Perception, Reputation, & Information: How Do We Decide about Dangerous Drugs?
Widespread mis-information on methotrexate
In an article in The Rheumatologist, Dr. Bruce Cronstein writes about his frustration with misinformation online about methotrexate. He wonders aloud whether there is some intentional campaign against it. I guess many websites paint an ominous picture of the sunny yellow liquid – or pills – we love to hate. There are warnings of severe drug interactions with NSAIDs or Biologics and a general depiction of it as an extremely hazardous drug.
Cronstein: “Rheumatologists have been particularly victimized by the Web-based distortion of knowledge about our most oft-used drug.” True: if you read good rheumatology articles, methotrexate is called the “mainstay,” “gold standard,” and “background therapy” for the treatment of most Rheumatoid Arthritis. When asked, I usually tell patients that rheumatologists like to prescribe methotrexate because it helps the most with the least permanent side effects of the disease modifying drug alternatives.
If I have any disagreement at all with Dr. Cronstein, it would be that the rheumatologists are the ones who are “particularly victimized.” Perhaps, as I think about it now, it is also the patients. Most days, I deal with the concerns of patients confused or frightened by the very thing that frustrates him: “Most textbooks of pharmacology and even medicine simply copy the discussion of methotrexate toxicity and drug interactions from the sections devoted to chemotherapeutic uses of the drug at doses that are 10- to 100-fold higher than those used to treat rheumatoid arthritis.”
Reputation of a drug affects patients’ perception of safety
Last week, we discussed the new restrictions from the FDA on acetaminophen (Tylenol). Many think of acetaminophen as “safe” because it has been available over the counter for so many years and it’s included in so many pharmaceuticals, both prescription and non-prescription. It looks like the FDA has concluded that many patients don’t know to include their total acetaminophen doses when they calculate the total load that they place on their liver by medicine or alcohol – perhaps because they are too comfortable with it.
Whether or not it’s accurate, complete, or balanced, the “information” that patients receive about a drug impacts their perception of it. Perceptions have a significant impact on whether patients are comfortable with a drug. As Dr. Cronstein says, most of the information about methotrexate online is negative and incomplete. One reason that I built this site was to make accurate information more available to patients, including methotrexate information. Some doctors do send patients to read it. In a similar discussion, one commented, “Kelly has done a wonderful job in presenting a balanced picture” about methotrexate.
Yesterday, a regular contributor to our Facebook group posted some warnings about Voltaren (diclofenac), a topical NSAID used by many Rheumatoid Arthritis patients. Voltaren is actually labeled for use in osteoarthritis (OA) which may be why no rheumatologist ever prescribed it for me. My pain specialist actually found it effective for his own tennis elbow and wanted me to try it. He said, “It can’t hurt you. You can take a bath in it. The medicine is not absorbed into the bloodstream.” In the car, I marveled to my daughter, “How can that be?” Soon, I realized that the “bath” comment is very common with regard topical diclofenac. I heard some other patients and my prescribing physician say that they use it liberally, but I did not do any research since I don’t use it regularly.
However, according to the information my Facebook friend posted from the Voltaren website, we ought to be more cautious about side effects. Just because it’s topical or a friend or doctor is comfortable with it does not mean that something is “safe.”
Information can raise our comfort level with dangerous drugs
I wonder about patients who read the scary web pages on methotrexate and then write to me that they refuse to try this drug. Many of them take other drugs that may be at least as dangerous but have a better reputation such as NSAIDs, prednisone or birth control pills. Reading the list of possible adverse effects of these drugs, the lists seem comparable to low-dose methotrexate. However, there is a higher comfort level with them since they have been used regularly for so long by so many people.
Patients are always better off being informed and able to make choices based on facts. We must weigh risks and benefits with every medicine we take, even familiar ones like Tylenol. We need accurate information since some drugs may be more or less dangerous than their reputation.
Recommended reading:
- Methotrexate and Rheumatoid Arthritis
- Comparing Risks and Benefits of Rheumatoid Arthritis Medicines
- FDA Limits Acetaminophen in Prescription Pain Medicine
I must admit that I was a bit nervous to start taking methotrexate. I was frightened by all the websites out there and the information on side effects. But you’re right Kelly, most of those really nasty things are reserved for the much higher doses used to treat cancer.
Now the “C” word is one that strikes fear into hearts of just about everyone. I’ve read peoples reactions about having to take a chemotherapy drug for RA. I think that most of the time when people think of chemotherapy, they envision the super nasty effects of cytotoxics as shown on TV or experienced by a relative and people being taken to the brink by them in order to snuff out their cancer. As a cancer researcher myself, I know that not all chemotherapeutic agents are like that. There are a number of chemotherapy agents that are relatively benign with minimal side effects.
