View Full Version : methrotrexate
bozzly
09-15-2005, 10:44 AM
Hi all, I am new to this board and its nice to know others are in the same boat as me!
Just a quick question...First of all, sorry if this has been discused before but as I'm new to this it will take a while to read all the past posts!
After 8 years of taking Diclofenac pills for my PA, the pain all over my body has been getting worse, the doc has suggested I try Methotrexate.( have I spelt it right ? ) I have been reading up on this on the net and a bit worried about the side effects etc.
Could some of you pass on your experiences with methotrexate? Also as I'm now 45 years old, how long would I be able to take this for?
Maybe there is another treatment I could discuss with my doc.
Thanks all in advance and its great to know this forum is here !!!
MikeK
09-15-2005, 11:20 AM
Hi Bozzly,
Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear that you're going through such a rough time. Fortunately, you've come to a very special place. A lot of nice and helpful people who post here. More important, it's great to FINALLY be able to ask questions, vent, exchange info, and maybe even share some laughs with people who truly understand.
A lot of people who post here use methotrexate (you'll often see it abbreviated as MTX). I'm sure that they'll come along and share their experiences with you. The good news is that it can be a very effective treatment for both psoriasis and psoriatic arthritis. The bad news is that it's not with some potential side effects and you're right, some of it's potential side effects are very, very scary.
You asked:Maybe there is another treatment I could discuss with my doc.There are a number of treatments that you can discuss with your doctor. You might want to consider one of the newer biologic medications. These medications include Enbrel, Humira, and Remicade. All of these medications have been approved in the last couple of years. They're all VERY expensive, so some insurance companies require that you try MTX before they'll even consider letting you take one of these meds. (Assistance programs are available to help with the costs of these meds and the NPF has an insurance advocacy service that will try to help you with any insurance issue that may arise.) The biologic medications are fairly new so their long term risks are not yet known. They seem to be safe. MTX has been around for a long time, so most doctors know what to look for in terms of side effects, etc. (You'll need to undergo frequent bloodwork.) MTX comes in two forms: oral (you'll take one or more pills) or injectable (you'll have to give yourself a shot). Enbrel is given by self injection. (Again, you'll have to give yourself a shot.) Enbrel is usually taken twice a week. Humira is also given by self injection. It's usually taken twice a week. Remicade is given by infusion. Each infusion takes a couple of hours. You'll have to go to a doctor's office every couple of weeks to get your infusion. Here's a link to recent post about Humira and Remicade. It will link you to some additional discussions and information about both medications: http://www.psoriasis.org/forum/showthread.php?p=194499&highlight=Humira#post194499. Here's a link to a previous discusson about Enbrel: http://www.psoriasis.org/forum/showthread.php?t=8140[/url]. You can find some additional information about this medication at either www.enbrel.com or http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/enb1159.shtml.
Finally, here's a link to the National Psoriasis Foundations discussions of the various treatments for Psoriatic Arthritis: http://www.psoriasis.org/treatment/psa/.
I hope this helps.
Good luck. I hope that you'll feel better soon. Keep us posted. Let us know if you have any other questions and please don't be a stranger.
Mike
bozzly
09-15-2005, 12:58 PM
Mike, thanks very much for your reply and the links. I will take time to read through them.
I have put up with this PA gradually getting worse over the years and the Diclofenac (which is anti imflamatory and a painkiller ) doesn't do its job as it once did. If I cant beat this then I want to be as pain free as possible!
Its just that reading about all the side effects of different treatments worries me.
As you say, some medicines are expensive but ( luckily ? ) I live in the UK and at the moment I get free medication.
I look forward to others use of MTX and other treatments
patti2957
09-15-2005, 02:47 PM
Hi:
Mike K did such a great job. Have you had x-rays of your joints to see if any deterioration has occurred? If not, you're in luck. The dmard mtx is designed to ease the symptoms, but more importantly, to preserve your joints. There are several fairly recent posts that talk about side effects, mainly fatigue, that can accompany mtx. I know because I joined in late August and asked many of them :)
Good luck!
Patti
Hi. It's my first time to this site. I live in Edmonton, AB, CA.
