Scared of methotrexate? Stop hiding from it and learn how it may (or may not) be the med for you

  Рет қаралды 16,178

Connected Rheumatology

Connected Rheumatology

Күн бұрын

Пікірлер: 74
@cathygray4923
@cathygray4923 5 ай бұрын
I had been on methotrexate for 5 years for Lupus and RA and recently stopped to see how my body feels without it. (Yes it was okay with my doctor ) I’ve been off for 3 months and haven’t noticed any negative effect, The amazing part is I feel more alert and cognitive functioning has gotten better like before I started methotrexate. I’m just sharing my experience. .
@denisegrogan4641
@denisegrogan4641 5 ай бұрын
I WOULD STAY OFF OF IT. TRY HUMIRA OR ENBREL. MY SED RATE IS HIGH NOW DUE COVID. I COULDN'T TAKE MY HUMIRA.
@fionaestherfortuin4185
@fionaestherfortuin4185 22 күн бұрын
Take cbd drops an tumeric in half milk an water warm with a pinch of black pepper tsp of coconut oil​@@denisegrogan4641
@Justme-wu5nw
@Justme-wu5nw 5 ай бұрын
Your content is excellent, I’m 65 with psoriatic arthritis bad ! I had a doctor prescribe injection able peptides that were made at a legal compounding pharmacy as an alternative it cost me a fortune and made it worse ! It was my idea,secondly I use to drink black coffee large at Starbucks at least twice a day my only vice in life is caffeine, after I stopped using there paper cups that if you read are lined with plastic my psoriatic arthritis got way better very fast !
@CMBiggin
@CMBiggin 5 ай бұрын
Thank you so much for this video. I’ve been researching methotrexate and other treatment options for my next rheumatologist appointment. I’ve had an autoimmune disease since 2009 but was only told this year it’s MCTD and mild arthritis. I was originally on chloroquine but had to change to hydroxychloroquine after 6 months. Several years ago ago I had to stop due to chloroquine toxicity. I’ve been on sulfazalazine since then but it mainly only helps with brain fog. It’s been at least the last 2 years that I feel it’s been out of control. I have little short term memory, constant pain, extreme fatigue, etc. My gp gave me prednisone for 3 weeks and I felt ALIVE. Now I am back to pushing myself through work and spending my evenings and weekends in bed. 😢 I’m really hoping my rheumatologist will work with me for a medication change at my August appointment.
@alisalavine1052
@alisalavine1052 5 ай бұрын
I'm so sorry you're not being treated effectively. I am sensitive to meds and tried MTX but didn't tolerate it due to stomach issues. I was on leflunomide for about 10 months and felt great on it but it was causing neuropathy. Are you able to take a biologic? After I had a few scans late last year, my doctor saw enough evidence for me to start biologics. I was on Humira for 3 months but my symptoms kept getting worse. I started Enbrel about 6 weeks ago and I've improved a good 60%. I have PsA with axial spondylitis and Sjogren's. I hope you're able to get some relief from your disease soon!❤
@shabskerketta
@shabskerketta 4 ай бұрын
​@alisalavine1052 Hello, I was diagnosed with PsA 5 months ago. Since then I have taken corticosteroids injection, prednisone 15mg then 10 mg then 5 mg then 2.5 mg and now again 5 mg along with Sulfasalazine 1 mg. I took my first methotrexate 15 mg today and I'm feeling restless. I'm eating so much medicine and scared of side effects. My PsA is not getting under control, my right knee is swollen and I'm limping. Is it safe to take so many meds at a time what are the alternatives?
