On 12/9/10 I was diagnosed by my rheumatologist with Psoriatic Arthritis and Arthritis in my left hip (damage). The pain is severe (9-10 when unmedicated or really undermedicated). I am prescribe 100mcg of Fentanyl and methotrexate and meloxicam for analgesic relief and lamotrigine (like gabapentin) and cymbalta both I was already on they just upped the dosages. On the 13th, I will take my methotrexate for the 6th time. I am dealing with so much now. This disease is ripping apart my treatment plans for all of my other conditions. It only all started on Thanksgiving. I am so confused and so lost. I'm still trying to figure out the best way to wear the fentanyl patches. I've checked message boards via my wife since I am overwhelmed and she's helping me learn what is too emotionally taxing to learn. I have some very good ideas now but I realized there are many people who can help me. What can I expect from the methotrexate? Why am I diagnosed with long term use of the medication, what's so bad about it? What are the dosages that work for people? I'm literally drowning in questions regarding this and a dozen other health issues which are so intertwined I can't unravel the knot and I'm having some really bad days in regard to my mental health as well as pain levels. Thanks for the help, Michael.
21 Mar 2013
I haven't posted on here before but I have recently started taking methotrexate by injection so I can post an update for people who are nervous about it.
I'm being treated with .8mg once weekly by injection along with 5mg of folic acid daily (I skip the day of my injection but my doctor tells me not to) and I've had no side effects. I was terrified to give myself the needle but it actually accidentally went into my skin the first time when I was trying to see what it would feel like. It's injected using an insulin needle which is tiny. I've noticed three doses and I'm still scared each time but I'm noticing slight positive improvements already. Nothing dramatic though. But honestly, I'd ask to take it by injection. I was surprised that my doctor didn't recommend it and I had to request it. Once I requested to get the inject-able kind she said that was better because an unknown amount of it gets lost in the digestive track and it's more effective by injection anyways.
Think of it this way, people who are taking this drug for cancer literally take 100's of times more of this drug than we do. Also, think back to whenever you've taken any prescription medication. If you read the warnings from the pharmacy they are almost always scary. Even the side effects for advil are scary. You are strong, you will be fine. This medication will help you live a normal life.
4 May 2013
I just started taking methotrexate one week ago today and noticed my feet and ankles swelled unlike before. I am taking methotrexate for RA, having just recently been diagnosed. I was wondering too, how long before noticing any good changes in my condition, and if the swelling ankles was just a common side effect. I too, have so many questions I don't know where to start. I am 59 and have several other medical conditions but am as active as I can be in spite of them. I am taking this medication be cause I can't imagine not having full use of my hands. That seems to be the area that RA has attacked.
22 Oct 2012
I was on methotrexate for a while. After having taken 1.0mL, I developed mouth sores, so had to take 0.8mL. This drug is photosensitive, meaning you have to stay away from direct sunlight. On top of that, I've lost some hair due to it, so after some time I stopped it, and right now am trying Enbrel.
11 Jan 2011
The methotrexate will work. I was diagnosed in 2009 and went through the same emotional turmoil you are going through. The most difficult thing was realizing I will have to be on these meds forever! The best advice I can give you is something you probably have heard a million times before! One day at a time. With the pain being severe, you are not yourself, you are not thinking as you normally would. Get to the place where you can actually move without hurting. I also take Methotrexate 2.5mg, 8 tablets a week. I had a big problem with it because its chemotherapy and I really thought I was going to die! I did experience mild to moderate hair loss, which was also very difficult, but I really think that I am the only one who notices it! I don't really have any other side effects. I am on some other meds which can cause severe eye problems but nothing has happened yet. I really thing that once you get the pain under control you will be able to absorb all of the information being thrown at you. The treatment is the best, and although authorities do not know exactly why, it does work. I am basically pain free. If I wanted to I could do a cartwheel, but I just don't want to! LOL! I still think and hope that some day I can come off of these meds, but I doubt it.
