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  #1  
Old Wed Jul 22, 2009, 12:44 AM
Steven Steven is offline
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Bleeding gums/cyclosporine

Hello,

Does anybody have any suggestions on dealing with bleeding gums? My father was diagnosed with AA and is on his 4th month taking cyclosporine (500 mg daily) and has been taking exjade for 2 months. His gums have been bleeding heavily and platelet transfusions only reduce the bleeding for a short time. We got him non-alcoholic Crest Pro Health mouthwash and this is his only method for cleaning his mouth (brushing makes the bleeding worse).

Also, for anyone taking cyclosporine, how long was it before your daily dosage was scaled back? I'm concerned about the effect 500 mg has on my father's kidneys.

Thank you!
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  #2  
Old Wed Jul 22, 2009, 07:54 AM
squirrellypoo squirrellypoo is offline
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This may be a silly question, but is he using a "soft" toothbrush? My gums used to bleed all the time (even when I was healthy) but for the transplant they insisted I only use soft toothbrushes and I haven't had any issues since I switched.

I'd definitely mention it to his doctors, though. There are meds they can give him to make his blood more sticky between platelets, and they'll also probably want to give him a prescription mouthwash that really kills everything.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #3  
Old Wed Jul 22, 2009, 12:44 PM
Hawaii Bill Hawaii Bill is offline
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Aloha,

There was a post on this board (IIRC) about the use of erythromicin to reduce gum swelling secondary to CsA. If you google "cyclosporine erythromycin gum hyperplasia", you can find some articles about it.

Of course, I don't know if using erythromicin is a good idea in your case, but it might be worth pursuing with the doctor.

Here's one link to a study I found:

http://medind.nic.in/iav/t04/i2/iavt04i2p53.pdf
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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  #4  
Old Wed Jul 22, 2009, 02:14 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Steven.

Your father should probably be using either salted water or hydrogen peroxide instead of any commerical mouthwash. Even if you choose a brand that doesn't contain alcohol, most mouthwashes contain flavorings and other ingredients that can aggravate a sore mouth. He might also try Biotene or Closys mouth rinses, which help patients with dry and/or inflamed mouths. I prefer the Closys because it just tastes like water but is very effective when my mouth gvhd flares up.

If he can, he might be able to staunch the bleeding by applying pressure to his gums with an ice-cold cloth or taking ice-cold drinks.

You're right to be concerned about monitoring your father's kidneys (via creatinine levels) while he's on cyclosporine. The doctor is undoubtedly doing this through his regular blood tests. Since every patient is different, there is no set timetable for scaling back the dosage. It's a balancing act between maintaining blood production and kidney (or other) toxicity. If possible, the process of tapering off cyclosporine should be done very slowly--some patients take a year or more to reduce their dosages--in order to maintain marrow function.

Regards,
Ruth
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  #5  
Old Wed Jul 22, 2009, 07:01 PM
Steven Steven is offline
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Thanks for all of the suggestions! We got Dad the softest bristle toothbrushes at the pharmacy, but his gums bleed constantly without even touching them. I'll definitely ask his doctor about azithromycin and my concerns about his kidney function.

I ask for copies of all of his CBC and ferritin test results. As of several weeks ago, his Creatinine was at 2.8 mg/dl and his e-GFR was at 23 mL/min/1.73m2. The doctor has not discussed what any of this means to us (it doesn't seem like he pays much attention to anything except his HGB, WBC and platelet counts), so I have to do some research and go armed with more questions.
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  #6  
Old Wed Jul 22, 2009, 11:15 PM
JEZ JEZ is offline
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Quote:
Originally Posted by Steven View Post
Thanks for all of the suggestions! We got Dad the softest bristle toothbrushes at the pharmacy, but his gums bleed constantly without even touching them. I'll definitely ask his doctor about azithromycin and my concerns about his kidney function.

I ask for copies of all of his CBC and ferritin test results. As of several weeks ago, his Creatinine was at 2.8 mg/dl and his e-GFR was at 23 mL/min/1.73m2. The doctor has not discussed what any of this means to us (it doesn't seem like he pays much attention to anything except his HGB, WBC and platelet counts), so I have to do some research and go armed with more questions.
In my case the creatinine was 1.6 (my healthy baseline was 0.7) and the GFR was 33 (my healthy baseline was >85) when my doctor decided to consult a nephrologist. The nephrologist told me I was in medically induced stage 3 kidney disease and had to come off the medicine (cyclosporine) that was causing it. She wanted my creatinine to get down to at least 1.2 and said she liked the GFR to be greater than 60%. I do not know what would relate to your case. I think the GFR calc is an indication of percent kidney function but a more sophisticated test of it may be needed for real accuracy.

