Copper treatment

[Chirley]

Hi, I'm in hospital. I've had another transfusion and my neuts are nearly zero.

I've had one dose of copper sulfate IV with Hydrocortisone premed. It was 4mgs which was supposed to run over 4 hours but some nurses knowing better than the pharmacy or my doctor think its okay to run it over 3 hours (sarcasm).

To be fair this is what happened in the past and part of the reason I stopped having copper. I just thought it was inappropriate for the nurse to change the treatment duration to suit herself.

I am not having copper today but the doctor insists I resume tomorrow because my condition is "dire"....his words, not mine.

Regards

Chirley

[Marlene]

How do they get away with that? Will your doctor or the pharmacist intervene?

[Birgitta-A]

Hi Chirley,
Is the reaction this time as bad as the reaction you had the last time you got copper IV?

Perhaps you can tolerate copper a little better this time if the nurses can follow the instructions. When they know that your condition is "dire" they really ought to be very careful.

Hopefully your neutrophils will increase as well as your HGB.
Kind regards
Birgitta-A

[Chirley]

Hi, it turns out that the nurse is a new graduate and made a mistake with the flow rate but to be honest I don't know if it effected my reaction. This is what happened before even when it ran slower.

I'm having another infusion as I type. I had a seizure (well 3 seizures actually) this morning and the ICU Doc insisted I have the copper because my neuro condition isn't very good.

I feel like I'm very lucky because I couldn't talk when I woke up but it's mostly come back now. I'm heavily drugged so I apologise if I don't make sense. I also can't see much of what im typing so I hope I'm hitting the right buttons.

I have some throbbing bone pain in my back which I think means the bone marrow is regenerating. Odd when pain is a good thing.


I'm very tired and mellow and need to sleep.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Too bad with the reaction to the copper infusion! Hope it won't be so serious this time!

How frightening with the seizures - good that you already feel better.

Hopefully you are right about the bone pain in your back and that your bone marrow is trying to start making new blood cells!
Kind regards
Birgitta-A

[Glenda H]

Hi Chirley

Which hospital are you in? I hope you are getting on okay now.

Glenda

[Chirley]

Hi, I feel better today than I have in many weeks.

Just the usual rash with the copper but now that I'm having pre and post hydrocortisone it's not as hot or uncomfortable.

Hb is 90 (3 units of blood on Thursday and Friday) WCC 1.00 don't know the neuts or platelets. I'm happy that things are heading in the right direction.

More copper today and tomorrow and all being well I can go home.

I'm in Mater Private and besides that first issue with the nurse running the copper too fast, the care here has been wonderful.

I still have a little bone pain but its not too bad just a little background throbbing.

Looks like my GP and specialist were right, I'm very lucky to have had those seizures in hospital because if I had had them at home by myself I think I would have died. I needed to have some special drug to stop the seizures and that drug is only kept in ICU. The usual drugs had no effect. I don't know the names of the drugs because I wasn't conscious at the time. I do have a sore neck and throat but that's not much to be left with.

I'm in a much more positive frame of mind today.......it feels good to feel good.

Regards

Chirley

[Birgitta-A]

Wonderful Chirley that the copper had positive effect at once!

How terrible with the seizures! Hopefully they will find a drug that will prevent seizures.
Kind regards
Birgitta-A

[Marlene]

So glad you're feeling better.

[Chirley]

Does regenerating bone marrow cause jaw/face and teeth pain? They are throbbing just like my back and base of skull but don't want to say anything in case it puts my discharge from hospital on hold. I've never had the pain in my face before.

The doctors aren't worried about the seizures, they think its related to copper deficiency and they shouldn't come back now I have had 3 copper infusions. I still have a little trouble finding the right words sometimes but that's improving too and I've been told its only a temporary thing.

It's three in the morning and the pain med hasn't kicked in yet but I'll probably be sound asleep by the time I'm woken for my four o'clock neuro check and observations. You have to love hospital routines

Regards

Chirley

[Neil Cuadra]

Originally Posted by Chirley

Does regenerating bone marrow cause jaw/face and teeth pain? They are throbbing just like my back and base of skull but don't want to say anything in case it puts my discharge from hospital on hold. I've never had the pain in my face before.

Chirley,

I don't know what might be causing your jaw/face/teeth pain. If the pain continues at the same level then reporting it to the doctor might be a wise idea. I know you want to get out of there and I hope it's not a sign of a new problem, but if there's a chance it's something serious then getting it evaluated could be in your best interests.

[Chirley]

Thanks for the advice Neil. I did mention it to the nurses and they think it has something to do with injury during the seizures.

We have sorted out a lot of my copper issues. Hydrocortisone before and half way thru then Clarytine an hour prior to and steroid cream post. The rash is substantially better.

My bloods today show Hb still hasn't moved but WCC 3.2 and neuts 1.2 there is a big left shift with lots of bands, metas and myelos along with high NRBCs. How much of this improvement is copper and how much is marginalization due to steroids will take a few days to determine but I feel better than I have in a long time so I don't care about the whys.

The plan from now on is......there is no plan. Basically if I start feeling unwell I will be admitted and do it all again.


Regards

Chirley

Ps my platelets are a little low so the bruising is from tape.

[Birgitta-A]

Hi Chirley,
Hope the jaw/face and teeth pain has disappeared! It should if it depended on the seizures.

