My Rheumy doctor has narrowed it down for me to 2 DMARDS......Plaquenil and Metho and he is leaning more towards the Metho......
Can anyone give me tips, past experiances, current experiances, advice, or any information to share on either DMARDS? Thanks I have been doing research but would love to hear from folks first hand rather than medical lingo. I am nervouse about being on DMARDS but my RA has gotten really bad.
Hope to hear from anyone:)

Hi there - and welcome :)

I was going to reply to your post on the Methotrexate subject - but saw that you had started a new thread - so I'll answer here.

The methotrexate made me nauseous (sp?) only the first time I took it. The label says to take it two hours before a meal - on an empty stomach. When I told my DR about the nausea/stomach ache - he told me to try taking it with milk and/or some crackers. The milk is supposed to stop the nausea.

I have taken it with milk ever since then, and had no stomach problems. BUT - each of us are different. And, sometimes -if you THINK a med is going to affect you a certain way - it will.

My DR wants me to stay on the Meth, at the low dose I am on -for as long as it is working. He said that if/when the dose I am on is no longer stopping the pain in my joints - then he would like to try adding Plaquenil, instead of upping my dose of methotrexate. He said that the meds work very well together.

I don't think - personally - that it makes a difference which of the two he starts you on - as long as you get started on something soon. The sooner you get on a DMARD (one that you can tolerate) the better you will feel.

I just had my 4th liver panel bloodwork done today, and everything is fine. Nothing is too high, nor too low - all of the numbers are right where they need to be.

You are the only one who can make a medication decision for you - I would take the advice of my doctor. If what he prescribes you doesn't help you, but makes you sicker - then ask him to switch you to something else.
Remember - any time you start a new med, you can experience short-term side effects until your body gets used to it.
I talked to my dr a lot about my fears of methotrexate. He gave me a lot of literature, plus suggested I research it on the web first. He said that I would more than likely find horror stories that would make me NOT want to be on it - but that it helped a whole lot more people than it hurt.

I hope this helped. Please write back and let us know how things are going for you.

HUGS :angel:

Ultimately it's your decision but when I was diagnosed with RA I looked my Rheumy in the eye and asked her what she would do if she was diagnosed with this. At that point I did what she suggested. I started the MTX fearing the worst and have had only stomache upset with it but found taking a snack with it helps some. I started taking it during the day but found that impossible to deal with so started taking it 1-2 hours before bedtime. That way I slept through most of the nausea and feel fairly good in the morning.

Thanks for the replies. The Rh. doc said after reading the results of a real definitive blood test that I have the aggressive type of RA. So he started me on Pred until the Metho can kick in. He also has me on Biaxtra....let's just say I am in tough shape. Last night was one of the worst nights I have had.....
So tomorrow we will see how it goes, otherwise he said maybe try injections of the metho if it hurts my stomach. I am trying to think of it in a positive manner and all the great things these drugs can do. Not just focus in on the bad things....I have to be able to function.
It is nice to hear postive, honest replies. Thank you all and I hope you guys are doing well too:)

I understand your concern. I am on Plaquenil and Prednisone, but am not being stabilized by this combination. I am in a huge flare now. This weekend I am starting Methotrexate. I certainly hope it works. Just can't stand much more of this.

Mere --

Plaquenil vs Methotrexate....Be sure to know the potential side affects and what monitoring needs to take place. I thought I was told that with Plaquenil you need to monitor your eyes more carefully.... With both drugs you would need regular blood tests to monitor various blood counts as well as liver function. I know that I have to watch my white count (it tends to drop when I am on my higher dose of Mtx).

The nausea.... Mtx is also a chemo drug... (Yes, I usually feel nauseated for a day or so after I take my once a week dose (either by tablets or injection). My Rheumy claims that there is an ingredient in cough syrup that actually conteracts that queezy feeling. I just don't feel like taking one more drug... so I deal with it since the Mtx has truly helped keep things under control. I take Mtx with Arava- Mtx is often cocktailed with another drug. The Mtx can help the body from building up a tolerance to the 2nd drug, making ineffective after while.

