Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Hi Shirley, I have heard of penicillamine before in some of the amalgam discussion groups, and it was always mentioned with caution, as are most chelation agents. In my books on chelation therapy, it is also mentioned as a viable treatment for 's disease, and acts to grasp copper (which is toxic in large amounts) in a molecular vise and remove it from the body and brain. Chelating agents will work on most metals in our bodies, with the goal being to get rid of excessive mercury, lead, aluminum, arsenic, cadmium, and nickel, of which the body has a zero requirement level. These metals are toxic. So, yes, penicillamine is a chelating agent. Whether or not it will be good for your particular case is hard to say. I have seen both sides touted for scleroderma....that is, that penicillamine can help, and it can hurt. If you do an internet search, you will see the different sides. I will post the different articles I found. Patty ----- Original Message ----- From: SHG713@... faussettdp@... ; Sent: Tuesday, May 15, 2001 3:49 PM Subject: Patty Hi Patty, I've been taken off the antibiotics because of frequent BMs. I'm on something called Penicillamine. I found out it's used for arthritis and to remove toxic chemicals from your system. It's a chelation. I'm wondering what you know about it and if you know what the difference is in this and the chelation that you told me about. Or if anyone else knows anything about it. I know that this has a lot of side effects that I need to watch for, but that's all I know. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 oh Shirley I am soo sorry you are not getting better. I feel badly for you. We are all in this together and please let us know how we can help. Do you have a definite diagnosis of Schleroderma? hang in there honey Blessings, In @y..., shg713@a... wrote: > I wanted to let everyone know that I've stopped the Penicillamine. I've been > extremely fatigued on it and felt awful. My doctor also thought I should > stop it. I was hoping this would work for me, nothing seems to and I'm just > getting worse and worse. > > Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 Shirley, Penicillamine really isn't such a great drug, even for pts refractory to other treatments. I quite honestly am glad that you are off it. Have you tried methotrexate before? e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 Thanks for the reply. I haven't tried that methotrexate, have you? Did it do you any good? Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 Shirley, Yes, I was put on methotrexate last fall, and while plaquenil didn't seem to work, and prednisone helped a little bit, but with side effects, the methotrexate helped tremendously. It took about a month to kick in, but I noticed the effects it had, and that was increased energy, decreased pain, decreased fatigue, decreased swelling and achiness, and an overall improvement in my health. Many people get scared at the thought of taking methotrexate because it's a chemo drug, but the dose is tiny and not even close to what the chemo dose is. I was taking 10 mg once a wk, whereas the chemo dose is usually in the 30mg range. I started off at 2.5mg and gradually increased the dose. 10mg seemed to be the magic number. Some people get by on a smaller dose, others need a larger dose. But I found that it really helped. I was nervous about taking it, but my rheumy monitored my blood frequently as it can cause some dyscrasias (blood abnormalities). Hair can also thin, and I did notice that but nothing severe. My rheumy said that methotrexate is usually given to people who are refractory to treatment with plaquenil and prednisone, and typically they have good results. However, you do have to sign a consent which (as most consents do) states all the terrible, horrible things which can happen. But that is just to cover the docs butts. But side effects can always happen. GI upset can occur, diarrhea, blood dyscrasias, hair thinning and brittleness, and brittle skin. Again, I had none of these except for some hair thinning. In my opinion, it was worth it because it helped. But remember, it can take up to a month to work. And as with every drug, you must flush out your system with plenty of fluid so that it doesn't accumulate in your kidneys. If I were you, I would ask your doc what he thinks about trying you on that. If he was willing to try you on penicillamine, then he should be willing to try you on methotrexate. Penicillamine is a much more toxic, dangerous drug. Unfortunately, some docs are hesitant to use methotrexate for whatever reason. I have seen some docs refuse to try it because they had a bad experience with it, and aren't willing to take the chance again. So, ask your doc about it and see what he says. It might be worth a try since you said you're getting worse. Let me know what you decide and what happens. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 I'm going to ask him about it next time I see him. I might try plaquenil too if he'll let me. I'm a little worried about the hair falling out, I've had a big problem with that for a while and my skin is real thin now too. ....thanks to those wonderful implants. Are you still on it now? What else are you taking? Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Shirley, I stopped taking the methotrexate before my explantation so that it woudn't impede the healing process. And I've been off it ever since, which has been since late January. I'm currently not taking anything now as my health has improved so dramatically. However, I do take a multivitamin, MSM, malic acid, a B-stress vitamin, and glutamine. I swear they have made all the difference in the world. Plaquenil is a very good drug, and has been around for yrs. Very few people experience side effects, but it too can cause hair thinning. Unfortunately, most drugs are going to have the potential for side effects. You also will need to sign a consent to take plaquenil. Your doc will probably prefer to try plaquenil before starting you on methotrexate. But in my opinion as a nurse and a pt, both are excellent drugs and can greatly help people with autoimmune problems/connective tissue diseases. However, they are not without risks, and everyone responds differently to them. But they would be worth a try in your case. e Quote Link to comment Share on other sites More sharing options...
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