Methotrexate

[Angel_Baby]

I have been on Methtrexate for 2 months now and haven't noticed ANY change. In fact I am just getting worse.
The Metho makes me extremly sick everytime I take it. I feel like I have the Flu even though it only lasts 1 day. Could being Anemic effect the way Metho interacts with your body?
I honestly dread the day I have to take it...

Should I tell my rheumy about it on my next visit?

[Lily]

((((((((Tabitha))))))))))) style_emoticons/<#EMO_DIR#>/hugbetter.gif

Do you have another appointment scheduled soon with the Rheumy? If not then I would ring and explain all this, they are used to phone calls about this sort of problem. Did the Rheumy give you folic acid to take whilst you are on Methotrexate? It can deplete folate levels and people on the drug have to supplement, as far as I know they dont take it the same day they have the Metho though. Also are you having blood counts and liver counts done whilst on this med? Were you anemic prior to taking it? All these things are relevant.

If you are on oral Methotrexate, some have reported far fewer problems with the injectable type, something to discuss also. Ones who got sick on oral were much better off on injectable from memory.

Sending hugs, I hope you can sort this very soon, but do ring, dont hesitate.

love
Lily

[pauline1946]

Angel it does me the same way, i take folic acid, and a vitimin
every day.
you do need to tell your dr, about this. mine told me
it was saving my life so i guess it's worth it.

Do not stop taking it with out the dr. telling you it's ok.

I did, and boy did I ever get my hinnie chewed out, I
can't tell you what he said because i don't remember
it shocked me so bad. he was really upset, so don't do it.

hug's, and best wishes for you.

style_emoticons/<#EMO_DIR#>/hugbetter.gif

[raggedyann1]

Angel,

What dose of methotrexate are you taking? In the beginning I had to go up to 20mg and after a year settled back to 15mg per day. Perhaps your dose isn;t high enough. There are other options including going to the injectable methotrexate instead of the pill form. Imuran is often tried next and arava is another option.
Your doctor might even add one of those meds to the methotrexate instead of replacing the metho with them.
Make sure you let your doctor know of the side effects and that you aren't seeing any difference.

Let us know how you get on.

Take care,
Karen

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Angel, just wanted to let you know that I was on Metho
also. I did ok for about 6 mo.'s or so, then get worse each day
until I finally got so sick that my Rheumy had to change my med.
Sometimes, half of the fault is ours, cuz we don't tell the dr. right
away when a problem arrises. But the dr.'s need to take the
other half of the blame, they also should ask us questions, and they
could answer their phone messages each day too.
Tell your dr. a.s.a.p.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[Sally-Jane]

style_emoticons/<#EMO_DIR#>/foryou.gif
Hi there,
I have been on Metho for 7 years and steadily, over that time, have had to increase.
I could not take it in tablet form, after a while, and now inject once aweek in the top of my thigh which is proving to cause little, or no reaction.
Because my Lupus is brain related I have been relieved of my fits, although flares will come occassionially and be fairly flooring.
As there is no cure at the moment it will always be a hit and miss afair but keeping in contact with your doctor to report problems should always be your first port of call.

When I was on the tablets I always took them on a full stomach and I found that ginger really helped the nausia.

I hope things improve for you soon.

Sally X style_emoticons/<#EMO_DIR#>/wub.gif

[momto3]

Hi,

I used to get very sick on the day that I had to take my Methatrexate. I would take it after work and literally climb into bed. I felt sick and had very bad nausea and found it difficult to sleep.

I told my rheumy, he suggested that I try breaking it up into two doses,within 24 hour period. You can ask about this. This helped, but didn't stop it.

What finally worked was for me to take it right before bedtime, so I sleep through all of it now. I also make sure I drink plenty of water.

The other thing I discovered, is that I was taking a bunch of vitamins, including iron that was contributing to it.

Lastly, I did feel less nausea when my rheumy increased the dosage.

Hope this helps.

[Angel_Baby]

thanks for all your replies! I am gonna let my rheumy know about this Wednesday... as long as my hubby doesn't make me cancel this appt also.

I don't take folic acid... I am hoping my rheumy can get this fixed or even switch meds. Just something would help!

I am always anemic it seems. They want me to take Iron but I refuse to due to the constipation. Laxatives and I do NOT mix well at all.

