JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Tuesday, January 11, 2011

Why is Chemotherapy used to treat RA, and Why are we told to ignore the side effects?

Thank you Tracie from RA Chicks for asking this question.  I know it blows my friends and families mind when they hear I'm on chemo, and say "do you have cancer now?!"  I then have to explain the best I can that no I don't have cancer, chemo is used to treat RA also.  Taking the chemo comes with severe side effects, and we are usually told to "ignore" or live through them if they are helping our joints.  I decided it was a good time to do research into how and why chemotherapy works with rheumatoid arthritis.

It may sound alarming, but a number of chemotherapy drugs are used to treat rheumatoid arthritis, usually in lower doses than when used to treat cancer.  RA is an autoimmune disease in which an abnormal immune reaction causes the inflammation of the joints. When used to treat cancer, chemotherapy drugs are given to kill off tumor cells, but in cases of RA the drugs are given to slow cell reproduction and decrease the metabolic processes that can lead to the inflammation.

The chemotherapy drugs most often used to treat rheumatoid arthritis include methotrexate, Imuran, and cytoxan. Some of the same side effects can occur as occur during cancer treatment, but they are usually not as severe because the drugs are prescribed at lower doses. 

Some of the less severe side effects of chemotherapy include: Acne; chills and fever; dizziness; flushing; general body discomfort; hair loss; headache; infertility; irregular periods; itching; loss of appetite; lowered resistance to infection; miscarriage; nausea; sensitivity to sunlight; sore throat; speech impairment; stomach pain; swelling of the breast; unusual tiredness; vaginal discharge; vomiting.

Severe side effects include: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; bone pain; calf pain/swelling; change in amount of urine; chest pain; confusion; dark urine; diarrhea; dry cough; enlarged glands; fatigue; fever or chills; inflammation of the pancreas (stomach tenderness, nausea, vomiting, fever, increased pulse rate); irregular heartbeat; mental changes; mouth sores; muscle weakness; persistent sore throat; red, swollen, or blistered skin; seizures; serious infection (herpes, hepatitis, blood infection); trouble breathing; unusual bleeding or bruising; unusual pain and discoloration of the skin; vision changes; vomit that looks like coffee grounds; yellowing of skin or eyes.

I am currently on Methotrexate and am experiencing hair loss and low energy.  These are common side effects, and we are given vitamins and are told to live through these minor side effects.  Why are we told to ignore the side effects?! Obviously if you are experiencing anything bring it up to your doctor, so he/she can make sure there isn't an underlying cause or it doesn't get worse. 

After doing research into this, I couldn't find too much, but from experience I know RA is very difficult to treat.  If they find a medicine that seems to be working very well (no pain, inflammation or signs of the RA), it's a good sign.  If the side effects are minimal and livable, in a way, they are worth it.  I know I'd rather live with thin hair or a day of feeling nauseous than weeks and weeks of not being able to move or function in life. 

Overall, there is no cure for RA and for now we learn to live with the medications that do work for us.  If side effects become so bad they are not livable, than you should not be on that medicine anymore.  ANY side effect should be mentioned to your doctor, no matter how minor.  You could wake up with a rash one morning, ignore it, and a week later having difficulty breathing.  Never let anything go without being mentioned, your doctor will not mind, I promise!  If he does, than maybe it's time to find a new doctor! I wish everyone the best of luck and hope you all find medicines that work well for you, without too much side effects. 

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19 Comments:

Blogger Rachel said...

Nin Jiom Pei Pa Koa (ninjiom-hk.cwahi.net) may be another solution to sore throat. i know a lot of people use it, its also non alcoholic, though it's effectiveness is not as good as alcohol based cough medicine, but it's still good to use on not so serious sore throat. Hope you are getting well soon!!!

January 13, 2011 at 11:01 AM  
Anonymous Anonymous said...

