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sherw
@sherw

Posts: 4
Joined: Feb 24, 2016

I'm looking for information on Methotrexate for Autoimmune Diseases.

Posted by @sherw, Apr 4, 2016

Hello, I’m looking for information on Methotrexate for Autoimmune Diseases. Checking to see if anyone has experience with side affects and what to expect in terms of recurring joint pain relief. I have Ulcerative Colitis, have had Colitis diagnosis for 33 years and UC diagnosis for 31 years. I’ve lived with the joint pain for more than 15 years and feel it’s time for some relief. Till now I’ve had prednisone tapers off and on since 2012 and the past 6 months have been fortunate to have a few weeks here and there where I’ve not had joint pain. Most of the time I manager with ice packs, compression and if I’m lucky can take Tramadol at night with Tylenol (depends weather I need to work the next day or not). Any information would be greatly appreciated.

REPLY

Hi @sherw, and thanks for sharing your your journey with Connect. I found some information from Mayo Clinic on Methotrexate that also lists its side effects. (http://www.mayoclinic.org/drugs-supplements/methotrexate-injection-route-subcutaneous-route/description/drg-20064776). Have you talked with your doctor about this medication?

I’m also tagging @shooter and @rayrachel, both recently wrote about Methotrexate and their experience with it.

@alysebrunella

Hi @sherw, and thanks for sharing your your journey with Connect. I found some information from Mayo Clinic on Methotrexate that also lists its side effects. (http://www.mayoclinic.org/drugs-supplements/methotrexate-injection-route-subcutaneous-route/description/drg-20064776). Have you talked with your doctor about this medication?

I’m also tagging @shooter and @rayrachel, both recently wrote about Methotrexate and their experience with it.

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I am on a high dose of methotrexate and along with it comes fatigue and I
can’t take my whole dose in one day as it upsets my stomach. It didn’t help
with my joint pain but it does help with my autoimmune disorder

I have spondylitis, a reactive arthritis in the spine and sacroiliac joints. It also causes colitis. Plaquenil (hydroxychloroquine) helped with the pain but caused a lot of itching in my arms and legs. I have found much relief through my diet and exercise. Pilates, walking and yoga help. A mainly Paleo diet keeps the inflammation down and the fatigue at bay. I recommend getting the book “The Wahls Protocol: A Radical New Way to Treat all Chronic Autoimmune Conditions using Paleo Principles.” It’s written by a medical doctor who suffers from multiple sclerosis. Basically you heal and nurture your body with food. The results can be life altering! She also has a TED talk. I hope this helps!

Liked by sherw, angsmith124

My husband has suffered from joint pain for many years and has found that regular yoga and a whole food plant based diet helps him a lot. He makes juices daily. We also have a high speed blender to make green smoothies with and have found the green smoothies/juices to be very healing. If my husband goes off his diet for a couple of days he does have a lot of pain.

Hi @sherw, as @alysebrunella suggested, talk to your doctor about Methotrexate if you haven’t already. They can best guide you on what to expect and if it might be an option for you. Write down all of you current symptoms, questions and concerns, so they are documented and you can bring them up with you doc when you speak.

You might also considering asking things like these questions from the Agency for Healthcare Quality and Research. You can even print this out and bring it with you to the appointment!

http://archive.ahrq.gov/patients-consumers/diagnosis-treatment/treatments/safemeds/yourmedques.html

@caretothepeople

Hi @sherw, as @alysebrunella suggested, talk to your doctor about Methotrexate if you haven’t already. They can best guide you on what to expect and if it might be an option for you. Write down all of you current symptoms, questions and concerns, so they are documented and you can bring them up with you doc when you speak.

You might also considering asking things like these questions from the Agency for Healthcare Quality and Research. You can even print this out and bring it with you to the appointment!

http://archive.ahrq.gov/patients-consumers/diagnosis-treatment/treatments/safemeds/yourmedques.html

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Hi, this is just one experience not a medical suggestion. Because of years
searching for answers for myself and daughter, she has been getting her
degree Intergrated Health Management and Nutrition and Health Coach. (Private message me if you want her email.)
This is her story on Methotrexate . Caused severe
problems for my daughter. She was being treated for chrons. She had an
abscess on her liver that had to be drained , an abscess in her neck lymph
node, at that point they suspected lymphoma and her white blood cell ( I
believe) were severely low so off methotrexate. She has been on prednsone
for quite awhile. It defiantly has some side effects, bone loss seems to be
the worst for her but of everything it seems to have less side effects and
antiviral. For her and me we have battled for so long and I have come to
realize there is no cure. It is about spiritual, mental, physical care.

Liked by sherw

You may have to take methotrexate and courses of prednisone at first, but if you are lucky, your liver will not be able to handle those dirty drugs and you will be able to escalate to the biologics. In this day and age, you should be offered the biologics, but if not, you should definately advocate for a prescription of this classification of medications so you don’t place undue burden on your liver and other vital organs.

Liked by sherw

Any information on anti TNF (biologicals) and DMARDS especially suflasalazine? I am yet to take medications beyond NSAIDS. I am very concerned about interfering with my immune system and possible side effects. My diagnosis is seronegative spondylarthritis and osteoporosis. I would love to hear any similar experiences.

