New Question Regarding Procrit

[Caroline]

My Dad has been having his Procrit/Eprex shots every Thursday for the past 5 weeks. It seems to be working. His hemoglobin is rising slowly. I go over and give him his shot in the morning. By evening his feels stiff and sore and by Friday he cannot move, his joints are so sore. Saturday is still a bad day but he can get around a bit. By Sunday he is fine again. This has happened after every shot so far.

Have any of you experienced this? Does anyone have suggestions of what Dad can do before the needle which could help alleviate the joint pain. I plan to report his pain to the doctor next week when we go for a visit but I am sure that the Dr. will tell us that it is a side effect of the Eprex and not to worry. I don’t like to see my Dad miss 2 entire days of the week in excruciating pain, sometimes 3 days. Some days he cannot even get out of his chair. So…he takes lots of pain medication (Tylenol 2 and 3) to help ease the pain. I can’t see that he should be taking so much pain medication. Too much poison.

Thank you.
Caroline

[Jerry]

Caroline,

I have taken Procrit for over a year and I do not know if there is a significant difference between Procrrit and Eprex. But I have not suffered from the side effects you mention at all. Debbie gives me my shot, it stings a little and that’s the end of it. I went to the Eprex website and read their patient information form and it mentions joint pain as a possible side effect. I would certainly mention this to your doctor as soon as possible. I don’t know how old your Dad is, but I am 61 and in otherwise good condition. I just cannot believe that he should be having so much trouble. Good luck to you.

Jerry

[Jerry]

Caroline,

Sorry, I forgot this. You mention that he gets his shots on Thursdays. I take 60,000 units but I get it in shots of 20,000 every Mon, Wed and Fri. If he is getting a bigger shot once a week, I wonder if it would help to spread it out. Just a thought.

Jerry

[patti]

Caroline,

One of the side effects of procrit is bone pain. The bone pain typically only happens if the shots are working. Try having your dad take a regular dose (1000mg) of MSM 3 times a day everyday so that on shot day his body has a good amount of MSM in it. That might help alleviate some of the discomfort. Also, you can get some Tiger Balm patches in the health food section of Fred Meyer/Kroger. You can try putting a patch over the most painful parts of his body. The patches are about 6″x6″. When my husband has any pain in his body he slaps one of these on and is amazed at how well they work. They are natural and there are no contraindications with the procrit. Just a few things you can try.

Patti

[Caroline]

Patti and Jerry,

Procrit is the American name…Eprex is the Canadian name. It is the same drug.

My Dad is 79 years old. His kidneys are in bad shape right now. He has kidney stones which were supposed to be lazer blasted this past Monday but cannot be removed until he sees a Nephrologist about his high Creatinine levels and an Internist about his low Coagulation Factors. Other than that, he has always been healthy.

Dad gets 40 000 Units of Eprex every Thursday morning. That is a good idea Jerry. I will mention it to the Doctor next week. If he gets 2 shots of 20 000 Units per week, maybe it won’t affect him as drastically. The Eprex is helping alot so I don’t think the Doctor wants to take Dad off of it.

Patti…Dad takes Glucolsamine and MSN. I don’t know what dosages but I will check tomorrow when I go over to visit him. I have bought Tiger Balm in the little pot but I have never seen the patches. Good idea…I will check with a Health Food Store.

Thank you.

Caroline

[Jerry]

Caroline,

Good luck to you. I will be thinking of you both. I also have kidney disease which complicates my life too. I hope thay can do your Dad’s kidney stones before they cause him real problems. My creatinine is currently at 3.4 which is high but not yet dangerously so. My hemoglobin is now up to 12.7 which is the highest is has been in 2 or 3 years. As a result, I feel terriffic. I wish Procrit would work so well for everyone. Best wishes.

Jerry

[Caroline]

Jerry,

The Urologist figures that Dad has had these stones for well over 20 years. Dad often got twinges of pain over the years but it never lasted long so he never told the doctor until about a month ago when the pain kept him up all night and he was taken to hospital by ambulance. He has one big stone at the opening of each of his ureters. They inserted stents at each opening to allow urine to pass around the stones but it seems that the damage has been done. The weekend that they inserted the stents, they couldn’t blast the stones with lasers because there were no Techs working in the Laser Department on weekends so they rescheduled that part of the operation for this past Monday but had to cancel after they saw Dad’s last blood test results. There is a Nephrologist and an Internist involved now to try to get his kidneys functioning better before they blast the stones.

