Monday, March 31, 2014

Down to 10 mg

I am so happy this is going much better than any other time I've tried to ween off the prednisone in the last few months. I am back on methotrexate so I believe that is helping. I didn't find the Arava to be effective at all. I know they say it can take up to 6 months to really work but after a month I was done. So from 30 mgs a day I am now down to 10mg a day, this is the second day with one more to go. Wednesday I start only 5mg a day for about a week. So thankful to finally be getting off of these steroids. They are just so bad for you and my teeth are definitely becoming an issue because of them. Just great, so rheumatoid under control.....let the dentist appointments begin.

Friday, March 28, 2014

So Far, So Good. Successfully Weening

This has been the first success I have had at weening off of steroids in 2 months. I am so thankful as I am not losing weight anymore and my teeth are really becoming affected (yes, see dentist visit coming). I am down to only 15mg of prednisone for the second day now. No flares, no pain, no aches. The methotrexate seems to be working quickly in my system after only being on it for two weeks. Almost 3 as I take my dose on Sunday. So very thankful!

Tuesday, March 25, 2014

Ignorance about Rheumatoid Arthritis

When I tell people I am living with Rheumatoid Arthritis it will never cease to amaze me the people that respond with "yea I have arthritis too." In my opinion, it's a totally ignorant response. Arthritis are not the same and are treated very differently. There are 100's of types of arthritis. My first thought is "If you really had this disease you wouldn't be treating it with Icy Hot from Walgreens." I only wish that would work. I also have osteoarthritis in my knees, especially my left which is quite bad. For that I am treated with cortisone shots and also with a synthetic gel every 6 months to coat the bones and it really does help. The Synvisc especially, definitely not Gel One. That one did not work at all. Biking is also great for osteoarthritis and I have put off shots by months just biking alone (generally about 40 miles in a week). When I am not biking I can tell the difference as I get extremely stiff. So please, if someone tells you they have rheumatoid arthritis (the WORST arthritis) don't sympathize by saying "yea me too." At least not until the diagnosis is official.

Weening off of Steroids.......again

This is probably the 3rd time I've tried to ween off the steroids (prednisone) since the fall in January and switching to Arava and back to methotrexate. So far so good. Going from 30mg a day to 25 mg a day went pretty smooth in comparison to the last time I tried. It was three days, little flares but went away. Nothing too major. Today I start 2 pills a day (5mg) twice a day. Prayers are always appreciated.

Saturday, March 22, 2014

Preparing a RA Friendly Diet

While I find many websites to be of great help when looking into a diet suitable for Rheumatoid Disease I have to say that I find it very disturbing that the link to gluten intolerance is not mentioned and enforced, especially considering so many of my doctors support the link between the two and it has been proven through research (as if my own elephant man experience isn't enough as I no longer swell with flares). I wanted to share this link to help others put together a plan. My suggestion, try gluten free for two weeks and see how you feel....if you feel better GREAT.....if not, go back to the gluten.

Thursday, March 20, 2014

Feeling it the methotrexate?

I was on the court this morning. Unlike last week I am not feeling any major pain or flares coming and I really played well this morning. I was quite pleased finally with being able to move and also not being really tired by the end of the hour and a half. Is it the methotrexate? I dunno if it would kick in that quickly but it's been all uphill since switching back from the Arava. Hoping it continues to get better.

Tuesday, March 18, 2014

Healthy Living for Arthritis

I totally believe in a plant based diet. I also believe exercise and taking control of your health is necessary for beating this stupid disease! This is something new I am going to try today. Losing weight has so many benefits, that's been my goal since getting serious about tennis. Try this fat water flush!

Happy for Methotrexate????

