To take or not to take medication?

Hi, My name is Emily and I’m new to this!
I just wanted to know how everyone decided that they would start taking medication. I’ve been unwell for about 5-6 years, only recently diagnosed as I have started to get worse and have lots of swelling and arthitis type symptoms in my hands and wrists. I am worried about the fact that it could get worse but also worried about side effects of the medication my doctor wants to put me on, methotrexate. (I’ve plaquinal and presidione with no luck)
how did everyone make their decisions? and is anyone else on methotrexate!
Emily:)

Hello Emily,

Welcome to the group....i am surprised plaquenil and even prednisone as'nt helped you but not all meds suite all patients...have you been tested besides x-rayed to see what form of arthritis you may have with the Lupus.

There's quite a few members on methotrexate who will answer in due course...it's surposed to be an excellent drug and is similar to Dapsone i was once on but you do have to have regular bloods done to keep a check on your organs.

The couple of links below tell you about methotrexate.

http://www.rheumatology.org/practice/clinical/patients/medications/...

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html

Love Terri xxx

I’ve been taking methotrexate now for about a year now followed by leucovor ca 8 hours after I take methotrexate. So far only side affects I get is very drowsy the whole day. I take this medication once a week.

I was on plaquenil but the doctor couldn't get the dosage up high enough due to it impacting my liver. I have been on methotrexate for about 3 months and haven't had any bad side effects. I started out with 4 pills one day a week. I am now at 6 and expecting that to increase after my next appointment in mid January. I do remember that I was wiped out the day after my first dose, and pretty worn out for 2 additional days. Since then, I haven't really noticed a difference.

I have been on Plaquenil for several months. It helped about 25%. I have now been prescribed Prednisone, which I got filled at my pharmacy but have not taken it. I am struggling with the same thing you are. I am resisting taking the Prednisone, as I don't want to deal with the possible side effects. Like you, I am concerned about repercussions on my health if I don't take them, but I am also worried about possible side effects. I am just not a pill taker by nature anyhow. I am the type who would rather suffer until I can't take it anymore. Am I harming my health by avoiding the drugs? That is the million dollar question for me. Glad you brought this question up!

I am on methotrexate just recently ( about two months) . I made the decision to go on the methotrexate when the drugs that had been working for years just stopped and the quality of my life began a downward spiral I am still trying to stop and reverse. However everyone is different and it is a very personal decision I wish you luck in choosing what is just right for you. :)

Good after Merry Christmas to everyone...I do hope that everyone got what they wanted, which I know is difficult when most on this site wish for nothing more than for good health.

Anyway, I went through the same issues when put on a very high dose of Prednisone. I have stomach upset and my tongue is starting to hurt with sensitive bumps. That said, I started with my protein counts at 13.94 (REALLY high) and it has started to decrease. Whether or not it has to do wiht the Prednisone or some of the changes I have made to my diet it gives me a little more time before having to go the route of chemo or dialysis. I think it is important to talk to your doctor about these concerns. If your doctor is any good he will take your concerns into account. The list of side effects for Prednisone is longer than my arm, but after taking it for nearly 3 weeks, I notice some, but certainly not ALL of the side effects.

Best of luck and lots of hugs,

DeAnne

Wow, thank you everyone for your responses!
You don't understand how much it means to me to know there are people dealing with the same sh** I am! (excuse the french!)
It really is a hard choice, and it's very hard to know when the best time is to start, I'm only 21, and I haven't really had much of a life due to this silly Lupus thing ahah, and the methotrexate maybe able to start my new life. But at the same time it does worry me about the side effects and the fact it is such a strong medication. But like Jenniferforhealing said, am I effecting my health but waiting?
Ahhh it's such a hard decision, and still after talking to family, my boyfriend and doctors, I still don't know how to go about it! But I think at the end of the day, I take the medications, I may get side effects, or I don't take the medication, I'll be sick but I could get worse.

Best of luck to all of you and thank you all again,
Emily xx

Hey Emily,

I started taking plaquenil cause I was desperate for my health to be better. However, in saying this all drugs have it side effects and I am still currently taking the meds but taking in a healthy lifestyle to aid in my recovery. Hopefully my rhuemy and I are wanting me to take less of the meds in March. Your case sounds more servere then mine, in desperate times come desperate measures. If it gives you life take it. Sometimes you don't have time to way up the pros and cons, only after and thats okay. Take care and feel better soon and hope the meds wrk for u.

How long were you on plaquenil? My Rhumatologist says it could take 6 months to get full effect. I havve been on for 5 weeks now, My hair is starting to grow but more inportantly my mouth sores are gone. I have no swelling ( not yet anyway).

Freightliner

■■■■■■■■■■■■■■■■■■■■■■

Hi, I was on Plaquenil for about 4 months, but I had horrible nausea at the time, so stopped the plaquenil and the nausea went! I've heard it effects everyone differently. and it could be fine for some, and make other sick. So I was the unlucky one of course! I actually did feel a bit better from it, but the side effects were way too bad.

Good luck to you though! Hope it helps! It's always good to find that medication that helps you :)

freightliner said:

How long were you on plaquenil? My Rhumatologist says it could take 6 months to get full effect. I havve been on for 5 weeks now, My hair is starting to grow but more inportantly my mouth sores are gone. I have no swelling ( not yet anyway).

