our members have said so far:
Bianca – My cousin has been on remicade for over 10 years no tumors. The rates of lymphoma are pretty low for remicade its actually from what I understand the lesser of evils of these drugs. You can even carry pregnancy on remicade. Brain tumors are rather unusual causes are not fully known I am so sorry you are going through this.
Missy – so very sorry to hear that:(
Maria – Is the tumor operable or will it be after the shrink it with Radiation and Chemo? One a positive note with all the Chemo your joints will feel better and maybe you’ll get some relief. I hate you are going through this. I’m sure the Remicade didn’t help the situation, but considering we’ve prolly take a few Anti-TNF drugs before the Remicade it could be anything. Muah!!::: My positive energy is flowing towards you.
Pam – I am so sorry you’re going through this! As if living with RA isn’t enough!
Bianca – I’m on 7 mtx, pushing to be switched to remicade as we speak so I want to watch this thread.
Donna – Sorry to hear this, good luck to you!
Joanne – So sorry you are going through this. As a former legal assistant, that is why they make you sign a release. We are stuck between a rock and a hard place in wanting to try anything that will make us feel better. I have a friend who developed colon cancer after being on Humira for a number of years. She has successfully beat the cancer so far. No way to tell whether the cancer is linked to Humira. My prayers are with you.
Karen – I also was on remicade methotrexate prednisone after 1 year of no results and knowing the side effects etc… i decided to get off the meds and go natural ie: juicing, no gluten . fresh pineapple. things like that into my diet and has helped tremendously! good luck and god bless!
Chailine – smart move-I never have taken ANY chemo(methotrexate) or biologics (due to a pre-existing condition) and once I found a group of herbs and adjusted my diet- no more damage. And no side effects! God Bless you.
Mirah – PS I’ve been meth and Enbrel, then meth and Humira and now meth and Orencia – for a total of about 10 years – but never with pred! I’ve only used that short term flare ups as each of these meds failed…pred is a dangerous med that is best used short term in emergency only.
Jane – I have been on various RA meds for years. I have been in Tennessee for a month and have not taken any RA or pain meds and I felt great. I think our RA pain has a lot to do with stress. I just flew back to Florida and the stress started and my pain has returned. I’m going to quit the meds for awhile and see if I can tolerate the pain.
Korinne – I had been on remicade six months after stopping it was found I had a stage 2 ovarian mass. I had been on so many different meds over a six year period I was convinced that had to be the cause. I to was told by my Dr. That there is no way of knowing but my medical hisyory would still be submitted to the drug company. In all honesty there is no way of knowing.
Caryl – My prayers go out to you.
Lisa – Not a remicade person but I have sign those I realize the drug could cause followed by a litiney of things. I had a severe reaction to humeria as I couldn’t swallow! I was told and did report it to the FDA(federal drug administration) as they keep track of adverse reactions. Doesnt really help you but it might help others and it sounds like doc won’t do it
Nicky – This is so scary….my heart goes out to you.
Karen – I’m so sorry for your added illness. I don’t have anything to add. I just wanted you to know that I’ll keep you in my thoughts. You must be very frightened.
Mercedes – I would incline to agree with the Rheumy. The truth of the matter is you just never know.
Mel – I am so sorry I am praying for you ,I am on enbrel an thats where iam staying no remcicade for me i told them HELL NO ,an embrel works like a peach PAIN FREE ALNOST LIKE IAM CURED I LOVE ENBREL
Chailine – Look, if the side effects require you to sign a release- you can bet it was a side effect. The Dr just doesn’t want you to refuse any treatment- and this disease isn’t cheap is it? You take Chemo for RA, now for a tumor…I wouldn’t let anyone put chemo in my brain-you will never be the same-please research this!! I sincerely wish the best for you- no matter what course you take!! Prayers and God bless you!
Kim – The FDA requires that they put the blood cancers possibility on the packaging, but most believe that these people could have had these cancers without being an remicade. I was on remicade for 6 years till it stopped working and now on Actemra, where the same warnings are on the box. I would take the drug even if there WAS research that definitively proves that some had developed cancer (no studies, as I understand it have proved this). Remicade gave me my life back (now going on ten years) without being sidelined by disability. Good luck, but don’t be scared, blood tests are done every month to ensure there is nothing wrong going on.
Amanda – Mtx is a form of treatment for cancer. We just take such small doses. They will absolutely never admit that it was caused by any medication. My sister has crohns a was on humira for years. She was recently diagnosed with MS. They will not say it was the medication but they have likely suspects. As for weighing the options. They suck. We are really stuck between a rock an a hard place. Risk the side effects of the ridiculous drugs we have to take or feel like hell and barely be able to do normal everyday tasks. This situation is so sad but its not like we could stop taking our RA Meds.
Karen – I do not take the mtx tnf or any of those due to fear. Bad enough to be crippled do not want cancer on top. I know. Possible. That’s still to big a risk for me. Would rather be disabled then have child watch what cancer does. Started seeing family members slow deaths at an early age. Cancer scares the heck out of me.
Kathleen – Report it. Side effects and maybe you’ll get cancer type info must be past on to the FDA or somewhere. I had to report side effects from NSAIDS, and Enbrel, minor stuff but still. How would they know if we don’t tell them. The seizure is from the tumor so that isn’t the side effect. Good luck, and I have signed many similar waivers since the RA started.
Mary – My prayers are being sent your way
Nikki – I never signed a release when I was on Remicade. Strange……I knew it causes lymphoma and other types of cancer but, I seriously do not remember any kind of release or other form tha I had to sign.