JEZ
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #7  
Old Thu Jul 23, 2009, 12:25 AM
Hopeful Hopeful is offline
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Steven,

I agree with Jez that your father's creatine and GFR numbers appear very concerning. The drug manufacturer for Neoral/Gengraf recommends that a patient's creatinine level should not exceed 30% of their baseline (before treatment) to avoid increased risk of permanent kidney damage. If your father's hematologist is not responsive to your concerns, have his primary care doctor refer him to a nephrologist.

When his cyclosporine dosage lowers, his gums will improve.

Also, I've been told that the cyclosporine dosage should not exceed 5 mg/kg/day. What is your father's weight?

Unfortunately, we really need to be our own health advocates these days.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #8  
Old Thu Jul 23, 2009, 06:57 PM
Steven Steven is offline
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Very good info and advice, thank you.

I expressed my concerns to the doctor today about my dad's kidney function and suggested reducing the cyclosporine dosage. He agreed - starting today, we'll now take 300mg daily instead of 500mg. My dad is less than 110 pounds now (as opposed to 160 a few years ago). We're still taking 1000mg of exjade daily though.

Strangely enough, the doctor said today that my dad has a mix of myelodysplastic syndrome and aplastic anemia symptoms, so he can't really be classified into either category exclusively.
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  #9  
Old Fri Jul 24, 2009, 01:07 AM
Hopeful Hopeful is offline
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Hi Steven,

I'm also an AA/MDS mix and am similar in weight. My doctors had me on 200 mg twice a day to try to get a target trough of 200. However, my kidneys couldn't take it. So, I backed way down to 125 twice a day. My kidneys still weren't happy, so I lowered to 100 mg twice a day. It took almost a month for my creatinine to come down because of the kidney filtration issues. During this time, the Cyclosporine was still not clearing out of my system rapidly. So, my trough remained elevated. Now my trough is low again, but we just ignore it. I've read articles that state that trough measurements may not be the best guide for proper dosage for all people, given the newer micro-emulsion formulas of Gengraf/Neoral. They think that the peak readings, 2 hours after dosage, may be more telling for some people.

Watch your father's numbers. He's still exceeding the 5 mg/kg/day dosage. You may want to discuss backing down farther while the Cyclosporine clears out of his system. He can always go back up later, if necessary.

I'm curious...has your father's red counts been falling? My red blood cell counts have been on a steady decline before I even lowered the Cyclosporine dosage, and I'm now wondering/hoping my decreased kidney function may have had something to do with it.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #10  
Old Fri Jul 24, 2009, 03:16 AM
Steven Steven is offline
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Hi Hopeful,

This is the first time I heard of the term "trough measurements" so I'm not certain if we're being tested for it or not. I found out the Creatinine levels by looking at his ferritin test.

How long were you on cyclosporine before you noticed it had a severe impact on your kidneys? I haven't noticed any physical symptoms in my dad relating to kidney problems except frequent urination, but I figured that might be because of all the water I encourage him to drink. I'm actually not sure what an indicator of kidney problems is (besides checking creatinine/GFR/BUN levels on a blood test).

Yes, my dad's red blood count pretty much constantly falls. We go for blood transfusions every 1-3 weeks, and platelet transfusions every 1-2 weeks. His gums bleed so much I believe that has to be the main cause of the rapid decrease in HGB/RBC (it seems he goes to the bathroom to spit blood out of his mouth every 10 minutes or so).

Has your doctor suggested any other treatment such as vidaza? Our doctor says my dad's symptoms suggest that vidaza should be most likely to have a positive impact, although it did not have any effect after 4 cycles when we tried it. If your AA/MDS is similar, maybe vidaza is a possibility for you to try?
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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  #11  
Old Fri Jul 24, 2009, 12:40 PM
Hopeful Hopeful is offline
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Steven,

If your dad has to get his blood tested right before he takes his next Cyclosporine dosage, then he is probably getting his Cyclosporine trough tested. I would ignore it, if it is low. If it is high (above 250), that would be another reason to lower his dosage. The trough was what got me into trouble with my Cyclosporine dosage as my doctors were determined to bring it up! My dosage has been as high as 550 mg/day! I've gone up and down on the dosage since ATG. I will never exceed 5 mg/kg/day again, after all the literature that I've since researched on renal toxicity.

Increased urination was a sign for me that my kidneys were having filtration issues. On the lower dosage, it has gone away despite drinking the same amount of fluids. At the time, I also had rationalized that I just must be super-hydrated, but it wasn't the case. While on the higher dosage I also felt EXHAUSTED (more so than the usual anemic tiredness)! It was hard to stay awake past 7 pm. That also has changed. Looking back, my creatinine was elevated over 30% of baseline for 3 months. I was on 350-400 mg for about a month. Because I was nervous about taking so much, I did a bunch of research during that time and had a good excuse to lower my dosage as soon as my GFR dropped.

