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Do you NEED Methotrexate? One size does NOT fit all...

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Rheumatoid Arthritis
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Posted 11/15/2014 2:38 PM (GMT 0)
Hello,

I've been on Methotrexate for about 12 weeks now after a flareup of RA. After 4 visits with my rheumatologist, I am now convinced that they do not really investigate the unique characteristics of each patient, rather they follow a systematic one size fits all flowchart for treatment.

In my case, I have have occasional RA-like flares for years when I was younger, with no significant joint damage or joint deterioration. Then 4 months ago at age 60, I was diagnosed with RA after a sudden flare of fever, rash, joint swelling, conjunctivitis, and a RA factor of 200.

The immediate decision was to place me on Methotrexate (15 mg/week). After a few weeks, the symptoms all subsided; now after 12 weeks I have virtually no symptoms at all. Just some numbness in hands at night which I think are Carpal tunnel not RA.

So here's my question. How do you KNOW the Methotrexate is really improving the RA if you are only subject to occasional flares of the disease? And why would you keep taking this nasty drug if you are not SURE it is actually improving your condition? My rheumatologist is not going to consider weaning me off this for a YEAR!

I understand if you've had years of chronic RA and your joints are in deterioration - then you probably have no choice.

On another topic, I sense a lot of arrogance in my MD. She does not want to hear anything about my family history for example, which includes my sister who has Guilliane Barre syndrome, seems to me she would be investigating THAT. And she gets wuite defensive whenever I ask about the course of treatment, and WHY she is recommending it. More or less a "don't ask question, you are too stupid, just do what I say".

Appreciate any thought any of you might have on this, especially if you are subject to occasionally flaring RA versus chronic RA.
Posted 11/16/2014 4:25 PM (GMT 0)
RA is a very aggressive disease your 200 was very high, and a concern for your doctor and so RA needs to be treated aggressively. Once you get joint damage that damage cannot be reversed, but can be held back from getting worse. RA can have affects on other organs like the eyes and lungs, so its not limited to your joints.
I could tell the methotrexate was working because I had skinny knee for the first time on this medication. The swelling will go down with the methotrexate and that is your sigh that it is working, once you come off it your swelling might get worse, I've been on and off mtx and its hard coming off it, only come off with the help of your doctor, I had to reduce it slowly or I had withdrawal and that was hard. My knees and feet are swollen again and I've been off mtx(methotrexate) since June and my swelling is bothering me and I'm wishing I was back on it...
Go get your eyes checked out by a good eye doctor.
Hope this helps many well wishes...
Posted 11/16/2014 7:19 PM (GMT 0)
Have learned prevacid increases levels of metho by decreasing renal clearance. Possible serious or life-threatening interaction. If you need to be on meds to reduce stomach acid my pharmicist recommended Ranitidine. Also I learned Toradol (pain reliever) is a no no.

so many possible side effects I dont know if I even want to try it.

has anyone suffered hair loss from the metho?

cathy
Posted 11/24/2014 5:47 PM (GMT 0)
When I'm having a particularlyer bad day my pcp gives me a toradol shot and it helps a lot. But I can't take the pills. I cannot take many pills because of the Gastroparesis. Why is toradol a no no?
Posted 11/25/2014 12:03 AM (GMT 0)
Hi id be looking for a new MD you need to have faith in your Doctors and find one that suits you, it took me a few years of switching to do that.
I too in early stages had Flares then months or year of no signs so it was hard to diagnose till it decided to flare and Stay Flared.
I avoided Methotrexate for a long time afraid of side effects but I think in doing that I did more harm than good. most Rheumatologists nowadays do put patients as individuals and if yours doesn't then again look around for one that dose.
I think 200 is Quite High for your RA Factor and you need to get it under control, just because you have settled down doesn't mean the disease has its still festering along quietly .
Posted 11/25/2014 2:26 AM (GMT 0)
No two of us are exactly alike in our disease. Doctors have been treating this a long time and really do tend to know whats best to treat an aggressive chronic illness. Im sure that she is being as aggressive and conservative with treatment as she can because she doesn't want to see you have a serious flare and end up with disfigurement that she could end up being sued for for not following a normal protocol. It took me just a few months to have my fingers go crooked and they will never be the same.

I'd at least try and get that RA factor down and all other tests normal before even considering cutting back on treatment.

MTX for me was really no fun for the first 6 months. I started losing a lot of hair, was constantly fatigued and felt horrible. It has barely any of those affects now though. Hair is back, I don't notice any fatigue at all after my injections and I sure feel a heck of a lot better most days. Hang in there.
Posted Today 2:21 AM (GMT 0)
Thanks for all the responses. Fortunately, I don't have any bad side effects from the 15 mg of MTX except for fatigue. Since I posted that, I have had some increased knuckle pain and inflammation, So I think it is wise to stay on the MTX for now. I sure do not want to risk damage to the joints.

Not sure what the RA factor is now. I only got that test at the beginning of this episode. Do you have your RA factor checked frequently?
Posted 12/22/2014 4:12 AM (GMT 0)

                 Hi--Some response & questions of my own.  My RF was 188 when Dx; more important and prognostic test is the anti-CCP.  Did you have that?    I was on 15 mg. MTX for a couple of years without enough control of symptoms; so started on Enbrel. That made a major difference--but, with the combo my infection of choice was bilateral ear infections--unusual in that that is usually the pediatric RA problem infection.     The result was severe and never ending tinnitus.  Very disruptive   for sleep  & life  in general.  I came down to a dose of 4 MTX a week & decided to d/c the MTX to see if the tinnitus improved.  I thought it did not.   I have been off it for 1 year until 2 weeks ago when I saw Rheumatologist who felt my RA was worse( couldn't disagree).  Previously my side-effects were  only some increase fatigue day after , mild headache, and hair loss.

               I guess a year off made a major change in my reaction to it.  only on 4 /wk. again, but I feel awful.  stomach pains, headache, increased fatigue,  Way increased tinnitus, and scarey to me --blurred vision.  I am taking 2 mg./day of folic Acid to help prevent this stuff.  I don't how long I can put up with this to see what " goes away".

       

             finally back to you,  the rheumatoid factor is so variable in people it is not usually checked on any regular basis.  Mine only went down to 168; some people remain unchanged even with controlled RA, others it goes within "normal" range < 20.

 

            If you are not feeling substantially better, adding another  DMARD is  a good idea to talk to MD about, not only to hopefully feel as well as possible; but to prevent joint/tendon damage.

 

             If anyone has experience with new reactions to MTX after a drug "holiday" I would appreciate hearing about your experience.

               Hoping pain-free ( or at least as good as it gets) Holidays to everyone.   Louise

Posted 12/22/2014 4:35 AM (GMT 0)
I couldn't take MTX. I had stomache cramps, nausea, and explosive D for an hour after taking it.
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