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Nonna
02-16-2011, 05:05 PM
Well, the rheumy and I had a talk today. It seems the plaquenil needs some assistance so that I can stay off prednizone. so I now am going to start taking Methotrexate.

Any and all advice is greatfully welcome. I'm not sure how to approach this and have a few days before I start.

nonna

tgal
02-16-2011, 06:22 PM
Oh Nonna I am sorry. Hopefully this will do the trick though and make you feel like a new woman! Please let us know how it goes!

red246
02-16-2011, 08:48 PM
Nonna,

Terribly sorry sweetie! Are you going to be taking the pills or doing the injections? Everyone that I've talked to on here that does the injections swears that they have less side effects from it than w/the pills. I really wish I could handle doing that, but I can't. For me, the first week wasn't too bad, then week 2 through about 4 I had extreme fatigue, aches/pains/nausea, etc then it kinda subsides - of course anytime there is an increase in the dosage it repeats. Hope it goes good for you! ((Hugs))

magistramarla
02-17-2011, 10:54 AM
Hi Nonna,
Yes, welcome to M Days! Everyone is different, but I found the pill form to be impossible. My stomach just rejected them. The injections bypass the digestive system and work much better for me. The shots aren't bad. My hubby doesn't mind doing it for me. Since it's best to inject into fatty tissue, and I sit on my fattest part, he gives me a shot in the butt every week.

As to the day, as you've read on the M Day thread, we're all different on that, too. I tend to be nauseous for about 16 - 18 hours after my injection. I take it around 8 pm on Sunday evening, then relax with some tea and dark chocolate. The MTX gives me a metallic taste in my mouth, and the chocolate helps with that. With this timing, I sleep through the worst of the nausea. The next morning, I usually still feel a bit queasy, so I make a bowl of Cream 'O Wheat or hot rice. I eat lightly at lunch, and then feel normal by 2 or 3 in the afternoon.

Make sure that your doc keeps a check on your liver function. Debbie has a thread about that, and she had to stop taking it because of it.
Good luck to you with it. After you get used to it, it really isn't so bad. The extra energy that I have later in the week makes it worthwhile.
Hugs,
Marla

Nonna
02-19-2011, 06:16 PM
Just took the pills, wish me luck

red246
02-19-2011, 07:58 PM
Best of lucky & (((hugs)))!! :)

BonusMom
02-19-2011, 11:24 PM
I hope it works well for you. Please let us know how you get along.

Nonna
02-19-2011, 11:42 PM
It's 1:30AM my time, I'm having one of my usual awake periods. Very dizzy, slight nausea, but the could be because I only had soup abd crackers for dinner. I'm the nausea queen 90% of my life has been nauseous. Marla's suggestion of the chocolate has helped. Everytime I awake up I've eaten a piece and the sugar had helped. I know everyone's different so I just have to see what the morning holds.

Hugs to all

magistramarla
02-19-2011, 11:48 PM
Thinking of you, Nonna.........
Hugs,
Marla

Nonna
02-20-2011, 05:12 AM
not very nauseated, but dizzy!!!!!! I seem to be surviving; not as bad as I expected. But the day isn't over yet.

Nonna
02-20-2011, 06:14 AM
Not to be nosey but what dosage does everyone take, I wonder if mine is very low???
I'm taking 8 pills of 2.5 mg

red246
02-20-2011, 12:18 PM
That's what they started you out at? My doctor started me out at 3 pills of 2.5mg. I think even last year I only got up to 6 pills. Then again, my doctor is ultra conservative when it comes to meds. (((HUGS))) How are you doing this morning?

Nonna
02-20-2011, 12:58 PM
That's why I asked, I was only slightly dizzy and any nausea I had e
was because I eat very light last night. Maybe that's the trick. Eat light before you take it but also hydrate as my daughter would say. This morning I could have done my normal routine, except I prepared to be sick

Go Figure!
Maybe it's just me

red246
02-20-2011, 03:13 PM
I hope that it stays that way for you. For me the 2nd weekend was worse than the first, hopefully you won't have that problem.

Nonna
02-20-2011, 06:20 PM
Thanks,
i do also, here's to a pain free day for everyone.

tgal
02-20-2011, 06:22 PM
Hope it is going ok Nonna! Thinking about you

Nonna
02-21-2011, 01:55 AM
Well, M day is over and it aasn't nearly as bad as I thought it would be. I may be unique; but I am me........

