My Iron Reports & Further Questions.

Hi Pratik how are you doing now? It has almost been a year since you updated your status. How is the ferritin and your exjade dose?

Sorry for not updating this.

After couple years of procrastination and ordering desferal pump and first few doses of desferal vials in the late November, 2015, I am happy to announce that it is today my first day of taking Desferal.

As today was my first time (I take insulin so poking needle wasn't scary or that new to me in the skin), I waited for my mom to return from office at 6 PM and then began transfusing 1 vial (500 mg) with 5 ML of water. It's 1 AM here now and it's just completed.

Feels good, a little awkward as it's a new thing and tool to hang around and move (lol), but with time I'll get adjusted. The leg feels heavy (the one which was under infusion) as a good amount of liquid passes through. I believe it should be fine when I wake up in the morning.

My ferritin as of around mid February is around 5100 (no decrease or increase with Exjade alone). So now I will be taking Desferal along with Exjade as combination therapy with almost same dose of Exjade being continued (1600 mg).

The real fight against Iron starts now for me. I want to see where I will be in next 9-12 months. I plan to take at least 25 (if not 30) vials/month (1 per day on avg). 25 because some days I might want to skip and just relax. But that's the plan.

One important question I want to ask about Desferal's side-effects is whether the hearing loss problem is same as Exjade or it could be worse than it? Asking because I saw Dharmesh's response in one thread that he has significant hearing loss due to desferal. Andy or any members please kindly share their experience as I am relatively new to learning the ins and outs about it.

I am having vision problems currently (more so in left eye majorly) like blurred/hazy vision. It's not due to Exjade (got it checked with Retina specialist) and it's not cataracts or any of eye side effects of Exjade. Doc is suspecting it's vitreous hemorrhage / retinopathy (leaking of blood vessels in eye). Naybe due to diabetes and a bit above norm sugar levels in past few months being diabetic? Not sure (Winter isn't good for diabetics as blood sugar levels don't play fair during cold). Little scary - vision is most important thing for me and the thought of losing it alone is scary. He has advised to come under 1 week and get Angiography done for further investigation/diagnostics. I am trying natural remedies such as beet/carrot juice and keeping cold cucumber rings in eyes till then and will see if any of it helps any bit.

That's it about my recent update. Will keep you guys posted.

I wish I could better answer the question about Exjade's effect on hearing, but I don't think the data is there. The anecdotal reports I have heard suggest that it is not as bad a problem with Exjade as it is with desferal.
Your combination chelation program should help your diabetes, as well. Umair has seen a great reduction in the amount of insulin he takes since he got his iron load under control. Hopefully, this will mean some of the other problems will be somewhat alleviated.

Hearing problem occurs when one takes desferal in full dosage initially. In your case full dosage comes to 2000 mg daily or 4 vials.

As per the protocol you must get checked your eyes and ear before starting desferal.

Glad to know that you started Desferal.

Bravo

Thanks for the advice, Andy, Dharmesh. You and people on Thalpal are the ones I could rely and count on at any given time!

So today was a rest day. Tomorrow I will take again in another leg (I take in thighs). Beginning slow, allowing the medicine to adjust my body as per advise of Dharmesh, which sounds just about right.

Now, I am not sure if it's a coincidence or what but today since morning, I'm having skin/fat on the sideways of both side of stomach being stretched, as if it was hit by something mild and is resulting in muscle pain (but nothing was hit in real). And it's not any gastric problem, so we can rule that out. I am also having mild heavy head (pain) since evening, more so just around the region of eyebrow bones.

Andy, is this just a bad position that I slept in (stomach issue) or whether desferal could cause any of this? Like I've said, I've taken in thighs so most probably this shouldn't affect stomach or any regions around. But who knows. I only took 1 vial (500 mg) in 5 ML water like I said yesterday, so no heavy dosage were administered.

Thanks.

Pratik,

This may be a mild reaction to the new drug, desferal. Stay on the low dose and see if the problem resolves itself. It's always best to start slowly with any new chelator. It takes the body some time to get used to the drug. I also recommend turmeric for the pain. I take turmeric with black pepper capsules and they work well against various types of pain.

Pratik,

This may be a mild reaction to the new drug, desferal. Stay on the low dose and see if the problem resolves itself. It's always best to start slowly with any new chelator. It takes the body some time to get used to the drug. I also recommend turmeric for the pain. I take turmeric with black pepper capsules and they work well against various types of pain.

Thanks a lot Andy.

And yes, my mom prepares hot turmeric (mixing original turmeric in hot water and adding little salt to it) and we drink it during breakfast every day. I believe it helps in some ways at least to body. It has been used for centuries as one of the finest herbs.

