L1 and joint pains?

some quick info...
i'm 26 this year, and have been on desferal since i was 20 months old.

About a year and half ago, i was prescribed L1 from my doc. 2 tablets 3 times a day. i was told to continue my regular pump everynight (3 vials 5 times a week). The L1 was supposed to only COMPLEMENT the iron chelation therapy, not REPLACE it. Oh well, being 26 years old, working, nights out..... ok ok, i know these are excuses, but i gradually stop using the pump. L1 simply got too convenient. And i hate doing the pump  ~duh~

anyways, recently (a few months back) i realised my knees were getting painful. Now it's quite bad. climbing the stairs have become a prob for me. it's swollen too. so my mum brought me to see another hematologist in s'pore.

she said my joint pain could be due to two reasons
1) a side effect from L1 - in which case, i was told to quit L1 cold turkey (i'm so sad!!)
2) It could be due to my bones trying hard to produce red blood cells

you see, i have this soft tissue mass around my spine. doc said it was something like the bone marrows 'spilling out'?? well, there is a proper medical term for it, but i have to check my records.
so, i was given hydroxyurea to suppress the bone marrow activity. which caused my red blood count to drop dangerously low, so it's a no-go there either. I was taken off hydroxyurea after a few months.

so back to my ques, is anyone experiencing joint pains as a side effect from L1?
okies, i do hope my joint pains is due to L1.... however troublesome desferal is, i think being unable to tolerate L1 is preferable to my bone marrows acting up. no??

Sorry for the long long post. i just had to vent....

Hi pastel_lilian and welcome,

Joint pain is a known side effect in some patients who use L1. However, unlike the drop in white cells that sometimes occurs while using L1, joint pain is not reason to immediately stop the drug. Your doctor is overreacting and may be confused because it is necessary to stop L1 at least temporarily when there is a sudden drop in white cells. Some patients have gone to combination therapy using a half dose of L1 daily and desferal 2-5 times per week. This helps alleviate the joint pain to some degree and also puts the patient on the what is known to be the most effective chelation program.

Last year before his sudden demise, I asked my close friend, Ashish about this issue, as he was a 20 year veteran of taking L1. He was a pioneer, being among the first in the world to take L1. He told me that many patients in India had this same problem with joint pain and the solution had been to take more calcium. If you are not already taking calcium daily, you should start, but calcium should be taken with magnesium and vitamin D. Magnesium is necessary with calcium as they work together to create the electric impulses in the heart. Calcium controls one side of the heart beat and magnesium, the other. When too much calcium is taken and not enough magnesium, the result can be heart palpitations. Vitamin D is necessary for proper calcium absorption. I would recommend 1500 mg calcium daily, along with 750 mg magnesium (the two minerals can easily be found in the same supplement), and at least 1000 IU of vitamin D. It is best if you take the calcium and magnesium 2-3 times daily to reach the recommended dosage. Talk to your doctor and see if you would be allowed to try half a dose of L1 daily while continuing on desferal. If you do start L1 again, please do also take the calcium and magnesium daily. (Actually, all thals should be taking this regardless of which chelator they are using).

Many patients use L1 throughout the world. It is well known that L1 is the best chelator for removing iron from the heart and that in combination with desferal, there is currently no chelation program that is more effective.

Will you be attending the upcoming thalassemia conference in Singapore in October?

Hi Andy,

Thanks for the welcome and the advice! appreciate it

 I'm on 400mg calcium, 200mg magnesium with vit D (forgot the dosage) daily. wow... very little compared to your recommendation. will definitely increase them. however i've read horror stories on how high dosage of calcium may be linked to kidney stones. any truth in there?

yesterday and this morning, my knees are really very bad. can hardly walk. no choice, i had to take some paracetamol. may i ask, is there any painkillers on the market that is less taxing on the liver? you see, i have hep c too. thus... have to go easy on my liver hahahhaha.

yep, i've signed up for the conference. i can't wait to meet up with fellow thals. it can get lonely at times when i've no friend in singapore with thal major. can't share and vent.
well, that';s what this forum is for ain't it ??

cheers! take care....

It previously was thought that calcium caused kidney stones because they are usually comprised of mostly calcium. However, and this is very important because people are doing exactly the opposite of what will prevent kidney stones, taking calcium actually reduces the chance of stones.

http://www.sciencedaily.com/releases/2004/04/040427053920.htm

The researchers documented 1,223 new kidney stones over the eight years of the study. They found that higher dietary calcium was associated with a reduced risk of kidney stones. Women who consumed the most calcium (top 20 percent of calcium intake) had a 27 percent lower risk of developing kidney stones compared to women who reported consuming the least amount of calcium (lowest 20 percent of calcium intake). Calcium supplement use was not associated with risk of kidney stone formation. The researchers found that phytate consumption was also associated with a reduced risk of stone formation. Women who consumed the most phytate (top 20 percent of phytate intake) in the study group had a 37 percent lower risk of developing kidney stones compared to women who consumed the least amount of phytate (lowest 20 percent of phytate intake).

