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marlene
MemberThanks for the update on exjade
MemberHere are two links on genetic anemia that may be of interest to you. They explain the tests needed to diagnose. I hope this helps.
http://www.dbafoundation.org/diagnosis.php
http://www.nhlbi.nih.gov/health/dci/Diseases/fanconi/fanconi_diagnosis.htmlMemberI too would check this at NIH. Did they rule out Black Diamond/Fanconia anemia. It’s very possible it’s not MDS but a hereditary/genetic type of anemia. I know when my husband became ill and even though he was 50 YRS old, they still did the genetic testing on him at Hopkins.
I cannot image how heartbreaking all of this must be for you and the family.
Please try to get a consult at NIH if you can.
MemberThanks for the article. I am going to post on another forum. I guess this danger exists with all protocols and drugs. Once they get to be more "mainstream" docs stop questioning whether it is right for their patient. They really need to consider so many things other than lab results.
MemberAccording to the drug company, you shouldn’t start Exjade unless your Ferritin is at 1000 for few months/lab test. And if while you are on it and your Ferritin drops to 500, you need to stop it. The reason being, and this goes for deferral also, is that hearing and vision side effects will most likely occur when you don’t have enough iron for the drug to chelate.
Many docs don’t feel the need to start chelation until 2000 but you have to take into account what is going on and the frequency of transfusions. I think for many, it’s a safety issue since there’s not a lot difference between 500 and 1000. Remember, Ferritin is an acute phase reactant, meaning that anything can elevate it so it’s easy to get false readings. Any infection, inflammation or even a bad blood draw can cause the FE to be elevated.
MemberHere’s the latest FDA warning update on Exjade. Your doctor should monitor your blood counts, kidney and liver panel weekly the first month and then monthly, thereafter.
Many side effects are dose related and can resolved by reducing the dose. John never started with the full dose. He started low and worked up. He never got to a full dose. Eventually, he had to stop all together because his creatinine would go up.
MemberMags,
Most consider doing RBC transfusion when the HBG is around 8. But you also have to take into consideration symptoms. Some need to be transfused sooner because they are symptomatic while others can go lower with no problems. And yes, it’s the HGB and hematocrit they use to determine transfusion requirements…how much oxygen carrying cell you have as well as the volume of blood.
John always had a transfusion goal for platelets and red cells. In his case, a HGB of 8.3 was his threshold. This is pretty typical. For platelets, it was 8K. John’s HGB dropped down to 5.5 just before he was diagnosed and he was still walking around. Had a major headache but he got around.
MemberNancy,
Could also be the start of neuropathy. So many things can cause pain, numbness, hot/cold sensations and tingling in the legs/feet. Peripheral Neuropathies are a symptom of something else like depletion of nutrients, toxicity from drugs, food intolerances, structural problems, metabolic disorders and the list goes on.
Start by looking at all the meds she is on. All statins for cholesterol can be the cause. Many med deplete nutrient also so find out what meds she’s taking. There could be nerve damage from the diabetes even though she has it under control. There are way to counteract the effects of many of these but it takes time to reverse damage to nerves.
Marlene
MemberHi Mary,
It’s been a while since John did desferral but he was doing it 5x/week. I don’t remember his dosages but I want to say it was either 1000mg or 1500 mg. It was infused over an 8 hour period at night. They say a slower infusion is more effective and to get it at three days in a row. I don’t know how this compares to IV desferral though.
My initial thought is that desferral 2x/week is not enough to reduce iron when you are getting red cells every two to three weeks. We knew a patient who was doing desferral 7/24 and had no problem with it and it brought his iron down while being transfusion dependent.
Will your insurance cover home healthcare for the desferral? John had to do sub-Q since he no longer had a central line. They can set it up for either procedure.
MemberHello Bev,
I am so sorry to read this post. Barry was so fortunate to have you during such a difficult time. Please know that you are in our prayers.
Marlene
MemberWe had John’s Vit D levels checked and they too were low. We started supplementing with 2000 iu but it till didn’t put him into a normal range. We’d like to see it at 50ng’s at least. A big part of the problem, I think, is it was not enough to compensate for the lack of sunshine in the winter months. So he’s up to 5,000iu/day and we will check it again in a few months.
This is an excellent video clip…its a presentation by a doc to docs regarding vitamin D.
http://www.youtube.com/watch?v=emjCzaHtSrg&feature=channelThere’s a lot of info at http://www.vitamindcouncil.org you may want to check out.
One last item….they found that any vitamin D tests run by Quest Labs were faulty. The results were off in that vitamin D levels were reported to be higher than they really were.
MemberThey need to rule out genetic blood disorders like Black Diamond anemia and Fanconi’s Anemia also. Make sure they have done this.
Marlene
MemberGlad to hear that issues is resolved. Some places automatically pre-med for red cells while others wait until there’s a reaction. John did not get pre-meds until his first reaction either.
Marlene
MemberPam,
Are they pre-medicating your mom? And what kind of reaction did she have?
The hospital cannot force her to have a transfusion but someone there should be able to talk to her about the reaction and what they can to do mitigate any future reaction. I know that when John had a really bad reaction to platelets once it is was because they ran them in too fast. And the first time he had a reaction to red cells, they tested the bag to see if they could find out why. I know you can develop antibodies and they need to check for that with each cross and match.
It’s very difficult to try and help when you’re not there with her.
Marlene
MemberNo transfusions is a good thing!
Even though John’s HGB is still below normal, he’s getting 250ml of blood pulled off every other month to reduce the remaining iron. It’s safer for him than using the drugs at this point.
As long as his HGB was above 10, they’ll do the phlebotomies. Of course, you have to be able to rebuild your blood. So right now, his HGB is stable in the 11.5 – 11.8 range.
We tried this once before and he had to stop. He was doing 450ml every month. Over time, this amount and schedule was just too much for his BM. That’s when he started Exjade.
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