My doctors don't know whether I have MDS or AA. I don't have chromosonal abormalities. Since ATG can be effective with both AA and hypocellular MDS, it was a safe option to try. I've had a decent partial response in that I haven't had platelets or RBC transfusions in 7 months, although my counts are still low. My doctors don't want to treat me with MDS drugs unless they are sure that I have MDS. I have another BMB next week, which I hope is more telling. If not, it may be time to take this to NIH. Is your dad still on Vidaza? Have you had second opinions? Has he been tested for PNH?
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #12  
Old Fri Jul 24, 2009, 04:45 PM
triumphe64 triumphe64 is offline
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I had swelling in my ankles. The doctor thought it was due to too much cyclosporine. She tested for this and confirmed that was the cause.
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #13  
Old Mon Jul 27, 2009, 01:45 PM
Lisa V Lisa V is offline
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Steven, I just want to echo what some of the others have said about creatinine. Our doctor becomes concerned any time Ken has a reading over about 1.4. He told us that at 1.4 his kidneys are only operating at about 75% efficiency, which is not great but it's liveable. Anything over that could eventually lead to kidney failure, so they monitor it very closely. We try to keep it between 1.1 and 1.3, and he's had to drink LOTS of water to do that. He's only taking 175 mg. CsA per day and weighs about 180.

I suppose it depends on what your father's baseline was too, but the fact that his doctor was not paying much attention to this before you pressed the issue is rather alarming to me. Yes, we do have to be our own advocates, but in my opinion he should never have allowed it to climb to 2.8 without saying something!

We also asked our doctor what signs we should look for that his kidneys were starting to slow down. He said that apart from the test numbers there were no symptoms, at least until it gets really severe, and you don't want to let it get that far.

I guess Ken technically falls into the AA/MDS confusion category too, but we've been treating it as AA, just with a chromosomal mutation which usually indicates continued CsA dependency. That's why we're still doing the balancing act rather than attempting to taper again (he relapsed the first time we tried it). Can I ask why your father is being treated with CsA only, instead of the usual ATG/CsA combo? CsA is not normally part of the MDS arsenal, I don't think, and for AA it seems to work best in conjunction with ATG. I'm thinking he might not have required such a high dose if he'd had the ATG to kick-start the process, but maybe I'm interpreting that wrong. I'm not sure I really understand what they're trying to do here.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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Old Wed Jul 29, 2009, 02:26 AM
Steven Steven is offline
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Hopeful: Did you have your BMB yet? Good luck! No transfusions in 7 months is a very good sign.

My dad was actually re-diagnosed with MDS today, and we stopped the cyclosporine treatment, and will be restarting with vidaza. The doc's reasoning is that our 4 month treatment with vidaza at the beginning of the year wiped out all abnormal cells at the time, and resulted in an AA diagnosis in March. We haven't had any 2nd opinions yet, but that is probably a good idea. The doc never mentioned PNH as a possibility.

Triumphe64: How was your doctor able to confirm that cyclosporine caused your swelling? Did she give you medication to reduce swelling, or reduce your cyclosporine dosage?

Lisa: I'm glad Ken's weight is so high, 180 sounds healthy considering his diagnosis.

Our doc actually said a 2.8 creatinine is not extremely high. That statement is a bit concerning, but we just stopped our cyclosporine treatment today (although exjade also has an effect on creatinine and kidney function, I think).

We actually did get an ATG treatment a few months ago (a month after we started taking cyclosporine), sorry I wasn't clear on that. When the doc first prescribed the cyclosporine, he said he wanted to have my dad on 10mg for every kg of body weight, and continue for 6 months. It sounds like most or all other patients on this forum receive much less than that.
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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Old Wed Jul 29, 2009, 02:23 PM
triumphe64 triumphe64 is offline
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[quote=Steven;10372]
Triumphe64: How was your doctor able to confirm that cyclosporine caused your swelling? Did she give you medication to reduce swelling, or reduce your cyclosporine dosage?

She reduced the cyclosporine. I should have mentioned that I also was having a lot of tremors. She is experienced and put all these symptoms together.
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #16  
Old Wed Jul 29, 2009, 06:21 PM
Marlene Marlene is offline
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I cannot believe the doctor has not stopped the Exjade with a creatinine of 2.8. John's doc stopped it when his spiked to 1.7 and John's Exjade dose was only 750mg. It took about a month for it to come back down. He also sent John for sonogram on his kidneys. They started it back up again at lower dose but it sent the creatinine up again. No more Exjade for John.

There's a real risk of kidney/liver problems with Exjade and I would err on the side of caution. How high is his FE and how long has it been elevated?