The other annoying problem with Mtx can be extreme fatique.... I take my shot or tablets at night....that way I don't notice some of those symptoms as much. Also plan to take the drug on a day where perhaps it's okay to take it ease if you are more tired the following day (like perhaps a Friday night).

The Mtx did not help very much alone, hence we added another drug... and if the Arava (for me) hits a plateau my rheumy says he would combine the Mtx with enbrel or remicade.

Mtx is not a painkiller- it's a DMARD ( a drug modifying drug). The hope is to shut down or control our overactive immune systems that we are dealing with when you have an autoimmune disease. I hardly take anything for pain since doing DMARDs...

Make sure you report any supplements you are taking- especially things like Vitamin E, ecanascia (sp?), ... things that actually improve/increase immune function are not good for people with autoimmune diseases. The hope with Mtx or any other DMARD is to get the disease under control so you can stop or slow down the rate at which damage is occurring. My biggest regret with DMARDs is that I didn't start sooner. Good Luck

Plaquenil vs Methotrexate....Be sure to know the potential side affects and what monitoring needs to take place. I thought I was told that with Plaquenil you need to monitor your eyes more carefully.... With both drugs you would need regular blood tests to monitor various blood counts as well as liver function. I know that I have to watch my white count (it tends to drop when I am on my higher dose of Mtx).

The nausea.... Mtx is also a chemo drug... (Yes, I usually feel nauseated for a day or so after I take my once a week dose (either by tablets or injection). My Rheumy claims that there is an ingredient in cough syrup that actually conteracts that queezy feeling. I just don't feel like taking one more drug... so I deal with it since the Mtx has truly helped keep things under control. I take Mtx with Arava- Mtx is often cocktailed with another drug. The Mtx can help the body from building up a tolerance to the 2nd drug, making ineffective after while.

The other annoying problem with Mtx can be extreme fatique.... I take my shot or tablets at night....that way I don't notice some of those symptoms as much. Also plan to take the drug on a day where perhaps it's okay to take it ease if you are more tired the following day (like perhaps a Friday night).

The Mtx did not help very much alone, hence we added another drug... and if the Arava (for me) hits a plateau my rheumy says he would combine the Mtx with enbrel or remicade.

Mtx is not a painkiller- it's a DMARD ( a drug modifying drug). The hope is to shut down or control our overactive immune systems that we are dealing with when you have an autoimmune disease. I hardly take anything for pain since doing DMARDs...

Make sure you report any supplements you are taking- especially things like Vitamin E, ecanascia (sp?), ... things that actually improve/increase immune function are not good for people with autoimmune diseases. The hope with Mtx or any other DMARD is to get the disease under control so you can stop or slow down the rate at which damage is occurring. My biggest regret with DMARDs is that I didn't start sooner. Good Luck
Could you please tell me how you know this? I am taking a lot of supplements for immune system and I have PA, my Dr. recommended I take them. What do the supplements do to people with autoimmune diseases? Thanks!

Staceynb:

Thank you for your most informative and candid post on Methotrexate. I have had my eyes tested by an opthamologist for Plaquenil side effects and my Rheum. will take blood every six weeks for Mtx therapy. I am happy with him, he seems to be on the ball. Also very thorough, ruled out everything before coming to the diagnosis.

He has prescribed Folic Acid to take 24-48 hours after the Mtx. 5 tablets two times per week. Do you do the same?

You mentioned cough syrup as helping nausea. Perhaps it is dextromethorophan?

Mere --

mere, sorry that it looked as if I posted that info, but I was just quoting strbay because I had a question for her at the end of my post. If you direct your question to her, she will answer you. Thanks!

Thanks stacynb for correcting my mis-address.

strbay, Please read post to Stacynb.

Hope everyone has a happy and healthy weekend.

