So, what you are saying is you don't have the pain and tingling in your legs any longer; but, you now are sleepy, bad headaches and mouth breaking out. Its a great life, isn't it???
Shockwave is a percussive treatment. Think of a Drexel with specific heads. Each head for a different body location. A vibration is sent through your body. There are different levels, so you need not start with the strongest. This can relax the muscle, compressing a nerve and pain is reduced, in theory. My feet flare up with allergy reactions that are more than what is expected. (No one wants to figure out that connection). So, I have Shockwave treatment and my feet reduce to humming, from yelling and screaming over food choices. I have had cold laser treatment. Which worked, Shockwave just works better. I have it done at a physical therapy office. Recently, she used it on my shoulder, and it popped back it to place after! (This sadly, is not the first or last time I will dislocate a joint, not auro immune). Happiness! Long summer with it out, and no one realizing it, because I was not writhing in pain. I need to be a crankier patient. "As if!"
Sorry to hear about the side effects but thanks for keeping us posted.
Do they have you taking anything prophylactically like Benadryl to help with the reactions? Then again, that might cause the drowsiness.
When my NP and I discussed it, she said slowing the infusion rate could help minimize headaches but then that would make it take even longer which you may not want.
Sorry to hear about the side effects but thanks for keeping us posted.
Do they have you taking anything prophylactically like Benadryl to help with the reactions? Then again, that might cause the drowsiness.
When my NP and I discussed it, she said slowing the infusion rate could help minimize headaches but then that would make it take even longer which you may not want.
I am taking 500 mgs Tylenol
125 mgs prednisone-IV
50 mgs of Benadryl
5 mgs Valium where I don’t have a seizure I have had seizures since 2002 when I got mrsa bacterial spinal meningitis.
I had no side effects on day 3 loading dose is 5 days today is day 4
So, what you are saying is you don't have the pain and tingling in your legs any longer; but, you now are sleepy, bad headaches and mouth breaking out. Its a great life, isn't it???
No I still have the problems with my feet, hands and ribs, along with cardiac autonomic neuropathy. I just started loading dose is 5 days then every 28 days for two days or it might be every two weeks based on how I do. It takes 4-6 months to start working according to the doctor and infusion pharmacist. My mouth is no longer breathing out and no longer have the headache as of on day 3 that stopped. I have today and tomorrow left for the loading dose first 5 days when you first start IVIG. . Loading dose is your first dose of IVIG. My problem is autoimmune neuropathy.
I did not have a headache and my mouth did not break out. That was day three the loading dose is five days. Today is day four.
I took IViG from age 10–18 so I was hoping no problems.
Premedicated
125 IV prednisone
Benadryl 50 mgs
Tylenol 500 mgs
Phenergran 25 mgs for nausea
Valium 5 mgs I have a history of seizures so they are giving it for prevention
No I still have the problems with my feet, hands and ribs, along with cardiac autonomic neuropathy. I just started loading dose is 5 days then every 28 days for two days or it might be every two weeks based on how I do. It takes 4-6 months to start working according to the doctor and infusion pharmacist. My mouth is no longer breathing out and no longer have the headache as of on day 3 that stopped. I have today and tomorrow left for the loading dose first 5 days when you first start IVIG. . Loading dose is your first dose of IVIG. My problem is autoimmune neuropathy.
Hi @artemis1886 ,
I drink as much water as possible, 100oz +, the day before, the day of, and the day after my infusion. I also have an over the shoulder bag, not an IV stand, so I move as much as possible, usually right after my blood pressure is checked, so I have a few minutes for it to come back down.
Hi @artemis1886 ,
I drink as much water as possible, 100oz +, the day before, the day of, and the day after my infusion. I also have an over the shoulder bag, not an IV stand, so I move as much as possible, usually right after my blood pressure is checked, so I have a few minutes for it to come back down.