Personally, I’m not too worried about taking methotrexate anymore. I know what it does and how it affects me and I’m fortunate in that it does seem to help my RA. Knowledge is power, but make sure it is the right knowledge. Rely on your doctor’s expertise, s/he knows much more that we about these things.
If a patient has a good doctor (who got good grades in med school and reads the journals and belongs to professional societies such as ACR), then that is a good part of being a patient: to rely on his expertise and comply with treatment plan. Unfortunately, there are docs who are mediocre or worse and relying on their knowledge would not be sufficient. This is the core of the e-patient movement – that patients would become equipped to engage with their doctors and know whether they are getting the best advice possible so that they can move forward with treatments for the best possible outcome.
I’m glad that I have several specialists that I trust at this point, personally. But I met a lot of inadequate ones along the way. Only one example: the first rheum doc that I met did not want to use methotrexate or a Biologic. When I got to a good rheum doc soon after, she started me on both. That was a doc who had just been to an ACR meeting that had strongly affected her viewpoint about aggressively treating RA, she told us.
With regards to Voltaren people should realize that they may be taking this in pill form. Voltaren is my NSAID but I have always gotten it in generic form. When I was having excessive knee pain people asked me why I didn’t use the cream. After looking up the cream I was glad I never approached my doc about it. No need to double dose and I have a hard time believing that it never enters the blood stream.
My pharmacy has called me a number of times to discuss the dangers of Volteren in combination with my other RA drugs. People need to check their generics closely and be sure that they are not double dosing. That being said, I use to worry about the long term side effects of all these drugs but when push comes to shove I would rather live with less pain than forgo them.
Oh and I hate the mtx but it works.
Good points about total dose Mary as with the acetaminophen. That doc I mentioned who gave me the topical diclofenac had also written me a prescription for it orally 3 months prior. He did not know that I was not taking it because it did nothing for my RA and we never discussed it again. Last night, I was so tired that I didn’t think to include that. Good catch.
As a medical student back in the late 1960s, MTX was used only for cancer patients and thus, I was hesitant when my Rheumy wanted to begin using it in 2007! My knowledge was frozen at the 1960s and I had no reason to update the information since then. I now have been on it since then and feel very comfortable with it – it has helped!
I would tell patients that every medication was a selective poison and that the benefits had to outweigh the risks. The source of the information was as important as the information! With the Internet, anyone can publish anything. Know your sources of information.
Barbara, your comment goes well with the article by Dr. Cronstein. I hope he reads it. 🙂
Many writers seem frozen in time as you say and are not publishing modern discussions of methotrexate, or even better, interviewing patients who use it to get the real scoop.
The bottom line question for me w/pharmaceuticals, OTC or prescription, is “does it help me?” If the answer is “yes”…well, there’s your answer. The water does get muddied when one study says “this one’s OK” and a simultaneous study says “POISON!” – the important step to take there is first listening to your own body (that “does it help?” part) and then working w/your medical team to continue to monitor efficacy.
I’m not an RA patient, but methotrexate was an important part of my breast cancer chemotherapy regimen – the “m” in CMF. I didn’t take it long-term, only for about 4 months. No side effects that I noticed. I’m sure that methotrexate, like many other drugs – including acetaminophen – can have an impact when taken over an extended period. This is where an on-the-ground doc can have more of an impact on a patient than all the studies in the world – s/he knows the patient, knows what to look for, acts accordingly.
Short version: read studies. Work hard to find a doctor you trust. The second is more important than the first, but they’re both required.
Thanks, Casey. A trusted expert would be the ideal.
I think one thing that makes it so hard with RA is that the patient often has no indication that the treatment is helping because the treatments don’t control the symptoms. With methotrexate specifically, I had a heart to heart this week with the rheumatology doc and we decided that I would go ahead and go back to the max dose for RA patients since there are some studies showing it may slow disease progression or damage even when it does not control symptoms (stiffness, weakness, pain). So, we have to “trust” that it will work at least somewhat, even when the studies conflict. We take this leap of faith partly because we know that the disease itself untreated is so dangerous.
It seems to me that patients themselves contribute to the “climate of fear” associated with taking MTX by sharing negative experiences that may not actually have been caused by MTX. I just read elsewhere that someone took one single 2.5 mg MTX tablet two weeks in a row and then became deathly ill with swine flu and pneumonia. Taking MTX for that person is a death sentence because it completely shuts down their immune system, rather than supressing it. Just to be blunt, unless a huge amount of additional info. was left out, I don’t believe it. Swine flu is very contagious, pneumonia can sometimes be a complication, I just don’t believe that a total of 5 mg MTX taken over a 2-week period is what caused the person to become ill. And I think others looking at starting MTX could become very scared by reading such a thing and become much too quick to blame everything they feel on the small dose of MTX they took that week, and decide they don’t want to take it anymore.