Thank you for your insight. I was diagnosed with JRA when I was five years old. Shortly after I was diagnosed with an eye condition:Uvietis. I lost the vision in my left eye and am clinging to hope that the vision in my right eye will stay for a while longer, a lot longer. At a young age I can remmber having difficulty with joint pain. At times I was unable to bend my knees or sometimes walking just hurt. I went through several different medications and than decided to just live with it and not take any medicine at all. I am now 28 and the JRA is somewhat quiet and does not cause too many issues. Currently my issues surround my eye sight. I have glaucoma among several other eye conditions. I went round and round with surgens and specialists who could not give me much of a solution to my situation accept surgery which could leave me blind in the end anyway. I was recently at a new eye doctor and he suggested that I try methotrexate to deal with the JRA and Uvietis. This was the first time a doctor ever mentioned methotrexate. It is also the first time a doctor has offered a sensible reason as to why my eyes have never maintained controlled pressure levels. The eye drops that I take to surpress the Uvietis causes the preasure in my eye to be elevated. I am apprehensive about taking the chemo because I also have graves disease. I am willing to try the chemo just afraid of any severe side affects.
Thanks for your blog. It is encouraging to know that you have a heart to help and encourage others.
-Rachael- Washington

January 10, 2012 at 4:02 PM  
Anonymous Rebecca said...

I was on methotrexate for a few months, and it was hell. My hair thinned, I was always nauseous and with a headache, my nails turned yellow, I lost virtually all pigment and became extremely malnourished because between the nausea and RA pains in the jaw, eating was often impossible. I constantly felt awkward, like I didn't belong in my own body. Tired, weak, sick. That's all I was. It didn't help my RA, but the side effects were like a whole new illness in itself.

When I called CHEO (the children's hospital I went to) to talk to my rheumatologist about the severity of the symptoms and lack of effectiveness, I was told that the yellowing of my fingernails was POSSIBLE with methotrexate, but were probably from acrylic nails (that I had had removed months prior... my nails are STILL a bit yellow almost 3 months after mtx and my family doctor (the only one right now I really trust) told me it takes a few months to fully fade). I was told methotrexate didn't lead to headaches. I was told that side effects with mtx were common, but that on doses for RA patients, even when they were present they weren't severe. I lost more than 20lbs within 3 months of starting methotrexate, and was made out to be an attention-seeking hypochondriac by my own rheumatologist.

A few months later, when I found a new rheumatologist, he dropped the bomb on me that there is permanent damage done to my jaw now. My rheumatologist at CHEO had failed to tell me about the damage. He had told me that as of yet, permanent damage hadn't occurred in the jaw, but that he wanted to PREVENT it with methotrexate.

I was never told about a fair amount of the symptoms of methotrexate. I was never told that it was chemotherapy. I was told that this drug was seeming to put me in a remission (clearly it wasn't, because a couple of months later, I had learned that within a year my jaw's deterioration was occurring rapidly, and if I was in a remission, my face wouldn't be hot, swollen, and lopsided, and walking wouldn't be a task and a half).

The long and the short of this huge long rant about how doctors completely jerked me around with my JRA and attempt at mtx? Patients are NOT WELL PREPARED for these drugs, and stories like mine should NOT exist. I know a lot of people think mtx for autoimmune diseases have absolutely NO side effects because of the lower dose (I'm sorry, but to say the doses of CHEMOTHERAPY going into a body are low is ridiculous... no amount of chemotherapy is "low", it's just "comparatively lower to cancer chemotherapy"), and that's just messed up.

January 31, 2012 at 4:59 AM  
Anonymous Anonymous said...

Hello, I live in the UK and was diagnosed with RA in 2010. I was started on methotrexate and initially responded well on the low dose start.Current medical thinking is "hit it hard, hit it fast",so my consultant doubled my weekly dose to 15mg. That's when the side effects took hold. Nose bleeds,nausea and generally feeling so unwell. I persevered because i wanted to stem the RA and trusted my medical team. I was having fortnightly blood tests and following my doctors orders of no alcohol.You know the drill. I saw my consultant for an appointment during these months. When i reported nausea as being difficult to cope with i was offered antiemetics (anti sickness pills) and told "its up to you-do you want to continue the advised treatment?" Eventually unable to cope with side effects any more i asked what my blood tests showed. They had no results on their system since June, this was now September. Not one professional had checked blood results when giving me advice in person or over the phone. My liver function had peaked at 189 (normal 30-50) Some consultants will let function peak at 70-100 before pulling you off drug. The "system" had created two files on me. One with my GP (family doctor), one at the hospital. GP felt care had been handed over to hospital so they weren't monitoring results and hospital had never thought to look at anything other than last results they had. My case had to go to a mortality and morbidity panel but i have not been officially responded to or reassured.It took 6 months off any treatment for my liver to return to acceptable function and i have only been told i shouldn't( not won't !) have any long term damage, nothing in writing though. I was so shocked and distressed at the time and just wanted to be well for my family, so i worked with my team, who were red faced and apologetic. My GP offered to refer me to another hospital but this would not be pragmatic for me. I have been offered no definite assurance of liver health...just that it is robust and rejuvenating. I have no idea what damage the rest of my body might have suffered as a result. When i tackled my consultant he was overly defensive blaming my GP- they in turn blame the hospital. I am between a rock and a hard place. The most my consultant can say is he is sorry and that how my body reacted to methotrexate doesn't "usually happen". Doesn't make sense to me...why would you need fortnightly blood tests if side effects are uncommon? You can probably guess i am very angry about what has happened to me...the mis-management of my care has been unforgivable. I still have RA obviously-last year after a few months on Sulfasalazine i decide to go back on low dose methotrexate 7.5mg. Mad you may think. But i would rather take the lower dose once a week, than daily torpedoes that turn my urine and skin orange. RA aint for cissies !! thats for sure. It has been good to vent...this is the first time ive written it all down. I can't imagine what cancer sufferers go through, who have this chemotherapy drug at much higher doses. So i try to put my experience in perspective and pray i never get cancer, as i think my body just can't tolerate what "normal" people can. If you have RA or have recently been diagnosed or have another autoimmune disease i hope my experience doesn't deter you from taking proven effective treatment. Just Question! Question! Question! You know your own body better than any physician.

