Hi, I'm new! | Arthritis Information

Hello,

I'm new here and I'm also new to RA. I've been reading here for the past few weeks but decided to join.

About 6-7 years ago I developed joint pain in my ankles, knees and hips quite suddenly. It disappeard withing about 6-8 weeks and nobody ever found out what it was. I'm uncertain of what tests were made and any of the results. All I was told was that nobody knew what it was.

After this all was good.

December 2009 I started to get a little joint pain again and within 1-2 weeks it had developed in my toes, heals, knees, hip, lower back, elbows and hands (mainly fingers). It was so bad I could hardly walk and it took me 3-4 hours every day to not walk in the speed of a snail looking like I was 95 years instead of 37.

The doc ran a few blood tests and I tested positive for RA factor (143) and the CCP (I believe that's the name?) was elevated but not crazy high. However, my ESR came back normal. The doc referred me to a rheumatologist. He scratched his head, a lot.

I had a lot of tendonits, more so than what was actually in the joints and he wasn't sure what was going on so we were hoping for a virus thing that he said would then disappear within about 12-16 weeks.

I got to try different NSAID's, some didn't help at all and one (Oxzprozin) gave me skin rashes from the neck down so no more of that. Then he put me on Sulindac and it started getting a little bit better.

A few weeks ago he had made up his mind and he said it was RA. Before the diagnose he had also made a nuclear joint scan that showed some inflammation in the actual joins in my feet and hands which goes along with where most of my problems are.

I have just started Methotraxate (I struggle with the spelling) in combination with folic acid and I'm still on the Sulindac. I've only taken 2 doses of the Metho yet but I'm pretty scared of the side effects

Right now things are a lot better. I can most of the time walk ok if I wear soft shoes like sneakers (all the nice shoes went out the door) and my hands/fingers is where most of the problems are right now.

The PIP joint of the thumbs is a big problem. One of them is not crazy bad but the other one is swollen and I can’t move it properly and I get very tired after using it a lot.

My problems seems to be mostly in the PIP joints, one or two DIP joints and one or two MCP joints. My toes mostly hurt where the toe is attached to the foot so to speak.

On my hands I also get a slight discoloring on the some of the PIP joints. It sometimes turns to a red/blue color just over the joint which I find a little weird. Does any of you have this? It is not the whole finger or half the finger but only the wrinkly part of the skin on top of the joint.

I probably have a thousand questions and I probably have been googling too much. My reuma doctor has been good so far but I guess I feel a little lonely as I don’t really know anyone else with this condition (I just can’t use the word disease).

I have a theory about what triggered this as at the end of 2009 I was completely stressed out. My dear mum in Sweden (I am from Sweden and moved to New Orleans 4 years ago) got diagnosed with stage 4 cancer in June and passed away in October. I still can hardly believe what happened and even though I visited a lot during those months it’s very hard for me. I was also working full time plus taking university courses so I had a lot going on and it seems to me like maybe the stress could have triggered all this but I’m not sure I guess.

Anyway, this is my background as I wanted to introduce myself. I try not to get stuck looping around in this and I really try to do active things and be as normal as I can ever be. This is very important to me mentally. I don’t want to think of myself as sick in anyway. I have this condition and sometimes I have to work around things and adapt but I’m really trying to not get dragged down by it.

This is hard though since I was an extremely active person doing a lot of running, strength training and other things so this has hit me pretty hard mentally as well.

Thanks for reading all this if you made it through to here!

Sky, WELCOME!

I can't begin to tell you the number of times I've heard how stress played a very strong role in the lives of people a few months before the onset of symptoms. I've heard just as many stories about a bacterial infection launching the disease. Lots of scientific literature out there verifies both causal factors.

I want to be the first to tell you not to worry about the Methotrexate. I've been on it for 16+ years and it's put a halt to the progression of my disease [until recently]. The horror stories you hear most likely have to do with those people who are taking it for cancer - they take MUCH higher doses. I think MTX is a godsend and encourage you to keep up with it and not give it another thought. Make sure you take the folic acid.

