Hello all,
I was recently diagnosed with RA, although I've had symptoms for 2 years now. It affects my feet mostly, but I have pain in my wrists and knees often. I recently had an MRI on my right foot to see if I have any erosions. I know my Dr. is probably going to want to start me on Methotrexate, but I have to say I'm not feeling too good about the potential side effects.
I was really looking more towards homeopathic solutions until last week my left foot flared up so bad I could hardly get my shoe on and make it to work. I ended up going to see my primary care, because the Rheumatology nurse and doctor failed to get back to me. He put me on a prednisone pack and vicodin.
Anyway the point of all of this, is I believe I probably should eventually go on the MTX but I would like to hear from the people that have been on it for a long time, and if they could go back in time would they still have chosen to go on it? I'm only 29 and I don't want to end up disabled, but I also don't want to end up completely messed up from the meds either.
I've been on methotrexate for about 15 years. Like you, I was worried about the side effects. I actually didn't take the mtx when it was prescribed to me. I just put it off. Thought maybe I would be okay without it. But I got so stiff and sore...to the point of not being able to move and then admitted into the hospital. It was then that I decided I needed to take the mtx. It really helped. Over the years I've had to have the amount increased and other medication added. I don't regret taking mtx at all.
Good luck with it,
Kelly
I started taking MTX a year after being diagnosed. It made a big difference, alleviating about 90 % of the pain and stiffness...still had occasional flares but not as severe or as frequent. For me, after 2 years on MTX the side effects began to increase, mostly some nausea and fatigue, and I developed a recurring case of thrush (Candida). The MTX was also somewhat less effective in controlling the RA. I added Humira and slowly tapered off the MTX; now I'm taking Humira only which is controlling the RA very well with less side effects than the MTX. Since starting off with Humira was not an option because of insurance restrictions it was probably the best path I could have followed. I don't regret taking the MTX; it worked well for a while. Just remember, you're not locked in once you start taking MTX; you can always change later if the side effects are a problem or it becomes less effective. My doctor was very insistent about taking the minimal amount of MTX that was effective to reduce long term negative side effects; and monitoring monthly with blood tests. If you're careful and communicate well with your doctor the risk of getting "messed up" on the drugs is small...never zero, of course, but untreated RA has it's own substantial risks.
Alan
I just got pulled off the MTX because of side effects. I was on 25 mg a week for 6 years. And the side effect I'm experiencing is pretty bad. But they still have lots of tests to do before we will know how much of that is actually from MTX, RA or some other cause.
I would still strongly recommending giving it a try. Frequent blood tests and a Rheumatologist monitoring you are absolutely essentials. MTX has made such a huge difference for so many people. Most have Alan's experience and don't even have to move on to even stronger drugs.
The damage that you can have from the disease is far worse than MTX that is being monitored. When I was put on it, it was life or death. So, it is a potent medicine. Just educate yourself and make sure that no matter what you are getting careful monitoring my your doctor.
I still recommend it even after all I'm going through.
MTX is a miracle for me. I know it's hard to start taking it but if it works it's so much better than life with out of control RA. That said, I'd like to get off it too.There are natural remedies that help a lot. One is MSM, it helps the inflammation a lot. There's no side effects and I've taken it for years.
I don't like to take any drugs for my arthritis pains. I recently started taking a product called Flex Protex. It's all natural and it's really working great for my hands. My hands feel so much better, a lot less soreness. It took it about 2 weeks before I really starting noticing the difference. Now after 2 months, my hands are sooooo much better. Just thought I'd pass this on. If you have really bad pain, you might want to take more than directed. It doesn't hurt because there's no side effects with this, only side benefits.
Here's a link that will show you a video about it.
https://secure.itvventures.com/resources/video/shows/FlexPro tex.php
Here's a link where you can get it. You can get it at wholesale if you become a total living member. Yeah!!
http://ww.itvventures.com/100632
I put off using MTX and after terrible swelling have been on it for 3 months and it looks like I will need to add Enbrel, lol. At this point I will use anything in order to walk. I am also doing an alternative that is called AP (antibiotic therapy) that can take up to 2 years but I do believe in the "infection connection" and hope to one day get off of the other RA meds. Below is the site.
roadback.org
Take care.
First: intheflow, please stop spamming these boards. It's obvious you do not have RA and don't care about those of us who do beyond wanting to sell us your product. If I'm wrong, feel free to correct me, but I'm willing to bet you won't.