I hope this will be helpful. I was on methotrexate for a couple years straight. The derm just told me to take a break and try something else. I went for blood tests every few weeks, and the derm told me that I tolerated the mtx very well. I did not drink alcohol at all. On days that I rec'd an injection, I avoided fatty foods; for some reason, they made me ill on med days. And I drank lots of fluids. I would often be tired and sometimes feel a little ill, but when I started working out, I never again got tired or ill on the days I rec'd shots. It definitely controlled the p. I am glad to be trying something new next month because I've been off the mtx for only a month now, and the cooties are coming back! I was also afraid of metho, but I was more afraid of p. Make sure you do not drink alcohol and keep up with blood tests.
I cannot tolerate PUVA anymore because now I am permanently coated with freckles/age spots from several years of that treatment, although it worked.
Good luck.
RichJ
09-15-2005, 06:27 PM
hi sana and bozzly,
welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you
have a good night all
richard
RichJ
09-17-2005, 12:36 PM
your welcome sana
have a good day all
richard
kaynorth
09-18-2005, 02:28 AM
Hi
I have been on MTX and diclofenac for about 18 months and have not had any side affects at the dose I am on (7.5 mg a week tablets). I take folic acid once a week, two days before taking the MTX to help with any sickness etc.
I have been fine and apart from a little morning and evening stiffness I am able to do almost everthing. I am 37 and have two young children.
I do have the occasional beverage but only if it is a few days away from the day I take my tablets. I have my blood checked every 6 weeks and see my rheumy every 6 months.
All drugs have their risks but if takig sensible and have the checks done you will be fine. Its not like we really have an option !!!!!!!!
Love Kay
patti2957
09-18-2005, 08:36 AM
I've seen where people take mtx in very different doses; Kay, you said that 7.5 mg. works for you. I'm and my rheumatologist prescribed 15 mg. and I'm still stiff and sore and have mountains of fatigue! I wonder if I took less if I would get the same benefit and not feel so darn tired all the time.
Bozzly - what dosage have you been prescribed? Have you had a chance to see how you feel after taking it? I know it takes a while to work - my doc said 2 - 3 months before you'll "even out." I'm still waiting?
thanks and hope to hear back soon!
patti
docmks
09-18-2005, 12:47 PM
I've seen where people take mtx in very different doses; Kay, you said that 7.5 mg. works for you. I'm and my rheumatologist prescribed 15 mg. and I'm still stiff and sore and have mountains of fatigue! I wonder if I took less if I would get the same benefit and not feel so darn tired all the time.!
patti
Hi all, I am not particularly encouraged right now. I take 10.0 mg of MTX per week. It is still making me extremely fatigued, even though my docs had hoped that this symptom would improve. I also am taking a medication that is suppose to help with fatigue (Provigil), though I've only been taking this a week. I also take Enbrel (50 mg injections/1 injection 2x weekly). I have seen definate improvement in my skin...my hands have not flared since summer with P or PA) however, my feet and neck are as bad as ever with PA, and I have bad stiffness, still in my lower back and hips.
MK
bozzly
09-19-2005, 10:32 AM
well I saw my rheumy today and instead of giving mtx a go he prescribed 'sulfasalazine' these are orange in colour and about 3/4 inch long. Each tablet is 500mg.
I have to take one a day for two weeks then 2 a day after that to see how I feel. Up to four can be taken if needed.
Just wondered if anyone has ever tried 'sulfasalazine' if so how did you get on with them?
patti2957
09-19-2005, 10:46 AM
I found some info on that drug, which I'd never heard of. I wonder why your doc prescribed that instead of mtx? It's very puzzling.
After nearly six months of dead-head fatigue on mtx, my dermatologis, whom I saw today for the first time since my pa dx, said I'm a prime candidate for Enbrel. She said she loves it. I will look around the boards as a lot of folks have discussed it.