It's frustrating when your tests don't clearly point to a diagnosis, but I'm willing to bet that a lot of people on this board had the same experience. For example, you know how your blood work is constantly taken to monitor your liver function? Well, in 16 years I've never had an abnormal Sed Rate.

I really think the hardest time of this disease is the period when you don't know for sure what it is. After that, and once medication is started and is successful, things are manageable. Sure, there will probably be flares and you'll probably reach a point where you'll be sick of taking meds........but that's pretty much par for the course.

My best advice to you is to get the best rheumatologist you can find to manage your disease. Then make sure you exercise regularly. Keep those joints moving.

It's tough, but you've got a lot of support here. Good luck!

Hi and thank you so much for your positive answer!

It feels good to hear that someone is a fan of the MTX (much easier to spell). I read the long list of side effects and thinking about the liver and potential hair loss got me sort of panicy. The hair loss can seem superficial but I just don't want to have to handle more.

When I started to get better my brain immediately started looping around in the thoughts that the diagnose was wrong and that it was a virus anyway etc. But since some of it got a little worse again and most of my blood work is positive I guess I have to realize I have RA. The brain can really mess with you that's for sure!

About the exercise I am an exerciseoholic and was close to getting my Personal Trainer certification. I will still go for it but because of all this I got some serious motivational problems lately. I keep repeating to myself "never give up"...

I appreciate this forum and being able understand other people's experience with this!

Thanks for sharing!

Sky2010-03-15 18:51:20Hi Sky and welcome to the forum. I too am a fan of MXT and have been taking it by injection for about 8 years with absolutely no problems. I had some of the usual stomach upset when I first started oral MXT but switched in inj. shortly afterward to bypass the stomach. Fear the disease more than the medication.

I wish I could hook up with a personal trainer who has an understanding of RA!!!! That might be an area of expertise for you - people with RA, disabilities and OA. I'm much more comfortable with a trainer but I haven't found one who understands how my body works/doesn't work.

I'm glad that you're doing better. Keep posting and let us know how you do. Lindy

Welcome to the forum!

Welcome Sky. I also have been taking Methotrexate for years without problems. My doctor has me on a Leucovorin "antidote" for the night of my MTX injection. In your list of questions for your next appointment, write a reminder to ask your doctor about supplementing with folate to help with any side effects. As for hair loss, I'm having success supplementing with 5,000 mcg. of Biotin daily, plus my fish oils and flax oil.

Keep exercising! You are ahead of the curve in being an avid exerciser already and also knowing more about it than the average person. You'll just need to learn what to do on good versus bad days. And of course some bad days do require rest. But keeping active is vitally important to us. It keeps blood moving through the joints, elevates the mood and decreases stress.

Ah - stress. That's when my RA hit. I was in a "sandwich generation" type situation while working a high stress job at a law firm, trying to be Wonder Woman, under extreme pressure all day and wham-o, I got sucker punched with RA. Severely.

I wish you the best and hope you get on the right cocktail of meds and find relief.
Green~Tara2010-03-17 09:00:11Hi Sky...welcome!Nice to meet you, Sky.

I took methotrexate for about six months. It didn't do anything to help me, so I changed to Enbrel. While I was on methotrexate, I also experienced hair loss. At the recommendation of someone on this board, I added the 5 mg. of biotin. It worked. The only other side effect I had was fatigue the day after taking it once I reached the 12 1/2 dosage.

Hope you get some relief soon!

Hi and thanks everyone for the encouraging words! That helps a lot!

I have a follow-up with my RA doc tomorrow morning actually. We will see what he says about the progress etc.

Regarding the exercise you can trust me in not being a couch potato unless it's so bad I cry when I move. That's the type of person I am. That is also why this hit me pretty hard mentally as I first just saw all the limitations this would give me. I also saw my future Personal Trainer carreer go out the door.

However, being better now and as LinB said, maybe I can acutally use this experience and work with arthritis clients as I will have personal experience. I know RA is different for everyone but the base of it is the same I guess.

