I’m thinking about just quitting all these meds all together, I feel so nauseated after taking methotrexate and I feel weird for 2 days after. I am so sick of this.
I know the feeling. When I was on MTX I felt very defeated, as I felt nauseous all of the time. Not pleasant. Rumor has it that there are fewer side effects when using injections instead. I didn't move on to injections after 6 months of oral MTX only because it was doing nothing for me, and I felt sick all of the time. Perhaps you can talk to your doctor about switching over to injections.
I think all of us have felt that at one point or another. All the pros and cons of any medication need to be weighed. For me the crippling effects of PsA are a great motivator to take my meds. I am on mtx and Remicade. The bios have only lasted about a year for me and I am on my fifth one. My Reumatologist says we will try Stellara next. I inject mtx, 17.5 mg on Sundays. I did not have much nausea when I took it orally but after I had been on it about 6 months the side effects went away. Discuss your options with your doctor. Have you read the book recommended here: The Facts: Psoriatic Arthritis ? If you do decide to discontinue meds it is best to be fully informed as to what lies ahead.
I take 6 pills Saturday mornings but am thinking about taking them on Sundays instead because I have things to do on Saturdays. I ordered the book and have read it although I didn’t understand much of it. What lies ahead if I stop the meds?
michael in vermont said:
I think all of us have felt that at one point or another. All the pros and cons of any medication need to be weighed. For me the crippling effects of PsA are a great motivator to take my meds. I am on mtx and Remicade. The bios have only lasted about a year for me and I am on my fifth one. My Reumatologist says we will try Stellara next. I inject mtx, 17.5 mg on Sundays. I did not have much nausea when I took it orally but after I had been on it about 6 months the side effects went away. Discuss your options with your doctor. Have you read the book recommended here: The Facts: Psoriatic Arthritis ? If you do decide to discontinue meds it is best to be fully informed as to what lies ahead.
I think I just might do that.
Stoney said:
I know the feeling. When I was on MTX I felt very defeated, as I felt nauseous all of the time. Not pleasant. Rumor has it that there are fewer side effects when using injections instead. I didn’t move on to injections after 6 months of oral MTX only because it was doing nothing for me, and I felt sick all of the time. Perhaps you can talk to your doctor about switching over to injections.
Hi Hope...I can understand how you're feeling. I was on the MTX for 7 months, switched to injections and tried adjusting the dose, however the side effects continued...they actually got worse over time. I was also taking Sulfasalazine as the MTX was not working on it's own. I just recently stopped the Sulfa as it too was not helping. I have Avara sitting here and my rheumy wanted me to start it but I am going to wait until the end of the month when I see her so we can discuss the issues I have with this. There are several other Dmards available if the MTX is not helping. Sometimes over time the effects will subside...I gave it a good 7 month trial and for me....it didn't work. I'd talk to your doctor about this, maybe you can tweak the dose and increase the folic acid...or switch to injections. Good luck and I hope you find what works for you.
I've also made some drastic diet changes to see if that would help and I seem to be having some success with this. I'm not 100% but I'm certainly better then I was!
I took the pills one time and had overwhelming nausea. I could not function for 3 days. It was horrible. All I could do was sit in a chair and not move. So the next week I started the injectible, at that time they were intramuscular, so rheumy did the shots in my hip. I still had nausea, but it was a sickening feeling rather than a dying feeling. It would last sometimes two sometimes three days. I took anti nausea pills and munched on ginger snaps and I decided that I would accept the nausea because it meant slowing the progression of this disease. The severity of nausea has lessened over the years, and I recently learned that omitting the sulphasalazene on shot day also helps. I still have nausea off and on, but it doesn’t consume me anymore. Anyway, just know that it will get better, and try to hang in there if you can. Hugs.
Hi Hope
FYI I have been off my meds for around 2 weeks now having been taking 15mg MTX weekly like you in the form of 6 tablets.
I also felt so run down and depressed whilst on the meds so made a pact to attempt a strict diet/lifestyle change in order to manage the disease. I'm juicing daily and following a high alkaline diet, ditching all bread, gluten and dairy as much as I can and doing some yoga/light exercise.
I must admit I feel 10 times better than I did whilst on the meds, although still a little sore. But I am able to function and do much more with a much more positive attitude without the drugs.
Each individual is different - many people manage very well on the meds it seems, but my choice is to try and focus on managing it with a holistic, natural approach.
If you haven't tried juicing, I really highly recommend it. I did a week long juice fast which made a great difference on my inflammation and I now juice every day to get added nutrients and vitamins in which help to give my body the best chance.