February 18, 2012 at 8:54 AM  
Anonymous Anonymous said...

I have been taking Methotexate at various rates over many years now and have been up to 25mg a week with relatively little to no side effects, however I am now down to 10mg. I think the side effect are very different for each person, and if you are advised to try this drug, you should do so, BUT, you know your body better than anyone else, I have monthly blood tests and I always look at the results in the book, yes I have been having blood tests for years so I have the previous tests to guide me, ask your doctor to put the recomended values in the book for you. But if you dont feel well or if you have too many side effects go back (and pester if you have to)to your doctor or consultant. Good luck to you all. We all know there is no cure, just drugs to make each day livable, and remember life is short, live it to the full, don't let your joints slow you down or keep you down. Good Luck. Bev from the UK.

March 7, 2012 at 3:58 AM  
Anonymous Anonymous said...

Hi!
Great to find this as I've been told over and over again that Methotrexate is so safe and we've been using it for 20 years without problems blah blah blah.
But it wiped out my White blood cells and nearly sent me back to hospital.
I've been on 25mg/ week for a year, all good, no side effects then this.
I've rested for 2 weeks, stopped the MTX and taken folic acid. This had put me back into the lower of normal range. Phew.
Ahh, is the cure worse than the disease?
Simone

July 10, 2012 at 6:29 AM  
Anonymous Anonymous said...

Anonymous said...
Was given 10mg weekly dose of Methotrexate for my eczema in Jan 2012. My hair started to fall out within the first week, went back to the specialist and he said it would thin but it was not the meds so to keep taking them. 5 tablets later my GP stopped them and now 9 months later I have no body hair or eyelashes and it is not growing back at all. I look like a cancer patient which I am not. The specialist is too booked up for me to see him now. I have tried to get an appointment for over three months. It has affected my life. Before I was taking a steroid for my skin, I gained weight but this was better than how I feel now. Now I am back on the steroid but this time I have no body hair either. My GP has been brilliant but she cannot undo what has been done, only help me find a way to cope. Methotrexate as destroyed my confidence.

October 9, 2012 at 8:23 PM  
Anonymous Anonymous said...

Hi, I suffer psoriatic arthritis and I have been on MTX for five years (10 mg/week) until last October. Now I'm living a six months stop since the symtpoms are mild. I have also been told that MTX dosage for these kind of illness is very low, but I have experienced the kind of side effects you comment. I knew it was chemotherapy since the first day.
My best wishes for you all from Spain.

Javier

December 11, 2012 at 8:21 AM  
Anonymous Anonymous said...

My dad is a ra survivor & the ra doc put him on methotrexate, all I can say is if has been hell! He has mouth sores so bad he cant eat, he is 78 years old and is very sick. I am very angry and will be pulling the metho( created more issues then helped heal the initial problem) trexate!!

February 16, 2013 at 10:59 PM  
Anonymous Anonymous said...