"In summary, our findings indicate that a higher intake of dietary calcium decreases the risk of kidney stone formation in younger women," the authors write. "

You are taking the right ratio of calcium and magnesium but that dose is somewhat low. I would suggest doubling it and checking your vitamin D dose. It should be at least 1000 IU daily. Sunshine is the best source of vitamin D. If you can get regular exposure to sunshine for 15-30 minutes a day, it can be a big help for many problems, especially those encountered by thalassemics. Thals often test for vitamin D deficiency, so supplementation is highly recommended.

I also would like to make note of and emphasize what else is mentioned here. Phytates are what is found in another supplement that we have highly recommended to thal patients because of its chelating and antioxidant properties. This supplement is IP6 and we have gotten very positive reports from people using it. A lightening of skin color, which shows that iron is being removed, is usually reported within the first month of use. Patients using it have also had recent checkups showing them to be in excellent health. IP6 should be taken on an empty stomach with a full glass of water. Do not combine it with protein foods like milk. It is also more efficient when taken with its fellow B vitamin family member, inositol. Phytates are also found in whole grains like brown rice. Refined grains do not contain it because phytates are found in the bran of the grain.

I would also like to hear from people about safe painkillers, as everything on the market causes some type of problem in the digestive system. Does anyone have suggestions here?

Hi Andy,

Thanks so much for your advice and the recommendation on IP6. I can't seem to find it available in Singapore tho.

I've increased my calcium intake to 1400mg and magnesium 700mg daily. A lot of pills to pop!! LOL

Cheers
Lilian

i used to have L1 and unfortunatly i still have its side effects wich includes

pain in joints and bones
and my i cant sit on the floor for long and cannot bend my knees properly

HI everyone ;
i have suffered to  kind of pains u mentioned in ur posts nearly year back .b4 sarting L1 OR OTHER ORAL CHELATOR ...  .a few a days back my stock of ferriprox were end after a week i sent draft to order ferriprox  this exerise toke 15 days . when i started it again i fel pain in my knee and ankle .it disapeared after few days .....well it is only a kind of information ... tell it to ur dr .. and try to do that wat he/she advise.. i found a usefull info to the leaflet of ferriprox abt joint pains i qoute below  .  here is some link to get that leaflet and more info .

http://www.kodc.or.kr/cmed/down/ferriprox.pdf    it is detailed one...

http://www.orphan.com.au/pdfs/CMI_Ferriprox_2pager.pdf           it is in short words

qoute to the leaflet:

Tell your doctor or pharmacist if you notice any of the following that are troublesome or ongoing:
- joint pain and swelling
- abdominal pain
- diarrhoea
- nausea
- vomiting
- increase in appetite.
These effects generally disappear after a few days to a few weeks of continued treatment.

another thing

Some patients enrolled in clinical studies with Ferriprox developedjoint pain and swelling. These events ranged from mild pain in one or more joint to severe disability. In most patient, the pain disapeared while still taking Ferriprox.

Hey friends,

As you know, my knees got really that painful that i had to pop paracetamol like candy daily. BUT, after 2 weeks of stopping L1 cold turkey, it's improved dramatically. i don't have to take painkillers no more.

But i dunno if i should conclude it as a side effect of L1, because around the same time i discontinued L1, i increased my calcium and magnesium intake dramatically, like from 200mg calcium to 1400mg.

So.... calcium magnesium or L1??

sigh, i miss my L1 dearly. my thighs are so sore and lumpy now. everynight i have to spend like 2 mins pinching around my thighs to find a place that is free from lumps.

i hope my doc will allow me to take L1 again...

cheers,
lilian

@ Lilian
it could b bcoze many reasons  ....
1 side effect of ferriprox ...
2 vitamin and calcium deficiency
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when i started ferriprox ( on my dr's advise ) she also advise Vitamin D to start and told me to  dont change the combination on my own ..... ....
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Pls see this post about kelfer and joint pains:

http://www.thalassemiapatientsandfriends.com/index.php?topic=1819.0

You may want to go to an orthopaedic surgeon to look at your knees and see if there is any accumulation of fluid in there.

Poirot