Mere --

Wow thanks for all the responses....in great detail and with lots of information. This board really helps. I have my hopes up that the Methotroxate will work by itself but I am trying to prepare myself that I too may need another medication to work along with it. As for right now I am taking Predisone to help until that can kick in. I am not to happy about it. But I was barely able to move so we had to do something so I could function since it takes awhile for the Metho to kick in. The doc started me on a low dosage of the Pred since I am so scared of gaining weight (I am heavily into fitness but as of lately haven't been able to due to the RA). It seemed to help right away but I am noticing today the pain starting to creep back up.!!! Now I am scared he will bump my Pred amount up.

I have been taking vitamins to help boost my immune system and folic acid by recomendation of my doctor too Stacynb. I have also been doing a lot of reading and none of the books I have found have said not to, if anything they give suggestions of a few to take.

Hi,

This is my first time at this forum. I was diagnosed with RA in April. I am taking plaquenil and methotrexate. The methotrexate has been working for a month or so. But, the side effects seem to be getting worse. I have headaches every day, and nausea from time to time, am tired all the time. Was considering going off of it. Afraid not to take it though. I am 39 y/o, and have a five year old with Mosaic Down Syndrome, and a 2 and 1/2 y/o. I really have to be able to keep moving. Anybody have experience with plaquenil? Am wondering if I stop one of the meds if I might have more energy or less side effects.

Missyd

Missy,

Try talking to your doctor hon - see if he can take you off one of those meds, or at least lower your dosages - and see if that helps at all.
Are you taking folic acid (for the meth side effects) and multi vitamins? do you eat something like crackers or drink milk when taking the meds?

I was tired ALL of the time before starting methotrexate - it was a side effect of the RA. It took about a month for me to start feeling less tired on the meth, and the vitamins helped a lot (also taking iron). I have been on the meth for a few months now, and still occassionally get nauseated (a little) on the day I take it, but not as much as when I first started taking it.

check with your dr and see what they suggest - be totally honest with them. please post back and let us know how you are doing.

hugs,

mary anne

Hi Missy,
I can only kind of relate to you in a few ways. I too have a child (he is 7) and I am a single mom who was just diagnosed in July. So you have to have all the energy in the world and be in a good mood for your childern and for yourself too! I don't know if this will help but I get headaches a lot too. So far I haven't noticed the metho making them worse or better. As for the fatigue....mine is pretty bad. But, I don't know if it is the RA or the meds. I have only been on the meds for almost 3 weeks.

If I were you like Ladywolfe said I would tell your doctor what is going on and your concerns. Maybe it is the meds or just the RA or being a mom with two childern or......a mixture of all three of them together.

Take care and I would make a doc apt soon! I know it is hard but eating well and trying to get as much sleep (as you can--I know it is hard with little ones:))Maybe he/she will have some suggestions...

Take care:)

My experience with Methotrexate was bad. I took it once a week and followed the doctor's instructions. I now need a liver transplant. It damaged my liver and I am going to have to have a transplant. Read all that you can about this medication. It may help some people - then there are people like me. Make a wise choice on the medicine you take. Learn all that you can about it first.

Whoa I just read your response Kerlin! I am sorry to hear about your liver. How do they know that it was the Metho? And I didn't know that it would happen that fast--I mean to your liver....one week?! How many pills of Metho did he start you on?

Kerlin I am very sorry to hear about your reaction with the Metho. Sadly it is one of the potential side effects or risks of the medication. The same also holds true of the new COx inhibitors and steriods.
I do agree that research it thoroughly before making a decision that could potentially change your life. Sadly not many people do take time to do just that.

Best of luck to you I do hope everything works out for you regarding your live. It must be so very difficult to deal with, I feel very bad for you.

I have been taking meth since last Feb starting out at about 10 mg per week and now I am up to 20 mg and also taking Bextra. I have had no side effects from either drug.

i was on the pred. mtx and plaqunil all at same time none of it worked for me except lost alot of hair and weight gain that was my expeience but everyone is different im starting celebrex now

Lately I have noticed I feel very jittery shortly after I take my prednisone. Now, I don't know if it is that or not. I just feel very anxious and jittery......and sorta like I got go do something gotta go right now...sorta feeling. Sorry I am feeling it now and it makes it hard to concentrate. Is this normal? Should I tell my doctor about this? Does anyone else feel this way after taking a steriod type of drug? I just feel so jittery and sorta hyped up. Almost like I had 5 redbulls or something....and I drink no caffenine, don't smoke, or anything. It just started this past week and each day gets worse.