It's 10:30 AM now (woke up 30 mins ago) and the symptoms I mentioned last night are greatly reduced, almost by 90-95%. So yes, you are probably right, it might be a mild reaction of desferal.

I am going to take another dose today in under 30 minutes. Let's see how it goes today!

Best,

-P

It has been 3 and half hours since the ongoing of desferal and I can somewhat now confirm that previously mentioned side effects (stomach pain, mostly side ways that too mostly on left side) and mild headache (just around eyebrow bones) might be due to it. Like I said, I woke up this morning with feeling 95% better than yesterday and just 2 hours after starting infusion, those symptoms are appearing again.

Andy, I am personally okay with it as they are not that bad or troublesome but the only thing I am worried is that the pain (majorly) is on left sideways of stomach region, where spleen and liver is (I believe?). So should that be any alarming or it's nothing more than a muscle pain?

Somewhat similar symptoms are listed here - http://www.rxlist.com/desferal-side-effects-drug-center.htm . Should this be alarming or should I continue treatment at 1 vial (500 mg) every alternate day?

I take infusion in thighs like I said and not in stomach unlike many.

Did anyone who take or used to take desferal in past experienced similar symptoms? If so, when? During the beginning in the first few days? Did it went away gradually as the medicine becomes adjusted to body?

Thanks.

I'd like to hear from others on this, as well, but I don't think it's any serious issue. Desferal is excreted through the kidneys, so the liver and spleen are not really involved. I think it's most likely either an abdominal pain or a muscle pain, either one would be related to desferal, but not considered as serious side effects. However, if the pain suddenly gets worse, stop desferal and consult with your doctor.

Headache is quite common with Desferal.
Abdominal pain should resolve within a few days of desferal.

Headache is quite common with Desferal.
Abdominal pain should resolve within a few days of desferal.

Thanks for the reassurance Dharmesh. Yes, headache now seems quite common when I take desferal.

About abdominal pain and gastro problem due to it, did you and anyone else who is/was taking desferal faced it?

I was reading the below webmd article and reading it's side-effects which was a little alarming and distressing - http://www.webmd.com/drugs/2/drug-9123/desferal-injection/details#side-effects

Specifically:

Rarely, this drug may cause serious (sometimes fatal) bacterial or fungal infections. Get medical help right away if you notice any of the following: unexplained diarrhea/abdominal pain/fever.

I'd appreciate inputs from Andy and other members on this.

Thanks.

Hey Andy, Dharmesh and everyone,

I am not sure if this is coincidental or what but I'm having mouth ulcers roughly some days after starting desferal. It has been there for 3 weeks now. The back of my tongue is sore, and there is redness near the tonsil stones walls (on the sideways). I also have somewhat big ulcer on my lips.

I saw my physician 2 weeks ago and he said not to worry and wrote some B vitamins and a gel to help it soothe. However, there is no major effect still. I again saw him 2 days ago and he said to continue the treatment and not to worry.

I am very worried now (I am extremely paranoid lol) about mouth cancer since I never had ulcers that lasted such long. I am not sure if this is one of the side effect of desferal? That's what I wanted to ask. I've discontinued desferal for a week now to see if it has any relief on this. Did anyone who took desferal had any such side effects ever, especially when beginning it?

I am also going to see my dentist today and see what he has to say.

Would like to know your opinions on this.

-Pratik

MY FRIEND.
Assalamualaikum Wa Rahmatullah.
I started for my son EXJADE from last september/15. Whenever he continued that tablet. I follwed his daily health status. After one week (Tanzim) complained me that inside of his mouth some of place was paining & become red. I checked & started fegonia juice once daily 10ml. After one week he was got relux from that. Please you can apply the same.
Thaks to all thall.

MY FRIEND.
Assalamualaikum Wa Rahmatullah.
I started for my son EXJADE from last september/15. Whenever he continued that tablet. I follwed his daily health status. After one week (Tanzim) complained me that inside of his mouth some of place was paining & become red. I checked & started fegonia juice once daily 10ml. After one week he was got relux from that. Please you can apply the same.
Thaks to all thall.

Dear Tanzim,

Thanks so much for your input. I was research more about Fegonia. I am not very native to the name but a simple google search showed that the local (Indian? not sure) name seems Dhamasa.

Just to make sure, you crush it and drink around 10 ml of it daily?

Thanks a lot.

-Pratik

Hi
If you get fegonia/Dhamassa (same). Try to collect it's leaf & flower, blended it. Have take 10- 15 ml juice in between meal. & please check HEALTHY MANNERS.COM about Fegonia details.
If it is usefull for you, I wil be glad.
Thanks.