Very good with the treatment to prevent rash!

As far as I know steroids can increase platelets and HGB but when your WBC have started to increase I think it is due to the copper.

Very positive that you are feeling better !
Kind regards
Birgitta-A

[tytd]

Hi Chirley,
So glad to hear that you are feeling better and that you have been able to tolerate the copper. Hopefully the seizures will not return. I assume they checked all your other electrolytes at the time of the seizures to make sure they were OK as well. Just out of my curiosity, I wondered whether you had been tried on copper chloride as well as copper sulfate and what volume of fluid do they mix the copper in? I think both forms of copper are used in TPN (total parenteral nutrition), in much lower concentrations, but I am not certain of which is more commonly used. A pharmacist who mixes those solutions would probably be able to tell you. I think the trouble is that copper deficiency is so rare that many docs do not know the ins and outs of replacing it so they are learning with you. Have you ever asked your hematologist how many prior cases of bone marrow failure due to copper deficiency that he has treated? I am sorry that I am being so nosey but your case is fascinating and instructive. I wish that your copper problem had been detected earlier so that you would not have had to endure the loss of neurological function. You should record your story and have it published in a medical journal so that many docs can learn from it. I know you love being a guinea pig but your spirit is incredible. I hope that you will be able to continue the present regimen of copper and be able to continue to feel better. Tytd

[Chirley]

Hi, I feel great.

I'm at home and I'm being overwhelmed by my dog and two cats......happy days.

I have no pain at all, I'm not breathless, my rash is improving and I can walk around my house with a walker instead of using the wheelchair.

Tytd, I have Cu Sulphate. Originally we tried to get Cu Chloride but couldn't access it (I was going to fly to Rochester to get some). I have a friend who is a TPN nurse and she gave me the contact number for the drug company pharmacist who supplies the home TPN patients. I passed this on to my haematologist at the time and that's how I got the treatment. The Cu is supposed to be diluted in Normal Saline at 1mg/100mls and run at a rate of between 0.5 to 1.0 mg/hr. I noticed this time that the nurses were using a 1mg/50ml concentration, I don't know why they changed it, I assume on pharmacy orders.

None of of my doctors have ever treated a copper deficiency before. The haem has subsequently found one other person with Cu deficiency which was easily corrected and they recovered completely. Unfortunately, I have renal Cu wasting so my Cu level will never be stable. As for the electrolytes, I have no idea. I wasn't very aware at the time, I did wake up covered in cotton wool balls and tape all over the place.

My neuro has written a paper on my case which he presented at an international conference, he also submitted it to a journal but I don't know if it was printed. I often get presented at Grand Rounds and I am used for Doctors to do their final practice exams on. My physician brought two Registrars to examine me on Sunday (the same day as my seizures) as part of their final year practice exams. I was under strict orders not to volunteer any information. The girl was so nervous she knocked everything off my bedside table and then knocked the pedestal fan over and the boy kept stuttering. I felt sorry for them. My physician seemed to be enjoying their discomfort. He came back later to tell me they both had my diagnosis wrong but he knew they would. Apparently one said MND and one said T2 spinal injury. My doc said the girl was the better of the two but they would both eventually make good doctors.

I'm just going to shower in the luxury and privacy of my own bathroom.......heaven.

Regards

Chirley

[Chirley]

My physician was supposed to have last weekend off and arranged another doctor to cover. When I had my seizures they couldn't contact him so they rang my physician anyway. He came to see me on his weekend off. (Then did the Reg exams).

Now I get an account from the doctor they couldn't contact for $195. It's not much but it's really annoying to pay for a non service. What would he have charged if he had answered his page? I shudder to think.

It's good that I'm feeling well enough to complain.

Chirley

[Marlene]

Yeah!!!!! So glad you're feeling better.

[SLB]

wow.. you are very impressive, Chirley! I admire your fight and strength to keep going! glad to hear things are on the up this week.

[slip up 2]

Chirley....sure glad you got your fight back.....kate

[Cheryl C]

So pleased to hear that you've turned a corner, Chirley! May this success continue.

[Chirley]

Hi,
I had a blood test yesterday and I received a phone call from my physician today. He said my Hb was fantastic and almost normal. I don't need another blood test until next week and I don't need to be admitted for more copper until the following week.

That will be 5 weeks between copper treatments. That's great. I used to have two weeks between copper treatments and it was overwhelming.

My neuts are still a little low and I have a UTI and am on antibiotics but overall I feel pretty darn good.

Regards

Chirley

[Marlene]

great news!!!!!!

[Lbrown]

Good news! I was curious what abx you are on and how long you've been on them.

Deb

[Chirley]

Hi Deb, I'm on Amoxil but only started on Thursday.

I don't have a great deal of bladder sensation due to my neuro disorder so I wasn't sure if I had an infection or not. I suspected something was wrong so I mentioned it to the GP. The dipstick urinalysis showed blood., protein and leukocytes so I was started on the antibiotics.

I'm very happy that I now have doctors (GP and Physician) who listen and who will work with me instead of just dictating their orders. I've always thought that a week of copper treatment every third week was excessive.

I don't feel any where near as anxious about treatment as I used to. I still get the side effects but I can handle that when its only for 10 days or so every five or six weeks and not half my life.

Regards

Chirley

[Birgitta-A]

Positive news except the infection, Chirley!
Kind regards
Birgitta-A