Okay, that out of the way.... I started on Mtx about 6 months ago, graduating up to 15 mg. per week. We've carefully monitored my bloodwork and everything has been fine. The only side effect I have is "my methotrexate day" ... I take my dose every Thursday around noon, and on Saturdays, I'm a couch potato, mostly napping all day. But that's been my only problem with it... in fact, I've been exposed to viruses numerous times, and I still don't know how the Mtx may affect my ability to fight infection, because I haven't caught one yet since I've been on it!
BUT, I'm also not seeing as much benefit from the Mtx as some folks are fortunate enough to receive, and so now we're doing the paperwork and jumping through the insurance-company hoops to get me started on the Humira injections. I have both RA and PsA, and my rheumy feels Humira should be the right choice for me and should give me more relief. He said that if all goes well, we may discontinue the Mtx after 3-4 months on Humira... but only if I see very good results from it. And the Humira shouldn't cause the drowsiness and the "down day" I get from Mtx.
As some others mentioned, every treatment gives different results to each of us... and, there is kind of a protocol you have to follow in terms of which drugs to try first in order to get insurance approval for the more expensive ones (Humira, Enbrel, etc.).
When I first experienced symptoms and had no clue what was wrong with me. I tried everything. I finally became a vegetarian and my symptoms went away. I was back to normal...running...I even did trialthons. I had no diagnosis but felt cured.
Fast forward five years and the symptoms reappeared. When I say there were days I literally could not walk, I am not kidding. There were days my hands were almost non functional. I tried everything...fish oil, MSM, accupunture. Nothing worked. I went to the RD who quickly diagnosed RA. Within weeks I was on MTX starting at a dose of 7.5 mgs. (Now on 10). I almost feel back to normal. The RD may up the dose when I return in February.
Was I concerned about the side effects of MTX...of course. But I could not live the way I was living. For me, it was the best decision I could make.
MXT made the difference in walking and not walking, sleeping and not sleeping, traveling and not traveling, lifting my coffee cup to my lips in the morning or not. I could go on but I won't. I started MXT and then Remicade and I'll take the "can do it" days over the "can't do it" days anytime. Why live your life in pain? Once the damage is done you can't undo it. I resisted medications for 5 years and now I need knee replacements, my fingers, feet, and ankles are damaged and are painful each and every day. Don't wait to start treatment.
After being on Plaquenil alone for six years, then after five years on AP and sustaining great damage and always in pain, my rhuemo told me " the window of opprotunity" was waining for the MTX to be effective, so I went ahead and went on it. Best decision I ever made! I am able to do almost anthing I want ( except wear pretty shoes) and often I forget that I have RA.
The oIly side effect I have had is a headache on the second or third day after I take it.
I have been on it for a year and a hlf and take on .4 ml ( or 10 mg) and it seems to be holding the disease at bay. After seven yearso f being anemic, my hemo went from <10 to 11.7 and my CRP which was high as 94, is down to <.05. What a difference!
My rheumy did tell me that Plaquinil can lose its effectiveness in some
Most people do not lose their hair because it is a much lower dose than used in chemotherapy. But a few do. You will have to take folic acid which helps counteract that problem. Of those, that have had the problem, many have been treated with another medication as well. I'm not sure what it is called.
I would just discuss this concern with your doctor. But here is the thing. Lots of people get deformity in their hands and feets. This is also not attractive. Plus, the better your illness is under control, the better you can exercise and you will look healthier. And, healthy is one of the most attractive things you can present.
No one wants to lose their hair. But this is a serious illness, just like cancer. You have to consider that. Just talk to your doctor about your worries and maybe they can figure out a solution.
I take 20mg of mtx, 50mg of enbrel and have weaned down from 20mg of prednisone to 8mg but will probably have to go back up on the prednisone. My hair falls out but I can at least comb what hair I do have. I have quit these drugs that I call death drugs but with-in a few weeks I am crippled up so the drugs at least make my life much more than miserable.
My advise is: Read, read and re-read the warnings of all the drugs you are taking. Know that any time you have any breathing, coughing or lung problem do not hesitate to visit your Urgent Care.
Take your medicine like a good little soldier and enjoy feeling better. If their were an homeophathic cure, we would know about it here. There isn't.
