Dori is back & need you all more than ever

I assume this is very against any law, but I am rewriting this topic once again. Last week I was put back on deferiprone. When I confessed that Exjade caused a lot of kidney pain I heard to stop with it. Although I know think the NSAID-treatment has something to do with it. I still feel sad about my confession as Exjade was just about to do the trick it is supposed to do. My ferritine has been rising since September 2010 and is already above 2000. Especially my doctor seemed to me concerned.

The weekend has been a bit of a blurry as I was battled high and uncontrollable pain (bursititis in my hips). I think everyone I must spoken to must have been a littly dizzy afterwards. I only told the whole story to a good friend of mine and together we came with a plan (she's from outside this world so she had a fresh outlook on things).

However, I have also come to realise that part of my trouble/fail is caused by stopping to visit these forums and be really part of it. Umair's great results have let me come back to this site to and I honestly ask you to endure my rambling and talk me back into it. If everyone of you is also a friend on Facebook, please  spam me with all kind of messages to take my meds, my water and a positive outlook. By this I allow you to do so.

I am "slowely" building up a deferirpone regime of 3x 2 tablets. At the moment I take 3x1 tablet. A half tablet did not work for me. I became restless of it. I also must take my NSAID (diclofenac) 3 times a day, 1 tablet of omeprazol in the morning to start with, my CalciChew and my folic acid. And ofcourse my water..... (schedule?)

So please share all your suggestions and any other things you think of. Because I am going to need it a lot. I feel that some of my friends believe I am exxaggerating, but the history repeat itself. I have walked this path already three times. And that makes me scared.

To be honestly I do not feel I will be able to take deferiprone for a long time...

Thank you in advance,
Dore
Last few weeks I took 750mg of Exjade 5 days a week and 1000mg of E 2 days a week.
I have not had any real Exjade lab tests since August 2010 done (I think that is correct - atleast not in 2011)
PS below my original post.

Hello Everyone,
I have thought about it a lot and at the end I decided to share my story. I have repeated this message over and over in my head but here I finally am. It is written through my small breaks from studying.

At the age of 16 my stage of ferritin was recognized as dangerous high, and I started with chelation therapy. Aggressive chelation therapy. I took small doses of deferiprone since it came on the market but it was not enough.
At the end I received 5x24hrs desferal weekly and sometimes along with deferiprone (stopped with deferiprone due leg aches). On an autumn day I developed ulcers in my throat and I almost couldnt breath. Since that I evening I have never taken or giving it again.

Now we jump to Summer 10. I had to quit Exjade because of severe side effects. My liver enzymes were 5 times so high as normally and before that I vomitted daily. Never realized it was a sign of a bad liver. After a break of 6 weeks - I refused to restart it during my lovely first vacation in TR - I restarted at 1 September. The plan was 2 weeks at each new dose and then increase my dose. You might have read my posts about this time everywhere on thalpal. Thursday before Christmas I saw no other option than to quit again. That time I had no blood work done but I knew which problems it cause (over 10) and decided it was time to stop.

Last thursday, 13th January, I restarted. I have decided to give up agressively chelation therapy. I am afraid that if I do so I will become permantely allergic for Exjade and my biggest fear so that I cannot tolerate it any longer. So long as I take something I do have a (kind of) chelation.

(...)

I have faith there will be a new chelation medicine in the next few years and I am willing to wait. First I felt sad I had to take this decision, but now I feel comfortable with it. [From what I heard in Antayla, I would not be able to take this new medicine]

Dori
Pyruvate Kinase Deficiency

Dore,

Do you also react badly to IV desferal?

Yes, desferal is not possible for me anymore. Although my pharmacy told me a few years later that my former doc may have prescribe desferal infusion with a too high concentration of desferal. (He said sometime like the doctor changed that) But since I have no proof, I have no idea and cannot show it to my new doctor. But nobody wants to try it again.

-----

O yes, I had itching too. Horrible itching. I also developed shingles. And they kept telling me it's an old ladies thing - I was 17yrs. When they inserted my port-a-cath my stitches fell out after only 2 days and the wound become infected and that's where I lost my first year of highschool. Since then I'd no choice but studying part time. The benefit is that you learn to know a lot of people. I was given SQ desferal when I was 4-6 years old but it unable to bend because of bumps.

http://www.thalassemiapatientsandfriends.com/index.php?board=5.0

Yesterday I was at the Dutch Hematology Conference (Wednesday) and it was today and it end tomorrow. However, I happend to chat for a while with someone of Novartis. And they finally get it! It is now allowed, also from them, to take it in the evening and it doesnt matter if your stomach (of belly) is full of food. His own words were "When you take it in the evening you have less trouble of the side effects. So why not?" Duhhh!
So yes, I finally changed my meds. Yesterday I took 2x 450mg and today only 1x450mg. Now it is going to be a lot more easier (for me) to take my supplements! When ll the xam are over and I got some time I will visit a very detailed vitamin store in Amsterdam (atleast I have high hopes).
He said more but I cant remember that. Ohyes, the doc next to him said "Desferal doesnt work while given after a blood transfusion. Huh? Ofcourse "What is the sense of MRI scans? We wont change our treatment when we know the level of iron". I quit and left.

