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Just dx'd with RA (with erosions) I don't want to take Methotrexate!!

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Rheumatoid Arthritis
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Posted 6/23/2011 3:46 PM (GMT 0)
In January, I began to have burning in left hand going up to my shoulder -- then the right hand, same symptoms. Docs thought I had Carpal Tunnel but after blood work, my ANA was 1:640. Saw one Rheumo (who was very strange) then a second. Following an MRI on both hands and wrists, I was just told that I have large erosion on right triquetrum and small erosions on 2nd metacarpal head. I've been taking Naproxyn 325 & Paquenil but doc wants me to go on Methotrexate. I just quit smoking (which is difficult) and have always enjoyed a glass or two of wine each night. The doc told me to think about my options for a few weeks, stay on the current meds. NOthing about these drugs makes me comfortable -- can anyone offer anything to make me more comfortable? I just lost my job in May (after 19 years) and feel like I am loosing control of any choices in my life.

Thank you. blush

Deby
Posted 6/23/2011 4:56 PM (GMT 0)
Unfortunately, all DMARDS make me nervous. I'm on planquenil now. Been on it for two weeks. I've been told it takes 2-3 months for it to kick in. The mobic I'm taking helps the pain to drop down to a level 1 most days. Today due to storms I'm bouncing around a 3. :(

I don't know of anything to feel more comfortable. If you're having joint trouble you can try gelatin capsules. My PT said it's good for joints.
Posted 6/23/2011 8:01 PM (GMT 0)
I was really scared like you with after reading about all the side effects...but I'm not so scared now...
Look for a good B-12 supplement with folic acid in it, and a supplement of biotin, add those before you start
the methotrexate...and ask your doctor about if your going to do the pill form or injections,
the injections have fewer side effects....it costs about $11.00 for the injectible solution and about $5.00 or less for
the syringes, my insurance did not cover the MTX, but it was only $11.00...
accutally I send you more well wishes on getting another job soon, as that might be a little harder, ask
your former employer about cobra benefits maybe that would help...
my B-12 cost me 20.00 at health food store and they are sublingual, I also add a seperate
folic acid once a week was 6.00 and the biotin at 12.99, but walgress has a buy one get one free this week...
well wishes on the job hunt...
Posted 6/24/2011 1:58 AM (GMT 0)
I would be more afraid of the RA and developing more erosions then of the Methotrexate.

Do take lots of folic acid-my doc has me on 3 mgs a day-it helps with the side effects of the MTX.
If you doc will let you add a biologic-they really help prevent further erosions.
Posted 6/24/2011 3:55 AM (GMT 0)
Oh me oh my. My family is hoping I can find some natural solutions. I'm not trying to be naive but I'm open to searching. I guess I'm worried ..... spending the rest of my life on medications? I really appreciate any help, hope and suggestions you have. Many, many thanks and my prayers for all of you. :-) :-)
Posted 6/24/2011 11:30 AM (GMT 0)
A natural solution would be great, but alias, everyone here would be on it ...
there are some natural solutions to help with the pain, but nothing to help yet with
the erosions of RA...it's the erosions that'll do the joint damage...
I don't know why everyone is afraid of taking a med indefinitely, when I was dx with asthma as
a child I knew that medicines would able to help, yes sometimes I'm afraid to use my inhaler in public
but I can and do use it...
well wishes in your search...but don't be afraid to at least try the MTX
Posted 6/24/2011 12:00 PM (GMT 0)
I was afraid of MTX, too. But it does help so much.  My doctor started me out on too large a dose for my system ( five pills once a week ) so one of my liver enzymes was elevated.  I am starting MTX again next Friday ( 3 pills a week).  I am looking forward to it becasue I have been in a lot of pain and I have a lot of fatigue.  I am sero-negative, so it took a while to get a Dx.  When I finally found a good rheumy, she Dx me at the first visit based on symptoms, swelling, etc. The xrays she ordered confirmed her Dx, as I too have bone erosions in my hands.  I know I have been fighting this disease for ten years on my own. I got by for a while w/just anti-inflamamtories, but when my RA got bad, it really got bad.  I have several swollen, painful joints, and I am ready to take the meds now. I, too have asthama, and I also have high bp, so I am used to taking some sort of med every day. It comes down to quality of life.  I cannot continue to live with the pain and fatigue RA has brought to me, so I choose to take MTX.  MTX has been used for decades, and it has been proven effective. There are possible side effect to every drug you takej, even aspirin.  Hope this helps!

V

Posted 6/24/2011 4:59 PM (GMT 0)
Again, I'd like to thank you for your suggestions -- I am a baby on the path of figuring this out so speaking to people with this helps so much.

