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KINISUE's Photo KINISUE Posts: 1,147
8/17/12 8:48 P

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I have Norco and it is a strong Vicodin. There are days I am good without it but sometimes it is the only way I get through. I am really praying that the days without it start getting more and more frequently with the RA meds.

To keep spiritually fit, consult the Great Physician.


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4-1HEALTHYCYNDI's Photo 4-1HEALTHYCYNDI Posts: 11,230
8/17/12 7:20 P

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I take Celebrex, which is more of an anti-inflammatory than pain medicine, but it does help alleviate some of the pain. Because I take the Celebrex (which is in the same family of drug as aspirin & Advil) I don't take any other pain med. If it gets really bad my rheum will give me some Vicodin but I don't like taking it as I can't sleep for 13 + hours after taking it.

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KINISUE's Photo KINISUE Posts: 1,147
8/16/12 7:29 P

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Thank you Tiny. I think I will increase the Biotin. I have noticed a big difference in the flairs today. I am hoping that is because of the methotrexate. But I am not sure if that is capable of helping this fast. I just took my first dose on Tuesday morning.

To keep spiritually fit, consult the Great Physician.


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TINYBUBBA1's Photo TINYBUBBA1 SparkPoints: (50,068)
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8/16/12 5:15 P

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Kinisue,

The only pain med I take is aspirin. I don't think pain meds are good for us, so I just stick with a few aspirin - only when I can't stand it any longer.

I take 5,000 mcg of Biotin twice daily (10,000 mcg daily).

Wishing you well!
Tiny

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KINISUE's Photo KINISUE Posts: 1,147
8/16/12 2:16 P

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thank you Kim and Tiny. My rhuematologist said that Norco is not a pain med that is used for RA treatment. But he didn't say what I could use. I am still having enough flairs to need something. My Norco was prescribed by my regular doctor. Unfortunately, I only get a 30 pill supply so if I have to take every 6 hours I need a refill in 7 days so this is getting expensive. What pain med do you all take?

Tiny I am a big believeer in Biotin. It has helped the overall health of my hair for a few years now. What dosage do you take?

Thank you again for all the tips. I have learned more off of this site than anyplace else.

To keep spiritually fit, consult the Great Physician.


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APOSTOLIC84's Photo APOSTOLIC84 SparkPoints: (3,246)
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8/15/12 10:03 P

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hi,
i work with my primary for pain managment and my rheumatologist for other things that seems to work becuase i can see the primary sooner and keep up if i start flaring or something, it gets caught sooner, for the metho, i take 25mg im injection weekly and drink lots of water 12 cups the day of injection day after and decrease down to 8 cups and then increase again, also i take 3 mg of folic and vit b12 also that seems to help , don't be afraid to ask for pain meds to get thru the day it helps get you moving which helps with the pain and stiffness, i had to switch rheumatologists , primary and ortho docs to finally get it right for my healthcare team . it does get better, your pain may never go to zero but a nice 3 is a good day for me , those are the days you will appreciate best wishes
kim

Kim W.


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TINYBUBBA1's Photo TINYBUBBA1 SparkPoints: (50,068)
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8/15/12 2:53 P

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Kinisue - I wish you every success with your Methotrexate treatment. Please consider taking the supplement Biotin. This will help or maybe even prevent hair loss. It certainly can't hurt. You should be able to find it online or at your favorite health food store - minimal cost.

Best wishes!
Tiny emoticon

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KINISUE's Photo KINISUE Posts: 1,147
8/15/12 2:55 A

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Thank you so much for starting this thread JILLBRYA. My doctor prescribed Metotrexate yesterday. I too my first dose today, 4 - 2.5 ml tabs. So far no nausea or dizziness. emoticon

I pray that I do no get the hairloss. I have had that happen so much in the past with other health issues.

This is the first time I have taken anything for the RA other than Prednizone. I hope I have as much success that most of you have had. Today I woke up with a flare in the back of my neck. For the last few days it has been in my hands and the right TMJ. Love to all I am off to bed.

To keep spiritually fit, consult the Great Physician.