Then it is followed by a headache. Since I take the pred in the morning with breakfast and in the evening with dinner I feel like I have a headache all day.

I drink anywhere to 100-150 oz of water a day to try to help too.

yes i did feel the same way u may want to tell your doctor i told my doctor i couldnt take it anymore i really didnt like the idea of taking steriods i gained alot of weight when i took it everyone id different though so talking to your doctor would be good and see what they think hope u feel better

Hi Kerlin,

How long were you on methotrexate? I've only been on it for 1 month and the only side effects that I've encountered so far is slight dizziness and minor lip sore that goes away after a day after the medication. I take milk thistle once a day. Supposedly it prevents or helps regenerate a damage liver from different pills that one might take. I also take folic acid. Hopefully I'm on the right tract.

Hello Daze,

With pregnancy of my second daughter, I gained like 40lbs. and I was slightly heavy to begin with prior to that. After I gave birth, I went down from 165 to149lbs. When I started the prednisone, I thought,"Lord, am I going to weight more than 149lbs?". But actually I lost 28lbs. and it's partly from RA, but I think it's mostly from drinking green tea. I've been drinking green tea for the last 2 months with ginseng. I drink the canned Arizona brand too, but mostly I drink the tea bag type and add a packet of ginseng per 8oz. I drink green tea about 16oz. 3x/day. It's known to help with cancer and some website even mentions rheumatoid arthritis because of its antioxidant.

thank u i will have to try green tea i gained a good 40 lbs

Thanks Dazed....I am going to tell my doctor. And I am so excited because I am getting a second opinion (I like my doctor just want to make sure we are on the right track!!) and they must have had a cancelation because I am going to be seen Friday morning. Two doctors in one day what fun. THis may sound terrible and I have been having a lot more pain today so maybe I am just insane but I cut my pred in half tonight. That is orginally how I started on it but I can't take the other feeling....If the pred was taking away all the pain then maybe...but it only helps at time and I don't know maybe I am just wanting to see if it is helping more than I think it is. So until I see my doctors I am just going to take half of my pred doses.

So far I haven't gained any weight. But my doctor knows that is a huge fear I have so he knows I am weary of being on pred because I hear of all the people gaining weight.

The Green tea sounds like a good idea I will try that. I have been drinking chia tea but that doesn't seem to make a difference.

Take care everyone....

i hope everything works out and i am also going to try the green tea for i have 40 lbs to lose now and i have been dieting and nothing has worked yet keep me posted on how u are doing

Hi there -

Personally, I have done very well on the Plaquenil. I have been on that and Celebrex for over 2 years - I did so well that they cut my dosages in half. It's hard to say which one you should start on. They both have their potential side effects... I know Plaquenil is the most mild of the DMARDs out there. MTX scared me, so I tried the Plaq first. It did take about 3 months to kick in though. MTX is used by sooo many people with great results. If your Dr. is giving you a choice, maybe go with the lesser - Plaquenil - and see how it goes.

Hope this helps!!!

Thanks for the response HelloKitty, but I picked Metho...it was the one my Rhuemy doc suggested. So far no bad side effects. A bit queasy on the day I take it. Had my blood taken yesterday to see how that is going since it has been 5 weeks on it.

But if I don't start seeing more results we might add another drug to it:( I am nervous about that...so don't want to think about it since it is a month away and we all know what a month can do....or not do.

Thanks for your response.

I'm a nurse working with pediatric RA patients. I've given Methotrexate to children for many years. It is often given with Folic Acid (a vitamin) to counteract its nausea side effects.

