Good Doc Makes All the Difference

17 01 2008

I’m officially off of methotrexate. As it turns out I was really ill as I had suspected. The reason: Methotrexate poisoning my liver. In fact, i thought I was losing my mind – but I was right on target. i’m so glad I dumped my other rheumatologist. She was always so harsh with me. The new one is awesome! Read more on this post about my drama with prednisone – weight gain and exercise, fun with Jax & dogs, life at work, and “to yoga or not to yoga”, pancreatitis, and Brits are good, and hearing there’s no cure- but knowing it is true…  and my latest HEALTH REPORT: *(the doc) … HEALTH REPORT: *(the doc) He’s british which i love (obviously since my Jax is also). He was so thorough and methodical and explained what everything was including TNF inhibitors and even what is happening inside my body with RA. He did say that I don’t currently have a lupus diagnosis, but he feels that i do have a number of symptoms traditionally associated with lupus. He feels it’s because I have severe RA. The doc will start me on Enbrel as soon as my insurance clears it. I’ll take it through IV if possible so that I can be in the doctor’s face more frequently. i found that this is a good idea while you’re building a relationship with a new doc. Forget depression right now – I need to get on with my life. (BTW – stopping the methotrexate has given my pancreatic attacks a back seat thank god!!! It also has made my intrathecal pump useful again.  i was frightened I’d have to get the dose turned up even higher.  i love my pump!).

One crummy tidbit: the doc did say that I will get worse before better because the Enbrel will take time to work. he doesn’t want me on steroids since I gained 40 pounds over the past 5 months on prednisone. And due to above situation I can’t stay on methotrexate.

Prednisone/weight report: (see below for more) moon face fading (3 weeks off) but still have that prednisone double chin/weight not budging but eating nothing/was 135 now 173lbs/serious nausea caused by methotrexate. My weight has finally stabilized literally the day I stopped taking that damn steriod prednisone. (173 pounds)

MY COMPANY: Just wrapped for a client and working 14 hour days.  That is considered short for me actually… I’ve gotten back to work and am luckily starting an apprentice/intern tomorrow. This should help my backlog of work dramatically. I’ve got serious accounting and legal issues to sort out right away with my company paperwork. Running a company sucks when there’re all these health problems that’re more pressing. I think I missed a VIP tax day on the 15th!

LIFE/LOVE: Jax and i have begun volunteering for a dog organization (we can’t have dogs at our apartment. It’s awesome! i’ll get to walk dogs… or watch Jax walk dogs if I am doing badly. We missed couples therapy for 3 weeks in a row now by accident since i was so sick. This week we must’ve crossed wires since our therapist was out. There’s been an abso9lute lack of sex here – but if you knew how shit we’ve both felt you’d know why. No one is to blame this go round. I think Jax would agree. He’s been super sweet though and we’ve been very flirty w/ each other.

YOGA YES OR NO: Things seem a little bit better and now I was curious if I should begin yoga or some other healthy thing. I remember a post I made a little bit ago “to-meditate-or-not-to meditate…” I just don’t want some yoga teacher to get on my case and make me feel stupid for not being able to do basic exercises. I’m very competitive and might try to take on too much… But I’m also not losing any weight by exercising on my elliptical here at home. I’ve also heard it’s dangerous to lose more than 2 pounds a week due to toxins going into your body and then I’ve heard it’s okay to lose 20 pounds in a month (i wish). What is true?

This is a crazyyyyyy life. I can’t wait to feel like a normal human again. BTW – I’ve decided to do a blog where i respond simply to the types of searches people have made when they come across my site.  Since I do this site anonymously I can’t tell any of my friends about it.  But I think it would be fun to do a log entry where I respond to you on your topic searches and tell you what pages to go to for each item!  Fun! – Sasha.




4 responses

27 01 2008

what a GREAT idea! I surfed for a number of years before this RA became so fierce this past year. In fact, the last time I was surfing was feb.12th last year. Jax and I are going to join the YMCA to go swimming on Feb.1st (it’s in our calendar). I’m so glad you mentioned it. I’m really looking forward to swimming again. – sasha

22 01 2008

It took quite a while to feel well enough to be able to exercise. I did find that swimming was the easiest since it didn’t put any weight on my joints. I tried yoga, which helped, but I had to modify some of the poses because they put too much pressure on my joints. But try swimming. It is an amazing workout and easy on the joints. Good luck!

22 01 2008

Thanks so much for your post. I admit feeling sad when I read that you were still working on getting the prednisone off… although I have heard that to be true. Were you/are you able to exercise very often? You rock for writing in. Much appreciated!! – Sasha

18 01 2008

Hey, I was checking out other RA blogs on wordpress, and I found yours. I was diagnosed four years ago. I’ve done the Enbrel thing (it worked pretty well, but my doc moved me to Humira because he thought I could do better, and now I am!) and I am still on methotrexate and another drug called Imuran. Reading about your experience with prednisone really takes me back to when i was on it four years ago. It was amazing at first, till the side effects set in! I totally understand getting the moon face and gaining the weight. I am still trying to work it off! Enbrel really helped though, and I was off prednisone completely within four or five months. (It took a while for it to kick in for me, but I hear some people feel it within hours of taking the shot.) Anyway, I thought I would give you a shout out and say good luck! I hope Enbrel really works for you!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: