So scared and confused...please help?

[Grifmat]

Hello everyone, I am new to this site. 3 weeks ago my mom's platelets dropped to 25. She is 70 but seems more like 50. She is very healthy, active and energetic. Since the day her platelets dropped it's been a roller coaster. She has the little red dots and the bruising. Her platelets keep dropping and then she gets a transfusion and they go up but they drop again. They drop between 10 and 6 a day. They have been as low as 7. She hasn't had any bleeding and she looks and feels great. She is slightly anemic and her lymphocites are a smidgen high but the rest of her blood work is normal. She has been on cyclosporin and blood clotters for about a week. She and my dad, who are usually so active, have become terrified of everything. They are so scared and they have stopped doing all the things they love. They have been married for 50 years and my mom has made dinner for my dad every nite of those 50 years. She hasn't made dinner because she is afraid to bump herself. We used to go shopping once a week and now she won't go. She used to see her grand children all the time and now she afraid to see them because she doesn't want to catch a virus. My dad practically spoon feeds her. I'm so worried about them. I don't know much about these diseases but I don't think they should get ready for her to die! The doctors aren't sure what is causing her symptoms yet. They have metioned AA and MDS but can't confirm it. She will b seeing a doctor at Yale New Haven's Smilow Center and we hoping for more answers. If anyone has any advice or answers for me and for them it would be so appreciated. I love my mom. She is my best friend and I can't stand to see her this way when she is still so healthy and has so much to live for. She just became a grandmother for the 6th time and it's the first baby girl! She has wanted a grandaughter for so long. I just don't want her to give up and I think if we had some understanding of what is going on and that she could be okay it may bring some hope for her. Thanks for listening.

[Birgitta-A]

Hi Grifmat,
Hope the doctor at Yale New Haven's Smilow Center will be able to make a diagnose! Perhaps your mother has ITP (Immune Thrombocytopenic Purpura) that not is a cancer but an autoimmune disease, These patients should not have platelet transfusions and are often treated with Prednisone or similar drugs.

You know it is not only the platelet count that is important - it is the quality of the platelets too. Your mother seems to have well functioning platelets since she has been as low as 7 without bleeding.

There are drugs that can improve platelets - for example Promacta - but they are not approved for MDS.

We can only try to avoid everything that can decrease platelets - look out for painkillers that often decrease platelets.
http://www.pdsa.org/about-itp/warnings.html

Tell your mother that bruising is not dangerous. I have had blood blisters in my mouth and small nose bleedings since diagnose 2006 when my dysfunctional platelets are low (22).
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, supportive therapy until 2010. Since then positive effect from Thalidomide + Prednisone

[Grifmat]

Thank you Birgitta-A. My mom's low platelets are thought to be auto immune but she is getting transfusions. It's hard to believe that anything is even wrong with her. Except for the fact that she is scared and worried and sad, she looks great and she feels great. She actually cleaned house today and ironed and then made dinner. My two little boys came over to see her and I think it did her and my dad a lot of good. She just started taking Amicar? She is only bruising and does not have the little red dots anymore. I'm sure letting her know the bruising isn't dangerous will give her (and me) some peace of mind. It's funny...I have three sisters and we look like we've been through hell...but my mom looks fabulouse. I am hoping that the fact that she is healthy and looking and feeling good are all good signs that she will be okay.

[Birgitta-A]

Hi Grifmat,
Well we can only hope that your mother will be examined by a hematologist soon. If the doctor she has now really thinks that she has an autoimmune disease the doctor should try Prednisone or a similar drug. Amicar is OK but it never helped me.

Good that your mother feels better!
Kind regards
Birgitta-A

[sstewart09]

Amicar won't boost platelets. It helps with clotting so if bleeding occurs, the platelets are "stickier" from what I've been told.

[Grifmat]

She has been seeing a hemotologist. She is seeing one here close to home and then she sees the doctor at Yale New Haven whose specialty is hemotology and bone marrow failure. Yale had a conference on Friday with other hemotologists and oncologists to go over all of my mothers blood work and medical records to determine exactly what is causing her platelets to be so low. It's been a little confusing because they started with chronic lymphatic leukemia and then changed it to aplastic anemia and now the doctor at Yale isn't convinced that was it is. Like I said, her platelets are very low but she isn't bleeding and her bruises clear up almost as quickly as she gets them. The little red dots have all gone away as well. She feels great. They did give her prednisone in the hospital but they didn't see any changes so they decided to take her off of it. Hopefully we will know more on Tuesday. Thank you for your replies. It all helps.

[Birgitta-A]

Hi Grifmat,
Good that your mother has contact with hematologists. I was only surprised that she is treated with cyclosporine so soon without a diagnose. Perhaps Prednisone didn't have enough time to work?