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SUNSHINEBLUE77's Photo SUNSHINEBLUE77 Posts: 119
8/13/12 10:50 A

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Hi Jill!
Sorry I didn't see this until now...I haven't been on SP in a long time.
Yes, my rheum would not put me on methotrexate because of my asthma. Instead she put me on the leflunomide which supposedly does the same things as mtx but is safe for asthmatics. I have no idea really lol.
I hope you are doing better =0)

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JILLBRYA's Photo JILLBRYA Posts: 106
8/6/12 7:24 P

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Thank you very much for the reply. I am very grateful for everyone's help and input!

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JILLBRYA's Photo JILLBRYA Posts: 106
8/6/12 7:23 P

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Okay I noticed you said you cant take metho because of your asthma. Are you talking about the methotrexate? I have asthma also and read in weak lungs it can cause breathing issues and that is one of my main concerns.

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MOMENTARYBLISS's Photo MOMENTARYBLISS Posts: 8
8/5/12 11:01 A

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-

Edited by: MOMENTARYBLISS at: 6/28/2013 (04:30)
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TINYBUBBA1's Photo TINYBUBBA1 SparkPoints: (50,068)
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7/29/12 7:34 P

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Hey Sunshine!

Good for you! I'm happy your meds are ok for right now. We just have to try one - and then the other - don't we?

I hope things will go along nicely for you. I'll keep you in mind & heart!

Tiny emoticon

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SUNSHINEBLUE77's Photo SUNSHINEBLUE77 Posts: 119
7/29/12 6:27 P

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Hi! I know EXACTLY how you feel. I was petrified to take my meds. Long story short my rheum isn't even sold that I have RA...right now the diagnosis is seronegative RA ...I have the signs but a normal RA factor and abnormal ANA. anyway I started on prednisone and humira but couldn't stop flaring. The dr added leflunomide which is a methotrexate class drug. I can't take metho bc I have asthma. It took me two weeks of having the pills in my home before I took it. I would cry constantly about the possible side effects, especially the 'bathroom' ones. I work in healthcare and am with patient's for 45 mins at a time. I can now say that I finally bit the bullet and after almost 3 months the side effects have been tolerable. My stomach does get messed up and I have lost a little hair but the daily pain is now almost manageable most days. The combo of the leflunomide and humira were finally working for me until I became allergic to the humira...but that's a story for another time.
Seriously though, my saving grace for the stomach issues has been eating smaller meals and anything ginger....my ginger perfume evens helps with the nausea occasionally. And this board has been great....I don't post often but when I am frustrated with the way I feel, I come read here.

Hang in there

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7/28/12 4:14 P

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Honeysews,

I think, for me, Methotrexate did help shrink some rheumatoid nodules, both externally and internally, but my hair fell out BIG TIME! My doc discontinued it a few months ago. Now I'm on Remicade. I'm not a believer yet because I don't really see or feel results. We'll see.

Have a happy day!

Tiny emoticon

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HONEYSEWS's Photo HONEYSEWS Posts: 627
7/27/12 3:53 P

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When I went on methotreate, I read everything I could find on it. One article said eat oatmeal for breakfast, then take it. I did. Also had gingerale and pepermint candies in the house for nausea. I never felt sick to stomache or had bathroom problems, but two weeks before I started that drug, I started on 3mg folic acid, prescription. I started having hair loss, I have thin hair to begin with, and inflamations numbers were not coming down, so after many months, I said, no more. So, now I'm on Enbrel, once a week, DH gives me shot. I am feeling much better. Inflamation numbers have been slowly coming down. I also take a anti inflamitory med, Daypro, l tab twice a day. Prednisone gets the pain away and you back on your feet, some people stay on a low dose all the time. I had pain patches for my shoulders, and used Voltarin gel, prescription, and over the counter rub ons. Which help knees and wrists. Feel better.
Call and ask your Dr. for some help. That is what they are there for.

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JUDITHWITHROW's Photo JUDITHWITHROW Posts: 1,119
7/24/12 1:52 P

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Deartomyheart...glad all our yammering helps.

