Just found out I have RA, Scared! | Arthritis Information

 

Deb

 

Welcome and I am glad you found us.  You are starting on a building dose of MTX.  You may have some side effects, but keep with it unless they are overwhelming.  Take your Folic acid too.

What are you the most scared of??

Welcome Van

Linda

Hi Vankama, AND WELCOME TO "us".  

Oh, and I was started on Methotrexate/folic acid too. I was also scared and didn't take it until I went to my next appt. It is one of the first meds they use and has been around the longest, I think. If you can, take it before bedtime so you sleep through the tummy upset, if you have any. I did at first, but it went away. Also, you may feel worn out for a day or two afterwards. A lot of people take it on Fri night so they can rest all weekend and it doesnt interfere with their workweek. I don't work so I take mine on Mon nights so it doesnt interefere with family time on the weekends,and I can rest while everyone is at work/school.

Like you i am new also i have been reading the posts for months

i am so glad you found this site and hope it helps you like it has

helped me this is a very wonderful group of people just like us. but

to try to answer your question i take 8x2.5mg mtx every friday.

Welcome and have a pain free night.

Pip

P.S.  You too Darrel!

Welcome Diane, you probably feel like you have information overload right now! They have to tell you all of the bad side effects even if you really would rather not know as it does sound really scary. Your Doc wouldn't give you MTX unless she felt that it would help you. You might not even get many side effects(everyone) is different on it.

I also have severe TMJ from the RA if you want to talk about it. hammerstein120039324.8433449074Hi, and I'm glad you are bravely accepting your dx and your doc has given you mtx. I was in denial for 5 years and have joint damage as  a result of putting off RA drugs. That is a low dose of the drug and so I doubt you will have ill effects, but write us back if you do. People have such good suggestions. On a full stomach is good, and in the evening so it has a chance to get into your body over night. You may feel tired the next couple of days, but not awful. I've taken it for 15 years and it has helped me a lot. good luck, Lynda

Welcome and hi to Van and Darryl both! Try not to be scared. Alot of people here are on/ or have been on the same road as you are. I know at first the dx is a bit over whelming but you'll get used to it> you'll need to be strong and well informed. Ask any thing you want to know or are curious about. Lots of people understand because they are going through the same thing. With support from this forum and your family and friends, you'll make it through! Hang in there!

Best Wishes

Hi Diane,

Great advise and info already. I just wanted to welcome you to the group. Come and visit as often as you need to or just come and hang out. Lots of info and some realy great people.

Jay

Having RA is scary.

Dx time is a particularly scary time.

Things are all new, they are throwing these meds at you and telling you all the side effects, you are being put through endless tests, you already don't feel good, it's stressful, and a massive change in your life that you didn't ask for.

We have all been through it here and this is a good place to stick around to help you through whatever is to come.

Like the others said, that is a MTX starter does...they will see how you respond to it. Usual side effects are an upset tummy, tiredness and a bit of hair loss, nothing to major but you may not even experience those. I have only had a bit of hair loss not the other two. Everyone is different.

Keep posting and asking questions, it will help you through.

It is a scary time.  However, at least now you have a diagnosis and can move forward with treatment.  My doctor and I decided on an aggressive approach to treatment.

I started on 7.5 mgs. of MTX.  I have beenon 10 mg for about a year with few side effects...some hair loss, fatigue, occasional upset stomach.  The good news is that I have been virtually pain free and functional since the MTX kicked in which happened pretty quickly for me.

Good luck.

Hi Diane, I just wanted to say hi and welcome.  I'm sorry that you had to join us but glad you did when you needed the information. 

I use injectible MXT 17.5 mg.  I don't have any side effects.  When I first started I experienced some fatigue, an occasional mouth sore and that was it.  Once my body became accustomed to the med. then the side effects disappeared.  Sometimes I do have some slight fatigue, so I don't make any extra plans for the post inj. day. 

It's not unusual to be scared.....you have the right,  but just remember there are a lot of us out here and we're all in the same situation.  You're lucky that it's been diagnosed early and that you can start treatment.  Do not go into denial.....denial is your worst enemy.  I know.  Because of  denial  I have joint damage to wrists, hands, and ankles.  The other bit of advice I can pass on is to research all your alternatives and question your doctor.  Never take a med unless you know everything there is to know about that med.  Your pharmacist will be a great source of information. 

Take care and keep us posted on your progress.  Lindy

HELLO Vancama!

 I began MTX at 7.5mg after nothing else worked, but I guess now doctors are getting more aggressive at the beginning. Yes, you will be taking it for a long time if it works unfortunately. I was up to 25 mg INJECTION. Remember, the injection DOES LESS HARM TO THE BODY ORGANS THAN THE PILLS, and to some, the pills do not work as well as the injections.  I don't know how bad you are, but normally they try plaquinil and sulphasalazine FIRST before MTX. DId you try that?  You need to keep your inflammation done. That is where the damage is.  Also get your CRP and homocysteine levels checked to see where they are on your blood work. Always get a base line and get a copy of your blood work for yourself; request doctor to write it on blood test before you go to lab.

ALSO IMPORTANT. THE REASON YOU TAKE  THE RECOMMENDED AMOUNT OF FOLIC ACID is because it helps the body against some of the liver side effects.  NEVER TAKE FOLIC ACID THE DAY OF YOU TAKE PILL OR INJECTION. IT INTERFERES WITH  EFFICACY OF MTX. I am sure someone already told you this. Make a note. 

 When I took the pill and it stopped working and went to the injection, I felt a lot better. However, now I'm on this darn Humira, but nothing else worked and this is a wondrous drug for me FOR NOW. 