Freightliner

■■■■■■■■■■■■■■■■■■■■■■

I am desperate too! I think there is a point where you just wake up, and realise, something needs to be done, and soon!
I have about 2 months before I go back to my Rheumy so I still have a bitof thinking time, as my last appointment a month ago, I was so sure I did not want medication, I refused everything he said and just decided diet and fish oil tablets for my inflammation would be my saviour. It hasn't been long taking them, but I'm just not as confident as I was then about it working.

Also I really do want to start working again (had to quit my job, and now i'm studying very part time from home) I'm sick of being home all the time! Really hoping this medication could be my lifesaver so I can have a life and move forward.

Really hope the medication helps for you too Shamwow! And I do like how you said "Your case sounds more servere then mine" because what I have come to realise is that I don't think anyones case is more severe than the next persons. It effects everyone differently, physically and emotionally. I think everyone gets a bit lucky and unlucky at different times, but at the end of the day, I look at family and friends and think 'if you guys were in my situation, I don't think you could handle it'. we are unlucky, but at the same time, it was better us, than someone else who has a lot less, doesn't have our menatlity or doesn't have the support we all have at home and on here.

Sorry for my rant ahaha xxx

Shamwow said:

Hey Emily,

I started taking plaquenil cause I was desperate for my health to be better. However, in saying this all drugs have it side effects and I am still currently taking the meds but taking in a healthy lifestyle to aid in my recovery. Hopefully my rhuemy and I are wanting me to take less of the meds in March. Your case sounds more servere then mine, in desperate times come desperate measures. If it gives you life take it. Sometimes you don't have time to way up the pros and cons, only after and thats okay. Take care and feel better soon and hope the meds wrk for u.

I too struggled with the thought of medication. I went undiagnosed for about 9 years and only had the rash. I have since had blood work and a biopsy to confirm the lupus. I have been on meds for 2 years and I am currently on immuran which is slightly helping the rash but not the arthritis pain or fatigue. I too am wondering if it is worth the side effects since I went so long without medication. I do feel that my age has made a difference in the pain and fatigue but I am still wondering if I would feel better without the meds. Good Luck to you and I will be following the post to see what others think. Hugs and prayers for you!!

By the way I have a severe allergic reaction to plaquenil and some side effects to cellcept so I am on my third medication. They have trouble treating me because I was born without a spleen so my immune system is pretty run down to begin with.

I had the exactl same debate, i'm 22 and was very hesistant about being on any medication because of the long list of side effects. I know for me, it just got to the point where i would be too sore to get out of bed for work and i had to give in and let my rhuemy prescribe me medication (plaquenil and prednisolone)....i did compromise with my rhuemy though, he has allowed me to start on a low dose until i see him next (in february). As much as i hate to admit it, the rhuemy sometimes knows best and the side effects can suck, i've had a few with the prednisolone but they do pass with time and keeping active helps too. I'm so much more mobile now that i'm on medication, i don't swell up half as often as i used too.
Good luck to you Emily, keep talking to your family and friends about it, ultimately it is YOUR choice, not your rhuemys. You have to do what is best for you xx

Hello Emily,

When i first started plaquenil it drove me soft with the side affects i pulled off it and not long after went back on it....all meds feed off side affects but not everybody gets them.

Please start the medication as it's surposed to be a good drug and try to help your system, so your life can get back on a steady level again.

I'm so pleased so many members have helped and answered you straight away.

Love Terri xxx

Hi Emily,

Welcome aboard we are glad to have you. I don't like taking medication either I'm just not a pill popper, but to have good health I'll do what I have to do. I personally don't like methotrexate and the Plaquinal is working for me. I took methotrexate a long time ago when I didn't know I have Lupus and Sjourgen Syndrome, the doctor thought it was just my RA out of wack because my blood work should that's what I had. In June of this year my platelet count went down to 25 and it suppose to be up in the 200's I believe, but it landed me in the hospital for a while and Predisone was my key to getting well and it worked. Needless to say that's when I found out I have the other two disease. Having this problem is very difficult for us all staying in constant pain, but if you believe in God and prayer that's your key. Continue doing what the doctors say is best for you at least try it and go from there, but always put God first in everything you do because he give divine knowledge to these doctor to help us and that's all we have. I use to not take medication, but I had to get over that I don't like pain. Good luck to you hugs and kissess.

Carol Burley

Hi Carol,

Are you with our seperate site for sjogren's syndrome.

www.sjogrenssyndromesupport.org.

Terri :)

i was also recently diagnosed and i have been prescribed methotrexate and i was taking for like 2 months but then the stomache flu went rampid in my house so i stopped it because it does lower the immune system but im back on it now i didnt have any side effects with it. i just dont like that it lowers the immune system. i understand the concept but its kinda a lose lose situation to me because with a lowered immune system your body has a hard time fighting off anything that comes along. I'm already a germaphobe but the methotrexate only makes me buy more lysol and drive my house hold even more crazy. and when taking methotrexate you cant take any NSAIDS because it can cause liver problems which also sucks for me because i have toothaches on a regular and sometimes tylenol doesnt even take the edge off. lol my mom tells me to take more but i read the back of the bottle too often she says and i wont take more then recomended or more often then im supposed to. i've never like taking medicine not even if it was a liquid because of all the damage they can do. but thats me reading ALL the warnings and side effects that COULD happen. But they dont always happen to everyone. its just trial and error with this disease.



Tez_20 said:

Hi Carol,

Are you with our seperate site for sjogren's syndrome.

www.sjogrenssyndromesupport.org.

Terri :) Yes I'm on there.