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DEARTOMYHEART Posts: 12
7/24/12 10:41 A

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Thanks so much for all the information. I have been on all kinds of med over the past 35yrs. Just reading everyones thoughts and the way everyone handles there own situation is awesome, and truly gives me strength on days I need it most. Thanks so much for sharing. emoticon

JUDITHWITHROW's Photo JUDITHWITHROW Posts: 1,119
7/23/12 8:27 P

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Ask your doctor to write a script for physical therapy. PTs have a wealth of knowledge. During my sessions I ask tons of questions while doing the therapy.

Studies have shown that damage can occur even when there is no pain or visible swelling. That's why the drugs are so important. For me, pain and flaring go hand in hand so as the drugs work, my pain decreases. My disease is not fully under control so I have a level of pain daily but nothing like when it hit me last year.

Normally you have to try two of the older medications like Plaquenil and Methotrexate before your doc or insurance will consider a biologic.

Moderate exercise is beneficial for us all because RA canibalizes the protein in our muscles. The trick is to find your balance and not over do it.

Weather also has a big effect on me. Drops in barometric pressure and elevated humidy increase my pain.

Keep asking questions.

Edited by: JUDITHWITHROW at: 7/23/2012 (20:28)
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BKWERM's Photo BKWERM SparkPoints: (91,845)
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7/23/12 2:51 P

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Sorry for the late response. Judith is correct. My RAD started in my knees in 2004. I had taken up running that spring and I thought that was why my knees were so sore. In fact, I actually walked 5K to get my bloodwork done because I didn't think there was anything seriously wrong. I mean, I'd been mostly healthy all my life. I rarely get sick. Yeah, I'm overweight but I exercise and eat healthily most of the time so I figured I was good.

But I wasn't. Just walking down the hill from where we live to town killed my knees. Who knew that walking DOWN hills would hurt more than walking UP hills.

By the time, I got into to see a rheumy (2 months after my GP diagnosed me), I could barely walk because my knees were so swollen. I went to bed with ice packs on both knees but I wasn't getting much sleep. It was the WORST pain I've ever had and I also never want to go through it again.

My rheumy started me on Methotrexate, Sulfazalzine and Plaquenil. Oh yeah, and the dreaded Prednisone. But, it was the Prednisone that took away the swelling and a lot of the pain so even though people hate being on it, I thanked God for it every day.

It takes awhile for the other meds to take effect. Typically 6 to 8 weeks. And, all of the meds have side effects and a lot of them have scary side effects but you have to decide what you'd rather have -- terrible pain and possibly severe deformities or quality of life. Personally, I chose quality of life.

I only took Methotrexate for about a year. I also took it on Friday nights because I didn't want it interfering with work on Monday. However, I felt nauseous and exhausted for 3 to 4 days after taking it so eventually, I convinced my rheumy to let me stop taking it because my quality of life sucked big time.

But all of the meds work differently for every one. You just have to try them to see if they're the right ones for you. It took a long time to get the right mix of drugs for me. The only RAD drug I'm on right now is the biologic, Rituxan. I get it by infusion twice every 6 months. I also take a low dose of amitripylene (25mg) for costochondritis, which I'm convinced I got from Humira, another biologic since I didn't have it before I took Humira and I definitely had it after!

You think joint pain is bad? Having your whole rib cage hurt is far worse in my opinion (costochondritis). This was in 2008. I was off sick from work 5 times during the year. The only thing that helped was heating pads. I have one here at work and three at home (a bed one, a neck one and one that I can wrap around my core). I hope that never happens to you. I told my husband that if this was the way I was going to feel for the rest of my life then I hoped that my life wasn't a long one.

But, now, most days, I feel pretty good. My left knee gives me the most trouble (that's where it started for me) but other than that, life is good.

Be patient. You, too, will get there. The medical world continues to make huge strides in research and development.

Take care.

