Switching from MTX to another DMARD

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wearyRAsufferer
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   Posted 7/24/2010 9:50 AM (GMT -7)   
I am seriously thinking of switching from MTX to another DMARD.
Life before RA 3 years ago was very different and one of the differences was that I was a social drinker.
My onset was very severe but MTX and a high dose of prednisone turned me around from being an invalid to a high functioning RA sufferer. (now I am completely off prednisone and on 20 mgs. MTX per week)
What I mean by highly functioning is that I work full time and I do not miss days from work but it takes all that I have. I battle fatigue and I have pain & stiffness every day but no one wants to know about it my doctor included. He keeps blowing me off telling me how different I am from the first time he saw me. My family....well lets not even go there- I'm just responsible for everything and just get it done please.

Last RD visit I made mention that I have been drinking socially on the weekends and he went through the roof. He pretty much said I had a choice to make. It didn't have to be that day but it has to be made right away.

I'm sorry but I have had it. If I can't enjoy drinks on the weekends with friends that the world can go to hell. I'm so fed up with how I feel and all I do and I feel good after a couple of drinks. No I don't want to have a now & then drink for a special event. No I don't want to have a sip of wine with my friends just as a taste as the doctor has suggested. I feel like tying one on both days of the weekend.

So now if I sound like a lush- that's the way my doctor made me feel- maybe I am.

The real question is- has anyone after achieving this kind of success with MTX changed to another DMARD with the same success?

I once had to go off MTX for an infection and I flared in my shoulders, wrists and hands pretty bad for a month. On MTX I have chronic pain but no flares. I am terrified to ever have a flare like my onset was. I had to go out on disability from work for 3 months and could not even feed myself.

Can anyone make a suggestion?

If so which one and how did you do it? Did you have to wean off MTX?

wearyRAsufferer
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   Posted 7/25/2010 12:03 PM (GMT -7)   
hmmm 21 views no replies- I guess I take that as a no. No success.

TayIsa
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Date Joined Sep 2008
Total Posts : 285
   Posted 7/25/2010 3:54 PM (GMT -7)   
sorry weary, i am one of your viewers and i dont take mtx so do not have an answer for you. best of luck finding your answers

CaMama
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Date Joined Mar 2005
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   Posted 7/25/2010 9:37 PM (GMT -7)   
Weary, unfortunately, as you know, mtx affects the liver and I think the drugs in the same category/family as mtx do the same.  Drinking can really increase any issues to the liver. I was never a big drinker to begin with, but I pushed it off completely b/c I started having serious liver issues. Now, when i have even just one drink, I feel so rotten the following day (flare and stiffness) that it just isn't worth it.  I do occasionally have half a drink....but that's about all I can handle and care to risk...but we're talking twice a year. 
 
You'd have to do some research to see if any of the other drugs don't affect your liver quite as much as mtx does, but I think many of them do qualify for monthly blood work.
 
I take plaquenil and it works well for me, my current doctor is not monitoring my bloodwork, saying it's not necessary...but my last one did every few months. Some of my rhuemy's have been surprised at my plaquenil success...others know it does work well for some.
 
Good luck to you. I know it's difficult to give up things you enjoy, I hope you can find a happy medium.
 


Nikiangel
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Date Joined Nov 2009
Total Posts : 29
   Posted 7/26/2010 3:42 PM (GMT -7)   
Hi weary.  Ok well I have been and still am on methotrexate.  I'm seriously debating if its even working for me at this point.  I'm flaring and in pain constantly.  Now where I can deal with pain, this pain is just not right....even for me.  Anyway, I dont blame you for wanting to have a couple every now and then.  Heck every weekend if ya want.  I dont drink, however, my vice is I smoke.  So my doc's like, well if you would quit smoking you would feel better and so would your JRA.  I looked him square in the face and said"I plan on quitting, however, right now in my life, with the pain I have and the emotions I have and the stupid people I deal with who think its sooo easy to quit......I'm not quitting right now.  So just load me with my Remicade and lets get to it".  He laughed hysterically, nodded he understood and walked away.  I think that if we have to deal with pain on a daily basis, and deal with non-understanding people, and deal with needles, then we should be allowed our 1 or 2 vices.
 