Initially I changed my diet too, no red meat, no alcohol and mostly fresh fruit and vegetables. But as of today, I've fallen into my same eating habits and do enjoy occassional alcoholic beverages! (winthin reason of course)
Good luck to you, hang in there, the meds will work.
11 Apr 2013
I was diagnosed with undifferentiated connective tissue desease in May 2012. I guess that means the Doc's don't know what it is... but it hurts and my whole body is in a constant state of inflammation (I like to call it "fever"). It's not in my joints but everywhere else in between.
Originally I was put on prednisone and it knocked the inflammation down but wanted off due to high anxiety and the long term effects. Doc called prednisone a "dumb bomb" and the methotrexate a "smart bomb". So now on methotrexate 8x2.5mg per week (1mg Folic acid daily). Not sure how well it is working, still feel the pain and have lots of inflammation but I have had no side effects. Blood work is within normal limits.
Interestingly, I had to have carpel tunnel surgey due to the the inflammation in my wrist was causing nerve damage... had to stop the methotrexate for a month, blood white cell counts levels soared, just like they did when first diagnosed... I felt a lot worse than I do when on the methotrexate... so it does do something.
Sitting still or laying down is comfortable but the the pain is highest when I first stand up. Movement and exercise helps, although it is often difficult to get myself moving... riding a bike is a good exercise for me... once I get throught the initial pain.
Have dramatically changed diet - sort of a paleo diet, organic eggs, chicken and beef, no grains, no lugumes, no dairy, lots of organic fruits and veggies. A glass of red wine once or twice a week... (I know, not recommended with methotrexate but somtimes I have to say wtf... )
I fear that in my case, the cure may be worse than the disease in the long term. Hopeing this disease will go into remission but have yet to find the key.
I won't stop looking.
23 Oct 2012
BionicMike- First of all you are NOT alone. What you are feeling is normal especially when you are dealing with severe pain and a new diagnosis. I have fibromyalgia,severe degenerative disc disease,migraines and I was unable to get any pain relief. The only thing that worked at all was stadol nasal spray which was highly addictive to me so soon my doc was unwilling to use it. Then he started me on fentanyl patches which works pretty well. Then I was diagnosed with celiac disease which ia an autoimmune disease that damages the small intestines--there is the reason most pain meds didn't work--I could not absorb them. Then about 3 years ago I was diagnosed with RA. I have been on methotrexate from the begining-the only real side effect I had was hair loss--but now the past three months my liver functions tests are becoming very elevated so we are stopping the mtx to see if that is the problem. I am worried about what I can take that will help the RA but not harm other things.
I have been on high doses of prednisone--terrible weight gain-tried remicade and enbrel with no help--I am now on pacquinel and actemra along with fentanyl.flexeril,neurontin,elavil,folic acid,vit D(had very low levels),tizanidine--with only minimal relief for th RA. Sorry for the rambling--just wanted you to know there are alot of people who feels helpless and confused at times with all this info to find and see what might work for you--every one is different. As for the fentanyl patch I am on 150mcgs so I wear two patches at a time--I have found the best way to keep them on is to make sure the area is clean and dry I then warm the skin with my blow dryer put on the patches and give them a small blast of heat from the blow dryer and gently rub fingers around the edges--this works pretty well. I hope something I said helps you. Best of luck--kim
10 Jan 2011
Hi, sorry about your recently diagnosed condition.
I also have RA and PSA and take MTX - 20 mgs per week, Folic acid 1 mg daily, Humira shots, once a week and Meloxicam - 7.5 MG per day. I also had taken Cynbalta but stopped as it caused weight gain which effected my diabetes. Have been on MTX for 2 years now.
Methotrexate is a chemotherapy drug that prevents cell reproduction by interfering with folic acid activation.It is very effective, but it can cause side effects like nausea, mouth ulcers, blood problems. Prolonged treatment with MTX may also lead to folic acid deficiency which is why your doctor should also have prescribed Folic acid for you.
The MTX should help greatly with clearing up your skin eruptions cause by the PSA. I personally used to walk around with bands on all my fingers.