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Jul 30, 2009, 12:50 AM
Steven Steven is offline
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Hi Marlene,

How often did/does John's doctor test for creatinine and FE? We started taking cyclosporine 4 months ago, and exjade 2 months ago. The counts as of 7/7/09 are: 921 ng/mL Ferritin, and 329 mcg/dl Iron and we only started monthly ferritin tests in 5/5/09 (it was 2270 back then).

Our first test for creatinine was in 6/8/09 and it was only 1.3 then. In the span of 1 month, it apparently increased from 1.3 to 2.8, and it probably increased further in the weeks following until we finally stopped taking cyclosporine yesterday.

I should have asked for more frequent tests, but the doctor didn't seem to think it was a big deal. Since we're still taking 1000mg exjade daily, I'll ask for a new test when I see the doctor in a few days.

Thanks,
Steve
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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Old Thu Jul 30, 2009, 07:28 AM
Marlene Marlene is offline
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Well a couple things that jump out at me, but first, when John started Exjade, he had a cbc weekly and kidney/liver function tested monthly. Exjade can effect the BM in a very few so you need to keep an eye on the blood counts. It is also known to cause serious kidney/liver problems so you need to monitor that closely. His doc at Hopkins wanted the kidney/liver to be checked weekly for the first two months.

I would come off the Exjade now especially with such a high jump in the creatinine within one month. Iron is not a problem at this point in treatment. It takes a long time for iron to cause a problem and all the exjade is doing right now is complicating things. IMO, you don't need to consult the doc to stop the Exjade. We did it all the time when John needed a break from it. It's NOT like stopping a blood pressure med. Docs don't always look at the big picture and just prescribe based on labs. Just because there's an oral drug to treat iron overload, it's easy to prescribe it and they do without fully considering the impact it can have on someone just coming out of their ATG treatment. To me, risk of Exjade outweighs the benefit right now. I'm not saying never to chelate to get the iron off but maybe now is not the time. And you may need to look at desferal as an option.

Second. FE is an acute phase reactant. This means that anything can cause it to be falsely elevated especially any inflammation. It is highly unlikely the Exjade dropped the FE by that much in just two months. It takes a long time to get rid of iron. One of the two FE lab results is off and unless you've have well over 40 red cell transfusions, my impression is that the higher number is wrong. John's FE would have huge swings....it would fluctuate between 4000 and 5000. There would 500 point differences month to month when his FE was in the 3000 range.

Please read about Exjade at www.rxlist.com

Sorry to be so direct but I am seeing more and more people put on Exjade as if it were no big deal. Also, Exjade should not be started until you have at least two labs test with FE over 1000.

If you have any other question on Exjade, set up another post for it and other will respond with their experience. I will be away for a few days and won't be able to respond.

Good luck and its great you are checking all this stuff out.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sat Aug 1, 2009, 03:20 AM
Steven Steven is offline
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Thanks for all the info Marlene! We've had over 20 red blood transfusions (over 40 units), so I think the current ferritin level is more or less accurate. I'll see what the next ferritin and creatinine levels are before deciding whether to interrupt the exjade. Since we stopped taking cyclosporine, I'm hoping to see some sort of improvement, even though it hasn't been long.

It's interesting that you think exjade is sometimes prescribed almost unnecessarily, because I spoke to a nurse about this about a month ago, and she had a similar opinion on it.
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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Old Tue Aug 4, 2009, 06:00 PM
Marlene Marlene is offline
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Hi Steven,

Hope your dad gets this labs done soon. From our experience, it can take up to three months for creatinine to return to baseline levels after stopping Exjade. In most, cases though, it returns within one month. I don't know about Cyclo.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #21  
Old Sat Aug 29, 2009, 01:17 AM
Jen B Jen B is offline
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Hey Steven,
My son had some sever reactions to Exjade.
We are just recently out of the hospital. I started him on Exjade again (first time in April) and that evening he had 102 fever. In the hospital his whole body got swollen, red and rashy. They are attributing this to a possible Exjade allergy. Not doing that again. His kidney functions jumped considerably too - enough to warrant a nuclear test while we were in the hospital.

He is on Cyclosporine too and the doctors monitor his levels weekly as well as his Creatinine and BUN levels.

As for your first post about the swollen gums, the doctors have my son on Clorohexadine, a medicated mouthwash that he uses 2x daily and it seems to help.
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  #22  
Old Wed Sep 2, 2009, 01:20 AM
Steven Steven is offline
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Hi Jen,

That's the first time I heard someone have such a severe reaction to exjade. I hope your doctor has alternative chelating treatments for your son that he can tolerate better.

My dad's ferritin is currently below 800, so we stopped the exjade for now. Creatinine is down to 1.9, which is better than before. However, we've been getting 2 units of blood each week, so the ferritin level may rise again fairly quickly.

Thanks for the tip about chlorhexadine! I'll definitely be on the lookout for that. I think some over the counter mouthwashes have it, otherwise I'll ask my doc if he can prescribe peridex.
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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