Thalidomide-Prednisone

[Beth]

My husband was started on Thalomid (100mg) and Prednisone (30mg) per day 2-1/2 months ago. He has not had any changes except slight lowering of RBC, platelets still marginal (59) and increase in WBC (1.78-2.8). His RBC/HGB has been low normal since Dacogen with WBC and Platelets the biggest problems since the beginning. All lines used to be low. Lack of sleep, shortness of breath, hyper, balance, dizziness, and leg cramps every night were his worst side effects in the beginning until the last week. Now those are better, but he is now somewhat weak, tired, irritable and tremors every 4-5 hrs.

He sees the doctor tomorrow and he wasn't pleased with how things were going at that time. Now I wonder if starting to taper the Prednisone would help some of these symptoms. It seems most people who respond to this regimen do so after three mths. Is that right? Any ideas? Is it worth a longer trial since some of the side effects are better? He has still been miserable until the last two days.

This is probably too long, but it is confusing as usual with this disease. Thanks for your input and support.

Beth

[Birgitta-A]

Hi Beth,
I will try to answer your questions about Thalidomide + Prednisone:
1 Tapering Prednisone: Prednisone can give lack of sleep. In fact many doctors start to taper Prednisone when it is combined with Thalidomide after 1 month. After 3 months the Prednisone often is stopped. I have asked my doctor if I can continue with 5 mg Prednisone since there are patients that have managed well with Thalidomide who have continued with a low dose of Prednisone.

2 Time to response: You are right about that most patients who respond will do that within 3 months but in many studies some patients respond later - actually a few patients respond when Thalidomide has been stopped after 3 months. "Five red blood cell responders showed hemotological improvement within 12 weeks of starting Thalidomide, two within 16 weeks and two at week 20, and one almost 11 weeks after stopping Thalidomide." http://onlinelibrary.wiley.com/doi/1...1.03204.x/full

Hope your husband is taking Vitamin B1 since that perhaps can prevent the nerve damage that Thalidomide can give. Then he could always try Magnesium for leg cramps.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, Thalidomide 4 caps á 50 mg/week since June 2010. Prednisone initially 20 mg/day (can't take 30 mg due to insomnia) now 5 mg/day. Tx dpendent since dx. No txs since Sept 2010 HGB about 13.0. Platelets up from 22 to about 100. Have been taking Neupogen 2 inj/week since Neutropenic fever 2007 and am now trying 1 inj/week for low WBCs.

[Beth]

Thank you so much Brigitta-A for responding and all your great information. You were very helpful and we did not even know about responding after stopping the medication. That is hopeful. I haven't searched the web sites you gave like we hoped to yet. A lot has been going on with us. His illness and mine are very debilitating right now and yet things keep happening that we have to attend to anyway. I'm sure you know what I mean.

Anyway, please forgive me for not writing you sooner and thanking you. We are so grateful for your help and hope you are doing well. I am so glad it worked for you. I'll write more after the next few days of a visit from family and probably have a few questions. At least he is sleeping better now.

Thanks,
Beth