Sorry I couldnt help with your question, but had to write that I understand the rest.  Best of luck if ya switch.  ((( gentle hugs)))) 
Juvenille Rheumatoid Arthritis - diagnosed at age 2 am now 37
Currently on - Remicade, Methotrexate, Prednisone
 
"God gave you this because He knows you can handle it, dont stop fighting!" - Grammy
"God brought you to it, He will see you through it"
 


wearyRAsufferer
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Date Joined Mar 2010
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   Posted 7/26/2010 6:52 PM (GMT -7)   
Thanks my pals, even without knowing the answer to my question- you help by understanding how I feel. Niki you nailed it- right now in my life, with the pain I have and the emotions I have and the stupid people I deal with who think its sooo easy to quit......I'm not quitting right now. That's just how I feel. This is how I am dealing with RA right now. Except for I have to stop. I have researched every thing I can get my hands on and I can't find one thing that says it's OK to drink moderately on MTX. It's all a big NO NOTHING or an occasional drink. (which means on your birthday or a holiday- 1 stinking drink)
I mean I could keep having drinks on the weekend but who would I be kidding? I could only point the finger at myself if I ruin my liver.
I have to find an alternative to MTX.
Otherwise this is just one more thing RA has robbed me of. I hate RA.

sjkly
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Date Joined Dec 2007
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   Posted 7/27/2010 5:06 PM (GMT -7)   
Most of the other arthritis meds are usually used WITH methotrexate not instead of it. I take plaquenil and MTX.
The other DMARDS-there aren't many-are probably not what you are looking for.
How about one of the anti TNFs enbrel, humira etc.
Again they are usually used with MTX but you can use them without.

wearyRAsufferer
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Date Joined Mar 2010
Total Posts : 2327
   Posted 7/27/2010 7:07 PM (GMT -7)   
sjkly- my doctor suggested Humira alone but get this....I was using it in combo with MTX to try and get to better comfort level pain wise. The only difference I noticed were my hands felt better- not pain free but better. Since Humira has a lot of risks involved I opted to stop- it didn't seem like the benefit was out weighing the risk.
Now how could this doctor suggest that this would be an alternative to MTX for me?
I think I am just SOL.

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/27/2010 9:45 PM (GMT -7)   
I think Arava is in the same class as Methotrexate. I found out the hard way I can't take either....but plaquenil seems to help.....you might want to look in to that and if you can tolerate a drink or two on the weekends...it takes a while for it to kick in though, like 5-6 months before you realize you're doing much better than you were.
 
I know how frustrating this is for you (we all do).....giving up something or modifying your life because of something you can't control. It really stinks.
**
 


JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/28/2010 2:48 PM (GMT -7)   
My sister takes Leflunomide as she cannot tolerate MTX, and finds it _extremely_ effective, but often has an adverse effect on her white blood count, so that would be a reasonable alternative DMARD.

Re alcohol and MTX, I drink moderately (20-30 units per week) on it, just not (often) on the day of administration, and I find it effects me in a subtly different way, but over 12 months have never had less than perfect blood tests.

As far as I know, you do not have to ween of MTX, you can stop taking it immediately.

EDIT: Leflunomide = Arava, sorry I didn't know this at time of writing, I see it has already been mentioned!

Post Edited (JayBespoke) : 7/28/2010 3:57:30 PM (GMT-6)


wearyRAsufferer
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Date Joined Mar 2010
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   Posted 7/28/2010 6:45 PM (GMT -7)   
Jay- I am not sure what a "unit" is- can you elaborate? Is it the equivalent to a shot?
I too have been drinking for at least a year with perfect blood tests. However I have always been worried I am kidding myself that I will be fine because everything I read is so adamant about no alcohol with MTX and my doctor....well he flipped out. he seems to think that out of no where BOOM- cirrhosis.
Why don't they do a stinking study on this? I know there has to be a lot more people like us. The doctor always says- well we just don't know. We know MTX alone can cause cirrhosis so there is no safe amount of alcohol. Well how many people on MTX alone get cirrhosis? I never read about it. Maybe it's only dangerous if you are taking MTX in the doses that cancer patients have to take- ours are so minimal compared to that....
Yet if I risk it based on what ifs and my liver goes....I'd have no one to blame but myself and then I would feel guilty for letting my family down.

Thanks again to all who have responded- it feels good to get this off of my chest.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/29/2010 3:47 AM (GMT -7)   
Sorry, a unit is loosely 284ml of 4-5% Abv Beer (i.e. half a pint of Lager in England)

My doctors never warned me against alcohol, even on 25mg, the leaflet I was given merely states I should stick to the UK Government guidelines. (24 units per week, spread evenly).