@alisalavine1052
@alisalavine1052 4 ай бұрын
Yes, it is safe to take all these medications. Unfortunately, having our disease means lots of different. For most of us when we are diagnosed, we start on oral medications like what you're taking to suppress our crazy immune systems. . There aren't very many on the list and it's normal protocol to try several of these oral meds before moving on to stronger treatments like biologics. Adding MTX might help reduce your symptoms. But it might not. It's really important that you let your rheumatologist know about any new symptoms. In my case, none of the medications that come in pill form were a good fit for me. One of them, leflunomide, worked well for about 8 months but I never stopped having symptoms and they developed in new joints. I am on my second biologic and I've seen 50-60% improvement but I'm still dealing with symptoms that are worsening. In fact, I may be having hip surgery in a few months because of the PsA. Something that isn't talked about a lot but you can look it up, is that there can be a rebound effect with immunosuppressants if there are breaks between switching meds. Symptoms worsen and are like a flare. I think if you Google immunosuppressant rebound you can read about it. Here's the frustrating part, it takes a long time to find the right medication for our disease, especially if you're a bit older and went undiagnosed for a long time like me. Definitely let your doctor know about the knees. They might want to do a MRI scan. If your doctor can see with Xrays and MRIs that you have active inflammation and erosions, they might switch you to a biologic. This has the potential to really control the disease. Autoimmunity is hard. Someone told me recently that her rheumatologist always says that rheumatologists are more like scientists than doctors because autoimmunity is so hard to treat. I hope the MTX helps you. And don't wait until your next appointment to let your doctor know what's going on. Especially if you continue to get worse like having new joint pain. I'm sorry you have this diagnosis but I can imagine you feel relief just knowing what's wrong with your body. I think we all feel that way. All drugs have their pros and cons. As do alternatives. The ONLY way to stop the progression of our disease is through prescription medications. Alternatives therapies are a great addition to the prescription meds. You'll find what works for you with trial and error. They can definitely help your symptoms. But again, they can't stop or slow down the disease. So many people find something really helps lessen their symptoms and because they feel better, they think that they are controlling the disease. But the disease is still running rampant. Sorry this was so long. I hope it helps. Stay strong. 🩷
@rowanmayfair9249
@rowanmayfair9249 2 ай бұрын
@CMBiggin I'm at a point where the thought of steroids wigs me out. I've started having tremors that can get decently violent. It hurts more! Gotta love our bodies. We did such a great job that our immune systems had nothing better to do.
@shabskerketta
@shabskerketta 2 ай бұрын
@@alisalavine1052 Thank you so much ma'am for a beautiful reply. I love it when humans show kindness towards each other. Did you have surgery? How was it? I hope you're doing fine. The world needs more people like you, thank you so much beautiful stranger for sharing the information with me. I appreciate the time you took to write back to me. Right now I'm doing much better mentally but I wish I could say the same for physically. The entire process has taught me a lot of things and one of them is to be mentally strong first then I'll be able to fight physically. One step at a time. Sending virtual hugs to you.
@alisalavine1052
@alisalavine1052 5 ай бұрын
Hello, Dr. Ortiz, Thank you, for stating that Sjogren's isn't as simple as dry eyes and dry mouth. I see so many women online in support groups that get dismissed by their rheumatologists when they have joint problems or even GI issues along with their Sjogren's. They will get treatment for their Sjogren's symptoms but not for systemic problems. I have Sjogren's as well as PsA with axial involvement. I would love to see a video about PsA with AxSpa. Axial symptoms are often overlooked in PsA patients and diagnosed as osteoarthritis, DDD, etc. It took thirty years for me to get diagnosed because my axial symptoms were the first symptoms I had. You can probably imagine how much damage was done over the years which led to permanent disability. My experience isn't unique and a conversation about this topic could really help those that have lost hope. Thank you, for all that you do!❤
@Carol-ss5iy
@Carol-ss5iy 4 ай бұрын
Thank you so much for your channel. Downloading your handbook now.
@neelaprakaashd9436
@neelaprakaashd9436 Ай бұрын
Thank you Dr Ortiz 😊 I am a longtime subscriber of your channel and greatly appreciate the information you share with us all. Not on any meds currently.