No doubt you are taking blood tests every 2 to 3 months. This is how your doctor will monitor any potential side effects from the MTX. Until such point in time as your doctor advises you to stop taking MTX, this drug really does slow the progression of the disease so don't be nervous about taking it.
Very sorry to hear that you have or had an 'episode' of RA. They come and go and some days are much worse than others. Don't know about your other ailments but for me, exercise is extremely helpful with the pain from RA and PSA. You should discuss with your doctor if you are able to start an exercise program. It's a little tough in the beginning but it does help to reduce pain - for me anyway. Even just walking will help.
Don't give up and don't let this disease drown you mentally. You're not alone with this and the more research you do, the more you will be able to deal with it.
10 Mar 2011
I was also diagnosed in 2009 with PSA. I think the previous answer is spot-on. MTX should work. The hardest part -- for me -- is coming to terms with the idea that I had a disease (I came home from my first visit to the rhuematologist telling my wife that some quack said my sore wrists were from some weird disease I hadn't heard of). I've been between 6-9 2.5 mg/week of pills for two years (now on 20/mg). I've gone up and down on the meds as my liver levels spiked and normalized. The results have generally been pretty good, although I've had some flares from time to time (and my feet still bother me enough to prevent me from walking more than a mile or two without serious ache). I've had no side effects (to my knowledge) and have tried to offset the long-term health risks by controlling what I can (better diet, exercise). To be clear, it sucks and I wish I didn't have PSA.
I do worry that all the meds (including the biologics if you need them) will catch up to me one day. It's just that as time has gone on, I realize that people are saddled with much worse health conditions. In the time between when I was diagnosed and today, I know a few people around my age (mid forties) who were diagnosed, and died, from colon or pancreatic cancer. It sounds trite, but you can't let this define you.
19 Mar 2013
If you've posted on here and have an update re taking methotrexate, can you post again with how you've got on or what you decided to do?
I'm a 39 year old female with sero-negative RA. I've had swollen knees and elbows since September 2012. I'm very lucky in that I don't have severe pain - some pain but mainly discomfort. Sulphasalazine hasn't worked and my rheumatologist wants me to take methotrexate and steroids. I was given the prescription two weeks ago but I've been too scared to start taking them.
This is a really serious drug and I completely understand why Michael and others here are feeling overwhelmed. I know there are much worse diseases you can have so I feel guilty for feeling this way.
I have so many questions; Will I always have to take it or just for a short while? Will I return to 'normal' after I stop taking it? Will I have to stay isolated so I don't pick up germs? I'm seeing a rheumy nurse on Friday and hope to have these questions answered but meanwhile I feel very alone, confused and scared.
23 Oct 2012
I have recently been diagnosed with Seronegative RA and just started taking Methotrexate 5 mg. 1/week. I have only did this for 3 weeks and had to stop for one because of the severe headaches. I also have much anxiety about taking a drug that kills my cells. I have absolutely no relief from my pain with the Methotrexate but think this is as my doc said, going to take a while to get under control.
I can so identify with your emotional feelings. When my pain is sooo bad my head goes to a place and I feel like this is going to be like this forever. My negative feelings tend to feed off of themselves. It is very hard. This website is a blessing. I also try so hard to remember that this is only today. Tomorrow is a new day. These are also the same times when I need to remember to have gratitude for the simple things that really are important to me, even my crazy cat that somehow knows when I need sympathy and cuddles on my lap. I hope it helps a little to know you are not alone.
10 Jul 2012
I echo a couple of the other, earlier comments - taking 20 mg weekly for 2 years now. It took about 3 months for the pain and swelling to subside. It's a great drug so far for me. Take the folic acid, I take on average 1000 mg daily. When you are able, get back to exercise - even if it's only biking/walking. Lastly, you need to become a teetotaler, if you aren't already. Alcohol and methotrexate can overwhelm your liver. If that happens, you'll think these are the good old days!!
- Methotrexate Information for Consumers
- Methotrexate Information for Healthcare Professionals (includes dosage details)
- Side Effects of Methotrexate (detailed)
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