Arthritis Information -Newly diagnosed and want to be with the living

Thanks for posting a response. Based on the message board reading I did late last night on mtx I have decided to fill the script. I want to be with the living and be able to do stuff with my son and take care of my husband.

Cheers!

Hi Trinky and welcome to the family "sort of "

This can be a great place for suport and there is so much info here just ask a question. I think you made a good call on getting Mtx filled. I do not want to depress you but inform you to what I did not know when I started it.

First they almost always start us off with a lower dose. (They are trying to find the lowest dose that works.)

Second it takes a long time to start working. Mine was about 6 months before we found a dose that seemed to help. I was also taking Prednisone for much of that time. (This on the other hand works almost overnight more often than not) If it is talked about it may help you function day to day until the Mtx is built up in your system. Do not be mistaken it is some NASTY stuff for your body and the side effects tend to freak people out. But it does give a person relief most of the time.

Lastly I hope the 4 year old has taught you some patience you will need it. Come here for suport or just to vent. It does wonders for you!!!

Sorry it sounds kind of gloomy! It sound worse than it is. It is just a lot to deal with when first Diagnosed.

Jay

Hi everyone. Thank goodness for this site. I was confirmed diagnosed 5 weeks ago and must admit it has been a little overwhelming. Apparently my RA is very active and I am more progressed than my Dr. would have liked, and I have a high tolerance for pain.

I'm a 39 yr. old married female with a 4 yr. son. I work and tend to keep a busy pace. My husband has been off work for 18 months now due to his MS. This is not exactly how I figured our lives would be.

I'm currently on 1800mg ibprofine/day and have a script for methatrexate that I have yet to fill. I read info. on mtx and got a bit scared. I visited my naturapath and have been taking suppliments to try to help reduce inflamation, help my joints, and increase my immune system. However it is pouring rain today outside and I feel like I've been hit by a truck. My whole body is in pain. I'm concidering filling the script for the mtx, but afraid of the side affects.

Anyone have any words of wisdom/advise?

Hi Trinky, Its all a bit scary when you get the diagnosis. The trouble with RA is that your immune system has gone into overdrive so the medication needed actually lowers your immune system. By increasing your immune system you are making the RA worse. Many people have taken methotrexate with no side effects but if you do have problems there are plenty of other options such as Arava or Plaquenil. They are all good at reducing damage to your joints . All the best with whatever you decide but damage can occur quite quickly if nothing is done. Take care. Allyfill the meds. what have you got to lose but maybe some pain, if you don't like it you can always quit it but methatrexate is sure one the doctors like to use. it helped me for years and years. it has been around forever so it is safer than you think. good luck and best wishes! Hello there..

I'm taking MTX and it is working minimally.. but that's better than not at all -- took my pain level and swelling down from an 8 on a 10 scale to a 5/6.....it's the enbrel that has taken me to a high functioning level ....

One word about MTX... please take your folic acid ... 1.mg a day.. it will really minimize your bad affects from the meds... and yes..d rink lots of water the day of dose and the day after.... (I did get a major hang over headache one time... RD told me to take a cough med w/ dextramethorphan (SP?) which would minimize that feeling.. one dose two hours before MTX dose..and then another dose the following day..

good luck...

and welcome!!

Hi there !! Im new to this sight but have had (RA) for 24 years now and have been on about everything and many at the same time. I know your afraid of the side effects of metho but all of these meds have terrable sides to them but they can help alot I think theres something out there for everyone ,you and your rumy just have to find the right one for you. I learned a long time ago that when the pain gets tough the tough get meds . When I complain about the side effects of these meds my rumy always says ( this is a serious desease and so we have to use serious drugs.NOW DO YOU WANT TO WALK OR CRAWL. SO I take my meds so I can walk.Trinky, consider minocin, an antibiotic known to help ra and it has way less side effects. look up the roadback foundation or The New Arthritis Breakthrough by Scammell. Methotrexate made me very ill and did not help my ra at all. Minocin has helped a lot.

Do remember, your health is your decision. Hang in there.Hi Trinky,

I am newly diagonsed also. I have been on methotrexate for three weeks and find that so far it's not been too bad. I do get really tired and have occasional queasiness.

It's really scary for me also. I am 43 years old and have to teenage children and am constantly on the go. I have no one in my family with the disease and the only other person I know is my daughters 15 year old best friend. She takes the methotrexate injections. She is really a strong girl and I look at her and feel like I am a wimp!!!!

Working and having children are so hard and sometimes I am so tired that I can barely make it through dinner. My flares get so bad that there are days that I can barely walk. Mornings are the worst. While at work if I sit at my desk too long i find that I feel like I do in the morning .The weather really affects me also.

Good luck with the methotrexate. Please let me know how you are doing on it.

Nice to meet you.