Edited by: BKWERM at: 7/23/2012 (14:53)
Joanna from Dundas, Ontario
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SEATTLE58's Photo SEATTLE58 Posts: 4,786
7/23/12 12:20 A

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Jill, from my experience, I feel that when I have more pain than usual, it's definitely a flare. Or, as you would know, that the day before or so, I could've really over-stressed certain joints and then I pay for that the next day plus. Sometimes it's hard to distinguish, but yet we know in our hearts what we've done and haven't done. It seems to me that the joints that are usually a problem every day are the ones that will swell so much more during a flare. I have gotten so much extreme help with the meds. I've been on for almost 4 yrs. now. I don't feel I could ever live without them and that includes the Methotrexate. You know Dear, that it might just be that with all the horror stories you've heard, that you won't be affected like that at all or if so, a whole lost less. Your Dr. will keep tabs on you and adjust your dose and other meds. if possible, with just exactly your body requires to make you feel so super-duper better. To live with mild-medium pain every day is nothing company to excruciating pain without meds, believe me. Our Dr's try to make us feel the very best that they can! You will be amazed at how much better you'll feel! It's truly a blessing!!!! Good luck!! emoticon emoticon

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JILLBRYA's Photo JILLBRYA Posts: 106
7/22/12 11:37 P

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I cannot express enough thanks to you guys. I do for alot better fter talking to everyone. From what im understanding is the methotrexate is not basically used to treat a flare but to prevent further damage done to the joints. If what I experienced was a flare my gosh i never wanna go through it again. I can positively say that was the WORST pain in my entire life. I don't ever want to go through that again!! Im assuming if i dont take the meds even if im not in oh my gosh somebody just take me out of my misery pain (lol) that the damage is still occuring. If you have pain but pain you can deal with is that considered a flare or just part of the disease? I have pain everyday I've noticed my wrists swell pretty bad when the pain gets more intense in my arm or shoulder. Is that typical? Im sorry for all the questions. It juat is really good talking to people who know wjat theyre talking about. My Dr. Is pretty much heres your problem, heres your meds take em and ill swe you in a couple months. There is no 50 questions because shes overloaded with patients.

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DEARTOMYHEART Posts: 12
7/22/12 3:04 P

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I have been on methotrexate for over 25 years. Yes the drug is strong but it works. I still get nauseated at time or get mouth sores, but all in all, I believe in it. Take folic acid, vit. D and calcium. I am also on the drug Rituxen. It is an infusion. I have been with so much less pain, it's a great drug. All these drugs will help with the distortion RA can cause. I have tried all the other drugs mentioned so I feel blessed this drug was available. I have never had a bathroom problem with methotrexate. I would be more afraid of the distortion and the loss of great days then the drug itself. I believe in quality of live not quantity. I can exercise and enjoy my grandchildren. Yes I get tired but I rest and have a strong faith. Good luck on what you decide. God bless.

TINYBUBBA1's Photo TINYBUBBA1 SparkPoints: (50,068)
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7/22/12 10:50 A

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Jill,
I know your frustrations from my early days (12 years ago). It's a hard-to-understand-and characterize disease. I also think it presents differently with different symptoms in different people. The "crying in the night" kind of pain is what I believe a "flare" is. I've heard that RA usually "attacks (or flares)" on one side at a time. That hasn't always been the case with me.

I think this is a disease where you never know what tomorrow will bring - and sometimes it seems like it's more than you can stand, but just "keep your chin up."

I will tell you that I refused treatment (Methotrexate) for ten years and, because of going that long with the progression of the disease, I have much, much severe damage.

I'm also on a Vitamin D supplement, primarily because I also have osteoporosis.

There are some newer drugs such as Enbrel, Humira and Remicade that are very effective in the treatment of RA. I've been on Remicade for about 6 months. So far, I don't see any huge improvement in my disease, but they tell me it takes a little longer for some people to notice a difference. I understand that most people who are on it love it because they feel so much better.

Wishing you well!
Tiny

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JUDITHWITHROW's Photo JUDITHWITHROW Posts: 1,119
7/21/12 3:45 P

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Talk with your doctor about your tummy concerns. My gastro doc has me take an Imodium the day of my Methotrexate dose and that has helped me tremendously.

The more people you meet with RA the more you will learn are stories are similar yet each unique. "typical" is something you read more about in literature than the individual stories of people you meet.

Yes it tends to start is the hands but not always. I believe Joanna's started in her knees. Both my feet hurt but my left has always hurt more than my right even though the doctor tells me my right is worse.

The doctors are trying to prevent joint damage and bone erosion. I know those who have fought this disease for many years would urge you to take the drugs to prevent damage. Ofc it's up to you.