I have to admit that one of the side effects that causes me great concern is the liver failure/cancer. I have always enjoyed a glass or two of wine with meals or even more so on vacations. The posts on the internet say if you have ever drank, you should not be on MTX. I am willing to forego drinking much but still plan on having a glass or two each week -- if I want it. If I don't, I won't.

My Internist and the Rheumy said that would be ok --

Also, since I've only been on the Plaquenil for 2 months, wouldn't it make sense to try it for a few more months then do blood work to see if there is any improvement?

Is there ever improvement?

Thanks for taking the time to read my questions -- they may seem foolish or silly but they are important to me.

Thanks again,
Deby :)
Posted 6/24/2011 8:33 PM (GMT 0)
a lot of people on here do drink and take mtx (methotrexate), so you can find older postings here on this about that, always let your doctor know about your concerns and if you do get put on this medicine you'll get checked regularily (bloodwork) with you liver enzymes and if they do come back high your doctor will take you off the medicine before you can get a toxic level..also make sure to get yearly eye checks as it can effect the eyes, and let your eye doctor know your on mtx so you can get your retina photograhed yearly to see if the medicine is doing any damage to them...its an easy photo, I've had mine done yesterday...
well wishes to you and go back and read some of the older posts, but don't respond to anything older than 2011 postings...
drinking on mtx is controversal, I just don't drink but others here do and they are okay....but I think a glass a week would probably be okay just ask your doctor...well wishes and I hope this helps...
Posted 6/25/2011 1:29 PM (GMT 0)
Deby: I was diagnosed with RA in 1981 when treatment protocols were opposite what they are today and the DMARDs were the last drugs used -- typically after several years. Unfortunately after several years, RA can do an incredible amount of damage to the joints. I'd say that all my joint and tendon damaged began before 1989 when I started taking MTX. Once the erosion process begins within a joint it's difficult to control the process. The damage from RA is far worse than the side effects and potential risks of the DMARDs.

I agree that side effects of all the DMARD and biologics are scary but with regular monitoring I've come to feel comfortable taking both MTX and Remicade.

Good luck.

Albizzia
Posted 6/27/2011 7:38 PM (GMT 0)
It's so odd -- in April, when the Rheumy told he he was 90% certain I had RA, I was so relieved -- I was worried about lupus or scleroderma. I thought, "Everyone has a little arthritis!" I read about RA a little at a time because my brain just can't quite seem to wrap around the fact (?) that this is serious.

More questions to my new friends .....

: Since I've just started on Plaquenil in mid-April, and my RA is considering this, how long can you stay on this?
: Erosion to two fingers on each hand and outside wrists -- I still wear my night brace (cause they thought I had Carpal T., what happens with erosion? Is this serious too??
: Luckily I did have an Opthamology appt in March -- notice recently I am squinting when watching words on tv -- is this also serious?

Someday, I'll stop bothering you and feel more secure. Am waiting for a call from the Rheumy (since 8am) but wanted to thank you again for your help and support ... and friendship!

Deby cool cool cool
Posted 6/27/2011 8:25 PM (GMT 0)
As long as planquenil is helping you stay on it.
Erosion is the wearing away of the bone. You may need joint replacement or fusion later on.
Planquenil can cause retina damage. Better see your eye doctor.
Posted 6/28/2011 12:58 AM (GMT 0)
Take a sheet of graph paper hold it at about arms reach and look at it with one eye closed.
Then with the other eye.
If there are spots on the graph paper where the lines disappear or wave then you need to go back to the opthamologist right away.
Squinting is not part of the problem that plaq causes.
Make sure you have a visual field test every 6-12 months as recommended by your rhuemy or your opthamologist.
Posted 7/10/2011 2:05 PM (GMT 0)
Deb I have been on Humira, methotrexate and Remicade for a number of years due to crohns/ colitis and now the Humira and MTX for RA and believe me the pain I was in I was happy to try anything that was going to help and it has improved but at the moment I seem to be going through a flare. But the others are right you will need those drugs to help with any further erosion probs in your joints.
I have had eye problems, liver problems to the point I have had to have liver biopsies done and that has been due to the numerous medications that I have been on for my many medical problems. but I still say without the medications it would be far worse and I agree it would be nice if there were natural remedies but theres nothing that will help with the deterioration of your joints so its not worth taking the chance on getting worse.
The way I see it is that if you have problems on those meds your Rheumy will take you off it immediately and try something better suited to you. I also like a glass of wine on occasion and I do have it if I feel like it but I'm not a big drinker, but no harm in a couple every now and then.
Hope you are able to make the best decision for you. Keep us posted and take care
Doreen
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