Saturday, July 31, 2010

Doctors, new meds, liver failure..oh yea! I have AS!

Monthly rhuemy visit was good. Didn't have to wait to long..let me say that I CAN'T STAND WAITING FOR HOURS...I do want good care and for her to take her time with me, but if you're that type doctor (which all should be) then plain ahead! She informs me that I'm the harder to treat AS patient. I'm not the mild case and I'm not the advanced case..the middle road case. The one that shows some things in the blood work, but not all..that shows little signs of inflamation but everything is HUGE/SWOLLEN...

Been on humira for almost a year why is it not working better. Is it the best drug for me? Do I need it?

On methotrexate as well. Same questions...

Let's figure out how to get your swelling down and the pain better. Sounds GREAT to me!!!!!!!!!!!! We're going to stop humira for a month--see if it's really doing anything. Ok, so let's see either I'll have no change or I'll get worse. Um excuse me..worse? Really? Why wouldn't I want to be in more pain than I am now. It's just time for me to move my daughter to school and get back in the school routine with the youngest. I can do this!!! I've wondered about the humira working as well. OK--I'm a go!

And we're going to see about adding 2 drugs for this month for pain and inflammation. This sounds like a good plan as well. Take diclofenac 2 to 3 times a day and darvocet for pain. Dr knows I'm not a pain med person. I try not to take any pain meds ever! But, for this month trying to figure out what is going to work for my AS...follow this plan. OK--follow the plan and figure out what works for my disease. Keep taking methotrexate (weekly injection), folic acid (pill daily), B-12 (weekly injection) and vitamin D (weekly pill to overload me with Vitamin D).

Thought I'd do a bit of drug research today. Now, mind you that I went to doctor on Thursday, filled prescription and added all the new meds. --what exactly is this diclofenac (sometimes reading the side affects cracks me up)-- Diclofenac belongs to a class of drugs called non-steroidal anti-inflammatory drugs (NSAIDs) that are used for the treatment of mild to moderate pain, fever, and inflammation. Well, okay that might just help. Then there's this......Combining NSAIDs with methotrexate (Rheumatrex, Trexall) may reduce the elimination of methotrexate from the body and result in increased side effects from methotrexate. WTH!!! Now, I'm freaking out cause, oh, yea!, metho injection was given YESTERDAY! And you know when you see that you click that word and see what the side effects are....
Using nonsteroidal anti-inflammatory drugs (NSAIDs) before or during methotrexate treatment may result in serious adverse events because NSAIDS may increase the blood concentrations of methotrexate. Combining methotrexate with drugs that adversely affect the liver or kidneys may result in additional liver or kidney toxicity.

I mean REALLY???!!!!

So, question today is...do I take the NSAID (diclofenac) or wait until Monday and call the doctor? Surely she knows the risk??.....ugh! Follow the plan for a month. We need to figure out my disease and how to treat it. I'M FREAKING OUT HERE! That's really why you shouldn't read the side effects.....can't sit or stand, causes diarrhea and constipation....some really make you LOL when you hear them. Others make you stop and say hmmmmmm

Ankylosing spondilitis....AS....
http://www.spondylitis.org/

Knowledge is key.

3 comments:

  1. Mel I am wondering when you read side effects and it says MAY cause - if the drug companies are not just CYA...so while I think knowledge is key sometimes you have to look at the whole picture. trust your doctor and ask lots of questions to your doc and pharmacy too. I am so sorry you are in so much pain. Praying for you today.

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  2. Yes, auntie Glenda, you are right! Always ask lots of questions!!! I did call the doctor today and double check. Funny--she says, where'd you hear that? I say, well, I read it...she says, that's misinformation! Take your medicine. OK-doc! Let's try this month and hope it works! I'm doing ok. I am in a great deal of pain, but I am trying to do a lot too...Aria leaves next week and I'm trying to get a lot done and helping her get ready. Love you!!!!

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  3. I have AS, discovered 19 years ago, and my spine is pretty stiff, but I was lucky and it's dormant now and I don't need any medication. (Actually I developed osteoporosis and take Fosamax.) I discovered Vitamin D 6 years ago and learned that it's for much more than bones. It is an immune modulator and may help prevent many cancers, heart disease, etc. The gov't recommendation for supplement and blood level is much too low. I take two 5,000 unit capsules a day and my level is 68 ng/l. How much vit D do you take weekly? You would benefit from 10,000 daily. (And make sure it's D3, not D2.) There is a wealth of good information at VitaminDCouncil.org and vitaminD.mercola.com Good luck.

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