My question is…should we as patients challenge others’ comments in the interest of keeping things real, or should we let them stand in the interest of not rocking the boat?
Wow, Beth. I have to make that choice several times a day, as you know if you’re a reader here. One thing that helps me is to realize that this site and other forums like it are often the only place that people have to express their feelings about the disease and it’s their refuge. I want it to be there as a refuge, but I also want good information to be promoted. So I have challenged many patients and made a few enemies along the way. The most important thing is to be respectful – probably more important in life than being right. Hard since we all love to argue for our point. We just have to judge – sometimes it’s best ignored & then in the end the facts win out. But other times we can see it will make other patients fearful so we respectfully disagree. Hope that helps.
And w/ regard to methtrexate, you are right. I have heard a few very strange “impossible” stories that I know drive fear – even if they are true there must be more to it…
I must be one of the “weirdest” patients out there. I rarely, if ever, look at the side effects for medicine, because I believe that knowledge is 90% of the problems that come with the medication. I take the precautions my rheum gives me and store it in my mind for future use. Like with my methotraxate. She said to not take an NSAID with it because it could upset my stomach more. So, I waited for a while, let the mtx get into my system, then decided since I wasn’t having any adverse affect from it, I could take advil for my pain.
I was given horror stories about mtx before I began. You’ll get so sick, you won’t be able to do anything the next 2 days, etc. Well, the worst thing I got from it was fatigue the day after, and even that became manageable. I do, however, know when I need my next dose. Usually 1-2 days before my mtx day (Friday). I’ve been on it since late July. When it alone was not helping my symptoms, I got sulfa, but that wasn’t until December, so 5 months after my first mtx dose.
I didn’t look at the side effects of that, either.
I firmly believe if you give someone a sugar pill, that looked like one of their medications, and said “this is going to cause you to have a horrible upset stomach, maybe vomiting”, the person will experience those side effects.
I know someone that automatically goes online to research medications prescribed to find the side effects. Then, after taking 1 dose, has these adverse effects on her system and then stops taking the medication. I think, in some cases, we were better off before the interent and the overly abundant amount of information about things,some right, some wrong, because it hinders the doctor’s ability to treat the patient the way he/she needs to be treated.
The only big side effect I have noticed, is my hair falls out a lot more. Thank goodness I was blessed with a thick head of hair, so it’s not very noticable.
Just my 2 cents.
Katie, you aren’t rare. As a whole mtx is really well tolerated by “most.” And that’s why rheum docs use it so widely. I guess I was saved the horror stories since I was so sick I took whatever the doc gave me. I was in a frame of mind to find anything that might help. I have had some side effects to battle later but RA is always a greater evil.
You are right about the power of suggestion so we should be hopeful & optimistic, while still believing patients who say they are suffering of course.
All drugs both natural and artificial have side effects. Sometimes, as with Acetaminophen overdosage you can’t feel them until it is too late. MTX for RA has long track record, the effects are well known and reversible. I really feel that it is doing the largest proportion of the benefit for me. Even though I had been on Enbrel for years it was that final increase in MTX that really slowed things down for my RA. It takes some management to deal with the side effects but it is so worth the effort.
Agreed.
I think intelligent people can read all the dramatic verbage that some post and realize that a lot of information on the internet isn’t accurate. Hopefully they also realize that while one drug might not work for you (too many side effects or not effective to treat the disease), it might have value to someone else. Normally when I read of some horror story I tend to just brush it off until I personally feel something like that. All people’s chemistry is different.
I originally was taking Sulphasalazine and was switched to MTX end of July (Sulphasalazine did nothing for my pain, stiffness, or the flu like symptoms). After getting to 8 pills of MTX a week I saw a significant improvement of how I felt. My sister has been on MTX longer than I have and she wasn’t able to take the pills, she changed to injections. She had too much nausea on the pills. Fortunately for me the pills haven’t really given me too much in the way of side effects. So even though I am very closely related to my sister we don’t have the same reaction to the same drug.
Unfortunately I think the disease is still progressing despite the MTX as now most days I can’t bend the first joint of my left thumb. My next appointment isn’t until May so I’m considering calling for an appointment much sooner.
Just curious what is the max does of MTX that is normaly used to treat RA? I’m on 20mg a week (8 pills 1 x a week)
Hi Julie. There are very few patients who take over 25 mg in the US. My doc has 2 on 35mg but said will not do that w/ another patient because those patients were placed on that dose based on a test showing how they did / didn’t metabolize the mtx. Doc said that test is not available right now for some reason. BMI is also a consideration. Hope that helps some. Yes, our chemisty responds differently and I agree that patients should be able to read and decide.
