Very depressed and worried

Hi Tammy -

I'm also having a hard time adjusting to my new reality. I was diagnosed and started mtx in May of this year, so I started on the road a little earlier than you. It's scary, but we have to do the best we can. One thing that's helped me is a book called "Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness"; it's available on Amazon.com.

This board also helps a lot. Nobody in my "real" life knows what I'm going through the way the folks here do.

((gentle hugs))
Carole

And you put a smile on my face when I read your post. Thanks! I've always been closer to a couch potato than an athlete; I started dislocating my kneecaps in junior high and quit sports at that point.

I haven't had any major side effects from the methotrexate (aka mtx). The worst I've noticed is a "metalllic" taste in my mouth. The sulfasalazine makes it worse, so I keep Altoids and gum in my car, in my desk at work, in my purse, etc. I also keep a bag of York peppermint patties for moments when I need chocolate and mint. (It's medicinal, right?)

I have a pretty strong stomach, and the mtx hasn't made me nauseated, but I have read that green olives help. Also when my mom was going through chemo last winter, one of the nurses told her to drink cold water if she felt sick. The coldness makes your stomach contract and it's more likely to keep things down.

I hope you get some relief. I'm sorry you need this board, but I'm glad you found it.

Post Edited (Carole_D) : 10/23/2013 3:03:38 PM (GMT-6)

Hi Tammy

im one of those med resistant people Weary just talked about and ive had RA now for 25-30yrs Along with RA I have other illnesses which don't help matters

in the early days I tried a lot of drugs and had reactions to everyone I put off taking Methotrexate they'd suggest it and i'd refuse so I ended up only on Prednisone then I got to a stage where I was so bad I really didn't care if it did kill me so I said Ok i'll try it

and Ha it has Really helped Yes I had issues to begin with Vomiting & Nausea But my Rheumatologist worked  ways around that and now its only the morning after taking it that I feel nausea But I also eat a big dinner and that helps

and now I am  still in process of finding another drug to go with methotrexate but I have a Rheumatologist that I trust (he's probably the 8th one ive been to a few of the others I really disliked and didn't trust -so that's important get a Rheumy you can talk to) and i know if it doesn't work then fine I just stick with what I have 

I cant say my life is a bucket of smiles - it isn't

But I do have good days and on those I try to do things I like 

Take yesterday for instance it was my 20th wedding anniversary and I wanted to go out with another couple for lunch, so the day before I took it Real Easy made sure I took Plenty of Pain killers and increased my prednisone then yesterday we made sure we went to a easy to get to dinner and we all had a Lovely time

When I got Home I was Very Tired and took a heap of pain killers and rested But I Did IT

 and even on bad Days when I am wheelchair or bed bound I find some good

I Really Don't have Flares & Remission like most do,I am a Constant Flare and go from Flare to Fire But I am Not a usual Person with RA

 I Guess why im telling you this is if I can Have Good Days and find Happiness in Life Just Think What You Can Do Especially if you Get on  Treatments Early

Don't be Afraid they are So much better now than when i was first diagnosed

Woops i have Rambled haven't i just i know the Fear you are feeling it all seems too much but just sit with your support people and take it one day at a time

Hi Tammy,

I normally post on the fibromyalgia forum and occassionally on the lupus forum. I saw your post and my heart goes out to you! My advice to you is...try to take it one day at a time. Don't waste your energy on worry.

Getting a diagnosis, it takes time. You go through a process where you mourn the loss of your old self. In time you accept it. It does get easier. I've been on Methotrexate for 5 years now and it has helped slow down the progression of the disease...I also have a couple of other autoimmune diseases it has helped.

I am a walker and it helps with stress. You have to careful not to overdo, especially on days your joints are inflamed or swollen. Doing what you can to help yourself does give you some control.

There are many people who really understand, here. You are not alone. Wishing you the best!

Hugs, Robin

Your definitely not alone in this...I'm also medication resistant, tried so many and so far only on mtx, mtx does have side effects for me, but they might not happen to you. Just make sure to ask about prescription of folic acid, which will help. Talk to your doctor if your current medications stop helping you. Always, always keep the lines of communications open with your doctor.
Hope today finds you feeling better...
Many well wishes.

TammyRA,

I was also afraid to start MTX in the beginning. Having been an oncology RN in the past (and a current ICU RN), my only experience with this medication was in giving as part of chemotherapy (in much larger doses than what is prescribed for RA). I have been on the maximum PO (by mouth) dose now for quite some time, and find it moderately helpful in controlling my RA. I have had some mild side effects (mostly GI stuff..nausea/diarrhea etc). I have found that taking your folic acid as prescribed is helpful. I take 3mg daily except on the day I take my MTX. There are also a few studies out there on the use of vitamin A to mitigate some of the GI effects of MTX. I have found daily supplementation to be of benefit in reducing these effects, especially the diarrhea this drug can cause.

I also take Prednisone, Sulfathalazine, Plaquenil, and Fosamax (for the osteporosis caused by chronic steroid use). I will be starting Rituxan infusion soon (another drug that I gave as cancer chemotherapy). Can't take TNF blockers due to my history of Melanoma. While I'm not really excited about taking any of these, the thought of disability scares me far more.

I was an avid runner before RA and would easily run 8-10 miles after my 13 hour night shifts. While I can no longer run, I can do an eliptical, walk on the treadmill on an incline, and do yoga. I can't do tae kwon do (I had a red belt before RA), but there are still quite a few things that I can do.

For me, RA has been a matter of shifting focus from what I can't do to what I still can do. I don't focus on the stuff that I can't do. I focus on what I can do. I am still working full time in the ICU, and that's an accomplishment. Some days it is my only accomplishment. I had to learn to be ok with that. I was pretty angry in the beginning. I mean I don't drink, smoke or overeat...so why did this happen to me? The answer was...it just did.

I can still work out some, but just not in the ways that I did before. Some days I can't, and that has to be ok. Some days it is all I can do to walk the dogs. I have 2 100 pound dogs, and my husband has psoriatic arthritis so....we have learned to laugh at the sight of both of us limping along with 2 elderly (also arthritic) dogs. I have been able to maintain a stable weight despite 10-20mg/day of Prednisone by watching what I eat. I eat primarily a paleo diet, which I think, does help my joint pain. I don't drink, except for very rare occasions. I find that alcohol makes my joint pain worse. Like Don, I have to take opiates sometimes (Percocet). I was really mad about that in the beginning. I can't take it at work because my chosen field requires a smart mind to make what can be life saving decisions on behalf of my patients, but I do take after sometimes. It helps a little.

Good luck with your journey. I hope that you find a combination of medication, healthy living, and diet that works for you. It's a journey for sure, but it has made me appreciate the little things in life so much more. So...that said....I am probably a better person since I got RA. I know that I am a better nurse. RA has made me so much more empathetic to the suffering of others.