Have you got the results from the BMB?

Positive that your mother feels great!
Kind regards
Birgitta-A

[Grifmat]

Neither my mother or my father have ever really been sick their whole life. None of us have. The last time my mother was in the hospital was when she had my sister 39 years ago...lol. Neither of them have ever had to take any medications. They are just so niave when it comes to doctors. They don't have copies of any of my mom's blood work (except for the last one that referred to) or her BMB. I actually have quit my job so that I can go to all of the doctor's appts, blood work, and transfusions. I am confuse as to why she wasn't on the Prednisone for long myself. I think she was only on it for about a week when they tapered her off. Her last dose was Friday. They have her on 700mg of cyclosporine and she takes 6 amicar tabs 3 times a day. That's a lot of amicar. her platelets when down to 7 and they gave her 1 unit of platelets and it went up to 13. Yesterday (saturaday) they gave her 4 units and she has blood work tomorrow am (monday). I'm interested to see what her counts are. She does have hypothyroidism. She has been taking levothyroxin for years. She also took Fosomax for about 6 years and she has been off of it for about a year. I've read some research that both medications can cause low platelets but I'm not sure if it pertains to my moms platelet issue or not. I may ask about that in the "drug" thread. I really can't tell you how much I appreciate your help. This is all so new to us and scary. Any info helps. I told my mom that knowledge is power and if she is too overwhelmed to find out all she needs to know then I will do it for her. Thank you.

[ssdavi71416]

Grifmat

Hopefully the Hematologist will be able to give you more information.

Platelets do not last long. For me it was about 2 days. I used the amicar and only had a transfusion when actively bleeding like from the gums or nose.

That does seem like a lot of Amicar. I am a big person 280 lb and I was on probably 3 tablets 3 times a day with platelets below 10. Hopefully they are checking the cyclosporine concentration in the blood to determine the dosage needed. I am tested every other week and they try to maintain my trough levels at aroung 200. Cyclosporine can also effect kidney function so they typically measure your Creatinine and blood urea nitrogen. Your mom needs to drink a "lot" of water.

Have they talked about ITP, since it is involves the platelets and not the other blood lines.


You are in my thoughts and prayers.

Scott

[Hopeful]

Hi Grifmat,

I think it is wise for your mother to be cautious when her platelets are below 15k - and especially when they are below 10k! Brain bleeds can happen and there often are no warning signs. I am not trying to scare you, but make you aware that a little precaution now may benefit her in the long term.

She also should avoid getting ill because a fever will burn through her platelets at a rapid rate.

One of the things about bone marrow failure diseases is that often you can not tell by looking at a person that they are seriously sick. I remember being in denial that I had anything wrong at the time of my diagnosis because I "felt" great.

700mg of cyclosporine per day is a very high amount! The typical therapeutic dosage is 5mg/kg of body weight/day. So, a dose of 700mg would make sense if she weighed ~309 lbs.

Good luck at your mother's appointment. I hope she gets some answers and treatments that put her on the road to recovery and return her to her normal activities.

[Grifmat]

Thank you for your help. She is taking 700mg a day of cyclosporine but she only weighs 140 lbs so I'm not sure why she is taking so much. I will be going with her to her doctor on tuesday and then next tuesday we will be going to the specialist at Yale...hopefully we get some answers.

[NLJabbari]

Re: the Cyclosporine, is she taking 350mg 2X daily? Cyclosporine is usually given in 2 doses daily 12 hrs apart. Drs like to keep the trough level at between 200-400 depending on certain factors. This is tested at least once weekly an hour prior to the next dose. Yes, they should be checking your moms Creatinine and BUN as well as her Magnesium levels. Cyclosporine (CsA) can deplete her of magnesium. If you don't mind me asking, what brand of Cyclosporine is she on?

I'm wondering if perhaps since she hasn't had an official diagnosis, the Cyclosporine is given to her to see if indeed her case is Auto Immune related and if this might help correct the problem to a certain degree? Hope she gets a diagnosis soon so that you can find the direction you need to go. In the meantime she needs to try to stay as healthy as possible via hand washing and just being careful in general.

[triumphe64]

I take magnesium oxide. Shop around for the best price.
You can take as much as you can tolerate (it is a laxative).