I know it's scary.

Edited by: JUDITHWITHROW at: 7/21/2012 (15:48)
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JILLBRYA's Photo JILLBRYA Posts: 106
7/20/12 7:32 P

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I've read a lot about upset stomach and having to use the bathroom alot when first taking it. (to put it nicely) lol. That is part of what im worried about. I answer phones at work and it's hard to be stuck in a restroom all day at work. I know this sounds vain but I am worried about hair loss. Do you lose alot?

When all this started I woke up in the middle of the night crying hysterically my shoulder was in so much pain. I had horrible muscle spasms on top of it all. I went for months of literally a couple hours if that of sleep a night. (I've never experienced anything like this) Finally my dr. looked at my MRI and said you have severe arthritis I want to test you for rheumatoid arthritis. The Rheumatoid factor came back high so I was referred to a rheumatologist. She called after my testing and said she wanted to start meds for RA. She said my results were not typical of what she usually sees. That there are 2 tests that will usually correlate with the other, but she still says it's RA. She also said I had a vitamin D deficiency and was adding a supplement.

From what i've heard the pain should be on both sides. I do have pain on both sides but the left is really bad. The right is not too bad. I read all these stories of people who can barely move and I am not like that. Yes it does hurt to walk but it is worse after sitting or laying for a while. I have use of my hands, they do hurt and I can see they are "changing". The pain when all this started was completely unbearable. I did see a pain management dr. who gave me several injections in my spine. (they thought this was because my discs). The pain is still there some days worse some bad but with pain meds it is now tolerable. Could that be a remission?! I don't know if it is severe enough anymore to require meds I guess thats why I am asking all the questions and explaining my story. I don't know i'm just so confused on how this RA works! My sister has RA and hoshimotos (auto-immune diseases run in my family). Does this sound like RA? Everyone's story seems so horrible and it really makes me wonder. Maybe i've caught early? When it started the pain was so unbearable is that a flare? I am sorry you guys I feel like im rambling just wondering what everyone thinks. Thank you all for your responses. It is good to talk to people who are going through this also!

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JILLBRYA's Photo JILLBRYA Posts: 106
7/20/12 7:17 P

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My dr. put me in 50000 units of vitamin d once a week because mine tested to low. I don't know if its my lack of drinking milk or if the RA causes this. Did you notice having a hard time falling asleep the day you take it? I started on a Wednesday night and it seems to keep me up.

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GMKLEIN's Photo GMKLEIN Posts: 929
7/19/12 10:32 P

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I have been on methotrexate for 3 years. I first started with the tablets and which upset my stomach and caused very lose bowel movements. My doc switched me to the injectable which resolved the issues with the digestive track. Due to the recent shortage of the injectable I am back on the tablets. I take it at night, friday to be exact with food and have added a probiotic supplement which has reduced the nasty side effects. Taking this Friday night I have the weekend to recover from the side effects so my work schedule is not impacted. I also take a vitamin D supplement to help with fatigue. Without this drug I would be crippled. My advice is give it a try and keep trying different things to cope with the side effects.

"Everyday is a second chance to do everything you have wanted to do"

"Success is never last and Failure is never Final"


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7/18/12 9:15 P

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Jill,

I took Phenergan (prescription) for nausea 30 minutes before I took the Methotrexate - my Methotrexate was a high-dose shot I had to give myself once weekly. Before the Phenergan, I would vomit for 4-5 hours after the Methotrexate injection. The Phenergan prevented nausea. Your doc will probably be happy to prescribe Phenergan. Be careful - it makes you sleepy & you cannot drive, etc. after taking Phenergan.

Good luck!
Tiny emoticon

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LJR4HEALTH's Photo LJR4HEALTH Posts: 32,279
7/18/12 7:47 P

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I took it way back in 2005 really don't remember the side affect though when Did bruise it lasted on me for 6 months

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4-1HEALTHYCYNDI's Photo 4-1HEALTHYCYNDI Posts: 11,230
7/18/12 6:25 P

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Hi! I'm a little late to the conversation but I am on a fairly high dose of it right now and have been for about 6.5 years now. The worst side effects I've had is the nausea & extremely tired the next several days. But I can live with these as the medication really helps control the pain/swelling for me. I take it in conjunction with Actemra (and Remicade before that) as it was not enough to control my arthritis on it's own.

