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MMF (Mycophenolate Mofetil) -Anyone

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3 months 11 hours ago - 3 months 11 hours ago #73664 by Aaklon
So I have been a silent reader for more than one year since i was diagnosed with ITP. Before beginning I would like to describe my unusual story of ITP.
So 2 years ago around mid-August I got HFMD ( HAnd Foot Mouth Disease) and after a weak all my ulcers healed. Post that in September I was diagnosed with Acute Hepatitis with a Total Bilirubin Count 7 which i and my current doctors think was caused by the same HFMD that i had the prev month. Moving on to October I had developed Acute Pancreatitis was treated in a local hospital and discharged after 10 days. And in a period of 3 months around mid January my liver enzymes went back to normal and i was weaned of the medication. Note that during this entire period I had Platelet Count between 250K-400K. As I felt that life was getting back to how it used to be, i was unaware of the fact that my fate had something else written. So last year in mid feb that is after 1 month after being off medication, we travelled to my grandpa's house. I dont know whether i contracted while travelling through the train or before or after that, i developed a fever after 2 days of reaching my grandpa's house. We all thought it was some normal infection but it wasn't. 
In the next two days I developed Shortness of breath and chills and we rushed to the local hospital. I remember I had elevated Bilirubin which i thing was due to fact of taking paracetamol every 6 hours which i still regret due to consultation of our family doctor along with a 70K platelet count (this was the first time in my life i had low platelets)high neutrophils and very low absolute lymphocyte count. I was also tested for some common viruses like malaria dengue etc. which all indicated no current infection due to this viruses. I was happy that I had no such virus and was reassured by the doc it was just some normal viral infection and my counts and liver levels will get normal once i get fine. But things took a wrong turn. The next day I did not have much of fever as much as i remember it was not above 100F however contrary to what i thought my body had actually lost the fight. In night I could not sleep had pain in my left hypochondrium. My morning i could not even move i had vomiting. I could not even breathe. Upon reaching the emergency i was admitted in saturation. I had subconjuctival haemorrhage in both eyes, very high pulse rate, very low bp, 20K platelet count, 9 hb, 3k wbcs, 1500 ferritin, high liver enzymes, high creatnine, high triglycerides, high crp and i dont remember what more the only thing which i was told was i will be fine and later found out that my parents had been told that it was nearly 10% chance based on my results and symptoms that i would survive and i managed to pull it off ;) . I was diagnosed with Secondary HLH and ARDS. Was started on 2000mg Pulse Prednisone, Broad Spectrum Antibiotics and was on Bipap Support upon which i heard the docs saying that if i dont improve on it i would on a ventilator so i pushed myself as i did not wanted to ventilated. Multiple viral and bacterial tests were sent which all came out to be negative. They only didnt sent a blood culture and also didnt do  marrow biopsy which could have actually did i even have hlh or was it something like sepsis. Anyways I soon improved was moved out of the ICU in 5 days and with improved blood results and clean x ray was discharged with antibiotics and tapering steroids (120 mg initially) and with a platelet count of 245K and was referred to one of the best hospitals in our country which is about 3 hour distance from my house for further follow up and investigation so as to detect if i had primary hlh or some other autoimmune disorders.
So two weeks later i visited their rheumatology clinic and was given a big list of tests and cbc along with some nk cell activity perforin tests and few more to rule out primary hlh. To my good luck which i thought that time all tests were coming normal only had high cholestrol as i didnt stop binge eating as i was not told that i did not know anything about steroids at that time.  So I was slowly reducing the dose of steroid and all my tests coming in my favour i noticed blood tinged nose secretions and also multiple red spots in my mouth. My next appointment was month later and i had been on 10mg pred for a while and the day i had to start 5mg pred my sister noticed bruises in my hand and several petechiae. I googled up and found a video about blanching dots on the skin. SO on performing the test myself i found it was no ordinary dots and it was something serious. I went for a cbc and found out i had a platelet count of 8K and MY JOURNEY OF ITP BEGINS - MAY 2023
So i was landed in a local hospital for platelet infusions that did no good and increased my platelets by mere 1K. They could not understand what was going on and I was sent tp the hospital back again where i had my followup the next month. Again loads of tests and infusions which all came negative. Finally a marrow biopsy was done to rule out some malignancy which it ruled out as well. I was sent back to home with an increase in the dosage of pred. I hit 40K and was tapered to 50mg from 60mg and was called to weeks later. But due to my intelligent family doctor i was again in trouble. I was taking PPIs with steroids and i developed some diarrhoea and he told me your immunity is weak so you need to take antibiotics right away and i did what he said and the cherry on top was he even added a small tablet which would cost my family a huge loan that we were able to completely repay the last month and that was loperamide. Within few hours i developed Invasive C-diff and started heaving blood stools. Again a trip to hospital but this time i was referred to the hematology clinic by the rheums. Had a platelet count of 2 and 16 hb to the docs surprise and was treated with a course of ivig for 5 days with vancomycin for c diff which our insurance provider didnt cover. Was discharged 5 days later with 343K platelets and the decision of stopping steroids. I was told to wait and watch and taper the steroids as per their protocol and reach them once platelet reaches below 100k. So the next days after stopping the steroids i had dropped to 70K and visited the doc next day and was started on MMF 1g per day

