Ernie Posted April 5, 2006 Report Share Posted April 5, 2006 Hi,I got my first shot of Procrit 2 weeks ago. The first time I had a migraine for 1 day. Last Thursday I got my 2nd shot and I got a migraine 2 hours after and I still have the migraine today. I called the nurse on Monday and left a message and I did not get a call back.I have my 3rd shot scheduled for this Thursday (the nurse is coming to my place) but I wonder if I should postpone taking it. So far, I have had no blood test to control my hematocrit.Do you have any idea what are my options?Did any of you who are taking Procrit or who take it had Migraines with it? How long did it last?ThanksErnie Quote Link to comment Share on other sites More sharing options...
lalalisa Posted April 5, 2006 Report Share Posted April 5, 2006 Ernie,Are the migraines new for you? If so - this sounds like you could possibly be reacting to Procrit. I'm on procrit as well and have had some migraines over the past couple of weeks but this is fairly normal for me. I got a migraine the day before I started the Procrit which I was glad about because I probably would've assumed it was from the Procrit if it had been the next day. I wish I had some more answers for you.Please keep us posted about this.Lisap.s. If you ever want to ask me any Procrit questions feel free to send me a message as I have had some side effects. Quote Link to comment Share on other sites More sharing options...
corina Posted April 5, 2006 Report Share Posted April 5, 2006 ernie,i don't have an answer for you, i just want to let you know that i'm sorry about the migraine and i hope you will be doing better soon!corina Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 5, 2006 Author Report Share Posted April 5, 2006 Hi,I did no have a migraine for over a month before I started the Procrit. The pharmacist told me it is a side effect from the drug. I wonder if I should half my dose or just skip this week's shot? Quote Link to comment Share on other sites More sharing options...
kmpower Posted April 5, 2006 Report Share Posted April 5, 2006 I am sorry you have been having migraines from the Procrit. I know you have been looking forward to some improvement with the POTsy symptoms.Not to be simplistic, but sometimes I wonder why certain reactions occur with certain medications. Two things I know about migraines is that some people are "miraculously" helped with CoQ10 and/or riboflavin. Maybe the drug uses up these nutrients during its action or metabolism. Maybe adding them will help you tolerate the Procrit.But your question about getting a blood test is important, too. You would at least want to know if it is doing its intended job.Good luck.OLL Quote Link to comment Share on other sites More sharing options...
Roselover Posted April 5, 2006 Report Share Posted April 5, 2006 Ernie,I think I'd encourage you to push to get an answer from the nurse or doctor. It's so frustrating when we need answers like this - need to make informed decisions - and we can't get answers! I wish I had experience to share with you!~Roselover Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 5, 2006 Author Report Share Posted April 5, 2006 Hi,Today is the first day I don't have a migraine since I got my Procrit. I called the doctor's office again this morning and he won't be in before tomorrow morning. I don't know what to do because I have my shot at 10:00 a.m. tomorrow. I wonder if I should just postpone or ask to have half the dosage.Thanks Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 5, 2006 Report Share Posted April 5, 2006 Ernie, it may be like other drugs, you will get used it.I have a friend on remicade and it always gives her a headache, but she says it's worth it if she feels better overall. I would talk to the nurse giving the injection and see what her experience with patients are. feel better, morgan Quote Link to comment Share on other sites More sharing options...
Patricia Gallup Posted April 5, 2006 Report Share Posted April 5, 2006 This may just be a side effect, HOWEVER, if there is a history of stroke with your, or your family, you NEED to have your counts checked, and see if they aren't going too high, too fast. My daughter had migraines/headaches with one shot per week, they cut her dose, and she self administers twice per week, and her dosage is adjusted as need be. There is a history of stroke in my husband's family and she must be monitored often to ensure her counts stay in the "high normal" range, or she will be taken off. It is well worth the constant monitoring and adjusting for her to have this drug.I would definitely speak to your doctor before taking another full dose shot. I hope they don't give up because of this, they should find ways to work around it, as they did for my daughter. Hope your headaches improve, but please be careful with them. Not trying to alarm, as the danger is probably not "truly" emergent, however too many red blood cells are not good over time. My daughter's doctor does NOT want her to have headaches, or to be notified immediately if she does, and with the "right" dose, she never does. This is NOT a symptom that you should deal with or get used to for this particular medication, this symptom usually signifies too much procrit=danger. Since it's happening so early, I would highly suggest a dose change, at the very least a check of your blood counts. You DON'T need to feel this way Ernie, they should be helping you, low and slow dosing is how my daughter's life was changed! Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 5, 2006 Report Share Posted April 5, 2006 Ernie,I am thinking that Steph had this problem the first go-around on Procrit, and then Dr. G did something to readjust it or take her off and start over and then that is when it became her mircale drug...I don't know if she posted it here or on NDRF over the years....maybe you could PM her, I am sure she would be happy to help you out! Sorry, I am not of more help, but your reaction does remind me of hers....and they were able to figure it out.I can't see any reason, if you have any doubts, why it would be a problem to skip a dose for a week until you can get some answers. I often had to skip or half doses b/c my blood levels went too high. If it will give you peace of mind to skip, I might do that!I have been wondering how you are doing...it is April already and I remember that back in FEBUARY you were to get the resutls from all of the horrible testing you went trhough. Did you post on that????? I would like to read it...I have missed so much on the board.Emily Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 5, 2006 Author Report Share Posted April 5, 2006 Hi,Thanks everyone for your support.This is another reason why I am concerned. My brother had a stroke 6 months before he died and stroke runs in my family. My hematologist has only ordered a hematocrit count 5 weeks after I will have started the Procrit. I am worried that this is way too long for my case. He says that it takes about 52 days to see a reaction but I already felt improvement the following day of the first shot. I think I react much faster than his cancer patients! He does not have experience with POTS patient. I am his first experience.I reached the office where the nurse who is scheduled to come tomorrow works. They told me to talk to my doc to find out what we will do because they agree that I should have this problem checked out before continuing the treatment. I was glad that they postponed because if I would give myself the shot that's what I would do. Today I felt better and I would like to continue to feel better. I hope to talk to my doctor or this his nurse tomorrow. My feeling is like what you said Patricia. I have to go slow to find the proper dosage. I know it is helping me but it is too much at one time.Can we re-use the same needle if I only use half of the injection it or do I have to discard it and use a fresh one everytime? Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 6, 2006 Author Report Share Posted April 6, 2006 Hi Emily,I will PM Steph. I don't remember if I posted the result of my tests. The EP doctor wants to do an EP study because my HR went to 250 when I passed out. I don't think I will do it because I don't want an ablation.I was suppose to get the result of the other test yesterday but I got postponed until the end of June. I am very frustrated about that!I have another sleep study in July and will get those result in August.I am scheduled to see Dr Grubb in June but I don't know if I can afford it. That's about it in a nutshell! Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 6, 2006 Report Share Posted April 6, 2006 Ernie,That is a LOT of waiting...this illness has definitely been a true test of my patience...every day!Tahnks for updating me.I hope Steph is able to give you some tips...Emily Quote Link to comment Share on other sites More sharing options...
lalalisa Posted April 8, 2006 Report Share Posted April 8, 2006 Ernie,Hello! We are in this Procrit thing together. My dr. also mentioned that we could check my levels every 4-6 weeks and I'm starting to think that that it too long to wait. For me -- after 4 weeks on Procrit my Hematocrit jumped up 10 points!!! (From 39-49) Dr. Grubb thinks 50 is the highest we should go and my dr. has kept on the same dose with another blood check at 6 weeks!! I'm thinking this is crazy! I'm going to start going in to the lab every 2 weeks just to make sure I don't jump up another 10 points at my next visit!!!! I haven't felt a "difference" at all in how I feel yet. Weird that my body is responding so well but my body isn't "feeling" it yet. I am going to keep waiting though.Take care and please keep us up to date.Lisap.s. I've been getting more migraines than usual lately and now I'm starting to wonder if it's the procrit. Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 8, 2006 Author Report Share Posted April 8, 2006 Hi Lisa,I find it strange that I felt positive result the following day I took it the first time when the hematologist told me it was suppose to take 2 months. Another doctor told me that some people feel the benefiits within 4 days.My hematologist is on vacation until Monday so they asked me to put the shot on hold until then. I think I will ask to self inject because I hate to be dependent on someone else for the dosage and frequency. I have more energy and stamina. I am starting to be excited about my next shot so this means that I am starting to need it. I think though that the dosage is too high.That's a big jump 10 points in 4 weeks. Especially now that you are close the the upper limit. I think you should be monitored more closely. What is you dosage right now? Quote Link to comment Share on other sites More sharing options...
lalalisa Posted April 8, 2006 Report Share Posted April 8, 2006 Ernie,Wow, that's SO great that it's giving you some energy. What a blessing!I'm on 10,000 units (1 ml) once per week. What about you?? I think I'm going to start going in to the lab every 2 weeks to check my levels. I'm just glad the dr. here will prescribe it....it took me almost a year to find someone to give it to me. I guess I'll just have to be proactive about making sure i'm monitored. Thanks for any input!Lisa Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 8, 2006 Author Report Share Posted April 8, 2006 Hi,I am on 10,000 units also but I believe it is way too much. I start to feel better when the med runs off. I can't wait to hear from the doctor on Monday. I think I will ask for 2,000 units for a couple of weeks. I too, would like to be monitored at least every 2 weeks but even better every week.Keep me posted on your progress. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 8, 2006 Report Share Posted April 8, 2006 I have started procrit a few weeks ago. I am getting my hematocrit tested every week. After the first week, there was no change. After the second week (second shot), my hematocrit jumped about 7 points to 41. I decided to wait a week to see what happens. My cardiologist said it was a good idea to keep it to the low 40's. Hope all goes well, Ernie. Let us know what happens.Lois Quote Link to comment Share on other sites More sharing options...
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