[happybluelupine]

I was on Methotrexiate....like you....it didn't seem to help. I got so run down and stressed. As a result, I had shingles all over my left arm which left scars. If you get shingles run to the doctor and catch it early so you want scar. I finally went to a Lupus Specialist at UNC-Chapel HIll. He took me off methotrexiate. I know each case is different. He didn't know why I was put on Metho. So he prescribed huge doses of Prednisone 40 mg. which took two years to taper myself off of and 400 mg. of plaquenil.. Now I just take the plaquenil. Hope you can get your medications so you can have a good life.
Things do level out. Always think positive.
Happybluelupine

[flowergarden]

Angel Baby, I've been on metho. for about ayear now. I've found that I don't get sick on the injectible form. The others are right, though. Folic acid is important, and it helps keep the nausea down.

I haven't noticed any difference except that my hair has become very curly. Haven't decided if it's worth it just for that:lol:

[raggedyann1]

Angel Baby,

The folic acid helps reduce the side effects from taking the methotrexate. It is also a good vitamin for women in their childbearing years. The prescription folic acid is a higher dose than what is available in the vitamin section.

Let us know what your doctor says.

Take care,
Karen

[Angel_Baby]

Well I wasn't able to go to my rheumy once again.... Hubby made me cancel my appt AGAIN! He is sooooo selfish!!!! And to top everything off they couldn't get me back in till October 9th!!!!!
I thought since I was on Metho they needed to check my liver... that is going 6 months without seeing me about anything!

I am in alot of pain right now, Metho doesn't seem to be helping and surprisingly the Pred isn't doing much either! Might need to increase the Pred.... but how would I know if I can't see my rheumy!?!?

[zara]

Tabitha, I don't understand. How can your husband keep making you cancel appointments?

[Angel_Baby]

by not driving with me to the appt. I am terrified of driving in St. Louis by myself

[zara]

Quit counting on him for anything. Like you've said, he is very selfish and harmful too you. It's time to start making plans with him out of the picture since obviously he can't be trusted. It's not like these appointments aren't made well in advance.

And when I say he can't be trusted, that is more ways than one. Just because someone says they want to be a good person, it doesn't mean they are.

[hazel595]

Hi Tabitha
You have only been on methotrexate for 2 months that is only eight weeks....what dosage are you on.

My rheumy started me on 2½mg for the first week and by the third week I was on 7½mg which I stayed on for a couple of months. The dose was altered when I was still having symptoms and it was only when I started on 20mgs, a year after I first started taking it, that I started to feel much better.

They have to start you on a low dose because it reduces the activity of the immune system so therefore is used with care.

I have been on methotrexate for 3 years now and believe me I wouldn't be the same person I am now without it. When I went on it I still had to use my wheelchair and when not using the chair had to use sticks.

It can take 3 to 12 weeks before you start to notice any improvement but you do need to be taking Folic Acid at least 5mg per day except the day you take the methotrexate. Folic acid replenishes your folate and definetly helps reduce the side effects, in my case anyway, if you are not taking it please ask your doctor to prescribe it for you.

There are some horrible side effect that go with methotrexate and not every one is able to cope with this cytoxic drug. Some patients have sickness, diarrhoea, mouth ulcers, hair loss and skin rashes........I had the same symptoms before taking methotrexate so I just took it to wait and see if it would help.........IT DID HELP.

Methotrexate can also effect the blood cells so for the first month you should of been having weekly blood checks, after that if the doctor says the blood tests are ok you ccan then have monthly checks. These checks are really important and I know you have a 5 month old baby so it can't be easy going to the hospital every week. The blood tests are important though.

I wouldn't wait till your next visit to your rheumy, I would telephone your rheumies secretary and ask to see your rheumie as soon as they can fit you in.

I was surprised to read that your hubby made you cancel your last rheumie appointment....was that because you were too ill to go???

With you being anemic you should be seeing your rheumie and not missing any apointments if you can help it especially as you feel that the metho is making you feel worse.

Lily is right in saying that some patients react better to the injectable methotrexate but if you can take the oral it is better.

Hope things go better for you and good luck at your next appointment.

hugs xxxxxxx hazel

[red24]

I was on Metotrexate for a little over a year and so many things happen while on it I almost died.

I ended up getting so tired all the time I slept more then 18 hours everyday and could hardly function. My lungs were filled with bacteria I got bad infection from it. My blood work was out of sight. I was at deaths door step when my family and hubby which broke down and cried begging me to get to the hospital. It was when I seen my hubby break down with tears I thought to myself I must really be sick. I called my doc and just hearing me on the phone told me to get to the hospital right now. So I insisted on packing a few things and put on new underpants. ( I always have new underpants set a side in case of an emerengy like this) I got to the hospital and the doc ran so many test it was unbeliveable. The results were not good. All my blood work was clouded, lungs were filled with fluid, my cortisol level was not even registering, and so on.

