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AA Aplastic anemia

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  #1  
Old Sat Jan 21, 2012, 04:09 PM
julestheo julestheo is offline
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Smile changing from cyclosporine to cellcept

Hi
I have SAA and have had ATG (rabbit) Sept 2010 and been taking cyclosporine since then currently 175mg a day(total) but my drs have been concerned about my kidneys as my GFR level is 39 plus my colesterol has gone way above the accepted rate (normally I am around 5 but now at 9.2) so it is of real concern along with high bp all due to my lack of tolerance to the cyclo so it has been decided that I need to go on statins and an alternative immunosuppressant called cellcept. I was wondering if anyone else was in the same situation as me and how their experience has been as I am really anxious of changing to cellcept. Currently my blood counts are pretty good h.b 12.5 platelets 197 and my other blood counts are in normal range thanks be to God.
Thankyou
Julie
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  #2  
Old Sun Jan 22, 2012, 10:16 AM
Marlene Marlene is offline
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John was never on either of those but many here have found it helpful to really drink a lot of water to help the kidneys when on cyclo. Hydration is very important when on cyclo.

Also, since your measurements for cholesterol are different from our in the USA, I cannot tell just how high they are. But I wanted to suggest you not add in the statins until you adjust to the cellcept. Statin bring their own set of risk and in rare cases, bone marrow failure or suppression. So speak to your doctor about the overall drug strategy.

Who knows, maybe with the switch to cellcept, both BP and Cholesterol will come down on their own.
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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 90K.
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  #3  
Old Sun Jan 22, 2012, 01:08 PM
Mary4Mike Mary4Mike is offline
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Julie,
I have to agree with Marlene about embarking on 2 new drugs at once. If there are problems, how do you know which one to attribute them to? Mike took Cellcept post transplant for maybe 100 days - I can't really remember. He didn't experience anything that, I can recall, while on it. They weren't really watching choloesterol levels at this point, but now, 2+ years post transplant, it has become an issue because of the immunosuppressant that he is currently taking - Rapamune (sirolimus). His lipid counts are all elevated (HDL in normal range). The internal medicine doctor wanted to put him on a statin. After consulting with the BMT doc, who wasn't as alarmed with the numbers, we are going to hold off 6 months or so and see if supplements, diet, and exercise can have an effect. She said if it doesn't and he is still taking Rapamune, they usually put people on Lopid for cholesterol. If I am reading this correctly, this is a fiber based drug. I hope it doesn't come to that, but it sounds better than a statin.

You have to be able to trust your doctor, but DON'T be afraid to ask questions. Statins are hard on your liver and kidneys. They also deplete your body of Coenzyme Q 10. I would discuss supplementing with this with your doctor. Perhaps you could try lowering your cholesterol naturally as a first step. Let your body become adjusted to the Cellcept, recheck your cholesterol in a few months, then make the decision about a statin.

Of course, this is just my opinion and I am certainly not a doctor. Everyone is different. All the best to you in this decision making.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #4  
Old Thu Jan 26, 2012, 05:27 PM
julestheo julestheo is offline
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Smile

Thankyou both for your posts I will take on board what you have said and have now started taking the cellcept my blood counts were good yday when they were checked infact they have risen slightly, I am also trying to lower the colesterol myself with products available so will see how that goes.
Once again thankyou for your comments
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  #5  
Old Thu Mar 15, 2012, 06:49 PM
julestheo julestheo is offline
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Update

Hi Marrowforum Friends

Its been almost 2 months now from the switch from Cyclosporine to Cellcept and I am happy to say that I seem to be getting along with the new drug pretty well my kidneys are stable and my blood counts are fine H.B 13.0 Platelets 186 White Cells 4.8 and Neutrophils 3.3 Dr's seem pleased. Not sure how my cholesterol is though as haven't had it checked yet but my B.P is in normal range and I have lost a further stone so I am sure that will help and I seem to have a lot more energy and have taken up exercise classes.
God bless
Julie
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  #6  
Old Fri Mar 16, 2012, 12:33 AM
Neil Cuadra Neil Cuadra is offline
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Wow! Great news, Julie.

It's hard to get a handle on cholesterol while you are still undergoing treatments, but eventually they'll want to check if you're like so many people these days who have high cholesterol despite a proper diet and appropriate exercise, in which case you might end on statins. In my opinion, the cholesterol issues are long-term and not the foremost concern during recovery from aplastic anemia. But the doctors know best!
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  #7  
Old Fri Mar 16, 2012, 03:48 PM
Marlene Marlene is offline
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That's great news!!! I'm sure your cholesterol will normalize also.
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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 90K.
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  #8  
Old Fri Mar 16, 2012, 07:51 PM
BerryP BerryP is offline
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ciclo intolerance.

Hi Jules, i'm also in the UK and SAA still on ciclosporin though cholesterol is high, they seem more concerned about my iron kicking my liver. Did they do a split of the cholesterol figures cos mine is high but apparently its triglycerides that are high with me. I was diagnosed Sept 2010 with SAA, had rabbit ATG Nov 2010, and bone marrow confirmed back where we started in May 2011. Live on other people's blood and ciclo does not keep my counts good, I drop to hgb 8.0 every four weeks but platelets good at 40 ish and I avoid folks so white cell count though low is functionable. I have never heard of cell cept and with such good counts on ciclosporin it seems mad to withdraw it. Have they tried you on another brand first? Do you take anything else that might cause them to withdraw ciclo? Those figures seem wonderful to me and statins and cellcept seem mad to do together because if one or other disagrees with you how will you know which. Do you see your docs often, can you discuss the matter with your gp even if you cant see your consultant yet? So many questions but we all sit in the same boat and we would all wish you well
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  #9  
Old Sun Mar 18, 2012, 05:04 PM
julestheo julestheo is offline
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Hi Berry!

They don't seem concerned about my iron as the levels are fine, they did not mention any other immunosuppressant other than the Cellcept whch is the brand name the actual drug is called Mycophenolate Mofetil which I took for about a month before starting my statins as advised by other members on the forum plus my GP as you pointed out I would not have known if a problem would have arisen which drug to blame if I started both at the same time. Fingers crossed my cholesterol will come down by the next time it is checked although the blood pressure has stabalised and so have my kidneys so it looks as though coming off the cyclosporine for me was the right decision although I was terrified as I view that drug as my safety blanket I was so fearful of coming off it. I go to hospital each week to have my blood levels checked and I see my Consultant every 6 weeks and also the Nephrologist.
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  #10  
Old Wed Apr 4, 2012, 12:34 PM
julestheo julestheo is offline
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cholesterol

Hi Everyone

Just an update on my cholesterol since changing over to cellcept and taking the statins I had it checked last week and got my results today I am so releived and happy to say that my level is now 3.4 compared to 9.2 several months ago this can only be of tremendous benefit, so along with a healthy low fat diet, exercise and the loss of weight I think this has contributed in such a relevantly short time.

Thanks for your continued support
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  #11  
Old Wed Apr 4, 2012, 03:21 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by julestheo View Post
Hi Everyone

Just an update on my cholesterol since changing over to cellcept and taking the statins I had it checked last week and got my results today I am so releived and happy to say that my level is now 3.4 compared to 9.2 several months ago this can only be of tremendous benefit, so along with a healthy low fat diet, exercise and the loss of weight I think this has contributed in such a relevantly short time.

Thanks for your continued support
Great improvement, Julie. Statins like Crestor, Lipitor, Zocor, and generic simvastatin have a good success record, at least for people in their 40s and up. I guess that's why about about 7 million people in the U.K. and 32 million Americans are on statins.
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