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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> $hit...bad news for me and Kudzu
(Message started by: Lizzie2 on Oct 14th, 2007, 11:24pm)

Title: $hit...bad news for me and Kudzu
Post by Lizzie2 on Oct 14th, 2007, 11:24pm
So I am suddenly nearing the end of my bottle of Kudzu, and I was just looking up where to order it online, since this bottle is leftover from the time I tried it back in early 2005.  And I came across the fact that people on Methotrexate should avoid Kudzu.  So I googled it, and came across a post that Jonathan (Floridian) had made HERE about that interaction and I had even commented on it!  Of course, this was before I was taking methotrexate....

I didn't even think of this when I restarted the Kudzu.  The Kudzu is actually helping, but I guess this means I have to come off....  I'm probably grasping for mega straws here, but there isn't anyone here who has any more info on this combo, is there?

This sucks.....big time.......

Title: Re: $hit...bad news for me and Kudzu
Post by Miz_D on Oct 14th, 2007, 11:48pm
Hi Lizzie2,

I don't have any knowledge to share on this but I wanted to tell you that I'm sorry about the Kudzu. I hope, if its working for you, you find a way to continue taking it.

Best wishes for lots of PF time!

Danielle

Title: Re: $hit...bad news for me and Kudzu
Post by Lizzie2 on Oct 15th, 2007, 12:02am
Thanks Danielle,

Wish I could continue taking it.  I have chronic CH as well as a chronic migraine known as New Daily Persistent Headache, which is the most treatment resistant of all headache types, and the Kudzu actually helped both.  I have only had a very small handful of things help both, and in my history, every time something helps, I have something bad happen with it.  This is no different, but getting even more frustrating....almost as if fate doesn't WANT me to feel any better, some days.

The studies in rats with methotrexate (a chemo drug, in my case used for rheumatoid arthritis) and Kudzu showed that the rats died at a rate of like 57%, which is obviously a bad thing.

My own luck seems to be in that nothing bad (grossly) has happened to me, in the 2 weeks I've been back on Kudzu.  Tonight I was going to do my 2nd shot of Methotrexate since going on Kudzu, but I've put it off for maybe a day or two until the Kudzu is back out of my system, at which point I'm sure I'll be seriously feeling like crap again.

I tried to find something on the internet about humans taking Kudzu and MTX and being fine with it, but there isn't anything out there.  After it killed over half the rats, nobody would dare test it on people.  Guess I inadvertantly tested it on myself the last couple of weeks...  <sigh>

Thanks anyway for the words of encouragement.

Was already going through a pretty bad period of depression, and this most certainly does not help....knowing that by tomorrow, I'll be in severe pain again.

I went to my neuro last week, who is one of the top headache specialists in the world, and there were 2 visiting headache specialists for London, and they feel that hands down the next best option for me is the Occipital Nerve Stimulator Implant.  I went for consultation on this in early 2005, and was told I wasn't a good candidate, but now things have changed and the old reasons don't hold true.  I was just hoping, however, that the Kudzu would work for me again and that I could put off any last ditch efforts to control both my chronic CH and migraine.  It is a daily struggle to keep going with all that pain, and I was so excited having found something that seemed to help a little bit.

Guess this would pretty much make anybody more depressed....

Take care,
Carrie

Title: Re: $hit...bad news for me and Kudzu
Post by sandie99 on Oct 15th, 2007, 2:10am
Carrie... [smiley=hug.gif][smiley=hug.gif][smiley=hug.gif]

I'm so sorry about that.

PF days,
Sanna

Title: Re: $hit...bad news for me and Kudzu
Post by Mudflaps_Melissa on Oct 15th, 2007, 12:59pm
That's too bad Carrie as it sounded like it was starting to work for you.

If it were me, I'd be deciding which is worse, my CH's or my RA.  I don't have RA, so I don't know what it's like, but guess you gotta do what you have to.

mel

Title: Re: $hit...bad news for me and Kudzu
Post by Lizzie2 on Oct 15th, 2007, 8:06pm
Thanks Sanna and Mel,

Mel - seeing as when I had the flareups from the RA, I was unable to move my hands or walk on my own, and had to spend several nights on my parents' couch because I couldn't take care of myself or go upstairs, I think the RA wins out in terms of which treatment I need more right now.  I don't just have arthritis in terms of "ow this hurts, I'm kinda stiff..."  It all out stops me from moving - almost like being a frozen statue.

When my first flare developed, I was actually working 3 12's in a row, and at first I thought I was just in pain from working a lot.  But then, my wrists started swelling, and I was unable to open bottles, and then unable to open tubing, packaging, or any of the things we have to do.  And then after the 3rd day, I ended up being unable to walk.  It happened really fast.  And despite having AVN and not being allowed steroids anymore, I had to take a steroid taper to get out of the flare.

The CH and daily migraine are more debilitating to me on a daily basis, but when those RA flares hit, they knock me out for days at a time - unable to work even if I wanted to push through the pain like I do with my headaches so much of the time because I have no other choice but to work.  So unfortunately, my choice is there in front of me..... :(

Guess we'll see how it goes, but it is definitely a loss to me.  I am just frustrated because it seems like murphy's law is a freaking constant in my life anymore.

Thanks for the support....

Hugz,
Carrie

Title: Re: $hit...bad news for me and Kudzu
Post by cash5542 on Oct 15th, 2007, 8:42pm
I'm sure if you could, you would have but is there a possible other medication other than methotrexate? When we were trying to get Lisa off of prednisone for her asthma we considered it but it was a pretty scary drug to consider. I'm sure you have covered all of your possibilities in which case I can only give you my hugs and support. I hope you can find the right combination to give you pf days!

Charlotte

Title: Re: $hit...bad news for me and Kudzu
Post by Mudflaps_Melissa on Oct 15th, 2007, 10:24pm

on 10/15/07 at 20:42:52, cash5542 wrote:
I'm sure if you could, you would have but is there a possible other medication other than methotrexate?

That's a great suggestion!  

Carrie, sounds like that metho stuff is some nasty ^*%$.  

Sorry again, hope things turn around for ya. :-/

Title: Re: $hit...bad news for me and Kudzu
Post by Lizzie2 on Oct 15th, 2007, 10:31pm
Thanks again...

Actually I have had very good luck with methotrexate.  The only side effects I get from it are nausea/vomiting and some increased fatigue the day after I take it.  I haven't had many flares since I started taking it, and in some cases it has given me some long term energy back - although I'm struggling a bit more with that right now.

I have discussed with my neuro actually at length about what he thinks of switching to drugs like Enbrel for the help of headaches, but they feel that I should stick with what is working for the RA and not mess with it lest I get the worst of both worlds.  I do see their point...

If I were to switch to something, I would probably do Enbrel or something like that.  I had planned to ask my rheumatologist what she thinks when I see her next week.  Not sure if I'm going to tell her that I took the Kudzu before finding out it interacted with the MTX, since I should know better than to just take stuff while on MTX, but I might because I don't know how else to get across that it was helping on some level.

I'm very lucky that I have not had the bad effects that can happen on methotrexate, and the stuff has done well for me.  But I certainly plan to discuss any further options at my appt next week.

Hugz,
Carrie :)

Title: Re: $hit...bad news for me and Kudzu
Post by Rosybabe on Oct 16th, 2007, 12:42pm
Wishing you lots of pain free time, headaches and RA both  :). Hang in there Lizzie, you can do it!

                              Hugs

                                          Rosy.



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