Treatment plan

[breesie]

treatment plan

I was on Remicade from early 2008 until September of 2010. I had a severe reaction to the last infusion. I'll spare the gory details (that would be a whole other post). Basically, I had to see a neurologist, and he says I can never have biologics (humira, remicade, tysabri) again.

I saw my GI doc in October 2010, and she wanted to put me on azathioprine. I was concerned about going on such a strong medication, and tried to discuss other options with her. She was not open for discussing the plan...she basically says "this is what we will do and I don't want you to question me". So, I requested a second opinion.

I had to jump through hoops with insurance and doctors before I was "allowed" a second opinion, it took me until February to get it. The second GI agreed with the first one (that I should take the AZA). He also put together a detailed treatment plan...
1) do a 12 week trial of azathioprine
2)if the aza did not work, or if I didn't tolerate it, then go to methotrexate 3) if the methotrexate doesn't work, consider Tysabri (which is not an option, because the neorologist won't allow it)

I live over 3 hours drive from the hospital where my specialists practice. In the time that all of this shuttling back and forth between specialists occurred (September through early April), my doctor at home (primary care doc) put me on Pentasa. Beginning about mid December, I started to feel better than I have felt in a couple years. The Pentasa seems to be working. I want to stay on the Pentasa. But the GI says that Pentasa doesn't have a good track record for maintaining remission.

I gave in to the GI doctors order, and started the azathioprine about 10 days ago. Starting about 2 hours after my first dose, I have been in extreme pain (joints and muscle), nauseaus, vomitting and extreme fatique. I can barely get up an down the stairs in my home.

I finally talked to the GI today. (I had called to report my symptoms 3 times in the past week, and never got past the nurse) She said to stop the azathioprine. Now she wants me start methotrexate. I tried again to discuss the option of remaining on the Pentasa, then adding something like methotrexate if I have a bad flare. She just will not discuss the issue with me, and she doesn't seem to want to answer any questions. I feel like she just wants me to follow her blindly, without question.

I am frustrated, and scared. (and probably a little angry) I am really not looking forward to having shots once a week, and am more than a little concerned about side effects with methotrexate.

I guess I am looking for opinions/advice. I just don't know what to do. I feel like if I refuse the methotrexate, my GI doc will refuse to treat me. But I feel strongly that I would like to try staying on the Pentasa, and see how it goes.

Thoughts? Anyone? I would appreciate it very much!

 

[scoutfinch]

You need to find a way to communicate effectively with your doctor. Why is she refusing to discuss the issue with you? Just going off of what you have posted it seems like she is trying to put the disease into remission with the immunosuppressants. It's great that Pentasa relieves your symptoms - and I don't see why you should stop taking it when it's working for you - but it might not be doing anything toward putting you into remission.

I'm kind of surprised that you are apprehensive about azathioprine being a strong drug when Remicade is a strong drug as well.

 

[ameslouise]

Stand your ground. You know your body best and if you feel okay on the Pentasa and are willing to "risk it" (as the doc sees it), then that is your right.

In my experience - I had no side effects with Humira but TONS with Metho. I felt HORRIBLE for months. There are several people on here who have used it for years effectively, but just as many that have stopped taking it due to the side effects. Not to scare you about it, just sharing my experience. The side effects for me were fuzzy head and fatigue - both were almost debilitating. Felt like I just wanted to shake the cobwebs and go to bed for four months.

I'm with Scout on the communication thing - When you do finally speak with your doc, tell her that you need to find a better way to get to her directly than having Nurse Ratchett monitor your calls and decide which ones she lets thru.

Good luck- Amy

 

[saltimbanc0]

The trouble with things like aza and metho are they take a long time to work - 8 weeks+ before any effects are expected. I would certainly say they are a weaker and possibly for that reason safer option than biologics but that doesnt mean people cant and dont have severe reactions to them.
If you are having any results with Pentasa it is stupid for them to consider taking you off it, it is a relatively cheap and low risk drug so they should continue it for you even if they plan to run something else as well if it has any positive effects.

You might want to look into therapies like LDN if you are worried about side effects but it doesnt sound like your current team will be open to things like this...

Keep on the pentasa though!

 

[tmgread]

I have been on just Lialda for over a year, and it is working for me. If the Pentasa is working, I would stick with it.

 

[Eve_L]

I would agree with everyone else. I think you need to speak with your doctor and find a way to talk to them without them just telling you what they think and thats the end of it. I really dont understand why, if something is working for you, you cant keep on going with it.

I really hope you can sort this out soon xxx