I completely agree! I recently wrote a post on sulphur in homeopathic remedies. DH is allergic to sulphur. Being informed is crucial, even when you’re taking something as “safe” as Tylenol or homeopathic eye drops.
Thanks Ashley. Actually homeopathic makes me nervous since the exact dosing may not be measurable. I also want to know “what else is in there” with everything I take and when the med is not FDA regulated, you might not be sure. I’ll have to read your post.
Homeopathy scares me the most!! Not enough research out there on how it affects the body, especially for those with auto-immune illnesses. My worst flare came after trying a homeopathic treatment (recommended by generic DO)…ouch!! Bad, bad memories… I will not be trying anything like that again without express encouragement or approval from my Rheumy.
Of course I don’t even know what you took Dana but you know what comes to mind? So many homeopathics are aimed at boosting immune response that it could have actually triggered the flare as you thought. Only a guess.
I think you are right, Kelly. I took Samento (a type of Cat’s Claw) b/c it was supposed to be good for Lyme disease (which my DO thought I had) or RA – so I figured it was a win/win. Read after the fact elsewhere not to take it if you have an autoimmune condition. DOH!
I have had RA since I was 5. Never took any chemo drugs.
When I was 60 I was diagnosed with breast cancer. Chemo involved Methotrexate I have had the worst flares since then, that I have ever had in my whole life
My implants had to be removed also, because my body was fighting them & making me sicker. Its been about 9 months since my last chemo infusion, I am slowly regaining strength. Most onocologists do not understand the reactions that some people might have,with the drugs. What might be a safe alternative for me to take?
Did you have Rituxan Gale? That is a rather unique drug, knocking down B-cells for an undetermined period so it could have lasting effects. Methotrexate for RA is a much smaller dose as the doctor said in the article. Maybe you’d want to try as an alternative arava? Or alternative DMARDs sulfasalazine or plaquenil, which are milder. Good luck with talking with your doc and finding a treatment.
Very well said Kelly…This informative website as well as other reputable medical websites, actually eased my fears about taking Methotrexate.I do agree with you that we the patients suffer too, as well as the Rheum Docs with the misconceptions regarding Methotrexate. Methotrexate is a very well studied drug, it has been around for a long time and its effectiveness then used to treat RA is well documented. Like my Rheum Doc says..”Tough Drugs for a Tough Disease” It is very important that patients be well informed and use caution when researching medical information online. There is a lot of inaccurate, false and downright dangerous medical information out there on the web. We have to use caution and always consult our Docs when anything comes into question. Beccause I have a bit of a medical background, perhaps it makes it easier for me to sort through the medical hogwash, but when I think about the lay person I shudder to think of them taking certain online information literally. I want to Thank Kelly for her accurate, informative and professional RA website. It has been the most accurate and comprehensive website online for those with Rheumatoid Arthritis. AND Kudos to our Rheum Docs…who work against those misconceptions along with us! Thanks Kelly for this informative post!
Thank you Susan. I agree we would be much better off with patients and docs working together both to fight the disease and to fight misconceptions.
Kelly,
This is an important post. You do a very good job of doing your homework and presenting a true picture of the pharmacological therapy available for RA. However, not all RA sites are alike. There is good info out there and there is bad info out there. One of the first times I turned to “Dr. Google” was when I was prescribed Lupron to treat laproscopicaly dx endometrisosis. I worked myself into a terrible state b/c of the internet hubbub about side effects of lupron treatment. As it turned out, I had very few side effects and it provided great relief. Now that I’m up to a therapeudic dose of MTX, I am feeling great improvement in my PsA. In fact, I have energy levels like I haven’t head in years and pain is down from a constant 7-8 to a 3-4. I would have been much more concerned about taking the drug had it not been for your well-researched and reasoned cost benefit analysis.
Great post.
Amy
Thanks, Amy. great comment too. 🙂
@ Beth– I got swine flu and adult onset asthma last year, before I took my first MTX. I think I got it (a) b/c it is very contagious, and (b) b/c I have a crappy immune system in the first place. I’d imagine your poster was in the same boat.
Amy
Interesting topic. I’ve been all over the board with my opinions on this drug. Methotrexate was the first serious RA drug that I started on. I experienced no side-effects, and took it very willingly to begin with (anything to stop the progressive pain!). Over time, I became leery of the long-term side effects. My major concern was and still is that I am 26 years old (19 at diagnosis) – and I could potentially be on the drug for many decades of time.
I stopped taking methotrexate just before getting married, not wanting to have it in my system at all when we start looking at having kids, since it is a folate inhibitor and can cause birth defects. Being of childbearing age and looking toward kids in the (semi)near future has kept me off of methotrexate. Of course, that’s combined with the fact that I’m now on Enbrel which seems to work even better for me.
