Thursday, February 05, 2009 dawn, Community Member, asks

Q: MTX and joint pain

Has anyone experienced increase in joint pain AFTER taking methotrexate? My husband takes MTX on Monday nights and has been doing so for 10 weeks. However, Sundays and Mondays his knees are always at their best (he's knees are his only joints that bother him currently).  After taking his weekly MTX on Monday nights, Tuesday he has problems with his knees "locking up" and develops a Bakers Cyst on the back of his left knee. By Thursday or Friday they start feeling better and by Monday he is virtually pain-free. After taking his MTX again on Monday night he is back on the same cycle....pain Tuesdays and less as the week goes on. This has been happening for the last 4 weeks. Doctor feels it is a coincidence, but we're starting to feel there's something else that needs to be looked into, such as lowering his dosage (currently taking 15mg per week). Just want to see if anyone else has experienced anything like this. Hasn't had any other side effects while on MTX.  Doctor has suggested giving him a cortisone shot to relieve the pain, but we aren't looking to mask the pain, but find the solution.  Any suggestions are appreciated!! 

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Answers (9)
Lene Andersen, Health Guide
2/ 6/09 2:56pm

I looked up methotrexate and didn't really find any mention of the type of symptoms you describe, although I found one mention of a possible side effect being bone pain, but it wasn't clear if this was relevant rent to taking the higher doses involved when taking methotrexate as chemotherapy.

 

I'm a big fan of trusting your gut and paying attention to the messages your body sends you - it's your body and if you believe there's a pattern, you may be right. I'd suggest that your husband to keep a diary for 2-4 weeks (4 if he can handle it), in which he records which medications he takes, which symptoms he has, what food he eats, basically anything you can think of (if you have a digital camera, it may also be helpful to take pictures of the cyst at different times in the week and include them in the diary). This will enable you to determine a pattern - it could be it's a coincidence, maybe you'll find that the symptoms also happen at other times, maybe you'll find that he eats a particular food around the day he takes his medication and maybe you'll find an obvious pattern connected to the medication. Doctors respond well to physical evidence and going back to your doctor with sheets of paper that clearly indicate a pattern over time of this incident happening in connection to taking methotrexate could be helpful. If your husband's doctor still doesn't respond and you and he continue to feel certain that is connected to methotrexate, you may want to find another rheumatologist.

 

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Annie, Community Member
3/31/09 9:40am

Hi

 

My daughter has just experienced some awful side effects having taken MTX for three weeks. Enlarged lymph glands, muscle weakness (could not walk easily) and aching which was not like her normal pain. However, at the same time she has been tested for food intolerances as MTX seemed to make her worse and she needed to do something.  She has cut out all the foods she is intolerant to and guess what - no RA symptoms.  She also takes MSM. Worth a try.

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Michelle, Community Member
9/ 9/09 6:43pm

YES! I thought I was insane! The day after I take 12.5mg my joints hurt so bad I take Norco. At first I thought my body was reacting to being "attacked" by this drug but it happens every week. I am currently at my 7th week. I am trying to just ride it out because I just started Enbrel injections too and I feel so out of whack with increased pain too. But your husband is not alone with this!

 

 

Michelle

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Carmen, Community Member
9/ 9/09 7:50pm

I too experience severe joint pain on the day I take the methotrexate.  The pain lasts up to 2 days.  I have been taking Methotrexate for over a year now and have been experiencing this pain for a few months.  My knees swell, and I develop bakers cycts as well. My wrists feel like they are going to break and my ankles and shoulders hurt so bad.  I feel as though I have torn rotator cuffs and can barely move my arms.  RA is terrible and I feel for everyone that has it.  I have never felt complete relief from pain.

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Annie, Community Member
9/10/09 5:15pm

Can I suggest you try to get hold of the book Conquering Arthritis by Barbara D Allan - you can see it on Amazon.com and read the reviews.  Google LEAKY GUT and RHEUMATOID ARTHRITIS as we believe there is a definite connection.  Dr. Gail Darlington treats some of her patients by elimination diet and it works.  This disease is helped by diet.  Candida/leaky gut/rheumatoid arthritis.  Probiotics helped my daughter tremendously and eliminating foods such as sugar/gluten for a while.