My rheum has my blood work done every other month to monitor for more side effects. I have never noticed a shortness of breath while on it. Everyone is different but I always take the methotrexate on a combination of Friday night/Saturday morning. I was told by my doc that if I take it within 36 hours it will have the same effectiveness but it limits the upset stomach side effect for me. And yes, for me the nausea is/was always gone by the next day.

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JILLBRYA's Photo JILLBRYA Posts: 106
7/18/12 3:26 P

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I appreciate everyones responses so much. Has anyone had any breathing issues on this med? If i take it on the weekend do you think the upset stomach will subsidee by Monday. Worried about work.

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TINYBUBBA1's Photo TINYBUBBA1 SparkPoints: (50,068)
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7/18/12 10:16 A

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Hey, Jill!

I understand your concern about Methotrexate. I refused for more than 10 years to take it. However, I did start taking it in June 2010. I noticed some really good results - even visible changes in my joints - disappearance of nodules, etc.

My doc discontinued my Methotrexate a month or two ago. I had EXTREME hair loss. Not to worry, though. I started taking a Biotin supplement and my hair is coming back very nicely. I'm now taking Remicade IV infusions. Remicade has all those same side effects as Methotrexate - and more. It just depends on how one particular person's body responds to a medication.

If you don't take some form of treatment, your disease can progress and become VERY SEVERE - take it from one who knows!

All the best to you!
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JUDITHWITHROW's Photo JUDITHWITHROW Posts: 1,119
7/18/12 6:59 A

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Methatrexate got me functioning again. My hands were so bad, I couldn't even hold objects. My hands would freeze shut. I also could barely walk to the bathroom. Methatrexate took about 2 months for me to really feel better.

The day after my dose I am tired. My tummy is also not very happy. I haven't had mouth sores or dizziness.

Make sure you eat something with your meds and take your frolic acid. Expect the best.

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ANGEL1066's Photo ANGEL1066 SparkPoints: (70,652)
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7/17/12 11:53 P

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Any medicine strong enough to have an effect on RA will also cause side effects in some of us. I am no fan of Metho - it was ineffective for me, and delayed my getting effective treatment. But it does work well for many, with few side effects for most. It would be foolish not to try it. It may give you temporary relief while you pursue a healthier lifestyle that may eliminate the need for such strong medicines.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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SEATTLE58's Photo SEATTLE58 Posts: 4,786
7/17/12 11:04 P

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Hi Jill, everybody can respond all differently to any drug, so you might not even have the same side effects that I have. When I first started taking it back in 2008, I remember that I would get so dizzy for the first while and then into the week it would decrease and get better each new week. I'm taking 15 mg. each week and have been on 20 mg. but my liver showed to be toxic from that med. You see, your Dr. will be so good about having you come in every 3 months for your blood work and an appt. They always want to make sure that you're not toxic and if you are, they'll pull back on the med. right away. So there's really nothing to worry about because of the blood work that's required. I would get other side effects of the mouth sores and cold sores so bad and then my Dr. would decrease the dose then too. Also when my hair was thinning so much. Alot of the Dr's, including mine also prescribed Folic Acid that works to calm down the side effects and I think that it's really helped since I've started that about 6 months ago now. My Dr. told me that it really should be a prescription. The supplements aren't strong enough. The way that I look at all the RA meds. that I have to take, is that I can have somewhat of a quality of life now whereas before I couldn't do anything and I mean anything! To tell you the truth, I'm scared to go on the stronger RA meds. of the Biologics that are through IV's, etc. That's where the strong side effects are I feel. They're so spendy and we can't afford them anyway. Good luck to you!! You'll be just fine. So many others will respond and I know that you'll feel all better! We're all in this together!! emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JILLBRYA's Photo JILLBRYA Posts: 106
7/17/12 10:32 P

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My Dr. prescribed methotrexate, I know its one of the main meds to take for RA but I am really afraid to take it. I've read all the side effects and they have me worried. Can anyone tell me what to expect when taking this medicine for the first time. Thank you!

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