I posted on Feb 16 @ 10:59 pm about my dad, he is now in Ohio State University Hospital as a result of the methotrexate drug' his hair has fell out considerably, he has lost close to 15 lbs in 2 weeks, he has developed critical mouth ulcers to the point where he can not eat anything with any spices in it or any food that is not soft., his hemohlobin was at a 5 yesterday when my mom found him collapsed on his bathroom floor.he has since had 4 units of blood administered and the Dr at this hospital which I might add States the drug (methotrexate) was killing him. I truly believe it should be considered for dicscontinuation

February 18, 2013 at 11:57 AM  
Anonymous Anonymous said...

I have psorasis and have tried all topical meds and none help, actually the tanning bed helps much more. But in 2008 I had cancer and took 6 months of chemo and am cancer free right now but my psorasis came back and this time on my hands and a different strand of it than i had before. This made me have psoriatic authritis, i could not hardly bend my finger they were swollen and painful.My GP suggested methotrexate low dose which i had heard of for the psorasis and it has helped me so much. I still have outbreaks on my scalp and elbows and lower back but the tanning bed helps that situation but the best think is i can use my hands again. I have regular blood work to make sure the renal function is good and so far so good. I am very please and have very to little side effects unlike the regular chemo whew. thanks.

April 19, 2013 at 10:25 AM  
Anonymous Anonymous said...

Hi, I am new to methotrexate for psoriatic arthritis my initial dose of 15mg has been increased to 20 mg and so far im ok apart from feeling woozie the day after I take them and I think the increased dose is helping but results re not quick for sure. Pain and swelling in the hands is a nightmare, it effects everything at least now im on the Mtx I can do the basic things in life like washing and dressing - I just know its really hard to go from super woman, mum, full on job and social life to not haiving the ability to get out of bed in the morning! I hope the benefits so far continue.

April 28, 2013 at 7:09 AM  
Blogger James Lancaster said...

Hi. im a freshly diagnosed lupus and ra patient. im fixing to start cytoxan via the vein. i know im going to lose my hair but what good is it when im hurting to bad to raise my arms to brush it. lupus and ra patients need to read up and record it all as the life of a rheumi is often misrepresented, Misunderstood and misdiagnosed.

June 5, 2013 at 12:17 AM  
Blogger Lacy Cordrey said...

My sister was taking chemo drugs for her RA. She felt awful when she took them so she looked into other options. She found AdvoCare BioTools. Please look into this - talk to your doctor about it. She no longer needs to take medication for RA and has not had any recent issues with it as long as she is using the BioTools. They are 69.95 a month, but she feels it is well worth it. I am lucky enough not to have to deal with RA, but to see her doing so well with this product makes me want to tell everyone.

June 5, 2013 at 9:56 PM  
Anonymous Susan C. said...

Hi..I have been taking MTX in pill form since 2009 (along with having tried various synthetic and biologic meds). I ran into a problem with it when I was taking 20mg/wk along with Humira once a week. My white cell count got to be very low. So, they took me off both meds for a little over a month until the counts bounced back. I then went on Orencia injection once a wk. and 15mg. MTX (tablets) once a week. I take the MTX tablets in a divided dose on the same day: 3 in AM, 3 in PM and I also take Folic Acid at 2mg daily. The divided dose, especially, has helped curb the nausea. Peppermint tea also helps. I am still dealing with thinning hair, though. And the fact that I color my hair does not help. It seems to increase the hair fall. BUT I refuse to "go natural", so I just do the best I can to deal with having thin hair. The combo of Orencia/MTX and Prednisone 10mg./day has been what has finally helped my RA. I will now be slowly reducing the Prednisone by 2.5mg./month until I am off of it. Then we will see if the Orencia and MTX are enough to keep the pain and stiffness at bay. Best to you all. I hope you find a combo that works for you. I was told, at the beginning of treatment, that there will be side effects no matter what I take and that it's all a matter of whether or not I can tolerate them. Plus, of course, risk vs. benefit ratio of taking any particular med. Good luck!

September 29, 2013 at 6:24 PM  
Blogger asif sorkar said...

Cancer and the side effects chemotherapy or radiotherapy can have a devastating impact on the body. Oncowell provides access to the highest quality complementary therapies to support the body during this traumatic time.
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November 12, 2013 at 1:09 AM  
Blogger Peter Wicks said...

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html

September 28, 2014 at 12:13 PM  
Blogger Peter Wicks said...

Methotrexate gave my wife cancer. Please cut and paste the above and read and be aware of the lies of the big pharmaceutical who pedal this poison

September 28, 2014 at 12:17 PM  
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February 9, 2016 at 6:05 AM  

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