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Carmen, Community Member
9/10/09 7:01pm

Thank you Annie. I will research this book.  I'm desperate and will try anything.  I may even lose a couple of unwanted pounds by eliminating sugar and gluten.  It certainly won't hurt.  Thanks again and take care. Carmen

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Annie, Community Member
9/11/09 4:26am

Hi Carmen

 

I agree it certainly won't hurt!  Believe me I have spent so much time looking into this disease!  There is also on YouTube a lady who cured her RA by the McDougall Diet.   Dr John Mansfield has a clinic where he treats RA patients (and others).  If you google him and take a look at his book. He is a nutritionist and rheumatologists (unblinkered ones) send patients to him.

 

http://www.burghwoodclinic.co.uk/treatments/elimination_diets.html  and his book is called  http://www.amazon.com/Arthritis-Environment-Dr-John-Mansfield/dp/0722519036  

 

I have recently found Doug Kaufmann who talks a lot of sense regarding food and illnesses.  Google him too!

 

 

 

''CONDITION: Leaky Gut Syndrome

DESCRIPTION:
Leaky gut syndrome is the name given to a very common health disorder in which the intestinal lining is more permeable, or porous, than normal. The abnormally large spaces present between the cells of the gut wall allow the entry of toxic material into the blood stream that would, under normal circumstances, be repelled and eliminated.''

 

 

 

 

 

''How does leaky gut syndrome develop?
Inflammation of the lining of the gut appears to be the root cause of leaky gut syndrome. This inflammation may have many catalysts, including prescription hormones (such as birth control pills and/or hormone replacement therapy) and prescription corticosteroids (such as hydrocortisone); antibiotics; and processed foods and drinks that contain parasites, mold or fungus. Large amounts of refined carbohydrates such as chocolate bars, cookies, soft drinks or white bread; an increased intake of non-steroidal anti-inflammatory drugs (NSAIDs), which results in a shortage of important enzymes; or an increased usage of caffeine and alcohol may also be involved. As a result of the excessively porous gut wall, harmful microorganisms are able to enter the circulatory system. This in turn can lead to many systemic inflammatory and immune-related symptoms and conditions, such as rheumatoid arthritis, ankylosing spondylitis, multiple sclerosis, eczema, Crohn's disease, fibromyalgia, Raynaud's disease, chronic urticaria (hives) and inflammatory bowel disease.''

 

Remember that once you start to eliminate foods you may experience withdrawal symptoms.  This is called the Herxheimer Reaction or Die Off. 

 

We believe that hormones play a big part in this disease.  Why do so many women start with RA after giving birth?  Did taking the pill prior to getting pregnant keep RA at bay?  Who knows!  However, the end result is leaky gut and auto immune diseases. 

 

I believe that once  you have read everything you can about food/leaky gut/elilmination diets you will try this method and I wish you well.  Spread the word.  Our NHS just wants to give out drugs to suppress the symptoms and not discover just what is causing the symptoms and treat those.  Sad but true.

 

Dr Mansfield believes that if symptoms persist after eliminating food then the culprit could be other allergens - dust mites, chemical etc.

 

My daughter started by cutting out gluten and because she had awful flu like symptoms we knew we were on the right track.  It is a good sign if your body reacts to withdrawal of certain foods.  It is a bit like alcoholics when they stop drinking - your body is still craving the stuff which is doing you no good!

 

My daughter has done her diet under supervision of a naturopath who also gave her probiotics to kill of the bad bacteria in her gut and stuff to cleanse her colon and liver.  She is still taking these and notes that she is at her best when taking them.  She has lost some weight and resorted to eating Mars Bars in order to put some weight back on but of course the sugar caused her to have some aches and pains but nothing to what she had before.  Her body tells her when she eats something that she is still intolerant to as her gut is probably not completely healed yet.

 

Take care and let me know how you get on.

 

Kind regards

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TL, Community Member
12/20/09 11:23pm

I take MTX for Crohn's disease. Terrible joint pain led me to this web site. I thought I was going nuts, nice to know it' s not just me!

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macwil, Community Member
1/31/10 7:54pm

I have recently started taking Methotrexate (going on 8 weeks at 15 mg once a week). I have been having joint pain in my lower back and right hip.  I have had a rod placed in my right femur bone years ago, and often have some minor aches anyway.  However, the pain is becoming more intense, stiffening, and a burning sensation.  I was actually doing research online to see if this was a side effect to the methotrexate, when I came across your posting.  Are there any others experiencing this also?