I'm in the severe stages of Lupus and RA but have decided I will take my chances with the Lupus and just went on my Remicade infusions again. The pain from the RA out weighs the Lupus so I will just chance it with the Lupus. The Methotrexate has scared me so bad I refuse to take hardly anything for it.

Just wanted everyone to know what I went thru with that med.. I would be interested to know if any others have had problems like I have had while on Metotrexate. I look foward to your replies.

Have a wonderful and pain free day if possible,
Deanna:)

(Edited by Clare.T 31/07/06 )

[Clare.T]

I am sorry to hear you aren't having any luck with the methotrexate and shocked by your husband's controlling behaviour which could be very seriously harming your health assuming this wasn't a one off with a good reason. Perhaps he simply doesn't realise this ?

Or is he always like this in all aspects of your life together. Another issue I reckon.

Good doctors will explain possible side effects of a med and will say what sort of testing for possible side effects should be done. We ought also as a matter of routine always check out any new meds for ourselves- even the best doctors can make mistakes from time to time and they don't oftenhave time to outline the full list of possible side effects.

In addition all side effects should be reported to a doctor as soon as possible with some being more urgent than others.

Apart from the risk of serious damage there is no point continuing to take a medicine that is causing unpleasant side effects even if they aren't medically very serious. Medicines are supposed to make life easier.
If we don't report side effects nobody else will do it for us until things are very bad indeed ( not even then sometimes) and that's only the side effects that we are aware of

For Methotrexate, these are example guidelines taken from a useful list of what needs to be done for each of the rheumatic disease modifying medicines.



http://www.msr.org.my/html/national_guidelines-drug_monitoring_for_antirheumatic_drugs.pdf

Baseline

CBC; urea; electrolytes including creatinine, Liver function; Hep B surface Ag and HepC virus antibodies;chest X ray

Patients should be monitored as follows : CBC, including differential white cell count, every two weeks until six weeks after last dose increase and provided it is stabele, and every 4-8 weeks after that; renal profile every 4-8 weeks; liver function every 4-8 weeks.

One of the possible side effects of Methotrexate is possible lung problems . That's why lung X rays should be taken and why patient health history can be important in choosing metho over another drug.

Folic acid or folate supplements are so universally recommended that I would be concerned if my doctor didn't mention taking it to help ward off possible side effects.
Methotrexate depletes folic acid. Too much is bad too so the dosage has to be recommended. It isn't taken about the time of taking the methotrexate. Prescribing practices differ whether you don't take it the day you take the metho or not 24 hrs either side, and how - every day with the above exceptions seems more common but I have read of people taking it once a week
I can't remember what the usual weekly dose is.

One thing is sure that we react very differently to meds. If you ask 50 people for personal experience you might get 50 differing answers. Of course you can get a good idea assuming that those who answer are representative of all those taking it, but at the end of the day you can only know if it's right for you by trying it.

Take good care of yourself Tabitha and I will arrange a good zap of my Clare.T Tazer (C) for that hubby of yours if you like ! :)

Clare

[raggedyann1]

Tabitha,

I would imagine the doctors office can call in a lab request so that you can get your bloodwork done. You can also ask to be put on the cancellation list. Your city will have some sort of bus/van service that picks you up at your door and takes you to your doctors office and brings you back again. Or see if you have a friend that can take you at the last minute if you get a cancellation.

It seems to me that your husband does not understand the severity of the disease and the importance of being seen regularly by your doctor. It may take a higher dose of methotrexate to make a difference in your symptoms that is how it was for me.

Could you take a taxi? that might wake your husband up a bit.

Let us know how you get on.

Take care,
Karen

[Angel_Baby]

Thanks Clare for all the info on Metho! My hubby has been a good boy this week so maybe you can tazer him next week! :wink2:

Karen,
I am on 10mg of Metho a week so maybe that isn't enough...? Is that the usual amount they put people on?

A taxi??? considering I live a hour away from my rheumy I would have to win the lotto first! :)

Thanks everyone for your expreience with Metho :)

[hazel595]

Hi Tabitha

If you are still having lupus symptoms whilst taking the 10mg of metho then your rheumie will put it up eventually but you haven't been on it that long so maybe your rhemie is waiting to see what happens.

I am on 20mg but that was after I had a flare whilst on 10mg and they kept putting it up by 2½mg every time I had a flare and last September I had another flare when they put me on the 20 and I have been OK (touch wood) since then and have also been able to drop my prednisolone down as well. I have been on it for 3 years now and know that the metho, folic, pred and the warfarin are the only thing keeping me well so don't go giving up on the metho just yet honey.

Hope you are feeling better and that your husband keeps 'behaving himself' or Clare will get him with that tazer lol.

xxxxxx hazel