For inspiration if you haven't seen it, it's worth watching the film 'Fat, Sick and Nearly Dead' - http://www.youtube.com/watch?v=3mS0YA465ts
Anyhow I'm seeing a nutritionist soon who has been recommended to me, so will update with any other dietary advice I pick up. Good luck and hang in there!
Ali
Morning, Hope. My rheumy told me I could take 2 pills, which I do on Thursday night, and then the other 4 pills Friday morning. That really cut my adjusting to the medicine period down. You might want to give your Dr. a call to see if that could be an option for you.
Does anyone else have that option to split their dosage?
Please do not give up yet. Is it awful? Yes, but it can always be better. I use the injections. I won't lie, even with my daily folic acid, I still get a little GI upset the day after, but its not bad at all. In fact, if I keep a plain diet that day, I don't have too many problems with it at all. Also, the longer I take it, the less I notice the side effects. I'm not sure if they are getting less pronounced or if I am getting used to it. So, don't give up yet. This is the first drug you've tried and its only been a few months. Each time you hit a road block like this, you've got to try to find a way around it. Don't let it stop you in your tracks or you will never see improvement. Call your doc today and get the earliest appointment you can. If they can't see you within a week or two, ask to be put on their waiting list for an earlier appointment, and see if they will give you something for nausea to tide you over until you are able to be seen.
As far as what happens if you just stop taking the MTX, well, you know the answer to that. There is a group of us here who harp on it enough! The drugs are a must. It is the only way to prevent damage to your joints. Usually, early in diagnosis there is none to minimal damage, and you want to stay there. Why? Well, when you finally get to the right drug or combination of drugs, you will actually feel better and have less pain. If you have joint damage, you will still, eventually, find the right drug or combination of drugs. The catch is, that you won't feel that great if your joints are all torn up. You will have chronic (as in "for the rest of your life") pain that will not go away and has very few options for correction. Pain that will last a lifetime. So then, you are looking at your PsA drugs and your pain management drugs too, oh, and surgery for joint replacements, and PT, and maybe mobility aids, being well and truly disabled, and more.
You have got to find your "fight". Dig deep, do whatever inspires you and find your fight. I really understand how hard that is to do, especially when you feel like crap, but you have to find something that will keep you going, keep you getting treatment, and keep you demanding, wanting and expecting better for you. At first, I was only able to get going because TNTLamb yelled at me if I didn't. Seriously, I used to imagine him barking at me about how good I've got it and that I shouldn't waste it to get myself out of bed in the morning, or if I didn't want to inject because it stung. Now, I have my own drive to keep going and a healthy fear of what happens if I don't. I think each and every one of us struggles to find this, but once you have ti, you will find that this whole mess is a lot easier to deal with.
What kind of foods do you eat? Or put in a juicer?
Ali Surrey said:
Hi Hope
FYI I have been off my meds for around 2 weeks now having been taking 15mg MTX weekly like you in the form of 6 tablets.
I also felt so run down and depressed whilst on the meds so made a pact to attempt a strict diet/lifestyle change in order to manage the disease. I’m juicing daily and following a high alkaline diet, ditching all bread, gluten and dairy as much as I can and doing some yoga/light exercise.
I must admit I feel 10 times better than I did whilst on the meds, although still a little sore. But I am able to function and do much more with a much more positive attitude without the drugs.
Each individual is different - many people manage very well on the meds it seems, but my choice is to try and focus on managing it with a holistic, natural approach.
If you haven’t tried juicing, I really highly recommend it. I did a week long juice fast which made a great difference on my inflammation and I now juice every day to get added nutrients and vitamins in which help to give my body the best chance.
For inspiration if you haven’t seen it, it’s worth watching the film ‘Fat, Sick and Nearly Dead’ - http://www.youtube.com/watch?v=3mS0YA465ts
Anyhow I’m seeing a nutritionist soon who has been recommended to me, so will update with any other dietary advice I pick up. Good luck and hang in there!
Ali
Hi Hope, been there and bought the t-shirt with methotrexate. I stuck the pills until I couldn't take it any longer, even with hiked doses of folic acid and then the docs put me on the injections. What a difference! I didn't feel 100% for a day or so afterwards but I could function. And I got into the habit of taking the pills/injecting before bed so at least I slept through the first few hours. Unfortunately, methotrexate wasn't for me so it was stopped after a few months.
As GrumpyCat says, see your doc and say you're struggling. There are ways to help with the side effects, even a change of dmard if necessary. But please don't give up, you need these meds to get the PsA under control.