@kenjimrankin7485
@kenjimrankin7485 5 ай бұрын
I have been on methotrexate for about 18 years, 15mg per day, and I can identify with almost everything you say, it a balancing act between benefit and risks,
@justso4509
@justso4509 4 ай бұрын
15mg PER *DAY???*
@kellieg1970
@kellieg1970 3 ай бұрын
@@justso4509I was wondering the same thing. I’m on 20 mg per WEEK
@debbiewilliams9113
@debbiewilliams9113 5 ай бұрын
This drug stopped my liver from working properly, and I felt so ill on it. Never again.
@JANsEffectHouse
@JANsEffectHouse 4 ай бұрын
I just took my first dose last Friday but my abdomen swelling is horrible. And I peed like six times this morning in an hour and have had three out the other end. I hate taking any of this stuff and I'm gonna keep reading up to find Alternative. But I have to be in the system on their medicines to possibly get disability. so much for a free world and good healthcare😮😅😢
@travelinglilly4380
@travelinglilly4380 5 ай бұрын
I took it for 15 years in combination with other biologicals and had mixed results. It worked for a short time very well in reducing my RA. Eventually things changed and my markers started to rise again despite the methotrexate and my side effects increased. It wasn’t until some of the newer meds came out that I could come off it and maintain functionality. Early in my treatment methotrexate was a great benefit and gave me a lot of relief when combined with my other medications. It definitely has its pros and cons in treatment, for me the nausea and lung problems were my worst side effects that never went away while on it.
@janiceespie-steffen9938
@janiceespie-steffen9938 5 ай бұрын
Can you please do a video on Sjogrens
@ElainesAutoimmuneAdventure
@ElainesAutoimmuneAdventure 5 ай бұрын
I’d totally love a full video on CAR-T and the future of it in Rheumatology. I’m especially curious about its possible use for refractory RA. Thank you for another great video, Dr. Ortiz!
@daphnekivinen9482
@daphnekivinen9482 5 ай бұрын
The doctors give prescriptions of methotrexate like handing out candy. My son could not tolerate it at all. Please don't give people a false sense that it has no side effects.
@rowanmayfair9249
@rowanmayfair9249 3 ай бұрын
She didn't.
@daphnekivinen9482
@daphnekivinen9482 3 ай бұрын
@@rowanmayfair9249 Thanks for your comment. Where I live methotrexate is the first med they prescribe. It's like they want you to have side effects. The folks I know that have taken it are not on it very long. My son has just been prescribed Rinvoq. We'll see how that works. It's very expensive, but not as expensive as Humira or Enbrel. Trying for help from the pharmaceutical company.
@mohammedarif-yl1wk
@mohammedarif-yl1wk 2 ай бұрын
i too intolerate to methotrexate
@yvonne3903
@yvonne3903 5 ай бұрын
I reduced my methotrexate recently to see if I still needed a high dose. Within six weeks my eyes got bad, my fatigue increased and my joints started to swell and get sore. So within a few months back to a high dose. I've also changed to injections which has vastly reduced my side effect of diarrhoea.
@kathykonkle1097
@kathykonkle1097 5 ай бұрын
I got upset stomach so bad I couldn't take other meds like anti-inflammatory, my hair fell out in a shocking manner and my feet swelled up so that I could not wear shoes. I saw zero benefit and am scared to try again. I see no reason to trust any doctors anymore. I wasn't even told about lung issues and I have serious lung problems. I'm livid. I thought I finally found a good rheumatologist. I guess there's no such thing.
@markbrinson6090
@markbrinson6090 5 ай бұрын
I have swelling in my feet and lower legs, I will have to bring that up at next appointment. Curious, do you also have problems with pimple like bumps on you arms?