I see the rheumy on Mar 18th to have my levels checked. I think I'll post next weekend's experience as one istead of a running commentary. If we post our experiences with this drug, someone who is told tostart taking it will know what to expect and that we all react differently.

Good thoughts to all, until next weekend's M day
Toni

Nonna
02-21-2011, 12:37 PM
Ooops, thought I was done; but just ate lunch and now i have an unhappy tummy.

Blah!

Bonita
02-21-2011, 01:11 PM
Nonna i have been on methotrexate for 73 weeks and the last 25 are injections i give my self they do sometimes make me nauseated and dizzy but so does the pred and the plaquinel but they make me have better days hope it works for you. bonita

magistramarla
02-21-2011, 07:50 PM
Nonna,
I take .5 ml by injection. It's the lowest dose, and what my Texas rheumy called a "starter dose". My current rheumy has never changed the dose.
Here's another hint for you. MTX saps the folate from your body - that's why your doc should have you taking folic acid as a supplement.
I've found myself craving folates since I've been taking it. I was never a big salad eater - but now I LOVE salad.
I've found that if I eat LOTS of salad before my injection, my tummy hurts less.
Hugs,
Marla

Nonna
02-22-2011, 02:14 AM
Good suggestion Marla, she did give me the supplement. But I'll add salad to the menu also. Have trouble with it due to IBS. But I live with it because I like salad

hugs and thanks
Toni

mountaindreamer
02-22-2011, 05:25 PM
hi nonna,

so sorry that i have not been around to help you through this frightening addition to your treatment. sounds like your body handled the pill without any problems...hooray for that. I take 1 ml injection which is the equivalent of 25 mg of the pill. your dr. is starting you out on the max dosage....which is what i my dr. did too. Be sure and take the folic acid. different drs. seem to prescribe different doses, but my dr. has me taking 25 mg of folic acid each day (i take 5 pills each at 5 mg.).

I also can't eat salads because my tummy seriously rejects the raw veggies....i also have not been able to drink water since starting mtx....yes, i have not had a glass of water in over 2 years....makes me gag to even think about drinking water. i think it is because of the metallic taste that the mtx causes. I eat bland on the day of my shot, and the day after...seems to keep the discomforts at a minimum.

hope you are feeling ok.

Nonna
03-05-2011, 02:20 AM
Good Morning, am feeling better; so it's back to taking methotrexate. It's M day tonight so I'll let you all know how it goes. Wish me luck!

tgal
03-05-2011, 05:48 AM
Good luck Nonna! I will send out good thoughts for you!

GoodDog
03-05-2011, 01:59 PM
Good luck, Nonna. I hope you get all the benefits of the mtx and none of the negatives.

magistramarla
03-05-2011, 09:00 PM
Hi Nonna,
Thinking of you on your M day and hoping that you are still doing well with it. You are very lucky that you seem to tolerate the pills so easily.
Hugs,
Marla

porchy
03-06-2011, 01:17 AM
Good luck!!! xoxo

Nonna
03-06-2011, 04:55 AM
Good Morning all,
I'm still tolerating the pills well, have the dizziness and no nausea. But the IBS is starting to let go so I'm staying put this am. Hopefully next weekend I'll be able to go sing.

magistramarla
03-06-2011, 10:05 PM
Hi Nonna,
I just had my shot an hour ago. I had a great day today - did laundry, a load of dishes, ran errands and cooked a nice steak dinner.
Now I'm curled up with my laptop, tea and chocolate. I'll have a quiet day tomorrow.
On Tuesday, I'm going out with my gourmet group to Flannigan's Bar & Grill for an Irish dinner.
I refuse to let it get me down for more than a day!!
Hugs,
Marla

Nonna
03-07-2011, 03:09 AM
Good for you Marla. I'm so proud of myself. Yesterday afternoon, I was able to make homemade pasta. I broke it down into small steps and it worked out well. My only problem was....... The kitchen table it tooooo low for my machine and my back is now sore from bending over...... I had my granddaughter finish that part. She was happy to do so as it got her out of doing dishes.

As to the Methotrexate I seem to be an exception to the common effects. I have energy, I just have to make sure I don't over do. Now all I have to do is to resolve some Parkinsons issues and I can get back to really living. Atleast for now

steve.b
03-10-2011, 01:51 AM
i am in australia. it is common to use plaquenil daily and methotrexate weekly. folic acid helps, (dont take it on m day). maxolon tablets help stop the upset stomach.