I will say that the more I talk to doctors and get RELIABLE medical advice and information, the better I feel about methotrexate. Once we are done having kids, I think I would feel comfortable going back on it, if need be. I know my doctor would be monitoring my blood work constantly, and since I never had problems on it in the 3 years that I took it, I don’t anticipate any serious problems in the future.
As with all drugs, it’s a risk/benefit analysis that has to take place for each patient! You need to do what works for you and not be burdened with worry over what “might” happen.
Kelly, thank you for all your wonderful information about such an important drug.
I started on MTX nearly 4 years ago (oral) and didn’t get much info on it from my then rheumy. Being an NP, I knew enough about it – I had worked in oncology for 15 years! But we used HIGH dose MTX. My patients then did generally well on it though.
I eventually developed undue nausea to the oral form and have been on injectible since. I also believe that some people look at “too much information”. They read the side effects that occur in < 1 % of the people who took the med, as opposed to the more common side effects, which are the ones more likely to happen. I see it in my practice every day. Internet is great, but as others have said, you have to weigh the risks/benefits of ANY med.
And tylenol scares me WAY more than methotrexate does anyway. I don't think anyone who takes MTX takes "more this week" just to make it better, but people pop tylenol like it's candy and while they are taking other tylenol containing products like vicodin or percocet – way more scary than MTX!!!
Agreed, the prednisone decision was more difficult, as was the Lortab (hydrocodone & Tylenol).
Kelly you touched on one of my biggest questions regarding treatment. I don’t think this is talked about enough, by rheumy’s to their patients or by patients themselves. This is my question: Treatment is prescribed, whether it be MTX or the “big guns” and we are told “it will turn your life around”. What I know of the wonder drugs is that they slow or halt the progression of the disease, but NOTHING will fix what is already damaged. So when my doc told me Humira or Enbrel or any of the others would turn my life around, I thought that meant I wouldn’t have the pain, weakness or stiffness anymore. I thought that meant it would make me who I used to be. But the damage is done. The pain I have from joints that are already damaged will never go away. So it’s misleading to tell patients “this will be your wonder drug”. From what I’ve read here and on the FB page, is that most of us don’t know a drug is helping until we are taken off of it for some reason (surgery, sickness etc). So when someone tells me “_______ takes a pill and is fine”, I don’t believe that, because ______’s damage is still done.
It’s confusing for me, and I’m sure for others. I don’t know if I’ve put this right, but I hope I got my point across LOL. Even though a “wonder drug” may stop or slow the progression of RA, it will NOT fix what’s already broken, and that will continue to cause pain, stiffness, weakness.
Thanks for all you do <3
Raini
All good points of discussion, Raini. For some patients, a minority apparently, the medicine does take away the stiffness or pain to a greater degree. Of course if they have damage to tissue, that may remain. I have read a couple of studies where with very early treatment some erosions of bone have healed in some patients. But that’s not something we can count on at this point. If treatments took away the symptoms of RA and gave us our lives back, then patients would not all be using NSAIDs, pain meds, PT, topical analgesics,etc. and more than half be classified as disabled.
We have to be careful not to disappear those patients who do have horrid reactions to mtx however. I’ve tried mtx several times over the years, both oral and injectible, and had the literal vomiting for days on end in between being to weak to get up off the floor after very tiny doses.
Each person reacts differently however, and no drug should be demonized. For example, I was on gold (Solganol) for years, and I had no side effects and it was the only thing that helped at the time. The side effects for that were terrifying. Those shots helped me get through college 15 yrs ago.
I agree that patients should be believed and that the final decision should belong to them.
Here in the UK we have Paracetamol. Most people have taken this at sometime in their lives here for such things as a common headache. However this is a powerful drug that the FDA in the US has refused to give a license too because of the dangers of over dose and effects on the liver! It has been used here for years and no one gives a thought to using it. If it had been found today it would struggle to get licensed and would be a Prescription Only Medicine (POM), but is one of the most effective painkillers there is! It is often used in the IV form as a post operative pain relief drug which is one of the most effective ways of controlling pain.
RA is frightening enough, but the drugs used to treat it can be more frightening if not explained properly. Most RA consultants don’t explain enough to allay the fears to the patient.
MTX is the ‘bogey man’ of RA medicines. More needs to be written out it’s good side… ie: it is very effective in the treatment of most RA. Yes it has side effects, but so does having the beer or glass of wine with one’s meal after all they are drugs!
We have paracetamol in the USA and it is readily available over the counter just about everywhere. Only we call it acetaminophen or by the brandname Tylenol. Or it is listed sometimes as APAP on prescriptions.
