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Posted 10/8/2013 6:17 PM (GMT 0)
I've been lurking here for a bit and have decided it's time to introduce myself. My name is Carole, I'm 48 years old, and I was diagnosed with RA in April of this year. My primary care physician actually thought it was RA, but then back-tracked because I tested negative. (She now knows that some 20% of patients don't test positive, especially early on.)

Primary referred me to a rheumatologist who diagnosed the RA and put me on methotrexate and prednisone. She added Sulfasalazine a few weeks ago when I had a flare. The flare was mostly suppressed by taking 5 mg/day of prednisone for 10 days, but I still had some pain/achyness, so she added the sulfa drug. It was a pain getting the pharmacy to fill the scrip; they insisted that I had to stop the metho and I insisted that my rheumy wanted me on both drugs. They finally made contact with the doctor's office and found out I was right.

I've been looking for a local support group, but it seems there's nothing here on the east side of Washington state. It's nice to find an online group that is so supportive and caring. I've also spent a lot of time reading RA Warrior's website and have found a lot of helpful information there.
Posted 10/8/2013 7:30 PM (GMT 0)
A little more information -

The sulfasalazine seems to be helping; I've been sleeping better and not waking up with aches at 2am. However the weather is starting to change here and it's going to be a long winter. I woke up this morning with pain in my hands and feet.

I don't have any questions right now, I just wanted to say hello.
Posted 10/8/2013 7:58 PM (GMT 0)
Hi Carole,

Welcome to healingwell.  I'm sure others will jump in.  I'm surprised that your pharmacist wouldn't know that methotrexate is often paired with other drugs to control RA?  Both methotrexate and sulfasalazine, though, can take several weeks to build up in one's system.  I guess it's different for everyone, though.

In any case, I hope you find healingwell a welcoming place.

Elcamino

Posted 10/9/2013 2:23 AM (GMT 0)
Hi Carole,

Welcome aboard! I am on the wet side of the state and I know what you mean about support groups. They are far and few between but the good news is that this board is relatively active and there are a great group of people here. I have found it to be a great resource.

I was also treated with Sulfasalazine and I had total remission on it after about a year. I was able to stop medication altogether for another year or so when I had a bad flare and on taking it again it did not work. I did have some side effects on it. I felt weak strength wise. My skin had a yellowish look to it as well as the whites of my eyes. Nothing terrible but enough that I noticed it especially in the winter when the sun is at a premium.

I hope it works as well for you as it did for me. RA can be a real booger to deal with and its such a relief when a medication works. Take care and God Bless, -Don
Posted 10/9/2013 5:06 PM (GMT 0)
Thanks for the welcomes, Elcamino and Don_D.

The pharmacy said the computer shows a contraindication re. taking metho and sulfasalazine. With some Googling, I found that the sulfa drug increases the level of metho in the bloodstream, and the pharmacy was worried about liver/kidney problems. The rheumy's office assured them that they are testing my levels frequently and I finally got the meds. (It "only" took a week.)

I take the sulfasalazine about every twelve hours (two pills/day) and I have noticed the "metho taste" in my mouth increases immediately after taking it. Thank goodness for Altoids and York Peppermint Patties!

It's good to hear about someone having success with sulfasalazine. I started on it September 18, so I'm not sure if it's working yet.
Posted 10/9/2013 11:56 PM (GMT 0)
If I remember right it took about 3 months or so for it to fully kick in for me Carole. -Don
Posted 10/14/2013 6:30 PM (GMT 0)
Thanks for letting me know, Don. I think it's helping, but it seems to be one step forward and two steps back just like everything else with RA.

I saw on another thread that you're having a hard time. I hope you get through it and back to your motorcycle project soon! What kind of motorcycle, by the way? My husband has a couple of mid-70's BMWs.
Posted 10/15/2013 12:54 AM (GMT 0)
I talked with my Wife about when I was on Sulfasalazine and she remembers that it took some time to kick in as well and wasn't super smooth maybe 4-5 months before I really was consistently feeling better. I had some flare ups but they were relatively mild. Hang in there with it. It's a pretty mild medication so far as side effects if I remember right which is always an added bonus for us.

I'm doing alot better than I was, I am just wistful for the days before RA. Having a ton of energy and drive to do things is something I really miss. It's just a day by day thing though so maybe I'll feel better the longer I am off the prednizone.