Then there is Dad’s scheduled Knee Replacement in February……….

He is fighting like a Trojan to regain his health.

2 questions for you Jerry if you don’t mind my asking….

What are they doing for your Creatinine levels?

Why do they want to change you to Aranesp if you are responding well to the Procrit?

Caroline

[Jerry]

Caroline,

I don’t mind questions at all. They are not really doing anything for my creatinine level beyond monitoring it every time I get my blood checked. My nephrologist (who is one of the best human beings I have ever met) says that I probably have 2 years or so before I have to consider dialysis. I have looked into the various methods of dialysis, but until we know what my health status is at that time, it is a waste of good energy to worry about it too much now. As far as the Aranesp goes, I asked the same question. The Dr’s opinion is that it would be even more effective for me. That obviously worries me a bit, but I am a gambler and if they think it is better to try it, I will. But, the final decision has yet to be made. I don’t know if you have followed my posts here, but I am travelling a lot in the next 3 months and I just don’t let this disease get me down yet. But, I know that I am blessed. I kiddingly tell people that if the Dr’s had not told me I was sick, I would not know it. (Not really true … when my hemoglobin got down to 7, I knew I had a problem). BTW, Debbie’s Dad (age 76)just had knee replacement surgery and cannot wait to have his other one done. My thoughts will be with you.

Jerry

[Sandy L]

Thank you everyone for sharing all this knowledge.
Caroline- how Dad is better.
Patti how is your MIL – waiting for an update.

[Caroline]

Thanks Sandi. I hope he gets better too. He is such a nice man and has always been so strong and active. Now he sleeps most of the time. I believe that he is in good hands though and he does too. He has lots of faith in his Oncologist. I think that will help him in the long run.

Jerry. Dialysis??? They haven’t mentioned that to us YET. Oh Boy, I never thought of that.

Some people respond well to replacements, others do not. Debbie’s Dad is one of the lucky ones. My Dad’s first 2 replacements were each a train wreck. The first artificial knee was 4 sizes too big. After 5 years of hobbling around on it, we finally went to another city and found an Orthopedic Surgeon who put in another size. That one never fit properly either but Dad kept it. Now, his ‘good’ knee is so worn out from carrying him all these years, he can barely walk so in February he is scheduled to have it replaced. God only knows how this one will turn out. Somehow I doubt that we will have it done in February. Dad has too many kidney problems right now. We need to take care of them first.

Caroline

[Jerry]

Caroline,

Good golly!! You would think that they could find a knee that is the right size. If that was not so serious to your Dad, it would be funny. Maybe find a third doctor?? I sure wish you a lot of luck and I did not mean to alarm you about dialysis, but I have been told high creatinine means kidney failure. Maybe it can mean something else too. I hope so for your case. Anyway, my thoughts are with you.

Jerry

[Bec]

Hey Jerry, I would have sent you a private message but I saw you were new and may be like me…computer illiterate LOL

Anyway..why did your Dr mention dialysis???

Did you start the aranesp??

My Dad is on procrit, has always had kidney stones, has already been on dialysis after bad heart scare but came off, and has been dx for five years.. He is maintaining with tx’s but keeps hoping

Dad’s Dr had mentioned aranesp.

Take care,
Bec

[dana’s mom]

Just a question for you all – is there a link between these kidney problems and MDS?

Thanks
Shirley

[Bec]

Hey Shirley,

I was thinking the same thing…
My Dad has been very healthy most of his life except for the occassional kidney stone that put him in bed.

Interesting…
Bec

[Caroline]

I was told that the kidney problems don’t cause the leukemia and that the leukemia doesn’t cause the kidney problems but that quite often when leukemia is present, some organs will be affected. In my Dad’s case, this makes sense. He has had sluggish kidneys for several years…we are just learning that now. In fact, he now has Chronic Kidney Failure and yesterday we met another Specialist who is now looking for ANOTHER type of kidney disease. I don’t know what disease the new doctor is looking for just yet. He will phone and tell me tomorrow when Dad’s blood test results come back in. Dad has low erythropoeitin counts. Erythropoeitin is produced in the kidneys. There is our connection. That isn’t the same for everybody.

Caroline

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