Mary – I don’t remember signing a release when I started remicade
Lana – Took methotrexate two years. Remicade one and a half years with methotrexate. Found i had stage one breast cancer this Feb. I’m thinking possibly from remicade but my rheumy thinks not. I don’t know but i came off those meds like a month before i started chemo which i began in march. Off the ra meds made fingers wrists and shoulders hurt again darn it!!! Ps i never took prednisone
Jessa – After 2 years on Enbrel I developed cervical cancer, and after 3 years i had 2 precancerous polyps removed from my colon. Because my cervical cancer progressed very quickly in combination with the fact that only a very small number of people as young as I have precancerous colon polyps, i decided to stop taking Enbrel. I wish i had a way to see in to the future, but since I don’t I followed my gut.
Sabine – I don’t know about remicade but i know MTX is being linked to all kinds of illnesses (MS, Cancer etc) I pray for you!
Karin – Sorry to hear your prognosis…I have been on Methotrexate for 13 years and Remicade for 4. However, I am not taking Prednisone at all. I’m wondering if it’s the prednisone, it’s a double edged sword. Works wonders, but is horrible for you. Good luck!
Christine – my heart goes out to you. Keep the chin up when you can…
Mary – Arava, Humira, and Prednisone here… 10+ years. Only side effect from Arave… Some hair loss
Andrea – I am really sorry that you are going through this. I would still take the Remicade, personally. I chose the possibility over a better life (that may be abbreviated by a rare side effect) rather than the highly likely risk of a longer, very limited and painful life. Stay strong, dear fellow RA-er.
Bonnie – Well you’re also taking methotrexate and prednisone and they both have bad side effects . Check.on them. I took all of those things for yrs but didn’t take Remicade til later. I used Leflunomide (Generic for Arava) with Prednisone, though prednisone can make you feel great but it does have some wicked side effects when you use it for a long period.
Debra – Yes breast cancer.
Lauren – They say that even methotrexate can cause cancers… But it has also been questioned as to whether it’s the treatment or the rheumatoid arthritis itself that increases your risk of cancer. The doctor explained to me that you lymphatic system filters the blood from inflammation. After years and years of filtering the inflammation, the lymphatic system itself can become inflamed and lead to lymphoma and cancer. So, we don’t really know if the meds caused it.
Rosa – I’ve been on methotrexate for about four years, ranging from 15 to 20 mg a week, prednisone ranging from 10 to 20 (and even hit 60 during a terrible flare last year), and I began Remicade at 500 mg last June. Up until recently I had all normal test results. A couple of months ago my Remicade was increased because I’m a plus size gal. I got excellent results controlling my RA, but for the first time in my life I had an abnormal Pap result. I had a biopsy and it was negative, but I now have to have a Pap test every six months to keep an eye on those cells. Was quite scared by this, but what is my alternative? Lying in bed in pain everyday? What kind of life can I offer my children that way?
Neta – RA for 17 years. Put me on prednisone for 2 years then took me off. Been on methotrexate for 15 years along with Celebrex. Tried Enbrel but 2 serious infections the first year. Went off that. Flares bad lately so may try new med. Yes side effects are potentially serious but living in pain is unbearable. I have no answers. Hope you find your health improves. Your in my thoughts and prayers.
Kay – I’m so sorry your going through this, I’m only 2 yrs into treatment and still strongly resisting a lot of the drugs they want me on because the side effects seem almost worse than the disease, it’s a double edged sword, I truly hope your radiation/chemo goes well.
Sim – do you know of cases where pred has caused tumors?
Kris – You are a strong women<3
Patricia – My rituxan also has similar side effects, but thankfully, as far as I know I haven’t had any.
Angela – So very sorry for what you are going through. I did take remicade, but not for that length of time. It quit working for me. I had no issues with rumors or cancer. I wish you peace and wellness.
Susan – My father has developed lymphoma from Orencia infusions. God Bless and be with you with your battle with the brain tumor.
Mirah – so sorry! were you on pred the whole 7 years?? you might look at THAT AS THE CULPRIT. best wishes.
Theresa – I will keep you in my prayers. So sorry you have to deal with this and be in pain on top of it all. ((hugs))
Gayle – I took remicade for years with no trouble. Not taking it now, due to my body was getting to used to it. I will keep you in my prayers. I just don’t know what to tell you. I have read all the problems due to taking meds. I just want to be able to move. Pain free hugs.
Mary – not yet but I truly worry about it
Nayla – My heart goes out to you … Keep fighting no matter what …
Nayla – Been on MTX for 24 years and still. Had enbrel and remicade for more then 4 years then I had to stop them . your doctor should have monitored you antibodies and stopped the treatment as soon as the levels became alarming … I had full battery of tests every 2 months …!!!! And now I am doing fine after 9 years …
Lynn – Remicade was the first one I had to stop because my blood work was coming back abnormal. I was also diagnosed with a pineal cyst in my brain, but it doesn’t appear to be causing any trouble, although my neuro surgeon is going to check in on it again as it’s been a couple of years since it was discovered. I’ve also been on Embrel and Cimzia. The cyst was discovered after either a TIA or mini-stroke. There was no residual brain damage so I’ve never been provided with a definite diagnosis after that event.
Kathy – SO SAD!!!!
Lora – I am so sorry to hear this. All of the TNF blockers, Remicade, Enbrel, Humira, Cinzia, I’ll carry black-box warnings about risk of cancer. However, recent studies show that cancer risk is not necessarily worse – and could be a risk of the disease itself (ie RA), not from the meds.
Barbara – Prednisone and MTX since 7/2008…Remicade added 7/2010 so far so good only 4 vials of the Remicade 5 was the highest for a short time and 3 the lowest.
Tammy – So very sorry. Prayers that you are well soon.
Karen – Sitting in the Dr office getting my Remicade as I read this. Have been doing Remicade and Methotrexate for at least 5 years. Hoping only for the “good” effects.
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