It’s also the number one cause of overdose in the US, Australia and the UK.
It is all about credible information. This is the one place which I rely on to find it, pro or con. Then it is up to me and my doctor to make the decisions that are best for me. The best quote in this debate is “Tough Drugs for a tough Disease.” The best thing we can do as patients is educate ourselves and then become an active part of our treatment and not go about things blindly.
Kelly
It has been several years since I was on MTX and I was a bit more fearful after some web research yeilded confusing descriptions of benefits and side effects for R.A.. I trusted my Rheumey and tried it. I became very flexable and the swelling really came down, but I was very weak and very tired. My Dr said that at least my symptoms got better and that we were on the right track. Without MTX I may have never been exposed to Leflunomide, so while it was not for me, it was helpful in pointing my Rheumy in the right direction. I also feel that after finding it to be less scarey than advertized, that I am more comfortable taking other treatments now.
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I haven’t taken anthing accept Ibuprofen at this time. I’m still waiting to get in to see a Rheumatologist….
My ex-husband was taking Methotrexate some years back. They tested his blood every month for liver damage. He has severe psiroisis (I cannot spell today, really foggy headed!). I don’t believe that normal people taking that drug would need to be tested so often. He is an alcoholic, and his liver is already compromised. Even so, he has not suffered any ill effects from the drug.
Thanks for sharing Nicole. As far as I know anyone with a history of alcoholism is not prescribed methotrexate these days. Liver malfunction from medication like mtx is often reversible but it’s a much more complicated situation when it comes to long-term alcohol damage. Good luck with your own treatment – there is a lot of info on the RA Map on the menu at the top of the page.
I was just going to add the same info, when I read Mary’s comment. Is it possible to amend the post so that info is there, just in case people don’t get to read all the comments? I know people are super busy and might not get a chance to read all the comments and so might not end up seeing that Voltaren comes in multiple formulations, including tablets, suppositories and eye drops http://www.medbroadcast.com/drug_info_details.asp?brand_name_id=240
Thanks so much, Kelly for all your hard, hard work!
I am newly diagnosed and about to start this drug in one week. I am on prednisone now until my hepatitis profile comes back and to allow me to go on a cruise that was booked prior to my diagnosis and feel free to have a cokctail or be in the sun. The day after I come back I will start Methotrexate. I am frightened by these side effect.
I giess in additional to Alchohol I can no longer safely take Tylenol? I am not allowed to take NSAID because of a heart condition I have (endothelial dysfunction and coronary spasms confirmed during a cardiac catheterzaton) so I take ultram and alternate extra strength tylenol now for pain control. I worry without the tylenol until the MTHX kicks in I will not have adequate pain control. What have you all taken for pain when on methotrexate? I really want to avoid narcotics as long as possible. I also worry about the increased risk of cancer as in addition to RA there is a strong cancer history in my family and I myself had already had colon polyps and two benign breast tumors and my sister had colon cancer and my mother, aunt both diea of breast cancer and two cousing on that same side had breast cancer and one died of malignat melinoma.
I know I have to take something. I my hands and feet are so swllen at the MP and carpaland tarsal joints. I used to have beautiful hands, I was told once I should be a hand model, told I had piano hands but now they are knarly and ugly and my husband had to cut my rings off my fingers tonight.
It is very traumatic for me and the reality of this diagnosis is setting in very strongly. I worry about being in shorts r a bathing suit on the cruise and people seeing my swollen knees and feet and ankle and me looking freakish and people staring.
I need to find the strength to take this on. Today has been a particular sad and moth emotionally and physically painful day. I had a tooth pulled yesterday as I broke it and it couldnt be saved and my dentist gave me vicodin. My tooth no longer hurts but I just took one because my hands and wrists and ankles are very painful, but I really do not want to take narcotics.
anyway sorry for the rambling I just had to vent all this to people who would understand as many of my friends and family do not. My husband does but I do not want to keep burdening him with my concerns as he is taking this hard to but people like my grown daughter doesnt understand. She told me rather then cut off my rings to go on a low carb diet to lost water weight. she does not understand the swelling is not edema from water but rather the inflamtion of my joints and if only a low carb diet would take that inflamation away without drugs Id never eat carbs again to avoid methotrexate or some of the other drugs I may be facing down the line.
sorry about all the rambling.. I just need to vent
thanks for being here.
Hi Laura,
Ok, I’ll share my own experience: My doctor prescribes me Lortab for pain with my methotrexate prescription. The methotrexate has not helped my symptoms so I also have a prescription for prednisone (low-dose). Doctor hopes that the mtx is helping me fight the disease even though it doesn’t “feel” like it. and I use Advil.