july 2023 - 1g no reponse 20K platelets
august 2023- 2g started
sep 2023 - 2g had a very bad flu my platelet wen to 90K but sadly dropped to 26K within two weeks
oct - 46-50K 
november - 70k
dec - 90-100k
jan - 120k
feb -120k
march till my last test in august my platelets had been around ( 145 to 196 K) and was tapered from 2g to 1.5g in feb and 1,5g to 1g in july
In august after one month of being on 1g I had a count of 144K
but sadly in the last week of august i had a cold and since than i have been seeing multiple petechiae on my arms and thigh. I thought it will get better in a few days and it did but again i had been seeing some red dots on my arms and i went for a cbc today and had a count of 16K . I dont know what to do. My dad will visit the doc tomorrow let us see what happens. I have not seen my docs since last 11 months as they advised my parents of not bringing to the hospital until i have any problem due to the risk of infections PS i am a young adult (19) M :). I had been writing this since the last hour and feel better now. I have had no one to tell my story so i wrote everything that came in my mind so sorry for wasting your time :)
Fingers crossed hope my counts go up again and i since the last year i had searched and only found a few studies on mmf in itp and not found much about it on the forum. Is anyone being treated with MMF for their ITP solely?

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2 months 4 weeks ago #73665 by MelA
Replied by MelA on topic MMF (Mycophenolate Mofetil) -Anyone
Aaklon you have not wasted anyone's time! Your story is unreal, you have been through so much for a 19 year old, bless you!
I believe MMF is also called CellCept but I'm not sure. If so, yes there have been ITPers here who have been treated with CellCept. I cannot help you though as when I was diagnosed the only treatments available were splenectomy or prednisone - I took prednisone, later when a tetanus booster dropped my count I had a WinRho IV.

Hoping that mrsb will see your message, she is an ITPer and also a retired renal nurse. Please keep us posted on how you are doing, I too hope your platelet count will stay at a decent level. Take care!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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2 months 4 weeks ago #73666 by Aaklon
Replied by Aaklon on topic MMF (Mycophenolate Mofetil) -Anyone
Thanks for your wishes.
Yeah it is cellcept. And yesterday the doc again me put me on 1.5g for 2 months. According to him It must be due to cold only. I do have a gut feeling that my count will go up again but yesterday i had a very strange experience. I felt like throwing up and had a tingling sensation in my abdomen like the one that happens when we get way too excited but actually it felt not good. I also had a feeling that my heart was beating faster. It alleviated after i took deep breaths for few minutes and then slept. Hoping it was just something random and wont happen again.

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2 months 3 weeks ago #73667 by MelA
Replied by MelA on topic MMF (Mycophenolate Mofetil) -Anyone
Aaklon I know nothing about Cellcept at all as I've been lucky to just have had to use prednisone & WinRho for treatment.
Would what you felt yesterday be side effects from Cellcept?

This is my very favorite site to look up drugs [supplements too], maybe it can help you - sometimes if looking for the brand name it will give you the generic name to click on to read about the drug. medlineplus.gov/druginformation.html

I'm still hoping mrsb sees your messages - she is very knowledgeable and doesn't mess around.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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2 months 3 weeks ago #73668 by Margaret
Replied by Margaret on topic MMF (Mycophenolate Mofetil) -Anyone
So sorry to read what you've been through! I hope MMF will help you.
I took MMF for about a year, after "kickstarting" my platelets with prednisolone from a low of 12k. I started on 2000 mg MMF a day, and I did have some side effects, upset stomach and some nausea, but not the tingling you described. This was only in the early stages - my body seemed to get used to it and after 6 weeks (ish) I had no problems with it. But - nb - my haemotologist said I was lucky, many patients have much more severe effects. I was told it takes 2 months to take effect. I took that high dose for I think nearly 6 months, and then gradually reduced it. My count has stabilized (for now) at around 70k and I haven't taken any treatment for about 4 months.
If the side effects are manageable it's worth perservering with the treatment. But it seems everyone's experience is different and there are other options if MMF doesn't suit you