I do have a blog I have run for quite a while in regards to exercising. I have been lagging with updating it since this happened but I will keep it up moving forward with the aspect of RA in it.

I actually had a cool experience yesterday. I felt pretty ok, only hands and toes hurt and the toes weren't bad so I decided to go to the gym and to the eliptical machine as that is a no impact type of machine. I took it easy as I didn't know how my body was going to react but surprisingly my fingers suddenly felt really great! I could move them a lot better and the pain was minimal (and I was only really moving my legs).

This great thing lasted for about 4 hours afterwards and then the pain slowly came back but not worse than before which I take as a good sign.

If you are interested in my exercise blog you find it here: http://www.motivation4you.blogspot.com/

Oh and also, thanks for letting me know about the Biotin! It sounds good to me!

Sky,

I wanted to mention a couple things:

With MTX, most people say it's best to start slowly then work up to the intended, prescribed dose. This give the liver time to acclimate.

As for the side effects with the liver, you really shouldn't worry about that. With MTX comes frequent blood work and "liver function tests." This way your doctor can watch how your liver is handling the MTX. In the beginning I went for weekly blood work, then monthly, and now quarterly tests. My live function tests have been absolutely normal in all 16 years. But I must admit I don't consume alcohol and so far don't need to take drugs that are hard on the liver.

While on MTX I went several years without one flare. Can you imagine? It was wonderful. Yest during that time my body built up a tolerance for MTX, so generally every other year my [pill] dose is upped by 2.5 mg.

Don't worry about the hair loss.....my hair was extremely thick and admittedly now I have a very wimpy ponytail. But the upshot is that it doesn't take long to dry. But I really should try the biotin like the others suggest.

I definitely think you should market yourself as an RA exercise trainer. Boy, if you lived around me I'd be making an appointment with you in a heart beat! I would rather have a personal trainer with RA and who is a bit sluggish than a trainer without RA who is clueless about what I'm feeling and experiencing. [If I meet another one who tells me, "Come on, you can do it," I'll smack her one!]

One last word about exercise. I have an acquaintance who is compulsive about exercise, even when she's sick. Doesn't know when to stop and she's her own worst enemy. But you need to listen to your body. There will be times when you will need to "lay low." You'll learn in due time what you can safely do.

More than anything else, you're going to have to learn how to "pace yourself." After 16 years on the MTX, I'm still sluggish about 36-48 hours after the pills for part of the day. So I know to do some projects that don't require much physical energy on that day. Pace, pace, pace.

You will learn.

And I hope in time you will create a separate section of your website to focus on exercise for arthritic joints. Do that and you'll be on my "Favorites" list.

I'm rooting for you!

Hi Sam!

I certainly start to get my hopes back regarding the Personal Trainer career. Exercise is my biggest passion in life (but I'm not a maniac LOL) and health over all is a big interest. I believe in balance when it comes to both physical and mental health. You should exercise to be as healthy as you can be in order to be able to enjoy life!

I will absolutely incorporate my experiences with exercise and RA on my blog and I will do more research as well.

I think my first liver check is tomorrow at my follow-up as I'm scheduled to go to the lab first and then see the RA doc. It's just the feeling of having to eat something with potential negative side effects to prevent something else that is bad. As you say I will get more comfortable along the road I hope.

I had a really hard time a few weeks ago as my brain kept thinking of the side effects but I wouldn't really see the actual benefit of the drug right away. I have to keep thinking long term.

Thanks for all the support!

Hi Sky I'm new too, also on the MTX for over a year now and it works well for me. It does give me some trouble with the tummy but I'm doing better with it these days. I don't think I've lost any hair because of it but I shave my head anyway.

Love your positive attitude, and you've inspired me to try to start doing some kind of exercise regularly. At this point almost any activity has repercussions but I gotta move. I like to mall walk with the older folks in the am- that's more my speed these days lol.
Sky, welcome to the board :) - and yes, if u were in my area I'd be signing u up as a personal trainer - wd be great to have someone who understands.