I find that most folks are terrified when they read the literature about the drug, because the literature refers to chemotherapeutic doses. In the case of autoimmune diseases, the doses are usually much lower.

My patients sometimes get nausea, rarely vomiting, and only one case of mouth sores in 15 years.

You are very right that reading the side effects are very scary. But when I was researching all the drugs...all of them sound scary........

My doctor just uped my folic acid amount even more to help with hair loss and the nausea. So far no mouth sore problems at all for me. I really have no complaints on the Metho so far!! Now just waiting for it to work.......:)

It looks like these messages are over a month old, but I'll add this just the same. I was diagnosed with RA in 1989. My doctor started me on Methotrexate, Prednisone, Plaquenil, iron 3 times a day and originally tylenol 3 was part of the RX, over the years and with different doctors. the tylenol was first to go about 12 years ago. and iron was replaced with folic acid. I haven't had any ulcers yet. thank goodness. When I was told I would be able to walk normally and lift my hand it was more important to take the drugs than not.. MY LAST doctor added Remicade to the list and suggested I switch to a self injected Embrel.. I don't think I'll take the last one.. Sometimes I have almost forgotten I have RA.. damp weather always reminds me. All medications have pluses and minuses, you just have to decide which are more comfortable to live with. I am personally waiting for Rhuematoid Arthritis to leave me as suddenly as it arrived. I know that is a dream of mine.

Hi I take MTX injections. I took pills for 14 mos and injections for 2mths. I was on Plaquenil. Both helped a great deal. I was the rare one who had eye problems on Plaquenil and have to see a eye specialist tomorrow. I cannot imagine getting of MTX.
Good luck
Cindy

Cindy, can you give more detail on your eye problems? I am suppose to start plaquenil and metho in nov. I was told to do alot of research on these meds and then we will start them. I already have eye problems with my vision changing more often than usual, so i am alittle concerned about the plaquenil. So any info i would appreciate it.. Thanks Pam

I was diagnosed in May and started on Plaquenil at that time. I changed rheumatologists in July and he promptly added MTX to the plaquenil. He has switched me to the MTX injections because of never-ending tummy problems. But neither drug is controlling the RA. It is severe enough that it has begun affecting my bone marrow/red blood cell production and my white count is right on up there. We are giving it 4 more weeks and then I am starting Arava. I won't be sad to discontinue the MTX. I feel worse now than I did before I started it.

Bummer about the Metho not working...let's hope in the next 4 weeks it does!

Cindy how did you eye apt go?

I was diagnosed in May and started on Plaquenil at that time. I changed rheumatologists in July and he promptly added MTX to the plaquenil. He has switched me to the MTX injections because of never-ending tummy problems. But neither drug is controlling the RA. It is severe enough that it has begun affecting my bone marrow/red blood cell production and my white count is right on up there. We are giving it 4 more weeks and then I am starting Arava. I won't be sad to discontinue the MTX. I feel worse now than I did before I started it.


Hi!

Do you take just medications or do you take supplements and vitamins, too?

I started on prednisone in early July then MTX was added one month after. I didn't start feeling better until the end of August. I was taking multi-vitamins and joint supplements for 2 mos. before I started taking the medications, and still take them now with my Dr's approval. I always take my meds and suppls. with meals. So far, the bloodwork for my liver is coming out fine (I really believe it's because of the milk thistle I'm taking), and I don't have any stomach problem or any other side effects (knock on wood)...well, except for hairloss and a mild sorethroat on the MTX day. Though, since taking folic acid, the hairloss and the sorethroat is minimized. Right now, I'm almost off the prednisone(easing it to 2.5mg every other day). Trying to wean off prednisone (started 2 weeks ago)I went through some major pains on the right hip, knees, and down to my foot but I stuck through it. Finally, today I'm feeling much better. I'm on 5pills for MTX per week. Hopefully I'll ease out on that too.

Some people seems to be doing ok and some aren't with certain medications. I wonder if there's underlying factors behind it--vitamins or supplements taken with it, taken with or without food, home and/or work stress. Or...is it that different people just react differently?