Right now I am working on a little 71 Honda CB175 that I have been trying to get running smooth and fix up to put around on for my Wife. I have had a bunch of bikes over the years but no BMW's. My buddy has had several though. Great machines. I've ridden Guzzi's though and they are a close cousin :) I'd love to make a small bore cafe out of this Honda but I'd never be able to ride it with clip on bars. Wait, I said this is for my WIFE! :)

I try to commute on my daily driver which is a Hardley. I know,I know. Please don't make fun of me but there is a certain allure to 50's technology after you have owned one for a while. It's actually been a really good bike and given my RA and hands and feet not being in the best shape it actually works really well because it is pretty comfortable to ride. It's Kind of like using a club to thread a needle or something. There is no precision riding involved, just point it in a direction and bang through the gears any way you can.

Hang in there! -Don
Posted 10/15/2013 3:48 PM (GMT 0)
It's good to hear that the Sulfasalazine can take time. I'm glad to be on meds that aren't causing me a lot of side effects, but it's hard to be patient while I wait to see if they work.

The Honda sounds like fun. I have a '75 Suzuki GT250 - it's a twin two-stroke and really fun. However it's also really temperamental and not running right now. My husband is having some health issues and doesn't do much mechanic work anymore, so it's set aside for now. Nothing wrong with a Harley, by the way. When I took the MSF course, the instructor pointed out that the more motorcycles on the road the better!

Have you ever watched "Long Way Round" or "Long Way Down"? Husband and I are watching "Long Way Down" on Netflix and really enjoying it.

Post Edited (Carole_D) : 10/15/2013 9:51:16 AM (GMT-6)

Posted 10/22/2013 3:58 PM (GMT 0)
Thanks again for the welcomes.

Just a quick update - I went to the rheumatologist yesterday for a checkup and told her I was experiencing a lot of pain in my hands and feet. She's pretty sure it's a flare, so she put me back on prednisone for a short time (10 mg/day for 5 days, and then 5 mg/day for 5 more days.) I took my first dose last night and feel like my old self again. Which is good and bad; I hate the side effects, but it's great to have some energy again.

Also, my rheumatologist apologized for the mixup about getting the sulfasalazine approved. She thought the medical assistant was going to call the pharmacy and the MA thought the rheumy was making the call. The office has changed their procedure for leaving each other notes so this won't happen again for any of their patients. :-)
Posted 10/22/2013 6:15 PM (GMT 0)
Sure have, my summation of both is that Charlie would be much more fun to hang out with :)

Great movies, I wish I could do some of the longer rides that I read about. I have been able to do do a few through Idaho, oregon etc. I camped and it was a blast. Unfortunately I have not been on any overnighters in the last couple years. Job changes and health issues have taken priority. Also, my wife doesn't ride so I don't like taking time away from the family to do it.

Glad to hear you are doing better. Prednizone is a hell of a drug :) -Don
Posted 10/23/2013 1:27 PM (GMT 0)
Carole, welcome to the site! I am also new to the site but it has been such great help! I am on plaquenil and prednisone for about 2.5 months now. I am very allergic to sulpha drugs and not sure what my Rheumy is going to do next. I had a severe flare up this past weekend and my understanding is that with the weather getting colder now it will be tough for all people with RA. I am learning more and more everyday about this disease and so thankful for all of the people on this site! I hope you have as much help here as I have! Good luck with all of your pains and flare up. I look forward to the day that I hear .....REMISSION!

God Bless!

Tammy
Posted 10/23/2013 1:38 PM (GMT 0)
Good to hear your meds are working for you...Sure hope the sulfa antibotic helps make sure to drink plenty of water with that...the sulfa antibotic therapy is old school stuff, my doc tried me on it but, I just couldn't tolerate it...Maybe ask if you should get a hand mri? I'm also zero negative with nothing showing up on bloodwork, However a mri was done and it showed damage in my right hand, so now I have yearly hand mri's to check the progression...
Many well wishes...
Posted 10/23/2013 3:52 PM (GMT 0)

Don_D said...
Sure have, my summation of both is that Charlie would be much more fun to hang out with :)
...
Glad to hear you are doing better. Prednizone is a hell of a drug :) -Don

Charlie is definitely my choice to hang out with!
Posted 10/23/2013 3:54 PM (GMT 0)
Thanks for the encouragement, TammyRA and Chartreux.

I hope the sulfa works, like everything else with this condition, it's "wait and see".

Chartreux - I have had xrays of my hands and feet. What kind of information would an MRI add? My feet show signs of osteoarthritis, but neither my feet nor hands showed any damage from RA.

eta: I've been joking with my very pregnant coworker because I see her in the bathroom all the time, so I think I'm drinking enough water... smilewinkgrin

Post Edited (Carole_D) : 10/23/2013 10:25:28 AM (GMT-6)

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