I've been on MTX for a number of years - took me a little while for body to get used to it and wasn't told anything by rheumy re side effects - learnt all of that from fellow board members here! Some people have severe side effects but most do ok on it. Was prescribed folic acid tablet, .5 mg, to take each day - they are an OverTheCounter drug in most places. Rheumy also recomended a Vit. B complex tablet daily - and as recommended by otehrs here I added biotin to the mix. Hair fall-=out has steadied - seems to affect my eyelashes more. But so what? the side effects of untreated arthritis are far far worse!!

U can do a search on the board for various medications and people's experiences - lots of folk hve much to share here.

Lorraine

Sky, I would pay to train with you! Keep your certifications going but focus on special populations! You could make lemonade with those lemons.

I do share your pain about RA stealing your original higher intensity plans. We have to come to terms with it. I myself am dealing with more joint damage in my wrists taking my vinyasa yoga practice away from me. I was very active at the local yoga studio, and regular yoga was making my RA feel better. But a series of flares increased the wrist damage and I can't do chaturrangas and updogs any more, or any sort of asana involving pressure on the palms. I had to stop posting in a yoga-based forum that was very motivating to me. It wasn't helping me to be hanging around with people doing handstands and arm balances when a 3 second down dog was all for me.

I'm right now trying to get my head around this new phase and trying to focus on what I can do. Elliptical machine is one of those - isn't it great? And you are right that it helps the pain subside. I feel that the blood moving through the joints helps to wash them, in a sense.

Snow = thank you so much for pointing out it is 5,000 mcg. or 5 mg of Biotin, I had 5,000 mg in my original post. Welcome Sky! I'm sorry to hear about your diagnosis. I think for most of us, it's something that catches us off guard and kind of knocks us to the ground for a moment. But, we have to get up. There are a lot of great people on this forum with positive attitudes and great advice. I was diagnosed two years ago and still have trouble admitting to myself that I have RA. I'm young and have always been healthy. It's hard to come to terms with. However, it has made me become more grateful for the little things in life. Each moment that I'm not in pain is a moment to cherish.
I'm really sorry to hear about your mom. I think stress may play a big role. I truly believe that a vaccine I got is what triggered mine. Of course, very few would agree and there really is no proof for it yet. I don't really like to think about what triggered it though, because the past is the past and we must move on with what we have!
I don't know much about the MTX because I'm on plaquenil, but I did have a friend on it because of a skin disorder and she seemed to handle it fine. So I hope you are able to handle it well also and that it does wonders for your RA!!
Try to stay positive and motivated to pursue your dreams. Of course, give yourself rest when you need it. I think you will be an amazing personal trainer!!!

Each day I try to tell myself this: Life can be hard, and you don't have to look very far to find someone who is dealing with something worse than you are. Try not to focus on the negative things going on, but be thankful for the positive things. I try do things like... I am blessed to have my vision so that I can see my baby boy smile at me... I am blessed to be able to hear my baby boy laugh... I am blessed to have a husband who loves me... so on so on. I know that may sound a bit corny, but it's what gets me through some hard times. And of course, when flares are really bad and the pain is unbearable, it's really hard to feel blessed at all. There will be some days that are worse than others. Cherish the good days and push through the bad ones.
One last thing that someone said to me on here that made me feel so much better.... "With the medications today, there is no reason that you can't still live a full, healthy, happy life."

Sorry to hear you have RA... but remember, it does not define you!!!
Hi everyone!

I just have to say that I have felt a lot better mentally the last days because of your warm welcome and positive attitude and information. I realize it can be easy to get "stuck" in this disease but as you say, that doesn't get you anywhere.

I have also gotten back motivation to continue the road to a Personal Trainer certification.

Another thing I decided is to see a therapist for a little while to get som help dealing with the loss of my mum and all this and get my balance back in life. I have noticed that I very easily become very angry and irritated I move back and forth between just sitting not doing anything and feeling good doing things etc.

I know who I am deep down in there and I'm a very positive person with a lot of things going on and I'm usually the one motivating others and so on.

Thanks to all of you for motivating me because I really needed it!!