Lisa

Hi, I'm Grammanita, not quite diagnosed for sure. I'm getting in to a rheumatologist right away, but my regular doctor sure is convinced that I have RA. And I am too, the more I read, the more I learn, the more I say, oh that's me. I'm 61 and this just hit like a load of bricks about two weeks ago. My carpal tunnel problems exploded, swelling, pain clear up into my armpits. stiffness in my hands, painful finger joints in both hands, edema, feeling flu-ish, etc. Doctor put me on a 6 day prednisone and I got better in about 24 hours. It was great, but that fed right into the diagnosis of RA, which isn't so great. I have been dragging around feeling wiped out and worried, probably some of this is just in my head, but I find that I am also breathing differently and my legs feel so heavy, sometimes. I don't get going until about 3 in the afternoon. I'm not worth the paper I'm printed on right now, as my dear husband would say.

He's the greatest husband in the world, but hates hearing about this. I think he just wants it to go away.

Me, too.

Would appreciate any thoughts on the outlook for me, based on my later onset. I've been reading that the later the onset, the more viscious the disease in general. Ick.

Also been reading that Methotrexate is often used with one other DMARD and that together they work better than either alone. Experiences?

Anyone had trouble with ibuprofen causing edema?

Thanks lots, y'all. I've enjoyed reading some of the posts here.

Grammanita.

Hi, Lindy,

Thanks for your post. I'm still on hold trying to get into a rheumatologist but I DO have a name and a phone number and a referral, blah blah blah, so all I have to do now is catch the office open and get myself on the calendar. Hopefully soon. I'm feeling fine, but I'm scared because my first bout just came on out of the blue and was really icky. So I'm feeling kind of powerless to control this or keep myself safe. Maybe that attack was just an oddity. I went on the 6-day prednisone treatment and got better so fast, and it hasn't come back. Is that usual?

Sheesh.

Thanks for any ideas. about what's to be expected.

Anita.

Hi Anita and welcome. I was diagnosed when I was in my early 50's with a severe onset of RA. I was bedridden and Pred. saved me. Pred. is a real roller coaster but in my case after failing several dmards and biologics it was the only med. that kept me functioning. I'm now in clinical remission after 10 years. I'm golfing, hiking and of course I've slowed down in the last 10 years but I feel great. The brain fog has lifted along with the horrible fatigue. My combo of meds now is Humira weekly and 17.5 mg. of MXT weekly, NO Pred., and 2000mg. of Sulfasalazine daily. I just wanted you to know that clinical remission is possible even 10 years after a severe onset. I have damage that can't be repaired but nothing I can't live with. Take care and keep posting. We need some of the older generation on the forum. Lindy Hi GM, MAKE THE APPOINTMENT. Don't go into denial because you feel better now. Have more labs and xrays and then discuss meds if needed with the rheumatologist. Don't make your mind up not to see the RD because a little Pred. made you feel better. This is denial and can cause you major damage in a year or so. I know, been there, done that and I have damage in my ankles and feet because I was in denial. Pred. gives you that false sense of security and feeling better. I don't mean to sound like I'm preaching but denial is part of the illness. Take care and let me know how you're doing. LindyHey Trinky-
I'm a newbie and living in Ontario too. I'm 33, diagnosed 3 years ago. That's awesome that you're going to a Naturopath, I've found mine helps a lot.
I think you'll find taking the mtx and keeping both your Dr. and Naturopath informed you'll do awesome! I don't know what part of Ontario you're in, I'm up in Sault Ste. Marie, but the weather this summer hasn't been good at all!!- that's affects me big time!
Hope everything works out well!
~Audrey
Thanks Jay. I found this message board very helpful. I know I'm not the only one or the first to have RA, but I did feel very alone and scared. It's nice to know that you folks are here and that we are all in this together. It makes me feel better knowing I can bounce stuff off other's and get their experience/advice.

I start my mtx today. I was advised to drink lots of water while on this. I am a little nervous, but I certainly don't want to continue in pain as I have been doing for so long now.

Have a great day!

Tinky, welcome to the board and hope that you are finding relief. It is a whirlwind when you are finally dx, and then you are given meds that the rest of the world would never consider using on their beloved puppy let alone a human. You do have to scope out your own journey with this stuff and the journey will be filled with good, bad and ugly!

You will need support that I am sure of. Your spouse and little boy cannot be the only ones in your life giving support and besides they will need support with their thoughts and feelings too. Stay close to this and maybe other boards...there is a wealth of knowledge and just great people to help you along in this journey.

You might want to look at the website www.butyoudontlooksick.com it has a great story and some other helpful things.

Have you thought about antibiotic protical. There are experts on the board for that as well.

Keep in touch and keep smiling!

Welcome Trinky

I have only had this since Nov 2007 so I'm just a little further down the road than you dealing with this.

I was reluctant with the MTX too- but it has been around for a long long time and I take that & prednisone which I am being weaned off of. So now my doctor wants me to start Humira and now I'm dragging my feet about that.

Lots of things to think about, lots of decisions to be made, lots of things you used to do-you have to accept that you can't anymore. It's rough. I try to focus on what I CAN do.

This is a good place to come- especially if friends and family "just don't understand".