Wow. I am astounded. Desferal doesn't know if you just got transfused and cannot differentiate between old and brand new iron. It is simple chemistry. Chelators react with iron and fix iron, so it can be removed from the body. When and where you got the iron is irrelevant. And the MRI talk? OMG! That is EXACTLY how it is determined if a patient needs to change the chelation routine.

Wow. I think this well demonstrates why patients and parents have to be as informed and educated as possible.

Welcome to the Dutch way of approach these kind of diseases. Remember this was at the 5th Dutch Hematology Conference. This is the fight we are fighting every day.

I have decided to open up this topic. It's necessary because I would spam your all. I will update my enterance with information.

You are most welcome to do so Dori we are here to listen.

Zaini.

I updated it but I cannot see it now. Probably not saved it.

I have decided to differently this time. Therefore I married my water bottle;) (I sometimes add a tiny tiny bit rose water. That's not bad, right?

I take only 125mg pills but later on 25mg pill at bed time. Times are 8AM, 1PM, 6PM and 10PM. With lots of water between. In that way I can take 500mg a day.

My ferritin has been moving between 1100-1300. In June 2010 it was 500.

Dori,

Lots of water is really really good and i am sure it will help  you eliminate the symptoms you were having,rose water ain't bad either,if it helps you drink more water its good .

Good luck .

I will post here.
I take Exjade now almost 3 weeks. I started with taking one tablet of 125mg at 8am, 12am, 6pm and 10pm. Since two days I take it all once after supper. However, I experience now already a month very painful joint. With very painful I mean I had to take pain killers during the nights when I had exams the following to get some sleep. Last night I had to take it too. Even when I am very tired I just cannot sleep because of the pain. Now I start experience also edema in my legs. Is this a common thing with Exjade? Is there anything I can do by myself? My knees also hurting lots.
I know I maybe should set an appt with my hem but I fear TIF's conference a lot. Also I am not going to stop Exjade because Exjade is my only option left. May excess free iron cause this problem?
Should I take lots of fluid and see what's happen? I have no idea and I would not bother any of my non-virtual friends with this. We've had a few scars the past days; some of them were very, very scary.

Hi Dori
Sara had trouble with exjade is well. She also had joint pains and stomach pains. Now she takes ferrifrox, she seems to be doing well that, have thought about taking that? Its really hard when you develop all these symptoms. I hope it becomes easy for you.
Alia

Hi Alia,
Although I long to ferriprox I do know it is not a solution either. I  had to stop with ferriprox because I could not walk of it or very slowely and tiny steps. But I hope to return from TIF's conference with lots of information about the combination therapy of Exjade and Ferriprox.
I am glad your daughter could make this switch. How's her fe level now?
Warm wishes,
PS I am happy to report I have no stomach pains.

And now I am back on deferirpone. Please read my first post as I have rewrite it and give your opinion. Thank you in advance.

Dear,

Before starting or dis continuing exjade,all the proper tests needed should be done,only that way you'll know if and how or why exjade is giving you trouble,and you said so yourself that no testing was done to determine that.

I know it must be hard to keep track of all these things and its annoying to get poked again and again and sometimes still not knowing what is the cause of all the pain you go through,but you have to keep going.

Fropm now on not only take your vitamins and water,but keep taking the tests that are compulsory with any medicine you are taking,be it exjade or defriprone,i believe defriprone gave you joint pains before? And you say you react to desferal?but have you vere tried it doing yourself,i mean mixing it with more water,making it more diluted and taking an anti allergy with it? think about it,its been a long time and you might be able to give it a shot again,because defriprone alone is not that good for liver iron.

I am sorry it took me long to  reply,but my house is a mess right now because of reconstruction and too much stress and no exercise has not helped at all either.

Hope this helps.

Dori,
I'm so sorry you have to go through all the pains. We are here to listen to you. Are the joint pains, hips etc the same intensity between Exjade and Ferripox? Which is lesser? Should you get another expert to look at your joint pains? Could it be unrelated? Are you saying your hip pains are renal pains? 
And yes, you should do monthly blood tests for liver and renals [we do prior to transfusion] with Exjade. Did the liver enzymes shoot up to 5 times the level immediately or progressively?
Please don't be too hard on yourself especially on your studies, your health is utmost priority, of course, we still need to strive for the best in everything we do.
Your health cannot wait, other things can, Dori.