I have been told that Rheumotologists aren't very up to speed on Liver toxicity etc, and it's very much a panic response to ban alcohol, and that the chances MTX will cause damage is small, but can be severe in exceptional cases. It's a risk I have been willing to take, and it seems to have paid off, although alcohol does make me feel markedly more woozy!

Providing you have regular tests (I do monthly) then I wouldn't worry, because you'll catch anything that goes wrong (hopefully) and be able to correct it. If I can't even have a drink, I'm not sure I'd bother getting out of bed in the morning!

James

wearyRAsufferer
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Date Joined Mar 2010
Total Posts : 2327
   Posted 7/29/2010 6:32 AM (GMT -7)   
I have noticed that the alcohol guidelines are more relaxed in the UK. Perhaps I should move LOL!
I do believe my RD is extra cautious because he has flat out told me he never had a drink until he was 30 and he doesn't care for it at all and does not even sip wine. We are clearly not on the same wave length in that regard. If you could have seen his face when I confessed to drinking on the weekends...I thought he would blow a gasket. I felt like he thought I was an alcoholic or something! It was totally embarrassing. But I'm with you-taking my social drinking away affects the life style I have always lived and it is very upsetting to me. My husband and all of our friends drink and not that they get fall down drunk but they are feeling good and to be the stone cold sober one in the group is a total drag. If I have to live like this I will have to divorce my husband and find a new set of friends because I feel very resentful and my husband has already told me he will not stop drinking just because I cannot.

ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 7/29/2010 9:27 AM (GMT -7)   

Hey, just stopped by from the Crohn's forum for arthritis help and saw this post.  Mtx (in combination with Humira and prednisone) was the ONLY thing that helped with my arthritis but the mtx raised my liver enzymes too high and I had to stop it.  And I never drank a drop.  The doctors may be overly cautious and yes, it is your choice whether or not to drink while on it, but they don't want to get sued for knowing that you were drinking and still allowing you to take it.  That would be gross negligence on their part for continuing to prescribe it when they know you are drinking while on it. 

We are now trying Plaquenil for me and it's been 4 months but I haven't seen any response so far.  I know I'm supposed to give it 6 months, but it's been a long 4 months and I still have 2 to go.  If this doesn't work, we are trying Leflunomide, but you aren't supposed to drink on that one either, if I remember correctly, as it can also do liver damage and you have to have labs every month while on it. 

IMHO, you have to decide if you'd rather have a few drinks and not have as many medication options or have more options and maybe find something that works, but have to give up the alcohol.  Each person will have a different answer to that, but it's something you will have to decide due to the nature of the medications and the guidelines that the doctors will continue to push (both for your sake and for their own).  I hope you find another option that will work and allow you to drink as well. 


Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 


JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/29/2010 3:43 PM (GMT -7)   
Ah Weary, it does appear that over at your side of the Pond MTX has a far greater propensity to cause liver damage, LOL. Must be something to do with... the earths magnetic field.

Seriously though, I'm treated at a world leading research centre, and was told to moderate my alcohol intake, but given no specific instructions beyond "not over 12 pints of beer a week", of course the Brits are naturally accustomed to copious amounts of alcohol so I guess they dare not deprive us.

It is a risk each person has to evaluate individually, being a 6'2" well-built male with no history of illness aside from RA, I thought if I drink alcohol I'm likely to get away with it - and so far, I have!

MELttdown
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/20/2010 2:42 AM (GMT -7)   
Hi, I'm new to all this (diagnosed with spondyloarthritis just under a month ago after years of pain) and am currently on MTX & prednisolone (plus folic acid), as well as inflammatories & painkillers.

I read with interest all the comments on this thread because, as you do when you're diagnosed with something like this, I've read more information than I probably should have (gotta love google) and almost everything I have read mentions a strict ban on drinking when taking MTX. HOWEVER, this was all new to me because my rheumy told me I couldn't drink any alcohol ... but only on day I take the MTX! Otherwise, no problem! Thank god because I, also, like to have a drink or two, especially with friends, and I'll be darned if this will make me a social outcast - it will not beat me! lol

I do remember seeing a comment, one little comment in a forum about 1000 google searches ago, where it was suggested that the "no alcohol" line from docs was purely to cover their butts (as Jay said).