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2 months 3 weeks ago - 2 months 3 weeks ago #73669 by Aaklon
Replied by Aaklon on topic MMF (Mycophenolate Mofetil) -Anyone
Yeah I also experienced some stomach troubles initially when the MMF was started but just like you my body got adjusted to it in a month. I have been on mmf since last year and my docs were also going to taper it and end it by this year's end. But unfortunately I had this cold and crash and now again one step up for the next two months.
I am quite surprised to see that the medications you received are similar to what i received ( except for the fact i received an ivig course due to an invasive C-diff Infection).
I wanted to ask what was the tapering regime your doc followed? And did you have anything along with mmf like some dietary changes and did you take mmf empty stomach or with food? My doc says you can take it either way , it does not affect its absorption a lot.
And what I think I experienced were not some side effects of MMF rather something like a panic attack. I havent experienced anything like that since.
BTW this is my treatment regime
1g - 2 weeks ( no response)
2g- 6 months ( count b/w 100-120K)
1.5g - 5 months ( count b/w 150 -200k)
1g - 2 months till now but crashed due to cold otherwise the plan was 4 months 1g and then 2 months 500g and then stop it :)

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2 months 3 weeks ago #73670 by Margaret
Replied by Margaret on topic MMF (Mycophenolate Mofetil) -Anyone
Mine was 2g for about 6 months (together with prednisolone for the first 2 months, to allow time for the mycophenolate to kick in; then MMF only)
1.5g for 3 months
1g for 3 months
0.5g for 2 months, then discontinued completely
The count was around 120K throughout the tapering period, until I started taking 0.5g when it dropped to 75K. So I was very hesitant to discontinue and expected a dramatic drop, but in fact there was no change from 0.5 to zero. I've taken no treatment since then and it is still around 75k.
My doctor and pharmacist said with or without food, although added that taking it with food might reduce side effects, if I experienced stomach pain or unsettledness. So I took it right after food while I was on the highest dose, but as it was tapered off it didn't seem to matter when or how I took it.

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2 months 3 weeks ago #73671 by Aaklon
Replied by Aaklon on topic MMF (Mycophenolate Mofetil) -Anyone
Thanks a lot guys.
You guys have given me hope. Will update you guys with my latest count.
Once again thanks a lot 😄

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1 month 1 week ago #73699 by Margaret
Replied by Margaret on topic MMF (Mycophenolate Mofetil) -Anyone
After a year(ish) on Mycophenolate my haematologist weaned me off it earlier this year. Apparently the risks of long-term use were too great. For about 4 months of no treatment I coasted along at counts around 70. So I was to cut blood tests down to every 2 months. But at the two-month point my count was down to 34, and two weeks later 22. Today I started Rituximab, weekly treatment for four weeks, and weekly blood test. No reaction or side effects so far 🤞

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1 month 1 week ago #73700 by Aaklon
Replied by Aaklon on topic MMF (Mycophenolate Mofetil) -Anyone
I feel sorry for your rollercoaster Margaret. And I wish you the best and hope that rituximab keeps you in lifetime remission. Any new updates about your infusion and infusion related to side effects. And why did your consultant not consider the other possibilities like the TPO's?

Well I too have been atlast crossed the 20K Mark after 2 months. Today had a CBC and it showed 45K platelets even though I had a farely high lymphocyte counts. Tomorrow meeting my doc let's see what he has to say. I see the same trend as last year when I was started on MMF. 2 months steady counts at 20K and then two months 45-70K and after that counts above 100K just last year the dosage was 2g per day and this year 1.5g I hope it repeats the same.

And Again I wish you all the best for your treatment. Let's keep fighting ^⁠_⁠^
The following user(s) said Thank You: Margaret

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1 week 5 days ago #73732 by Margaret
Replied by Margaret on topic MMF (Mycophenolate Mofetil) -Anyone
Thanks Aaklon. I didn't get the boost I hoped for from Rituximab. So I'm now back on Mycophenolate, which I didn't really want to discontinue in July. But it will probably take two months to kick in again.
There were several possibilities considered by the haemotologist but ultimately returning to the one which worked for me seems better than experimenting with others.
I hope your count is going well

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1 week 4 days ago #73733 by Aaklon
Replied by Aaklon on topic MMF (Mycophenolate Mofetil) -Anyone
ITP is totally unpredictable. I felt very bad to hear that rituximab didn't help with your ITP. And hope MMF kicks in faster. Mine MMF has again started working I guess.I had a cold again 3 weeks ago and at that time my count was 46. I got a test last week and it showed 73. It's following the same trajectory it did like last year. I asked my doc about long term exposure to MMF and what effects it can have. He said it's a very safe medicine unless you have side effects from it. My only problem with mmf currently is increased risk of skin cancer as mentioned on the box. I'll ask my doc the next time I visit him regarding this.
Hoping you get a response soon.. :)

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