Trying to balance all the risks and benefits, as discussed here, and still trying to get to a point of being functional is very hard. For some, the disease settles down some or with treatment just flares on some days so the narcotics or steroids wouldn’t be needed every day. It is a difficult maze.
I’m sorry it’s so hard. Be sure to read through the RA Map on the menu. That’s why it’s there.
I was interested in your post and the comments because I view the side-effects from the biologic medications as much more problematic than the mtx side-effects. Although I read the literature on the mtx, I very quickly decided to take it when my Rheumatologist recommended it. However, I was very hesitant to start remicade and am still trying to decide whether the risk of the drug is worth the benefits. What’s your opinion on the side-effect associated with biologics, Kelly?
Donna,
They are all different, so you have to decide one at a time. Ask your rheum doc to help you know your particular risks for that specific one. The risk they have in common is TB or infection. You need to have a good general doc who’ll see you at drop of a hat if you get an infection & take you seriously. And you need to practice caution about infection. Of the top of my head, that’s what’s important.
This is a perfect post for me, as I will start Methotrexate this Friday. I am much relieved.
But, I consider myself very lucky – I have a rheumy who is concerned about my pain levels and treats me aggresively, before I get worse. she gave me Plaquenil before my blood test showed a positive ANA, which greatly helped my fatigue. and when the hands started hurting she gave me voltaren gel, as she wanted to see if it was OA. when that didn’t help at all she realized something else was up. Plus the Celebrex did nothing either.
I was more concerned about my visible joint changes in my fingers. she reassured me as I am sero-negative for RA, that severe deformities were not my prognosis.
then when we discussed methotrexate, she gave me a LONG explanation of the dosage and side-effects, and a hand-out aimed at it’s use for RA.
She does not seem to discount the pain of RA, even sero-negative. It is her main concern.
And, the voltaren she gave me, came with a dosage measuring indicator, and warned of over-usage. she emphasized that it should not be used more than the recommended dose, ever. so it’s not as safe as people think.
I can’t sat it enough how lucky I feel, that my doc is aggressive, and now that she sees, even without confirming bloodwork, that this needs to be slowed, she is treating me.
And with this post of yours, I am less leery of the methrotrexate, and more positive that it will make a huge difference. Instead of looking to Friday with dread, I will look at it as another step to feeling more like my old self.
I am one of those rare people who took plaquenil, and felt a tremendous difference in 1 and 1/2 weeks. that alone gave my doc the initiative to get aggressive, and that this was really an auto-immune disease, ans she needed to keep digging to find which one it was.
I’ve been diagnosed with UCTD, mild lupus onset and crohn’s. Until the inflammatory arthritis set in. Now my doc has a something to set her course on. thank you.
Oh, good luck Yvonne. There is a lot more methtrexate information on the Methotrexate tab on the menu, but it sounds like your doctor has got you off to a good start too! I have met Rheumatoid factor negative patients who have damage so I’m glad she is aggressive. Rf often fluctuates in patients and is not the greatest indicator.
Great post & discussion, Kelly.
Methotrexate has been the anchor drug for RA & would remain so for quite some time to come. In fact, as Rheumatologists, we owe so much to Methotrexate. The growth of Rheumatology as a branch is all thanks to this wonderful drug.
There is a lot of wrong information about methotrexate on the net. I would reiterate that rawarrior has been one of the few sites spreading a balanced information about RA. I recently happened to look at a reputed site like rxlist.com for plaquenil, I was scared of the side effects mentioned. So many of them; even I had not come across. It would have made more sense to classify them into common/ uncommon & rare. It would also help to classify sites/ restrict entry to physicians.
I am sure Rheumatologists would not fall prey to the misinformation. But, I’m always worried about the patient. Just the other day, one of my patients requested me not prescribe more than 7.5mg/week (i hope he reads this) fearing the side effects!!
This site/ discussion remains the best measure to handle the misinformation. I’m running a series of posts on my blog (http://doctorakerkar.wordpress.com/) to counter this wrong information. The plaquenil post is just out (http://doctorakerkar.wordpress.com/2011/02/06/are-allopathic-anti-arthritis-drugs-really-toxic-anti-malarials-plaquenil/). Detail discussion about methotrexate would be there very soon.
I hope this present discussions (especially the positive comments about methotrexate by RAers themselves) helps as many other RAers make the right decision.
I was hesitant about starting mtx — that was over 20 years ago, and how long I’ve been on mtx. For most of those years I was on 15mg of mtx or lower. My labwork for liver enzymes has been normal except for a couple of times — my RA doc tweaked my meds and my lab returned to normal.
To not overtax my liver, I don’t drink any alcohol and try to keep prescription meds to a minimum.