Folic acid and Leucovorin http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202321.htm l
The folic acid is much, much cheaper than Leucovorin and is essentially the same thing. Although, Leucovorin can work better when taking plain folic acid isn't cutting it.
I do the injectable mtx and just love it. As mentioned in a previous post...it is walking vs. not walking etc. Folic acid while on mtx is of the utmost importance.
Do not wait to start any RA therapy. I personally would not use homeopathic remedies alone but as a supplement with conventional RA therapy. It is important to check with your doctor first BEFORE taking ANYTHING else that is not prescribed to you. You don't want to end up with any nasty med interactions.
Wow I really appreciate all of the feedback! I was out of town for a few days, so I finally got a chance to check out the thread. Well some good news for me. I had my follow up with my doctor and he said the MRI didn't show any erosions on my foot, just swelling. He said at this time he doesn't want to put me on MTX. He does want to put me on sulfasalazine. I'm planning on researching it tonight.
A part of me wanted to not even go on anything since I've been feeling so much better since my last flare up. I think you guys just convinced me not to wait. I thank you!
NP~
That's excellent news about the MRI results. I agree with what your doctor is saying and Scout; I don't agree with "You'll have to start it one day so why not start it now?"
There are a lot of medications that will work for many people with RA. You don't hear as much about some of them anymore but they are still around and can be very useful for many with Moderate RA.
I was dx'ed 13 years ago and had horrible symptoms; but negative blood work and very little (But some) signs of damage on x-rays. I started out on Sulfersalizine, an antinflammatory and a short course of predisone. Several years later I had to be changed to Plaquinel.....after adjusting the dose for awhile I had to eventually be switched to MTX.....then later had to add Humira. My point is I was 22 when I started this. I'm now 35 and I've got plenty of years ahead of me to battle this disease. It's always been my opinion that I need to use the weakest drug possible to acheive the best results. Save the stronger medications for later down the road.....because experience has shown me that I will need them. I'm glad I didn't start out on the stronger stuff only to find out years later that I'm out of options. It's my opinion that some of these RD's start folks out on medications that could be avoided had other options be tried first.
Yes; my RA has progressed. MRI's and X-rays show it....BUT after all these years on my treatments my doctors and I both agree it's progressed at a better rate of speed than it would have without any treatment at all.
Get on something.....and stick with it. Don't wake up one morning and say "Oh, I don't need this stuff anymore. I'm cured" Been there too. It will only set you back. Get on a treatment (Hopefully a modest treatment) and stick with it. You'll be happy you did.
Good Luck to you NP. Welcome to AI. Hope to see more of you here.
Glad there has been no real damage yet. That is the way to keep it. These DMARD drugs are the only ones proven to slow/prevent destruction. Do your blood work, see your rhuemy regularily to stay out of trouble with the drugs.
Even though I have had nasty reactions to some drugs, I wish I had 'stayed the course' with the DMARDS. I have a ton of damage from the untreated years, which I probably would not have today.
I'm on MTX (15 mg.) & Arava (10 mg.), plus 5 mg. prednisone, folic acid, leucovorin, & Celebrex. I've been on the MTX since March - that, by itself, didn't do much. As soon as we added the Arava, though, it was as though a miracle had happened. I could walk, I could use my hands. I'm not 100%, and I'm going through a flare now, but it's nothing - NOTHING - like what I went through before I started the DMARDs. I have had some symptoms - I have stomach problems and yet, my hair is a lot thinner than it used to be. I had mouth sores until I started the leucovorin. Doesn't matter. I can walk!Thanks again guys for the advice. I will get my rx filled tomorrow and start on it. I'm hiking a couple of mountains on Saturday, so I'm sure I'll spend Sunday crippled, but maybe the Sulfer will eventually help with that. I'm an avid hiker and I haven't gone on a hike in 2 years that didn't leave me bed ridden and awake for 2 days. I'm also big into bodybuilding and the last year landed me in the doctor's office over and over again for various pains, which is how I came to find out I have RA.
A couple of weeks ago my toe blew up on me. It was out of nowhere. I've never had a problem with this toe, but it scared me and scared me bad. I am busy supporting my wife and newborn child, so I can't be laid up like that. I was getting up 2 hours before work to ice it, just so I could get my shoe on and out the door. I'm sure it's nothing compared to some of you on this board, but I'll tell you it really showed me that I can't mess around with this disease.
Any opinions on the sulfer is appreciated. Thanks!