@denisegrogan4641
@denisegrogan4641 5 ай бұрын
TRY HUMIRA
@pete9105
@pete9105 2 ай бұрын
Thank you for the input, this alone makes me decide not to take it
@aftabpatni5810
@aftabpatni5810 2 ай бұрын
Try ginger water with turmeric and garlic added in it...take vitamin D injection once a week along with calcium tablet... and work out Additional - do an experiment avoid gluten and lactose (Milk) at least 15 days
@amandadatugan2900
@amandadatugan2900 Ай бұрын
I was started on methotrexate/prednisone when diagnosed RA, and then also Humira. Tapered off the prednisone slowly. I was increasingly having worse neuro-muscular issues, and had to cold turkey go off all meds May of this year because of an infection. Started back on methotrexate/humira when instructed, and got severe side effects from the methotrexate each week. It gave me "stroke like syndrome" side effect and I had to go off immediately again. Took a couple months to recover from those symptoms and tons of therapy. Still having neuro muscular issues, can't lift/use my arms most of the time and my thighs don't work, tripping often.. Was sent off to neurology to get tests done but so far nothing determined yet. Constant state of chronic RA flair in the meantime that makes me dependent on helpers because I can't use my hands they're so swollen and sore. Most of the medications for RA cause such bad side effects, we're basically just signing up for other debilitating issues instead of pain/progression of the RA.
@leaveittolefty
@leaveittolefty 23 күн бұрын
thanks you for this post mentioning neuro muscular part of all of this. i am newly diagnosed with lupus-my journey started with neuromuscular symptoms. ive been thru the wringer. hope you are having a good day today (one day at a time)
@barbnbirds
@barbnbirds 2 ай бұрын
I was just blessed with RA at 81 yrs of age. Yes, the RA wants me to take that but iam not taking it for several reasons.I have other conditions that could be negatively affected by this gross med.I have GI issues, a gallstone.Afib, i have some hair thinning from Red Scalp Syndrome from anxiety & severe stress.Iam on Prilosec 40;mg for acid .Iam also facing cataract surgery in several mos.I have floaters too.I am not going to have to worry about another thing, such as liver & kidney issues.Iam going all natural , plusb, iam going to a dietitian as well .
@ConnectedRheumatology
@ConnectedRheumatology 2 ай бұрын
You should absolutely take into consideration all your conditions and lifestyle before taking any medication! I hope you find something that helps and thanks for sharing your story🙏🏼
@leaveittolefty
@leaveittolefty 23 күн бұрын
if you dont absolutely need that cataract surgery, think twice. i had it because pressures were going up and i couldnt see colors anymore. i am 68 and put it off 2 yrs until this point. i have had lots of problems with eyes since surgery. within three months scar tissue started growing over one new lens and i needed laser surgery to clear it. that was 2 yrs ago and now other eye is needed laser. i also developed a wrinkle on my retina. they dont tell you these things since it is such a common and safe procedure. just wanted you to know-at your season in life is it worth it…my husband is same age as you
@markmcselec
@markmcselec 4 ай бұрын
Thank you for this very clear info.
@radhakrishnank1147
@radhakrishnank1147 2 ай бұрын
Thank you Doctor for the excellent explanation.
@BB-yr4md
@BB-yr4md 5 ай бұрын
This was well timed!! I'm seeing a new Dr on Monday and planned on discussing my methotrexate dose (2 tabs x 2 days a week) as I'm very well controlled since starting prescription vit D about a year ago. Also the meds were not explained to me so I was horrified by what I read on Dr Google 😳 Really appreciate you explaining what to discuss with our treating providers, it cuts through the jargon and settles some fears 💐😊
@denisegrogan4641
@denisegrogan4641 5 ай бұрын
RA DEPLETES UR BODY OF VITAMIN D. IT EFFECTS EVERY ORGAN IN UR BODY. IVE HAD RA SINCE 1999.A HORRIFIC DISEASE THEY NEED 2 FIND A CURE 4..NOW MY KNEES R BONE ON BONE . CAN BARELY WALK. HAVE 2 GO 2 STORES THAT HAVE ELECTRIC SCOOTERS. I TAKE HUMIRA . METHOTREXATE MADE ME VERY SICK. I HAD OPEN HEART SURGERY. VALVE REPLACEMENT AT 51 . HAD 2 RETIRE. I CUT HAIR FOR OVER 30 YRS I MISS MY JOB. AFTER MY HEART SURGERY I COULDN'T WORK ANYMORE IM A YOUNG 58. THEY NEED 2 FIND A CURE. GOOD LUCK 2 U
@JANsEffectHouse
@JANsEffectHouse 4 ай бұрын
my vitamin D was critically low but I was told that you can't absorb vitamin D unless it's made a certain way?
