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Colchicine treatment 11 years 9 months ago #390

  • jayner10
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Hi. I just wanted to let the ITP community know that the use of Colchicine has worked very well for me to control my chronic ITP. I have been suffering from ITP for 20 years now. I had my spleen removed 16 years ago, which did nothing for me, and have taken prednisone ( 125 mg to start then a slooowwww, gradual taper of 5 milligrams per week until my platelets drop to rock bottom again. ) This past 4 years I have only been free from taking prednisone for 11 days before my platelets crashed yet again and I had to begin my slow descent off of the drug from 125 mg. Weaning myself off of prednisone and responding to it generally takes a year for me. I HATE prednisone but have opted to take only this drug to control my ITP because the other drugs seem so toxic, with side effects that are still a bit too unknown for me to feel comfortable taking them. I have taken dexamethasone but that barely even bumped my platelets at all and then I crashed back down to the 1-3 thousand range, which is where I typically run. I take a maintenance dose of 5 milligrams daily to try and ward off the crashes in platelet counts, but this never holds me for very long. In fact, every year I ALWAYS have a platelet crash in the Fall, for some reason. I wish I could explain that, but cannot. Anyway, to get to the point, this November my platelets began to drop again and I had a count of 18. My doctor suggested I try Colchicine ( 1.8 mg ) along with 60 mg of prednisone ( low for me. I NEVER respond to prednisone when my counts are low unless it is at the 120 mg range or higher. And even then, it can take weeks for me to respond and my platelets come up. ) In 4 days my counts jumped from 18 to 252,000. I have NEVER had my platelets come up like this in 20 years. Amazingly, I am now taking 5 mg of prednisone daily with 1.2 mg of Colchicine and 2 months later I have never had a platelet count lower than 184. Usually I am in the 250 - 290 range. i know everybody is different and responds differently to the myriad of drugs now available for ITP treatment, but I would highly suggest discussing with your doctor the possibility of trying this treatment. The only side effects I have had from taking Colchicine are mild stomach discomfort when taking 1.8 mg ( 3 pills a day ) and a small amount of hair loss, which happens with prednisone and whenever my platelets are low. I do not know for how long I will respond like this to this drug combination, but after 20 years of riding the prednisone yo-yo rollercoaster, this seems like a dream come true. I just wanted to share this with everybody, even if just one other person might find this to help it will be worth it to share this suggestion. Good luck to everyone. I truly hope your platelets come up as quickly as mine have if you try this.

Jayne ( Finally, no more moon-face !!! )

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Re: Colchicine treatment 11 years 9 months ago #391

  • Ann
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I'm glad you've found something that works for you. Personally, it's not something I'm allowed to try because oddly, it's said to be too toxic. The most recent International guidelines say that the use of Colchicine is not justified. But I hope you have continued success with it.

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

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Re: Colchicine treatment 11 years 9 months ago #405

  • jayner10
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Hi, Ann.

In what ways ( symptoms ) was Colchicine considered toxic? At what dosage? I am interested because I have avoided other methods of treatment due to the long-term effects of these treatments. So little time has been invested in the new drugs and treatments available currently, and I do not wish to add this drug to that list. It is working so well for me presently. My mother is in her late 70's and is a retired registered nurse. She says she has known of people taking maintenance doses of Colchicine for Gout their entire lives with no contradictions. My dosage of 1.2 mg is considered a maintenance dose. However, you have brought up a good point and I shall be discussing my treatment with my doctor again at my next blood drawing. I did see the Blood Journal article prior to you sending me the link but also noticed that Vitamin C was on that list, as well. Vitamin C has never helped me either. I have tried that before. Could the lack of justification for treatment be due to the variable response to treatment that seems to be so prevalent in the treatment for ITP? Everyone is so different in their response to treatment. I also wonder if the toxicity reported involved possible other patient conditions/illnesses/drugs combined with the usage of Colchicine that could be a factor in toxicity? As patients, we are so at the mercy of our doctors and their knowledge of this disease. Any information you might have regarding Colchicine that is medically supported would be very helpful and welcome. It is just such discussions as these that help everyone to explore their options and become acive participants in the handling of this disease. I have had such low times with ITP. At times I have felt so alone and completely unable to control its' onset in my life. For 5 years I even chose simply to ignore the petichaea and bruising I was experiencing and chose to not treat it. I had no complications at all, but always heard that little voice in the back of my head whispering " What if...? " I am sure any and all of us with this condition may have been there before. So if anyone has insights, journals, information, etc. regarding Colchicine please send it along. And Ann ~ thank you for responding to my post. i had thought I had researched this drug pretty well, but I may just need to do some further investigation!

Jayne

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Re: Colchicine treatment 11 years 9 months ago #415

  • Ann
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I think it's because unlike with say, azathioprine and mycophenolate, when it becomes toxic in the body, instead of simply withholding the drug and having the body recover, it tends to result in death. The accidental mixing with other drugs, including some antibiotics is a concern and if that results in death then it's a good reason to avoid using it when possible. It also can become toxic in those who have renal or hepatic problems without knowing it.

"Of the 169 deaths, 117 were not reported as overdoses; i.e., the majority of reported deaths had colchicine doses within the therapeutic range of less than or equal to 2 mg per day."

www.fda.gov/Drugs/DrugSafety/ucm174315.htm

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