 Anyway, I would also take TMG and milk thistle day of and day after, at least, to remove toxins from the liver. TMG supplement also helps to balance your homocysteine.

Take care

Joanne

Just wanted to let you know that I've been taking mtx for 15 years now with no side effects.  For the last few years I've been taking 25 mgs and still doing very well with it.  I was terrified to take it at first, but now very thankful that it's worked so well for me. 

Make sure you have your bloodwork done every month...that way, they'll know if you'rw having any problems with it. 

Good luck!!

Kelly

Welcome to the board! I am sorry about your diagnosis But this is a good place to gather information and find out what is working for others who have RA.  Always follow you doctors advice on taking meds. No one here is a doctor and should be giving that type of advice.
I have been on 10MG of MTX for over a year now. That is a low dose.

Take the medication the way your doctor prescribes. Some of us here are taking Folic acid on the same day as MTX because our doctors told us that is what to do.  Follow your doctors recommendations and if you have questions ask him.

We can tell you all the experiences that we have had with all kinds of meds and sometimes we complain  about everything in the world. But here people are listening and caring.

.

Welcome to AI Van. Glad you're here.

I'll have to second what thinkthin said: "Always follow you doctors advice on taking meds. No one here is a doctor and shouldn't be giving that type of advice." All our friends here mean well but please always check with your doctor before changing anything with your prescription medications. I've learned that many of our doctors have different opinions on how things should be prescribed. Who's to say one is right and one is wrong? Certainly not I.

I take 25mg of MTX (w/Folic Acid daily) and have for many years. It's been a really good medication for me. I've experienced few side effects and even those have faded with time. Try to keep in mind that these medications are used to slow the progression of the disease. They are long term medications and it's likely that once you find something that works for you, you are likely to be on it long term. It's been my experience that once you stop the medications your symptoms will often return. RA can be controlled; but as of right now it can not be cured.

Again: Welcome to AI.

Hi Vankama,

Like you (and so many others) I was really SCARED too when I first got my DX of RA! I was also absolutely terrified when I had to take my first dose of mtx which was the same dosage as yours originally. I just sat there for a week staring at what seemed to me to be poison to have to swallow. Even though logically I even "knew" that I must have RA or something worse for that matter from the symptoms I had been dealing with for close to a year, I have to admit that I even cried a lot in the beginning too after geting the "OFFICIAL DX".

But honestly, it has all turned out better than I have expected at each new turn in the road. Finding this board and getting so much help when I was feeling so alone with so many questions (not knowing anyone else with this disease) calmed my nerves tremendously and has been a real lifesaver! 

I'm not "better enough" yet to be back to work or back to any of my usual activities, but I have had a lot of symptom relief and feel hopeful now about the future - the NEAR future to be more specific. And everything that I have been so scared about has all turned out much better than I feared.

Because this was caught early enough (which at the time I was not grateful for, as I was just too upset), I don't appear to have any damage. I have also been very lucky in the way of side effects from the medications. I had no more than just some nausea and sleepiness the day after the MTX (even at the higher doses that I on now) and that has even all but disappeared now that I take the folic acid as well. 

I've also now met some other people wth RA at RDs office and at the Infusion center wher I get the Remicade  -- and how they are doing a year or 2 or 10 (mostly back to normal in how they are living their lives) into the disease has also made me very hopeful.   

And you have definitely come to the right place to get lots of wonderful help and support! 

Best of luck to you!

Melly 

 

 

Welcome to the family Van, no questions is ever stooopid. Hi Vankama,
The first year is definately the worst one, so it can only get better from here. Remember, there are many new and improved treatments for RA, and all the statistical information people have is from the past when there were less options. Yes, the future is more hopeful than we think!

I have some advice I hope you follow, which is the more you know the better you will fair in the long run. Please educate yourself!

Some good books to read are:

Rheumatoid Arthritis: Plan to Win
Rheumatoid Arthritis: The First Year
The New Arthritis Breakthrough by Henry Scammell (my personal favourite!)

Depression is a symptom of RA, so if you feel depressed, take heart that as you get your RA under control the disease will get better. It's a long row to hoe so take support where you can get it! This board is a fairly good resource for that, most of the time.
Gimpy-a-gogo39325.491724537Welcome to the board, I'm sorry to read that you have been diagnosed with RA. The first year can be difficult. It can take a little while to get your RA under control and find the right combo of meds. I too have some suggestions about books that might be helpful to you....


What To Do When The Doctor Says It's Rheumatoid Arthritis: Stop Your Pain, Become More Active, and Learn How to Talk to Your Doctors
by Winnie Yu , Harry D. Fischer


The Arthritis Foundation's Guide to Good Living with Rheumatoid Arthritis, 3rd Edition
by Dorothy Foltz-Gray

Hope this helps,

Lynn

Another good book that can help you cope is: The Power of Positive Thinking.

OK, so it's not RA related, but I think it's helped me more than any other book I've read. A positive outlook can make a huge difference in how you manage with this illness.

Welcome and please don't be too frightened of the MTX, even though I was terrified myself after reading up about it.  I've since learned that MTX is the gold standard, has been around for many, many successful years and it may well do you a lot of good.  My RD gives me MTX with Plaquenil.  He, like many doctors now, believe an aggressive approach with a 1-2 punch is most effective at stopping damage.  I agree that you need to follow your doctor's advice even if it doesn't always seem the same as what some others here are told to do by their doctors.  I also was told to take the folic acid every day, including MTX day but was recently switched to Leucovorin, which I believe (if I'm not mistaken) is just a stronger version of folic acid. It helps with the foggy brain syndrome.  Other than that and some fatigue, the MTX and I get along just fine.  I hope you two get along too! 
Copyright ArthritisInsight.com