@denaross
@denaross 5 ай бұрын
Excellent info - thank you very much!
@cobscamping6909
@cobscamping6909 5 ай бұрын
As methotrexate was designed for cancer and they now have specific drugs disigned for rheumatoid arthritis. Why are rheumatologist still prescribing methotrexate as a starting drug. When you search KZbin for Rheumatoid arthritis its all about methotrexate and very little about any of the other drugs. People like to be more informed of there options.
@HopefulEmpath
@HopefulEmpath 5 ай бұрын
I wasn’t offered methotrexate until my 4th rheumatologist. The 1st one (2015) put me on prednisone and suggested sulfasalazine. The 2nd rheumatologist (2015) just kept me on prednisone but couldn’t answer any of my questions. At that point I was still dx as UCTD. MY 3rd rheumy (2016) dx’d me with “an aggressive form of RA” and SLE. He kept me on prednisone and put me on plaquenil and added azathioprine. But in the Visit Notes I noticed he stated that I refused Methotrexate but it wasn’t offered! My 4th rheumy (2018) said I didn’t have RA or SLE, kept me on prednisone but was the first one to offer me methotrexate “just in case” and I told her I don’t take meds “just in case.” My 5th rheumy (2023) confirmed that I didn’t have RA or SLE but rather MCTD. Suggested I go back on plaquenil even though I have eye damage from it. I refused and she noted that I “have a history of non-compliance.” Great. I complied, I sure did, and took prednisone all these years! I’m still on prednisone (since 2015) and was told for the 1st time that I need to see an endocrinologist to wean off it. I self-tapered from 10mg to 7.5mg. I don’t trust any doctor anymore.
@jamiegorman5608
@jamiegorman5608 2 ай бұрын
What are the other drugs? Thanks
@jeannineeverson1070
@jeannineeverson1070 2 ай бұрын
I started on prednisone, bad side effects. Then plaquanil, no results, am seeing dr again soon to discuss methotrexate.
@sashamori5744
@sashamori5744 5 ай бұрын
Hi could you make a similar video for azathioprine ? Thanks ☺️
@gosneygosney
@gosneygosney 6 күн бұрын
What about folate rather then folic acid, which I understand is synthetic.
@alanc4798
@alanc4798 5 ай бұрын
We are all different, but this made me vomit daily for over 2 years. Nearly died.
@rowanmayfair9249
@rowanmayfair9249 3 ай бұрын
I give you credit for hanging in there for 2 years. Nobody can say you didn't give it your best. 👏🏼👏🏼👏🏼
@cdcdogs4961
@cdcdogs4961 2 ай бұрын
People should be afraid of methotrexate, it was a direct cause of death for my father-in-law. Everybody needs to do their own homework and dig deeper!
@darrylharris8240
@darrylharris8240 2 ай бұрын
I’m so sorry for your loss. If I may ask, how did you Father-in-Law succumb to methotrexate. Because I’m on a small dose 0.5 for RA they say. I would be grateful if you would share out of concern for my safety. Thank w
@darrylharris8240
@darrylharris8240 2 ай бұрын
I'm so sorry for your loss. If I may ask, how did you Father-in-Law succumb to methotrexate. Because I'm on a small dose 0.5 for RA they say. I would be grateful if you could share with me how did this medication caused his death, Out of concern for my on health and safety. Thank you very much.