Well yes I actually am! I went back to tennis last week and although the rheumatoid flares weren't as bad as the previous time I played (wrist, hand, shoulders, foot, knee for over a week) I still had some minor flares (thumb and fingers both sides). I really just had enough. I've been on the Arava for about a month and my steroid intact has not been able to be reduced. That is a scary thought for me. As I sat in the message chair (something therapeutic that I do after every message, oxygen and calm in-arthritis and pain out) I prayed what to do. Whatever allergic reaction I had is cleared up and we don't know if it was the "metho" or not. What I do know is I felt great when I was on it. I also didn't need steroids until I fell at the nursing home. So I called my doc and yes, I am back on it! My sign was when a friend who also deals with this dreaded disease sent me a message saying she was back on methotrexate and off of the Arava for the same reason, she can't get off of the steroids and the flares have been awful. That was the decider for me. It seems this rash I had on my hand probably (though not 100%) came from getting glutened. You know I believe a gluten free diet is necessary to control rheumatoid flares. I have been getting glutened quite a bit. I am pulling in the reigns and going back to being quite strict. My lab screwed up my test for celiac so I am not sure if I have it or not but after seeing this rash thing and the polycycstics and the wheat belly and stomach problems now being gone I totally believe I am celiac as well. That rash is called dermatitis herpetaformis,

Wednesday, March 12, 2014

Back to the court

Finally after almost 2 weeks on consistent flares from the Rheumatoid Disease I am planning to head back to the court tomorrow. It will actually be over two weeks. Very nervous, very afraid of more flares, and very afraid of being in pain afterwards but I have to remember that I have to fight back with this disease. I can't just let it have it's way. I took off from lifting for 3-4 weeks thinking that was causing my flares but it got worse so I went back and I actually started to feel better. So, I will let you know how I feel tomorrow after I play. I'm hoping good.

Monday, March 10, 2014

My early signs and symptoms of Rheumatoid Disease/Arthritis

I wanted to share these for others who aren't quite sure what is happening with their body and what on earth is it doing? Some of the signs were clear which sent me to Urgent care to get checked out. Some presented as Carpal Tunnel or a neck injury which stopped me from looking further (I am a musician who had a car accident, easy to think it could be something else, in fact, my physical therapist from my knee surgery thought it was carpal tunnel). Looking back, isn't everything better understood once you live through it, I am a pianist and guitarist so when my wrists started hurting and hands were going numb I pretty much just thought it was the "tools of the trade." It wasn't until the first dose of prednisone that I realized the morning numbness went away and "uh oh" maybe this isn't carpal tunnel. During my knee rehab I had a therapist give me his guess that is what is was. I didn't give it another thought. My Rheumatologist still isn't completely sure but suggested I wear braces to bed and that has really helped. Not waking up in the middle of the night to get some circulation back in my hands has been wonderful. But the numbness was definitely a sign of the rheumatoid or it wouldn't have gone away with the steroids. Now I know. Another symptom I had that started about a year ago is what I call the "clicky finger." My middle finger of my left hand just wouldn't bend normally. It was always with a click. I have since learned that is a classic sign of rheumatoid disease. Being unnaturally TIRED. I mean falling asleep on my feet tired. I just thought I was overdoing something which is classic me but this was really unnatural. Who falls asleep while standing up. I was. Unnaturally tired. If any of these things are happening to you ask for a RF Factor test.

Saturday, March 8, 2014

Rheumatoid Disease is quite frustrating!

Left the house with a brace on my left foot this morning. That eventually came off and the swelling in my left hand from this morning. Tonight I go to sleep with my left elbow hurting and right ring finger....Ummmm, I have to work in the morning which requires me to play guitar and piano, seriously? This disease is quite annoying.

Friday, March 7, 2014

Stress and Rheumatoid Pain

The pain is back, so is my stress level. There is a definite relationship with the two. A word of advice to all the rheumatics out there....cut back on stress. You will feel better. I did manage to work out regardless. 16 miles on the bike and lifted some weights before the pain came back full force. Back to Tramadol and hoping the prednisone takes care of the pain by morning. Seriously though.....cut out stress.

Thursday, March 6, 2014

The longest Rheumatoid Flare Ever!

This has been going on for about a week now.

Woke up almost pain free!! I'll take it.