[Grifmat]

Hi NLJabbari, She does take two doses. She takes 3 at 10am and 4 at 10pm. They must be 350mg each since it is a total of 700mg. They seem to think it is autoimmune but who knows. I mentioned in another post that my parents don't as questions. But I do. I have quit my job so that I can go to all her appointments because I just have too many questions and my parents keep saying "I don't know". I do believe she is in good care but I don't go along with the "doctor's are God" thinking. I told my mom the other day that knowledge was power and the more she knew and understood what was going on and what they were doing the more at ease she may feel. She is very careful right now with staying healthy. Thankfully she has always been very, very healthy...up until now. Lots of hand washing and purell. She is taking Gengraf which I believe is the generic cyclosporine....which I guess is okay but again...I just don't know. My Grandparents on both sides, my parents, my siblings, Aunts, Uncles, cousins, etc have always been healthy. My grandmother took medication for highblood pressure but no one else in my entire family has ever needed to take meds and never had any medical issues. Everyone has lived well into their 90's and died in their sleep. This is very very new and unknown to us. What is a trough? I've heard this many times. Thanks for your reply. Everyone has been so helpful...it really does help to know you aren't alone.

[Hopeful]

Hi Grifmat,

Don't be afraid of setting up an appointment for a third opinion. You are fairly close to NIH, and they are one of the best for rare conditions like this.

Gengraf is fine. That's the brand that I took. The level of cyclosporine in her system looks like a bell curve that peaks 1-2 hours after taking it. At about 10-12 hours later, it will be at its lowest level, or trough. This trough is a useful measurement to determine if your mom is at toxic levels. Some doctors also use it to determine a target level, but this doesn't work for people who metabolize the drug very quickly.

I would seriously question the dosage that your mom is taking now with the Yale team - don't wait for an appointment. Cyclosporine is a powerful drug that can cause irreversible kidney damage. It seems like her dosage was based on her weight in pounds and not kilograms! (700mg/5=140 lbs)

Be sure to ask the doctors why they don't think it is AA and why they don't think it is ITP nor CLL and why they think it is autoimmune. This information can be very revealing.

Good luck! Your mom is lucky to have you as her advocate!

[Grifmat]

Hi Hopeful, Thank you...my mom is my best friend. I'd rather hang out with her than any of my friends. I would do anything for her and this has just spun our whole family for a loop. I believe they did base her dosage on her weight...that is what they said they were going to do. I would think they would understand the difference between pounds and kilos...at least I hope so. She has been dx several times in the last 3 weeks. ITP, CLL and then AA. Then she went to Yale and the doctor there said he wasn't so sure. Friday was a panel discussion at Yale to discuss her symptoms and to look over her labs and hopefully come up with a dx. She had blood work today and her platelets were at 9. That seems to be her go to number. She is always at 9 and then she gets a transfusion. I am more than determined to get another opinion. We only live about an hour from Boston and the Dana Farber Institute which I have heard is excellent. I will research NIH as well. Thank you for the info and I will keep you all posted.

[Grifmat]

I'm curious. What is the difference between bone marrow failure being auto immune or not auto immune? If it's auto immune does it mean that her bone marrow is making platelets and they are being attacked? If it's not auto immune then the bone marrow is not making the platelets and then there aren't any to be attacked? I may be putting it into way too simple of terms but it is confusing to me.

[NLJabbari]

Hi Grifmat,

Re: Cyclosporine dose-generally when a patient is introduced to Cyclosporine, they are monitored to make sure the kidneys aren't being stressed-out. Not all brands of CsA's are bio-equivalent or processed in the same manner. Gengraf is the generic for Neoral and it has an increased bioavailability in comparison to Sandimmune. My son was recently switched from Sandimmune to Gengraf and his doctor ordered him not to eat 2 hours prior and 1 hour post his dosage. She said this would help absorb the med. best.

Again, I think your mom is taking a high enough dose that she should be monitored and more than likely should be taking magnesium. My son has to take 4 (Mag-Ox 400mg each) just to stay in the lower range of "Normal" Magnesium levels. He takes 2 w/lunch and 2 w/dinner.

[Grifmat]

Thank you NLJabbari, Thank you all of you. You have all been so helpful. I have learned so much. It is helping my mom deal with it too. She seems more positive than before. She was just shaking all the time because she was so scared. It really does help to understand and know what you are dealing with.

NLJabbari- I believe they are monitoring my mother while she is on the high dose of the Gengraf. It's only been 12 days so we are just waiting. I'm wondering if we should ask the doctor about not eating before and after taking her meds....and about the magnesium. How old is your son? I have two young sons. I hope he is doing well.

[NLJabbari]

Yes, I would ask her doctor about this. It wouldn't hurt...

My son is 19 y-o and has been dealing with SAA since he was 10. He is doing okay and has really learned to live with this. We are however still searching for a BMT match just in case

Thanks so much for asking.

[Grifmat]

I have a 10 year old and a 12 year old. So young for your son to have to go through all this...how brave and strong you both must have had to be. So glad to hear he is now 19 and has learned to live with it. It really does become a new normal...even after only 3 weeks with my mom we have learned to "live with it". She sees her doctor today...hopefully we will have some news and hopefully it will be somewhat good.