I'd be interested to know what if any side effects the sulfa causes; please let us know
patti
http://www.psoriasis.org/treatment/psa/dmards.php
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682204.html
bozzly
09-19-2005, 12:38 PM
Thanks for the links patti. I'm not sure why he has tried me on this but I'll give it a go and see what happens.
gimazz
09-20-2005, 11:35 AM
I am also new to this site but have gotten some good info from here. It's really the most effective way to get different opinions about the same thing. I know most things you hear about MTX is positive but I am going to give you an honest opinon. I was on it twice for 6 months both times. The 2nd time I was on it I developed a croppy cough and it would not go away. My rhmy had a chest x-ray done which came back abnormal. We then did a ct scan which also came back abnormal. My lymph nodes in my chest are enlarged which is a symptom of lymphoma. To have a biopsy is a very invasive surgery so I have chosen not to unless I begin to show signs of being ill. After doing some research I come to find out altho very rare there have been cases of MTX being linked to the cause of lymphoma. I now have to have CT scans twice a year to stay on top of it and watch the changes. I know it is very rare but my advise to you would be to suggest a CT scan before you go on it, this way if you get ill and you then have to have one they will have a normal one to compare. The problem I face right now is that what if my lymphnodes are just enlarged and that is normal for me. The cancer Dr. says they are abnormally large but since I am not showing any signs of being ill I might just stay at this stage but it doesn't mean it won't be cancer in the future. The frustration is where is this info from the dr. before he puts you on the drug................sorry for negative stuff but best you hear both sides before taking any drug of this type. They will not let me take any of the new drugs eighter in fear it will do the same thing. Good luck to you and hope whatever drug you decide to take will help you improve.
gina
gimazz
09-20-2005, 11:38 AM
well I saw my rheumy today and instead of giving mtx a go he prescribed 'sulfasalazine' these are orange in colour and about 3/4 inch long. Each tablet is 500mg.
I have to take one a day for two weeks then 2 a day after that to see how I feel. Up to four can be taken if needed.
Just wondered if anyone has ever tried 'sulfasalazine' if so how did you get on with them?
I was sulfasazasine for a bit but was taken off since I broke out in hives. It took 3 weeks but them I woke up covered and my Rhmy just happened to call me that day and I told him and he took me right off. Oh well, another one bites the dust........
gina
raydon14yp
09-20-2005, 01:11 PM
I have been on 15mg MTX per Wk. for about 18 years & Enbrel for about 5 years. My 2 MDs both have said that MTX is not considered nearly as dangerous to use as originally thought. It was originally used to treat leukemia, but in much larger doses & usually by IV. I have blood checked every 3 months.
hi raydon14yp
i too am on mtx. i just posted on another thread 'failing mtx'. you have been on mtx for a very long time. do you have any alcohol during these times. i miss having a glass of wine with dinner, and my derm says it is a huge no no. just thought i would see if you were aware of anything different.
patti2957
09-20-2005, 05:02 PM
When my rheumatologist dx the PA and put me on mtx she said that in extremely rare cases, mtx could contribute to lymph node issues. So sorry to hear; how long have you been ill and what type of PA do you have? P too? I hope you've gotten other opinions and have a good support system. Good luck and keep us posted
patti
My rhmy had a chest x-ray done which came back abnormal. We then did a ct scan which also came back abnormal. My lymph nodes in my chest are enlarged which is a symptom of lymphoma. To have a biopsy is a very invasive surgery so I have chosen not to unless I begin to show signs of being ill. After doing some research I come to find out altho very rare there have been cases of MTX being linked to the cause of lymphoma. I now have to have CT scans twice a year to stay on top of it and watch the changes..........sorry for negative stuff but best you hear both sides before taking any drug of this type. They will not let me take any of the new drugs eighter in fear it will do the same thing. Good luck to you and hope whatever drug you decide to take will help you improve.
gina
ttiben
09-21-2005, 06:13 AM
hi raydon14yp
i too am on mtx. i just posted on another thread 'failing mtx'. you have been on mtx for a very long time. do you have any alcohol during these times. i miss having a glass of wine with dinner, and my derm says it is a huge no no. just thought i would see if you were aware of anything different.