For the first time in almost over a week I awoke pain free. I have a little stiffness but no intense pain! I will take it. I can't remember the last time I woke up feeling so good but I do and it's wonderful. Still on a high dose of prednisone (30mg a day) and plugging away with the Arava (which is maybe starting to work finally, it was two weeks yesterday). Maybe I can start to ween off soon. I hope so anyway. But for now. I'm excited to finally feel good as I travel into the city to see the dress rehearsal for the Pennsylvania Ballet. Thank you Lord for feeling pretty good today! Sitting here typing to Mandisa's Good Morning Song (my ritual the last few days to start my day right and focused). What really helped the last few days was just reminding myself...this is temporary. Don't fall for the pity party that this is how it will always be. "This too shall pass" and it did.

Saturday, March 1, 2014

Gluten free for Inflammation

Before I was diagnosed my foster dog had a vet appointment. I was telling her what the ER doctor thought I may have (Gout or Rheumatoid) and how my hands were losing circulation and going cold from the swelling. We are talking elephant man swelling, for lack of a better term. She was the first to suggest that I go gluten free to stop that. I was intrigued so I started to research the benefits of a gluten free diet. I thankfully also have many friends who are gluten free and started to ask them their opinions and what worked for them. There really seemed to be a benefit to going gluten free. Then I read a book that totally changed how I thought about food and it's purpose in our bodies. Being a tennis player it was already on my list to read: Novak Djokovich's Book Serve to Win. Novak is gluten free and dairy free. The thing I remember the most from the book is this line "Food is information that tells out body how to behave." So we are saying food tells our body what to do? I took his advice and tried going gluten free for two weeks. The result. No flares and and my knees felt better, especially the knee that had just had surgery about a year prior. My stomach that has always been very sensitive seemed to calm down. I had more energy, I wasn't in as much pain. As I continued to read and learn about gluten I remember that about a year before I started to switch all our pasta, our breads, and crackers, and even bagel to 100% whole wheat. We are told it is better right? Well, not always I suppose. I didn't realize wheat is a gmo, the original. We hear about corn and soy and peanuts but never about wheat. How about that. I started to feel great. I talked to my Orthopedic Surgeon and also my Rheumatologist about my diet change and they were both all for it. Very supportive and said the lastest research shows it aids inflammation and rheumatics would be better to go without it. It's now been 6 months and there is no looking back. Even when I flare now I don't have the additional pain of inflammtion. No more swelling and loss of circulation. I think the gluten free is working. My family is not completely gluten free but seeing what is happening with me they definitely eat more gluten free and are adjusting to it. I'm fun to feed now being a gluten free vegetarian. Check the book out of the library. You won't be disappointed if you are interested in eating clean.

Day 11- Arava where are you?

I realize these drugs take some time to build in your system but I am quite sure that Methotrexate worked much much faster. Since I've started the switch I've had a week of being ok (pain but no flares) and now I have been in one constant state of a flare for 4 days. It's quite frustrating. I know I read somewhere on a website that sometimes mega doses are given to introduce the drug. Why I didn't think of that yesterday when I spoke to my rheumatologist I don't know, but if I am not flare free by Monday I am going to call and suggest that. As it stands, my prednisone dose is up to 30mg. a day. That is quite high for the girl who survived on 5mg for a very long time. It's necessary though, my flare started in my right shoulder, moved to the left shoulder, left elbow and wrist, then my foot (when I started this blog), back to the right shoulder, right elbow and now in my wrists again. Both. All this while on prednisone. I keep telling myself it will get better, it will get better. Put that faith to work and not give in to the worry of it never ending and not being able to take anymore pain. I've definitely been utilizing pain meds this time to keep the edge off (though none helped with the foot). I know most people love the weekends but for me, it's no different that the work week. I still work, I still have to run Twinkle Toes to Philly for dance in an hour or so. Thankfully there is mercy and I don't have to spend 2 hours at the tennis club for a tennis match. I get to come home and relax. shhhhh don't tell my daughter or I'll be out doing something I'm sure. Soo day 11.....Arava when are you kicking in? I kind of need you.