@cdcdogs4961
@cdcdogs4961 2 ай бұрын
@@darrylharris8240 It permanently damaged his lungs and had to be put on oxygen. He went from riding and training horses every day, and within a few weeks of starting methotrexate he was on oxygen, he could no longer live his normal life. I didn’t understand how dangerous this medication was until after he passed. Because his passing was so quick and unexplainable, which motivated me to do research and found out that the mortality rate is incredibly high on this medication. After talking with his doctor (my husband’s dr too), he did admit that there are some serious side effects, but not that common. 🤦🏻‍♀️ I am in no way a medical professional, just sharing my personal experience. With that said, some people do just fine on it, and some people 100% need it. I don’t know your personal situation, but you definitely have to do what’s best for you. Hope I answer your question adequately. 🙏🏼❤️
@lokthim6156
@lokthim6156 Ай бұрын
For those who chose not to take methotrexate, what are the treatments you all are under-going right now? Please reply if you could 🙏
@Supernova-yb3gl
@Supernova-yb3gl 24 күн бұрын
Im also interested. My rheumatologist suggested methotrexate but I’m not keen on taking that medicine. Wondered if Sulfasalazine is less toxic 🤔
@suziqt8389
@suziqt8389 5 ай бұрын
Never take it again for my RA...20 years since diagnosis
@paulmay6765
@paulmay6765 3 ай бұрын
Perhaps a mention of psoriatic arthritis?
@zootybeano
@zootybeano 5 ай бұрын
I think there is little data for its use in PMR. But then rheumatologists don't seem to deal with PMR. One I saw didn't know much about it at all and refused me as a patient. I think too many of us are on Medicare, and since it is the most common inflammatory condition of the 70+ group, they would go broke. I will never see another rheumatologist after that nasty man. I would refuse MTX, I need my liver. Some of the experts say it takes 6 months to work. I use Plaquenil and LDN instead.
@doloreshennessey5941
@doloreshennessey5941 Ай бұрын
I just started my first dose of Methotrexate at 6 pills once each week along with cyclosporine 50mg for Ocular Cicatrical Pemphemoid needless to say I'm a little concerened about the side effects of being on BOTH
@sabzrina1611
@sabzrina1611 Ай бұрын
How are you doing?
@doloreshennessey5941
@doloreshennessey5941 Ай бұрын
@@sabzrina1611 I'm having rapid heart beats where my resting pulse is 95-103 beats per minute and I'm out of breath and exhausted
@Littlelillypewee
@Littlelillypewee 5 ай бұрын
I started methotrexate and was starting to feel so much better, unfortunately my liver disagreed with it. I was very upset.
@kathytracy7952
@kathytracy7952 5 ай бұрын
Can a primary doctor prescribe this because mobic doesn’t help me at all
@butterfly1339
@butterfly1339 2 ай бұрын
I take 4 tablets of 500mg 2 in mornings and evening is that too much?
@boofex1
@boofex1 2 ай бұрын
I’ve been on it for a month now and it’s still not working…
@mlaniado98
@mlaniado98 5 ай бұрын
hi is it good for sjowgrens syndrome
@butterfly1339
@butterfly1339 2 ай бұрын
I taking it but I take it everyday 500 MG twice a day
@StephaneBrissette-p1n
@StephaneBrissette-p1n Ай бұрын
Really need to remove the music in your video. Thank you.
@jeannied6068
@jeannied6068 5 ай бұрын
I hate it
@hananyassin-es5mx
@hananyassin-es5mx 10 күн бұрын
U r so beautiful
@treehouse8175
@treehouse8175 Ай бұрын
My god its best to go raw and intermitten fasting instead of this toxic meds 😴 😢😮pls 🙏 😫 help this to make sense it sounds soo outlandish no apology
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