Nonna
03-10-2011, 04:04 AM
Thanks Steve and welcome to the site. Is Pinjarra near Perth, I know there are several members in Western Australia, even if that seems to cover half the country. I take prevacid daily for stomach acid. My brain fog makes me jump around a lot. I'm adjusting to methotrexate easier than most and am completely off prednezone now.
Today's pain feels like a stiff neck and normal muscle ache. I actually made itthrough yesterday without a rush of fatigue until seven pm. Amazing!!!

Thanks again and welcome
nonna

steve.b
03-10-2011, 06:27 AM
yes pinjarra is about 50 miles south of perth. travel to perth for most major medical appointments. i actually use methoblastin, instead of methotrexate. almost the same thing but less side effects. my rheumatologist is very good. he is up to date, as his sister has lupus. he suggests methoblastin and folic acid. ask around, it may help.

tgal
03-10-2011, 07:36 AM
Hi Steve! Welcome to WHL. Thanks for the valuable information and I look forward to getting to know you!

Nonna
03-14-2011, 06:18 PM
Well I started to post this this morning and my wifi cut out. so I gave up. Yesterday went well, Next sunday I 've got a ride to church and I'm going to sing. My only problem last night my leg muscles started spasming. it was then that I realized that brain fog and totally set in and I'd forgot every single dose of meds. so I took the night time dose and went tobed. However the spasms would not let me sleep. I took another muscle relaxers and zonked out....... This am I was pathetic. but here I am........ Whoop whoop made it through Monday..... choir practice and work......

hugs to all

Nonna
03-18-2011, 01:33 PM
Saw the Rheumy and she dropped my dosage down to 6 pills, said it would help with the fatigue. Still feeling good 99% painfree except when I get overtired.

steve.b
03-19-2011, 12:40 AM
any drop in meds is good.
thanks for the update.

magistramarla
03-19-2011, 09:30 PM
Toni,
I am so happy for you that the MTX is working so well, and with so few side effects - I'm jealous.
Hugs,
Marla

Nonna
03-20-2011, 05:12 AM
thanks all, I feel normal this morning, no dizziness no nausea. Whoop Whoop as my granddaughter would type. I may not be as painfree, but it's a good tradeoff with the fatigue. Whoop Whoop I'm a happy camper. I feel like I'm alive again. I wish you all could find the right balance of meds.

I realize I'm luckier than most. and after about 50 years of the pain, I'm so grateful. I'm so .............

toni

LupusLady
08-08-2011, 11:12 AM
Hello everyone! I am new to this site-I found it last week when I started methotrexate+folic acid. I am taking the pills: 6x2.5mg, weekly of course. I also take 200mg plaquenil 2x daily, and soma and lortab as needed. I was just curious if anyone else has experienced stomach pain with the MTX. My stomach pain started within an hour of taking the pills last Wednesday(my M day) and last night the pain was so severe I was in bed asleep by 7:30pm. I am awaiting a call from the dr. about this. Hope yal are having a good day.

steve.b
08-08-2011, 10:09 PM
hello lupus lady.
glad you found us.
welcome to our cyber family.
we has friends from all over the world here.

LupusLady
08-09-2011, 12:25 PM
Thank you for welcoming me. Before I even joined this site, I felt like a part of it. Someone described this site like sitting by a warm fireplace, all cozy. That is the exact way I feel just reading about all of yal's experiences with lupus and all of the differnt meds that go with it. It sure does feel like a family here!
I have read several times here, that you aren't supposed to take the folic acid on the same day as MTX-does anyone know why this is? My rhuemy just told me to take one everyday, he didn't say not to take it on the same day as the metho. Just wondering! My M day is tomorrow! I started out with 4x 2.5 last week, tomorrow will be 5x2.5, and next week 6x2.5, and every week thereafter.
Hope everyone is doing well.
I want to say thankyou to everyone who has posted here, for the last few years. Yal's conversation with each other is inspirational and uplifting. I'm glad I found this wonderful place! It has made me feel a lot more comfortable taking this chemo-med.

steve.b
08-09-2011, 07:50 PM
the two drugs effect each other.
the methotrexate is compramised by the reaction.