(I'm in Australia, btw, so maybe you could think about a move downunder! lol)

wearyRAsufferer
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Date Joined Mar 2010
Total Posts : 2327
   Posted 8/20/2010 4:32 PM (GMT -7)   
Isn't it strange how in Australia & the UK this issue is no issue? Makes me have half a mind to have a couple of drinks this weekend. I haven't had a drop since my last RD appt. July 17th. When the weekends roll around I get depressed. A couple of drinks was kind of like a reward for getting through the grueling work week. Now what? I hate RA.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/20/2010 5:12 PM (GMT -7)   
Weary - I am on my 4th glass of Armagnac VSOP, MTX day was yesterday. Liver is working like a champ ;)

If we don't treat ourselves at least occasionally, then the pain will just take over...
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramide, and scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 8/20/2010 7:01 PM (GMT -7)   
Jay I thought you were a bad boy!
I didn't know what you were drinking so Wikipedia told me this:
Armagnac is the oldest brandy distilled in France, and in the past was consumed for its therapeutic benefits. In the 14th century, Prior Vital Du Four, a Cardinal, claimed it had 40 virtues.

"It makes disappear redness and burning of the eyes, and stops them from tearing; it cures hepatitis, sober consumption adhering. It cures gout, cankers, and fistula by ingestion; restores the paralysed member by massage; and heals wounds of the skin by application. It enlivens the spirit, partaken in moderation, recalls the past to memory, renders men joyous, preserves youth and retards senility. And when retained in the mouth, it loosens the tongue and emboldens the wit, if someone timid from time to time himself permits."

Sounds like it's good for you to me! Wonder if it would work on these canker sores better than salt water?????

MELttdown
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/21/2010 2:43 AM (GMT -7)   
Hey, Weary... glad you looked that up, because that drink was new to me also! lol Having myself a lovely Bundaberg Red (rum) right now...

wearyRAsufferer
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Date Joined Mar 2010
Total Posts : 2327
   Posted 8/21/2010 5:00 AM (GMT -7)   
I found a site where you can ask a pharmacist a question so I posed this question-

question: Is it really dangerous to drink alcohol while on methotrexate? My doctor won't allow it yet my methotrexate comes with all kinds of warning labels on it from the pharmacy but it does not have a label that says do not drink alcohol. I have had some antibiotics come with that warning- why not methotrexate if it's so deadly?

their answer was:

Thank you for submitting your question to Everyday Health.

Methotrexate affects cell growth and suppresses the immune system. Methotrexate is used in the treatment of cancer, psoriasis, and rheumatoid arthritis. Methotrexate can cause acute and chronic liver disease. Liver disease generally occurs after use for 2 years or more and a total dose of at least 1.5 grams. The chronic form of the disease is similar to what occurs in alcoholics and is potentially life-threatening. Methotrexate should not be used in any patient who has liver disease or who is an alcoholic. Drinking alcohol while taking methotrexate is not recommended because alcohol can increase the risk of liver disease.

When your doctor prescribes a new medication, be sure to discuss all your prescription and over-the-counter drugs, including dietary supplements, vitamins, botanicals, minerals, and herbals, as well as the foods you eat. Always keep a current list of the drugs and supplements you take and review it with your healthcare providers and your pharmacist. If possible, use one pharmacy for all your prescription medications and over-the-counter products. This allows your pharmacist to keep a complete record of all your prescription drugs and to advise you about drug interactions and side effects.

For more specific information, consult with your doctor or pharmacist for guidance based on your health status and current medications, particularly before taking any action.

Regards,
Michelle McDermott, RPh, PharmD


First of all I don't think she answered my question- it's the same old story.

I don't know guys....do you think we can get of a pre-liver waiting list LOL?

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/24/2010 6:03 AM (GMT -7)   
hahaha,

"Hi there, I'd like to add my name onto the Liver Transplant List ple.... what? .... oh no, my livers fine ......... you don't understand I'm intending on developing chronic liver failure in the next few months, and I always like to be prepared .... what do you mean I need to see a psychiatrist?!"

I would suggest that Dr Michelle McDermott considers going into politics, given the adept skill she presented you with in the art of question evasion. :)
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramine, and scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 8/24/2010 10:02 AM (GMT -7)   
Thank you! It is odd that it is the only warning label left of the bottle isn't it? I have labels that say it may make me dizzy, prone to infections, stay out of sunlight...
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