Concerned about the length of time I’ve been on mtx, I asked my RA doc about having additional tests. He recommended having an ultrasound of my liver and it was normal.
For now, I’ll continue to take mtx until something better comes along.
Well I took my first dose of methotrexate the day before yesterday. (Mobday evening) the worse symtptom so far has been ringing in my ears which started a couple hours after taking and hasnt stopped. I had a funny taste in my mouth last night (metallic) and a few pangs of nausea but nothing that bad. I havent had a terrific appetitie and was very tired Tuesday AM but have more energy now. Right now I do have a little bit of a cramp in my upper abdomen. Really overall it hasnt been as bad as I thought it would be.
What has been outrageuos has been my knees both of them are in a horrible flare and swollen twice their size and I can barely walk. I am several hundred miles away from my rhuemy but am considering either going to a local orthopedic if they will see me or to the ER to have my knees drained. I have been on prednisone for almost a month now and my knees have got to work
My rhuemy is suggisting I try to get someonee local to drain them (talked to them today on the phone) as he said it will take at least 4-6 weeks to see any effect at all from the methotrexate.
oh yeah and officially my diagnosis is Non reactive inflammatory arthritis as my CCIP now came back negative (my RF was previously negative) but my CRP and ESR are off the charts and I have bilateral joint sweeling and hand joint involvement so am not sure why they cant make that leap of faith and just call it RA.
anyway I am going to take a vicodin now I have leftover from my denstist and see if I cant get this knee and stomach cramp to calm dow a bit.
goodnight.
I have a question for those out there taking MTX injections. I am on the maximum dose of MTX now along with 7 mg prednisone and my Rheumy is giving me two weeks to see improvement or move to MTX injections weekly. My GP that is treating my anemia and hypothyroidism recommended to me today that I see an opthalmologist as she has had personal experience with a family member that lost eyesight in one eye from MTX. It scared me to say the least. I have checked the internet, but don’t see much about this. I of course plan to talk with my Rheumy next month about this, but was wondering if anyone else had heard of this.
I have not ever heard of it, Kim. There are often a lot of other complicated situations with RA patients’ health so it’s hard to know for sure. Seeing a good eye doctor familiar with RA is very important though. I’m sorry someone scared you – I’m glad that didn’t happen to me. But even so, more information will only help you to make a decision you’ll feel right with. If you haven’t read it, there is a large methotrexate section on the menu here too. Good luck!!
A scenario such as that is probably more likely to happen from prednisone that mtx.
I was warned by my eye doc about taking plaquenil. She said it could cause some retinal damage in some people. I don’t take this medicine, but she said if my rheumy wants put me on it to call her and get a baseline retina scan and regular follow up scans to monitor for changes.
I’m offline for several hours sometimes. It’s so positive that readers are answering each other & not depending on me since I cannot do it all. Or keep trying so hard to. Thanks to you & others who do this!
Note to any drive-by readers, the known risk is for plaqenil and not methotrexate. But as we both said, an eye checkup with RA is generally an excellent idea.
Hi,
Can someone help me understand the terms sernonegative, and sernopositive? How is this diagnosed, other than the doctor just telling you?
Also, I was seeing the PA the other day, to get a steroid shot for pain. She ended up taking 5 viles of blood. After, the results came back, I noticed on her Visit Summary, a diagnosis of Chronic Live Disease. There was no explanation or information on the blood test. Does this happen often. I feel like she could have called and explained my results to make this kind of diagnosis; and I wrong? Very angry and trying to control it!
Jill
hi Jill.
1) Sero negative means the RF (rheumatoid factor test) is too low a result to be positive.
This test was the first one discovered so it was named that. They assumed it was the test of whether a person has RA. But now we know you can have the disease without that antibody so we have the term “seronegative RA.”
2) The other test, newer, and more often positive with RA symptoms is the anti-CCP (also called ACPA) test. You can be positive in one and negative in the other.
This one is actually more “specific” to RA.
3) There are newer tests like the 14-3-3-eta test. As more is learned, there will be more to test in the blood.
I hope that helps. I’ll put some links here to read.
About your situation that you tell about- – If the PA thinks you have a liver diagnosis, it is her job to tell you. You should call or send an email to say you want to know why that is in you chart. Is it an error or something she forgot to explain? You are totally right that it should have been explained to you.
You should always get your lab results & your doctors notes & ask questions, so good job Jill.
I’m sorry it’s so hard right now. God bless you.
https://www.rawarrior.com/rheumatoid-arthritis-test-some-funny-factors/
https://www.rawarrior.com/blood-tests-for-rheumatoid-arthritis-what-is-their-role/
https://www.rawarrior.com/20-tips-for-managing-your-rheumatoid-arthritis-treatment/