Juice fasts are not a healthy alternative to a regular healthy diet, and can cause irreparable damage to one's body, even if you aren't doing it simply to lose weight. Any "fast" is going to be harmful as you are depriving your body of key nutrients that keep your body functioning correctly. See the links below:
http://www.livestrong.com/article/334309-dangers-of-the-juice-diet/
http://www.webmd.com/diet/features/juicing-health-risks-and-benefits?page=2
Before making a decision about your meds, please see your doctor and talk to him/ her about your plans. If diet and exercise alone would fix any one of us, we would be doing it already. I have a 100% gluten free, low dairy, low inflammatory diet. I do gentle exercise 5 days a week, but I STILL take MTX and Remicade infusions, do my PT, and whatever else the docs think might be effective.
Hope said:
What kind of foods do you eat? Or put in a juicer?
Ali Surrey said:Hi Hope
FYI I have been off my meds for around 2 weeks now having been taking 15mg MTX weekly like you in the form of 6 tablets.
I also felt so run down and depressed whilst on the meds so made a pact to attempt a strict diet/lifestyle change in order to manage the disease. I'm juicing daily and following a high alkaline diet, ditching all bread, gluten and dairy as much as I can and doing some yoga/light exercise.
I must admit I feel 10 times better than I did whilst on the meds, although still a little sore. But I am able to function and do much more with a much more positive attitude without the drugs.
Each individual is different - many people manage very well on the meds it seems, but my choice is to try and focus on managing it with a holistic, natural approach.
If you haven't tried juicing, I really highly recommend it. I did a week long juice fast which made a great difference on my inflammation and I now juice every day to get added nutrients and vitamins in which help to give my body the best chance.
For inspiration if you haven't seen it, it's worth watching the film 'Fat, Sick and Nearly Dead' - http://www.youtube.com/watch?v=3mS0YA465ts
Anyhow I'm seeing a nutritionist soon who has been recommended to me, so will update with any other dietary advice I pick up. Good luck and hang in there!
Ali
It’s not easy. Nothing about this disease is easy. But two things I think you need to do:
- As others have said, call your doc and say you are very discouraged and thinking about quitting the drugs.
- Read this blog post: http://discussion.livingwithpsoriaticarthritis.org/profiles/blogs/a-new-spin-on-pain
I understand your pain, discomfort and discouragement, but you need to protect yourself from the considerable damage that this disease can do to you.
Please look after yourself.
The meds we need to take and the side effects we have to endure can be a pain, but it's all part of the process of finding a treatment that not only keeps PsA from destroying our bodies but also, hopefully, that has the least amount of icky side effects. There are meds beyond mtx, but most patients have to try and fail (in one way or another) mtx before moving on.
We can help by getting as healthy as possible- exercising as fits our abilities, eating healthy (whole foods are best, minimize processed foods, stay away from foods that your body doesn't tolerate well, eat in moderation), and keeping our doctor up to date with our physical issues, including med reactions.
If there's one thing I've realized since my diagnosis is that life with this disease is a journey - and a very unpredictable one at that. There are times when I thought I was utterly miserable, only to be taken off meds for medical testing and really knowing what feeling miserable was.
At the moment I'm on Remicade. It's life-changing for me, but to reap the benefits of slowing down the progression of my PsA, I have to endure two days of not being able to keep food down followed by a week or two of severe nausea. I'll take it in exchange for the ability to go hiking with my family.
Hope, you have been given some exceptionally wise advice from members of this community and I hope you realize its not just people telling you what to do for your own good, these people live what you live, feel what you feel and have been though what your going through, some with a lot more experience and some just starting out like you. You are very fortunate to have a choice, a choice to take the proper meds and hopefully your doc can do something about the side effects or you can quit them. Quitting them will only make your side effects feel better for the short term, but the pain of uncontrolled PsA will last forever if damage is done. I do not have a choice about taking my meds, I cannot take them! Due to other complications with my internal organs it would be dangerous for me to continue with my PsA treatments. Its been just over 3 months since I had any medication and let me tell you, I am suffering like I never did before. Like Seenie, I have a very high threshold for pain and when I say I am in pain, its taken very seriously by my doctors. This is the first time that PsA has literally stopped me in my tracks, the pain is savage and overwhelming and there is no relief. So please take it from me and everyone else here who cares, do not make a bad decision based on side effects that hopefully can be resolved. Talk to your doctor!
Hi Hope,
I've been there. I get it. I'm sorry you are at this point.
