Revlimid, Danazol and Me!

[cheri]

Met with the GI Dr and he said try Benefiber. Any testing will wait until things calm down. Not a good candidate for a colonoscopy, with a WBC of 1!The pains have greatly subsided, although the issues aren't completely resolved...

My Ferratin level was 6447 as of yesterday. That means it only dropped only 400-500 points after being on the Exjade, which I obviously can't tolerate for long stretches. Now what? Wheatgrass--can it give me a realistic reduction? How much to take...I still have some in the freezer--any negatives or contraindications with other meds?

Hopefully, Revlimid works and I don't need more transfusions....how long does it take for excess iron to clear on its own?

How soon before this high ferratin # creates problems?
I'm not sure I even want to know...but any warning signs would be good to know I guess....
Feel free to comment and thanks as always!

[Greg H]

Hey Cheri!

Glad to hear you are getting at least some relief from the GI issues.

The one good study on wheatgrass and iron chelation in MDS involved giving folks 30 ml (about one fluid ounce) of fresh juice daily for six months. Ferritin dropped from an average of 2,250 to 950 over six months.

The Eclectic Institute Freeze-Dried Juice pills supposedly include about one-ounce in three capsules. That's what I'm trying at the moment. Unfortunately, I haven't been doing it for long enough to be able to report any impact. I've also tried the wheatgrass powered and the pills made form compressed wheatgrass powder. I'm too cheap to order the frozen juice. :-)

I don't think there's much way that wheatgrass could hurt you.

As for how high is too high when you're talking about ferritin in MDS, I don't think anyone really knows the answer to that question.

Take care!

Greg

[Birgitta-A]

Hi Cheri,
Good that you at last are feeling better !

It can really be very difficult to reduce iron overload. As far as I understand wheatgrass can reduce copper - I think other iron chelators can do that too - so patients who take wheatgrass during long periods should have the copper controlled.

When I started to take Thalidomide (very similar to Revlimid) my ferritin value had increased from 1500 to 5600 in a few months due to txs every week. I was getting Desferal and a low dose of Exjade (500 mg/day) at that time. Then Thalidomide started to work and after 3 months I didn't need txs.

I continued to take Exjade. My ferritin value decreased and was 1500 two month after the last tx. One year after I started to take Thalidomide the ferritin value was less than 1000 and I stopped taking Exjade. The ferritin value continues to decrease very slowly and is now about 860. I have hemolysis (my red blood cells burst too early) and I think the high ferritin value depends on that.

Most studied on effects of iron overload show results for patients with the inherited disease thalassemia. These patients start with txs at a very early age and they get liver and heart problems if they are not chelated. In fact the majority of heavily transfused MDS patients failed to demonstrate significant cardiac iron deposition on MRI examination.
http://asheducationbook.hematologyli...009/1/664.full

Before iron damage the heart the liver tests will increase. How are your liver tests?
Kind regards
Birgitta-A