 

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dawn, Community Member
2/11/10 7:12pm

My husband was started on 15 mg. of Methotrexate when first diagnosed with RA and always complained of tightness and a burning sensation of his calf the following day after taking the MTX.  His doctor never thought it was related to the MTX, however, decided to start lowering his dosage, as long as his blood results for inflammation continued to improve.  At this point (one year later), he is currently taking 7.5 mg (1/2 from the original prescription) and he is almost symptom free (just an occassional stiff joint, some knee pain), and his blood results for inflammation are lower than someone his age without RA.  He is also on Enbrel, however, the calf/leg pain he was suffering early on in his diagnosis was always the morning after taking MTX.  His doctor has no explanation for this, but my husband feels it was MTX related. 

Hope this helps.  Good luck!!

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msoliz, Community Member
10/21/10 2:27pm

I am new to methotrexate about 9 weeks now. Within hours after taking the medication I experience a burning in the occipital area on back of my head, stiffness and loss of motion in my neck. My hands start hurting, my feet start swelling. It goes away in two to three days.

Answers on this would be great. I just want to stop the medication. I am in as much pain on it as off of it.

 

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ElJay744, Community Member
12/ 1/10 8:05pm

I am a little late in answering this as I just discovered it. I have been taking MTX for years. I started with pills, but each time I took it, I would have increased pain and swelling of my hands. The doc kept increasing the dose. Each increase brought more pain. I thought it was an allergic reaction so-to-speak of the filler corn starch. (I have a corn issue.) The doctor switched me to the injectible form and increased my dose to the equivalent of 20 mg. The pain and swelling for the two days that follow after my injection is almost unbearable, not to mention the nausea. I feel so much better when I don't take it and just take Enbrel. The doc didn't like my response to Enbrel and switched me to Humira, which to me doesn't see to work as well. Now that I know others are suffering with MTX, I will be sure to tell my doctor I'm not alone. There are others and it really does happen.

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Richard, Community Member
1/13/11 11:26am

These answers have been helpful to me and I thought I it would be worth methioning my own experiences and sespicions. I have been taking 15mg to 20mg methotrexate for nearly a year now and the response has been good (apart from the nausea for 24hours) with full movement of my fingers and wrists which I did not have previously. However recently I have experienced severe pain in my knees and shoulders 2 days after taking methotraxate. Not always the same joint and so far thankfully not all at once. These joints were previously unaffected by rheumatiod arthritus and the pain is unlike the arthritus pain in that it is much more severe and is not relieved by keeping the joint still. The suggestion to keep a diary is a good one which I will do as this could easily be something else, but it is conforting to know that others have similar suspitions.

Richard

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pk, Community Member
7/11/11 2:28pm

I'm on 10mg p/w methotraxate, not for RA, but for Morphea (Scleroderma). I am also autoimmune hypothyroid. I was fine on MTX for several months, and its actually working for me (no new lesions), but now I'm getting muscles and joints hurting. Everything aches. It also goes in waves. I'm getting to thinking that the MTX is causing this, either that or I'm developing yet another autoimmune condition, perhaps RA.

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Jeri, Community Member
10/11/11 9:18pm

Hi Dawn,

I am new to MTX and on it for 10 weeks as you are. I take mine Thursday nights and by Friday afternoon a new joint becomes so painful I can barely stand it. After a day and a half it calms down and by Monday I am fine again. It is a new joint each time and most of the time I have never had problems with that joint. Last week it was my hip, usually it is my wrist or thumb joint and I just wear a brace and it helps, but my hip.. I could not walk Friday afternoon and Saturday. Thanks for sharing at least when I see my doctors I will feel confindant that I am not imagining this. It does not look like any one in the comments has the answers, for the last 10 I stopped eating refined sugars (fruit only) and the worst no glass of wine...it did not change things.

Jeri

 

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Jerry, Community Member
12/28/11 4:46pm

Well I realise this thread is very old...but it helped me to identify that I'm not alone either. I was diagnosed about 5 months ago with Psoriatic Arthritis. Shortly after beginning oral Methotrexate, I started having severe joint pain about a day after taking my dose. By the 6th week, at 20mg dose, the pain was nearly unbearable...costing me literally days a week off work. By the time the week passed and it was time for the next dose, things generally calmed...only to repeat the cycle. My rheumatologist switched me over to subcutaneous injection, and while this reduced the side effects, the problem persisted. After 13 weeks I stopped the drug entirely, and no longer have the crazy fluctuations...so I'm quite confident they were drug induced...unfortunately that leaves me in a situation waiting for another drug to try...

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By dawn, Community Member— Last Modified: 12/28/11, First Published: 02/05/09