@user_ch906f23e

I have spondylitis, a reactive arthritis in the spine and sacroiliac joints. It also causes colitis. Plaquenil (hydroxychloroquine) helped with the pain but caused a lot of itching in my arms and legs. I have found much relief through my diet and exercise. Pilates, walking and yoga help. A mainly Paleo diet keeps the inflammation down and the fatigue at bay. I recommend getting the book “The Wahls Protocol: A Radical New Way to Treat all Chronic Autoimmune Conditions using Paleo Principles.” It’s written by a medical doctor who suffers from multiple sclerosis. Basically you heal and nurture your body with food. The results can be life altering! She also has a TED talk. I hope this helps!

Jump to this post

I am trying a similar thing with diet, basically no sugar, no dairy, no gluten, no grains, night shades, legumes. I have used information from ‘The autoimmune solution’ book. I am not going to give up but at this stage (26 days) there is no relief. I realise it may be a long road ahead. (my diagnosis is sPa as well).

@kayelle

Any information on anti TNF (biologicals) and DMARDS especially suflasalazine? I am yet to take medications beyond NSAIDS. I am very concerned about interfering with my immune system and possible side effects. My diagnosis is seronegative spondylarthritis and osteoporosis. I would love to hear any similar experiences.

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In my experience, you can count on about 15 good years on the biologics, depending on a lot of other factors.

@lorrainechavez

You may have to take methotrexate and courses of prednisone at first, but if you are lucky, your liver will not be able to handle those dirty drugs and you will be able to escalate to the biologics. In this day and age, you should be offered the biologics, but if not, you should definately advocate for a prescription of this classification of medications so you don’t place undue burden on your liver and other vital organs.

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Hi again. Is using biologicals for alkolizing spondylitis? How far had it progressed before u started on them? Did u try older DMARDS first? Were there seriously no problems biologicals, what happened at 15 years? I am 53 years old and quite afraid of commiting to any medications at all!

@lorrainechavez

You may have to take methotrexate and courses of prednisone at first, but if you are lucky, your liver will not be able to handle those dirty drugs and you will be able to escalate to the biologics. In this day and age, you should be offered the biologics, but if not, you should definately advocate for a prescription of this classification of medications so you don’t place undue burden on your liver and other vital organs.

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If you are 53, like me, you are “ahead of the game”. I started biologics
after methotrexate and prednisone and celebrex. Doctor said “Humor me, and
keep taking them.” But, they did nothing. The pain and the disability
progressed. Liver enzymes soared. It’s been a great run for me. 15 years on
the biologics. No problems. Dancing to my favorite music. Working full time
when I could. I don’t really know. But I am having horrible times right now
with chronic infections. UTIs. And now bowel infections. Diverticuli? We
each have our own journey. But I urge you to give your body a test and give
them a try because for me, I had a quality of life that I would not have
known without this miracle of the biologics. You will know when it is right
for you. Right now, I am “skipping” doses of Humera. My rheumatologist is
mostly leaving the decision up to me between appointments of I should
inject or not. Arthritis symptoms are not coming back, yet! I’ve skipped 2
so far while having the colonoscopy and endoscopy. Let’s stay in touch, ok?

Thanks very much for sharing your story with me I appreciate it? I feel like a babe in the woods though am learning a lot. My brother had As very young, with bad radiographic spinal damage. He is not 60 and completely free of damage, though is cautious with his diet and does Yoga every day. I am taking on board all the info I can. I hope I DO know what is right for me as I go, like you said. So one step at a time. I hope you can get back strong and fight off some of the infections a o k. Your present specialist sounds the right attitude.

My biggest fears are Liver damage, Kidney Damage and most is the permanently suppressed immune system. However can I put up with this ‘restricted’ lifestyle and unpredictable pain.?

@kayelle

Thanks very much for sharing your story with me I appreciate it? I feel like a babe in the woods though am learning a lot. My brother had As very young, with bad radiographic spinal damage. He is not 60 and completely free of damage, though is cautious with his diet and does Yoga every day. I am taking on board all the info I can. I hope I DO know what is right for me as I go, like you said. So one step at a time. I hope you can get back strong and fight off some of the infections a o k. Your present specialist sounds the right attitude.

My biggest fears are Liver damage, Kidney Damage and most is the permanently suppressed immune system. However can I put up with this ‘restricted’ lifestyle and unpredictable pain.?

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OK. At this stage I know I am lucky to have a ‘quality of life’ decision even to make. I am concerned about liver and kidney damage, and also very much immune system complications. Thanks for sharing what you know. My brother (i have only just learned) had As at 23 years, very advanced on X-ray. He is 60 now and stopped all meds after stomach problems(only tried for 9 months). (MRI’s and Biologicals were not available). His X-rays are now completely clear. He has found some things in his diet he avoids and daily does Yoga. I hope you are right in that I will know what is right for me as you seem to. You mention ‘when you could’ regarding work. I am very concerned for how reliable I can be with this unpredictable pain and varying fatigue and concentration levels.

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