RA Living

A journey through life with rheumatoid arthritis.

Same old stuff…

Well, Arava did nothing and was not good for my

liver. I had to discontinue it. Now I am trying

sulfasalazine. It is also not good on my liver so I

am most likely going to be sent to a liver specialist.

I always hurt and I have a lovely new nodule on

my left inner wrist from inflammation. Yuck!!!

All I can do is keep going to doctors I guess. Camping and hiking season will soon be here so that will make me feel

better.

P.S. For some reason, the computer is acting up

with spacing on this page. Sorry if the message

does not look right.

Arava Update

One month on this stuff so far. I have headaches all the time. No difference in pain. Will try it until my next rheumy appointment in December. That is unless I continue with elevated liver functions (which I had prior to starting this drug). I will ask for a vitamin D check this week.  I really feel the need to not take all of this medicine. I cannot live without a liver but I can live even if I end up in a wheelchair down the road.

I nice fall hike through the turning colors of leaves will do me wonders right now. At least mentally:)

A New Medicine For Me

I am now supposed to start taking Arava. After looking it up, I am very afraid to take it. Anybody else out there had experience with this drug?

I still have to keep on doing the Plaquenil(400mg/day) and Naproxin sodium(1000mg/day).

The Daily Grind

I still hurt all the time and I am sick of it. I keep thinking if I ignore it it will go away but no such luck. I use this picture of a barge in Astoria, Oregon because I would love to be able to take all my weight and just float around painfree. At work I’m always moving then I don’t seem to mind as much. I love resting after working or in the evening to read or watch a bit of TV but this is when the most pain comes on. I sure can’t keep moving continuously to lessen the pain. I went on a 6 mile hike the other day and actually did better this time than when the RA was just starting out in my hands and feet. The pain is spread over my entire body now so I don’t just feel like ripping my feet off after a trek like this. I guess I will have to stick with “easy” hikes from now on until I can’t even do that anymore.

What worries me is the bump on the back of my head-a rheumatoid nodule I suspect and sources say it is rare that they occur there. It’s been there about 2 years never changing. But I have always had a lot of head trouble some it really scares me. When I was born, my head bled inside for about 2 weeks. I started having complicated migraines in my early 20s. They suck. They have the same symptoms as a mini stroke-parylisis on on side, trouble whith vision and speech. That lasts hours or even all day long then a terrible headache comes on where even narcotic pain killers do not help. I don’t know what to think about this dumb bump. I keep mentioning it to the doctors but so far nothing has been done about it, not even a look. I will insist on it at my next appointment.

Ah, I keep on looking at the cane selection in Walmart but so far have been too vain to buy one even just for home use. I will continue to use my walking stick, a tree branch somewhat the shape of a cane but slightly shorter than needed. It fits in with my home decor of the great outdoors so no one would suspect I use it to get around the house. Yeah, I am a stubborn fool:)

I’ve been hearing a lot about vitamin D. I must not be defficient in it or the doctor would have told me I guess. But I believe I am going to take a supplement anyway or just get that 15 minutes of sun per day. 

Also, I am focusing on yoga meditations to calm myself down at the end of each day. I am a type A personality and an introvert so it works wonders for me when I do it. Perhaps I brought this RA on myself by being a type A, not that I had much choice in the matter.

Nightshade Elimination

I have been informed that cutting out the nightshade veggies can relieve inflammation. These are tomatoes, potatoes, eggplant and a few more I forget right now. I am supposed to give these up for 6 weeks and see what happens. I have tried but I always forget and accidentally eat tomatoes.

Has anyone else had success with this?

Just Wondering…

Lately I wake up and go to bed thinking that this RA is a bunch of cr_p (you can fill in the blanks). I hate it and it sucks having to alter my entire life in pretty much the blink of an eye. I just got out of college when all this was placed on my achy, inflammed shoulders.  I have a young kid that doesn’t understand when I try to explain that there are just some things I can’t do like I used to anymore. I know God does not give us more than we can handle but come on! Couldn’t I have something else to deal with instead? I am already a strong person from life’s trials. 

I did relieve some of my stress by camping this weekend. I would camp forever if I could but I would starve to death since I do not eat meat. Anyway, nothing like waking up in the morning, crawling to the tent door to get out into the crisp morning air and then standing up, only to tip over because the feet do not work (It’s OK, not the first time this has happened so I knew what to expect.) Still, I had a great time.

Medication Blues

This past December, I was put on Hydroxychlor (generic Plaquenil). 200 mg a day. That was tried for 2 weeks. I felt no relief at all. This is a drug that needs to build up slowly anyway before full effects occur. Then the dose was upped to 400 mg a day. For one entire day, my body fell normal again! I couldn’t believe it. That was the last day I have felt normal. Ever since that one day, I have that crappy RA feeling in my skelton all the time. Plus the pains in various inflammed joints. I often describe the feeling as similar to the muscle aches of having the flu except my whole skeleton is achy in that way. Like it is going to crumble apart any time.

In April I was put on steroids to get the inflammation down and started Methotrexate, slowly the dose being inreased until I was up to eight 2.5 mg tabs per week. I still felt very little, if any relief. It was cold season anyway, so with even less of an immune system, I was always sick. Then it got worse.  I am highly prone to strep infections and even had been quarantined with Scarlet Fever as a teenager from a bout with strep. I fear a sore throat! Well, I started havinf throat trouble. It increaes as the weeks went by until one day I was crying from it. It felt like something was growing in my throat but nothing could be found, even by X-ray and going to the ER twice in one day. Negative for strep, lymph nodes not swollen, no sign of throat trouble-only the very real pain I was feeling. Like I was going to choke on something in my throat and it was slowly geeting larger as the hours went by. Everyone said it was not a side effect of the methotexate but I beg to differ now. I quit taking the stuff. Plus, I went to a third dr. and complained this time of a sinus infection to get antibiotics. Took the one day and my throat was back to normal. The after 2 weeks I started the Methotexate again and began getting a sore throat. I did not take the next weeks dose and the sore throat (meaning the sore whatever it really was) faded. I reapeted the same process again, and again the same thing happened. I no longer take methotrexate. and I will never try it again. I am solely on the Plaquenil now. I figure, even though it doesn’t make me feel any better at all, it may still be working on saving my joints from further damage since it is a DMARD (disease modifying anti rheumatic drug). I also take Aleve as a pacifier and money waster (LOL).

One day I was taking with the  lab gal taking my onthly blood samples. I told her about my crazy “throat” side effects. She said she had recently been in the ER for a similar feeling in her throat and they thought she was crying wolf too. She doesn’t have RA and wasn’t on Methotrexate for anything. She insisted on more testing at her regular dr. Turns out she has a thryoid problem and they need to do a biopsy type procedure on her thyroid.  I was thinking, maybe the darn methotrexate was aggravating my thyroid somehow. I will not try it again to find out!  I will suffer in pain until my next rheumatologist appt. in September.