I'm going to try and reframe this for you:
When I'm at the point where I want to toss all my meds in the trash, it is not REALLY that I want to toss all my meds in the trash. It means that *something about the meds has tipped me into not coping*. So the solution is the *change something*. For that, I go to my dr. and say *this isn't working for me, what can I change*.
There are tons of discussion threads about MTX on this board, with tons of great ideas to make taking it easier. I know you don't feel well and probably don't want to do it, but try and make the effort to do a little research here so when you see your doc you can discuss options intelligently.
For me, I couldn't take MTX. One pill (honestly, ONE), and I was vomiting in the toilet for *3 days* (no exaggeration). My husband was on the phone with the doc. and everyone was freaked out and I was on the verge of being hospitalized for it. Without MTX as an option, my biologics haven't been as effective (most work better along with MTX), and I have one less med in my toolbox for treatment. I'm on my 32nd years with PsA, and believe me, you want to have everything possible in your toolbox when the going gets tough.
Lets bring some reality okay. There is absoluley no question that extreme diets will make you feel better - for while. When essential nutrients are removed (juiced veggies have less nutrition than whole or cooked veggies) you body goes into a different state which provides natural pain control. There is a reason why hospice providers don't force food or drink on the dying. A quick study of either bulimia or anorexia will teach you that these folk don't get that way because they like losing weight but because either condition cause a natural high that falls short of a drug high.
Back in the late sixties I jumped out of an airplane with sole purpose of killing some folks living in a jungle. Needless to say they hsd a different idea. So with a bit of difficulty and a big hurt, I made it to our extraction point. I made it beacuse evertime the pain became extreme, I forced my self to vomit, as I was trained to do. It was as effective as the morphine I didn't have enough of. Starvation hss the same effect.
There are a ton of things that can make you feel better. For awhile. Every bulimic anorexic, and addict I have ever known die from it. There is not one damn thing the wholistic approach can do to stop the disease. Sooner or latter when the diets, mumbo jumbo, and other assorted crap people grab onto instead of dealing with you diseas runs out and your only option becomes pain management. Pain management of course being medicall managed addiction. No matter how well managed your tolerence increases and it quits working and you either live in total pain or you surrender your entire life to the narcos and die.
The choice is really pretty clear you learn to understand you have a disease that you can have a measure of control over taking you meds, keeping moving, and eating and living healthy OR you can lookk for a quick fix, live in denial of, and slowly give the disease control of everything in your life.
You are not the first person who has thrown up fro MTX nor will you be the last. You can continue to sit on the pity pot and give up more and more of your life OR you can say oh sh**, that didn't work whats next doc? >
Ali...bought a juicer and also juicing, also watched fat sick and nearly dead a while back. I'm also reading the China Study and have watched Forks over Knives. This info has been life changing for me! I am also following an alkaline diet and actually went completely vegan and gluten free on January 1st. Currently on no meds, however I may be starting a new one soon. I agree the pain levels have decreased, however started back to lifting weights today and that burning returned...ended up having to take a celebrex and Tylenol as both shoulders were getting pretty bad..felt like rotator cuff tendonitis in both. Funny but the burning feeling is very similar to the feeling of lactic acid during distance running. I didn't experience much of it...but I do remember the feeling. Now I'm thinking of adding more yoga and deep breathing techniques as this can help along with alkaline diet. One of the things recommended for lactic acid build up was to also try baking soda in some water. Good to hear you are trying dietary changes.
Ali Surrey said:
Hi Hope
FYI I have been off my meds for around 2 weeks now having been taking 15mg MTX weekly like you in the form of 6 tablets.
I also felt so run down and depressed whilst on the meds so made a pact to attempt a strict diet/lifestyle change in order to manage the disease. I'm juicing daily and following a high alkaline diet, ditching all bread, gluten and dairy as much as I can and doing some yoga/light exercise.
I must admit I feel 10 times better than I did whilst on the meds, although still a little sore. But I am able to function and do much more with a much more positive attitude without the drugs.
Each individual is different - many people manage very well on the meds it seems, but my choice is to try and focus on managing it with a holistic, natural approach.
If you haven't tried juicing, I really highly recommend it. I did a week long juice fast which made a great difference on my inflammation and I now juice every day to get added nutrients and vitamins in which help to give my body the best chance.
For inspiration if you haven't seen it, it's worth watching the film 'Fat, Sick and Nearly Dead' - http://www.youtube.com/watch?v=3mS0YA465ts
Anyhow I'm seeing a nutritionist soon who has been recommended to me, so will update with any other dietary advice I pick up. Good luck and hang in there!
Ali