Still on the steroids?

I've been on prednisone since August 12th, 2015. My count drops when I get down to 10mg. Anyone else have thus problem? I want off of the steroids, but I'm breast feeding and don't want to stop. If I change my treatments I won't be able to breast feed. My last platelet count was 20,000. My doctor has also mentioned a splenectomy so I can continue to breast feed.. I'm so torn. Why does. this damn ITP have to be such a challenge?!

7 Replies

  • Look for functional medicine consultant in your area. And ask your hematologist if immunosuppressants can help for time being. My experience with allopathy is very bad..splenectomy is not a sure cure of ITP so think many times b4 removing the spleen. Don't give up, you are a mother now, you have to live for your kid if not urself. Please t c

  • I won't do the splenectomy, because I have two small boys I have a 20 month old and a 14 week old. I would be sick all the time from the bacteria my miniature Peachtree dishes would carry around. I would like to start something else that safe while breast feeding though, because the steroids have so many awful side affects!

  • Meet any functional med consultant or ayurvedic consultant in your vicinity please.. They can at least will provide to handle side effects and later on cure...that's what I m trying.. Though I back on steroids as platelets fell to 5000 this Sunday...gums r bleeding badly... But my 3 yrs of exp with allopathy says that for critical time follow it, but simultaneously try alternative medicine which ever u can trust... Functional medicine, ayurved, Chinese, homopathy...

  • Prednisone does pass through the milk supply so you may want to consider that. I took prednisone while pregnant (last 5 months) and now attribute some things my daughter has to that. Nothing terribly bad. Just consider your health and taking care of you to be around for your baby.

  • My hematologist, and the pediatrician are both aware of the things happening. I was told if thesteroids to go back up to 60mg to discontinue breast feeding. So far he hhasn't had any negative affects.

  • I read that if you can stay at 5 mg of prednisone the side effects are very minimal. I'd rather go there than to all of these other drugs the doctors are trying on us. They are not drugs for ITP but are being tried on ITP because they have no drug that is specific to ITP. I have only been on prednisone and I have read about so many people who have tried many of the other drugs being offered that don't work long- term with horrible side effects, too. Some even worse than prednisone-------leaving damage to ones major organs, i.e., liver, kidneys, etc. there isn't a "good working" medication for ITP. The doctors are simply going around in circles! Eight years ago I went for my yearly checkup and the dr discovered my platelet count was at 34,000. They did nothing about it until I was in Mexico on vacation when my platelets dropped to 23,000. A doctor in Cabo put me on 50 mg of prednisone and backed me down to 10 within two weeks when I returned to the states. I have been on it ever since. I have my platelets checked about every two weeks unless I have symptoms. One of my hematologist so decided that I should have my spleen out a few years ago. It did no good!!! I go anywhere from 30 mg down to 5 mg. I do now have osteoporosis, have had cataract surgery, I have very extreme thin skin---- especially on my lower legs where I have multiple large bruises and continually get more. Every time I brush against anything. I can't even get my stockings or jeans on without bruising. I even get them when I'm lying in bed if I move the wrong way ----from rubbing against the sheets. And my skin is untouchable as it is soooo painful. And I often get bruising on the bottom of my feet after using my treadmilI or just taking a long walk. I have been to 4 different hematologists, internists, dermatologists, naturpathic doctors and to this point no real solution has been offered to any of my problems. I also have to have my teeth cleaned four times a year as a precaution to decay. I have tried papaya leaf extract, Chinese tea, herbal concoctions put together for me and still go on just the same. My platelet count seems to be worse lately. Have been down to 4,000 and had an IVIG and two weeks later down to 3,000 and another IVIG. I an presently on a 15/20 mg routine and see my hero on the 30th of this month. We are suppose to talk again about trying some other medication. I can hardly wait! Not! Well, enough rambling. Now I am ready for a nap!

  • Wow sorry to about your adventure thats a lot and my doctors are mentioning splenectomy reading your story i see that it doesn't work i hope theres something that can help the both of us. Did you have these problems after your splenectomy?

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