Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Greetings,
I am a 47-year old husband, father, provider, musician, among other things. I have been dealing with chronic pain and chronic fatigue for several years. Finally referred to a Rheumatologist last August and was told I had Fibromyalgia. Took the usual medications for about 8 months with no benefit, finally got to go to the Mayo Clinic, and now have a new doiagnosis of RA. I am not pleased with the outcome, but there is no denying that I have the disease. I have pain from my shoulders to my feet on most days. Unfortunately I also have some degeneration in my spine as well, which we do not think is related to RA at this point.
That said...I have been prescribed MTX at 10mg to start, titrating up to 15mg after 2 weeks, then up to 20mg 2 weeks after that. I am taking Folic Acid, and was also prescribed Naproxen for pain, which he recommended taking twice per day on schedule until we get the symptoms under control.
My questions are around medications and the possible side effects of the MTX. I know everyone is different, but how often do mouth sores or other problems with MTX occur? I just took my first dose today, and have taken the folic acid for 2 days now. I am hopeful the 1mg of Folic Acid will keep side effects to a minimum.
Is there anything else I should expect from these first few months of treatment? I can see the MTX makes me tired, so I will likely have to make this something I take at night...but perhaps that side effect will go away with time.
I would appreciate any advice you guys are able to give. I have been reading a lot, and will continue to do so. This was not the diagnosis I was hoping for, though it doesn't surprise me. Makes me mad that I spent nearly a year with worsening symptoms and joint damage because the previous doctor wasn't able to diagnose it. But it is what it is.
I've been on MTX since the early 90's. I had some mouth sores for a very short while in the beginning. As explained to me by my rheumatologist, this is typically when the dose is new or too high for the patient....and may need to be cut back a bit. Of course, back then we didn't know about Folic Acid. Mouth sores are not rare, but certainly not common. And they're short-lived [because the MTX dose is typically reduced].
Just to make sure we're on the same page.....you're taking MTX pills, 7.5 mg twice a day just one day a week, right? [If you're taking 15mg MTX daily STOP and call your doctor. MTX should never be taken daily. Only once a week. In very rare cases, in the very beginning, it might be broken down into two days a week. But NEVER 7 days a week.]
There are some patients who take 25 mg once weekly and never have any symptoms. Then there are other patients who take very low dose and complain. [I think many misinterpret what they read and assume they're going to be on their deathbed while taking MTX.......and magically they are bedridden....power of the mind.]
In the early years, as I gradually increased my MTX dose, I dealt with nausea for a couple days a week. But in all these years I have never missed one day of work because of it. In my case, when I was on 25mg weekly, I would take the pills at night after a high carb meal, then in about 36 hours I'd become lethargic and mildly nauseous. 24 hours or so after that things returned to normal. So you might want to work it out so that you take the pills a couple days before the weekend.
IF you feel very uncomfortable with the pills, ask the doctor to switch you over to the injections. Bypasses the digestive system.
MTX is the time-honored treatment in spite of some bad press.
Just know that if you've given it a fair chance and don't see good results, you might discuss moving on to a biologic.
It's not the diagnosis any of us want....but be thankful you're getting a diagnosis at a time when there are a number of drug options.
Good luck!
Lynn
I am sure this diagnosis was a shock and very disappointing, but another way to look at it is that you can now be on appropriate treatment. Hopefully that treatment will work for you -- but be patient as the medications take time, and sometime require additional meds or changes.
I have only been on MTX for about 4 years (with a brief break in that time period). I started at 5 mg once a week and am now up to 20 mg (which I split - half in am and half in pm) once a week. After my 6-7 months off, I resumed my 20 mg dose without ramping up. Other than mild nausea in the beginning and a little more hair loss than the usual amount I would lose daily, I have had no problems with it. And admittedly I don't take my folate daily like I should. I have never had mouth sores. That is my experience with MTX. I am also on Humira, and have had no problems with that. I consider myself very lucky as I have mild RA and tolerate the meds. A lot of people do not, but don't get yourself into the mindset that you will be one of those.
Good luck and let us know how you are doing!
I am very glad we're actually fighting the "right thing" now, as before it seemed like the doctors were just guessing and trying whatever they thought might help. It took a very compassionate, and very good doctor at Mayo to find my RA. I am glad for the time I spent there.
Also thankful for this group and look forward to getting to know you all more over the...well, for a long time.
Frazzled - are you having periodic blood tests now until your appointment with the rheumatologist in three months?
Yes, I am having CBC with differential, AST, and creatinine every month for the next three months. I will also ask for a Hep B test as well since they have not tested me for that. I think I let you guys know that I am Hep C negative, which is good. Liver tests were stellar to begin with, so it will be interesting to see how they change. Unfortunately my local provider and Mayo are using different scales so comparison (for me) will not be as easy. But the doctors can figure that out.
If you want to, post the test names, your actual test result values, and the reference ranges [normal values].
I think all of us need to understand our blood tests.
Something I learned from a veterinarian who specialized in liver disease [and this applies to humans]:
THE LIVER IS THE SPOKESPERSON FOR THE ENTIRE BODY.
For example, at my local provider, my AST was 15 on a reference range of 0-40, but at Mayo I was 23 on an 8-48 reference range. Same is true with ALT - there are different measures being used. I can still correlate those to good numbers vs. bad...but they are not the same scale.
Anyway, I definitely understand that if my liver values go out of whack, that is very bad - not just for my liver itself, but for the rest of the my body, as well as how I can or cannot tolerate the current treatment regimen. So...only 48 hours after taking my first 10mg weekly dose of MTX, I feel quite tired and achey. I have rest most of the day. I will likely move to taking this on Thursdays since I have responsibilities on Sundays most weeks. I don't think a one day movement, now based on what I know, will harm me.
Hope this helps.
A one day movement is fine. I'm sure all of us have done that. I know I have.
Re the liver enzyme tests:
[1] It appears that both labs are using the same unit of measurement, which is [in your case] is units per liter. [I think [2] below explains why the divergent values in your case.]
[2] labs create their own reference ranges through data collected AT THAT LAB or a group of labs in that testing company over the years. Think demographics and where both labs are located. For example, if the community using lab A is very young and healthy, the data for that lab might be sparse and statistically point towards a lower set of reference range values. If a community is comprised of older, geriatric patients with lots of medical issues, the collective info could produce a "normal reference range" that's higher than the first lab. Mayo is a go to place that people often go to AFTER they've gone elsewhere. So it stands to reason that Mayo's patient base is older, not as healthy, or have chronic issues.
[3] While your own test results are both in the normal range, because the actual values are rising, testing in the near future to make sure they don't jump the limit is a prudent thing to do. The nice thing about MTX and bloodwork is that if tests head into the abnormal zone, you can get off the drug for a bit until the levels stabilize. [I'm making it sound simple....it isn't always.]
It's great that you've taken the time to learn and understand your body, how it works, you test results, etc. Some of us have chronic elevations in the abnormal zone that are perfectly normal for us. Our "new normal." We are all so different.
Getting back to YOUR labs and test results: you might consider using the same lab all the time so you can measure apples to apples.