That would be really nice they sent me a stand with a pump and IV bags When I had my mrsa bacterial spinal meningitis I had the pump that I carried everywhere because the antibiotics were 24/7 for three months then oral antibiotics for another three months. I wish I had the portable pump
My nurse isn’t good at IV sticks. It took her two and a half hours to get an iv into me. She dislodged the IV herself. I told her I had no vein where she was going and she went straight into a tendon three different types and perforated a couple of other veins. Not a great experience. She needs a vein finder. They have hand held ones that are small. She says she is the supervisor but most nursing supervisors are better sticks than that.
My nurse isn’t good at IV sticks. It took her two and a half hours to get an iv into me. She dislodged the IV herself. I told her I had no vein where she was going and she went straight into a tendon three different types and perforated a couple of other veins. Not a great experience. She needs a vein finder. They have hand held ones that are small. She says she is the supervisor but most nursing supervisors are better sticks than that.
I understand, my nurse tripped over the line and yanked the port. It would take an hour to access my port. I also had a different nurse steal my supplies and lie. New nurse, what a difference.
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So, what you are saying is you don't have the pain and tingling in your legs any longer; but, you now are sleepy, bad headaches and mouth breaking out. Its a great life, isn't it???
Hi @bettyg81pain
Shockwave is a percussive treatment. Think of a Drexel with specific heads. Each head for a different body location. A vibration is sent through your body. There are different levels, so you need not start with the strongest. This can relax the muscle, compressing a nerve and pain is reduced, in theory. My feet flare up with allergy reactions that are more than what is expected. (No one wants to figure out that connection). So, I have Shockwave treatment and my feet reduce to humming, from yelling and screaming over food choices. I have had cold laser treatment. Which worked, Shockwave just works better. I have it done at a physical therapy office. Recently, she used it on my shoulder, and it popped back it to place after! (This sadly, is not the first or last time I will dislocate a joint, not auro immune). Happiness! Long summer with it out, and no one realizing it, because I was not writhing in pain. I need to be a crankier patient. "As if!"
JFN
Mouth no longer breaking out no headache on day 3 today is day 4 loading dose is 5 days
I am taking 500 mgs Tylenol
125 mgs prednisone-IV
50 mgs of Benadryl
5 mgs Valium where I don’t have a seizure I have had seizures since 2002 when I got mrsa bacterial spinal meningitis.
I had no side effects on day 3 loading dose is 5 days today is day 4
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Helpful -
Hug
2 ReactionsNo I still have the problems with my feet, hands and ribs, along with cardiac autonomic neuropathy. I just started loading dose is 5 days then every 28 days for two days or it might be every two weeks based on how I do. It takes 4-6 months to start working according to the doctor and infusion pharmacist. My mouth is no longer breathing out and no longer have the headache as of on day 3 that stopped. I have today and tomorrow left for the loading dose first 5 days when you first start IVIG. . Loading dose is your first dose of IVIG. My problem is autoimmune neuropathy.
I did not have a headache and my mouth did not break out. That was day three the loading dose is five days. Today is day four.
I took IViG from age 10–18 so I was hoping no problems.
Premedicated
125 IV prednisone
Benadryl 50 mgs
Tylenol 500 mgs
Phenergran 25 mgs for nausea
Valium 5 mgs I have a history of seizures so they are giving it for prevention
Hi @artemis1886 ,
I drink as much water as possible, 100oz +, the day before, the day of, and the day after my infusion. I also have an over the shoulder bag, not an IV stand, so I move as much as possible, usually right after my blood pressure is checked, so I have a few minutes for it to come back down.
JFN
That would be really nice they sent me a stand with a pump and IV bags When I had my mrsa bacterial spinal meningitis I had the pump that I carried everywhere because the antibiotics were 24/7 for three months then oral antibiotics for another three months. I wish I had the portable pump
My nurse isn’t good at IV sticks. It took her two and a half hours to get an iv into me. She dislodged the IV herself. I told her I had no vein where she was going and she went straight into a tendon three different types and perforated a couple of other veins. Not a great experience. She needs a vein finder. They have hand held ones that are small. She says she is the supervisor but most nursing supervisors are better sticks than that.
I understand, my nurse tripped over the line and yanked the port. It would take an hour to access my port. I also had a different nurse steal my supplies and lie. New nurse, what a difference.
JFN