That is precisely why I didn't want MTX, I have a nice collection of wines and taste for fine european beers. I am not a big drinker at all, in a month I may drink one or two bottles of wine(not alone of course!!lol) and maybe 6 or 12 beers in a month, more like 6 than 12. But if life didn't suck enough w/ PA to take away one of the only simple pleasures I have would have really hurt. So we chose Enbrel and I have not been dissapointed at all. other than getting the dosages right.
My Rhumey said on mtx I would be allowed one beer every two weeks, thats just wrong!!
My Rhumey said on mtx I would be allowed one beer every two weeks, thats just wrong!!
LOL. I couldn't agree more. Fine wine and European beer, you are my kind of people. Enbrel is not covered in my province as a drug for p, only for arthritis. We can buy it over the counter, but the cost would be about $16,000 for the year. As soon as it becomes approved and offered under coverage, I will make the switch.
vmars
09-21-2005, 09:16 PM
Bozzly the diclofenac will only help the inflammation and pain, it will not control the pa. My experience with mtx has been very positive. I avoided it at first just like you, for about a year, because diclofenac controlled the pain I was able to go about life. My pa however was just as bad, it took about 6 months after I started mtx to realize what a difference it was making. I started at 10 mg and have gradually increased under my rheumy's direction to 25 mg. 22.5 mg seemed to be working great but it was suggested I increase to 25 so that I could decrease my diclofenac from 2 a day to 1 and possibly 0. Just make sure to get your bloodwork done each month.
best of luck to you
bozzly
09-22-2005, 12:14 PM
Thanks for that vmars. I will let you know how I get on.
gina, sorry to hear about you experiences. How much were you on?
raydon14yp
09-22-2005, 01:41 PM
How old is your MD? I have a modest amount of alcohol nearly every day. My MD does not say to stop. He is very knowledgeable about the drugs that p patients use. I would guess your MD is either very young or very old.
jdgarwood
09-22-2005, 03:52 PM
How old is your MD? I have a modest amount of alcohol nearly every day. My MD does not say to stop. He is very knowledgeable about the drugs that p patients use. I would guess your MD is either very young or very old.
Same here..I was on 15mg of MTX for about 6 months, and always had a beer or 2 with dinner. Blood tests always came back fine. My rheumy told me that "off the record", he was sure that I wouldn't have a problem with this. The MTX didn't do much of anything for me, and I just started Enbrel yesterday...50mg/weekly. Hoping for the best!
Joel
gimazz
09-24-2005, 08:24 AM
When my rheumatologist dx the PA and put me on mtx she said that in extremely rare cases, mtx could contribute to lymph node issues. So sorry to hear; how long have you been ill and what type of PA do you have? P too? I hope you've gotten other opinions and have a good support system. Good luck and keep us posted
patti
I didn't even know there were different types oa PA, so I coudn't tell you what I have. what are the types?? I was dx 6 yrs ago with PA and have been off MTX for 2.5 yrs. eml me if you can. Thx
gimazz
09-24-2005, 08:31 AM
Thanks for that vmars. I will let you know how I get on.
gina, sorry to hear about you experiences. How much were you on?
I took 7 tablets a week that were 2.5 mg each.
I even said to the cancer dr this last visit "so MTX at high does cures cancer but at low doses can cause it??" he smiled and said yes..............
How old is your MD? I have a modest amount of alcohol nearly every day. My MD does not say to stop. He is very knowledgeable about the drugs that p patients use. I would guess your MD is either very young or very old.
Interesting! My md is young, but smart, awarded several scholarships. He is very up-to-date on p and all the drugs, tried and trial.
I can recall when I was about 23 having to go on mtx for a month or two. At that time, my derm was older, very well-respected, and also told me no alcohol. I wonder if they take the age of the patient into consideration. Probably not. I'm almost 40 now and certainly deserving of a little slack. I think I will have a glass once a month and see what happens.
Thanks.
gimazz
09-26-2005, 06:50 AM
Thanks for that vmars. I will let you know how I get on.
gina, sorry to hear about you experiences. How much were you on?
I was on 17.5 mg per week
vBulletin® v3.7.3, Copyright ©2000-2009, Jelsoft Enterprises Ltd.