ITP with counts less than 10, is revolade is dangerous?

[AWSAR]

Hello everyone

Im 28 years old n diagnose ITP after dental surgery.. When i had my first cbc after dental surgery count was 2. after 3 months of prednisolne and immunosuppressive treatment counts are same. Now i tapper off steroid .

Luckily i dont have any kind of bleeding. just my legs get pain . very strange kind of pain. Like i have to press tight my legs to make it vanish.

My dr suggest my to remove spleen but i'm not agree for it. Had my bone marrow. result will be come next week,.

I just want to know, cant we live with low counts. if have no active bleeding?

n what is revolade medicine is? It is hell expensive and Dr are not sure about side effects

any one who has used this medicine?

Thanks

[LisaWeb83]

Hi, I am 33 and was diagnosed with ITP after bruises appeared on my legs and bleeding from my mouth and ears, my count was 7, steroids brought them up slowly over the next 3months to 53, I am now in the process of tapering off the steroids. I have been taking revolade for 4weeks and although I don't know much about any short/long term side effects, I can say I felt better very quickly, bruises stopped appearing, and my count has been between 163/174 since taking Revolade.

[AWSAR in reply to LisaWeb83]

Question is that we live up on these medicine forever? . is there any permanent solution ? what if you stop revolade n counts again comes down?

[LisaWeb83 in reply to AWSAR]

I don't think there is a permanent solution unfortunately , I've been told people can lead healthy lifestyles on low counts as long as there is no active bleeding. The doctor says he will keep me on revolade for the near future and eventually I will come off them, I have no idea what the next steps would be if my levels fall again. I'm new to all this, for me personally steroids only helped slightly and the side effects have been awful, revolade so far hasn't shown any obvious side effects and I feel much better( although I've read somewhere long term it's bad for the liver?). I hope you find the right treatment than suits you.

[AWSAR in reply to LisaWeb83]

Only to raise platelets is not a big deal. what matter is keep their level consistent . which is unfortunately cant be happen with steroids.. yes my liver is really disturb . Lik my ALT Is 95 ( normal value is 45) . also my kidney also affects.

Revolade is instant platelets generator and has side affects too

i just pray all of you get rid of all these medicine and live life happily.

God bless you!

[AWSAR in reply to AWSAR]

Also its not easy to stop these steroid . Lik in my case it takes a month to . Today is my last day . From tomorrow i aint take any pill

so lets see whats happens

cheers!

[takari in reply to LisaWeb83]

I have been on Promacta which is another name for Revolade. I started in February of this year. I was at 63 at the time but I had been on Nplate and had good success and needed to just drop some before starting Promacta. I started at 25 mg a day and over time went up to 239. If you are over 200 you are supposed to drop your dose so I went down to 12.5 mg just 5 weeks ago. I went from 239 down to 104 in the first month but then a week later I was at 141 which was just last week. I have had some bad side effects but they didn't last long so if you can just put up with it for a while it will go away. I do still get heartburn but if I take Prilosec it is under control and not a problem. I feel great taking this and my numbers are good and starting to go up on the lowest dose. I would try it, absolutely before getting my spleen out (wouldn't work for me as an indium test showed). It doesn't work for everyone but it works great for me and like everything with ITP, we must pick our poison or go without and see what happens.

[AWSAR in reply to takari]

Good luck takari!

but in my case counts are remain <10,

i wont prefer to remove spleen. as i get my spleen . ultra sound . it is in perfect condition,

[debra091000 in reply to takari]

Where did you have the indium test done? Did it show that your liver was destroying your platelets?

[AWSAR in reply to debra091000]

No i just have liver test . LFT , in which my atl n ast values are high. thats means steroids are affecting my liver

[takari in reply to debra091000]

I had mine done at Crouse Hospital in Syracuse, NY. They will not do them but they did it for my hemo because they have a strong working relationship. It showed I am mixed sequestration so both my spleen and liver destroy platelets. A splenectomy will not work for me because my liver will just take over the job. Its all good because promacta works well for me.

[AWSAR in reply to takari]

what you have done for your liver? like what treatment is there if liver destroying platelets , n how come you know this . that liver is destroying ur platelets

[scaryteacher in reply to AWSAR]

Google Indium test, which shows where the platelets are being destroyed. If it's in your liver, then a splenectomy is useless.

[AWSAR in reply to scaryteacher]

I think this is some latest tech . Unfortunately not in my country i have search this

[scaryteacher in reply to AWSAR]

I've been aware of the Indium tests for a couple of years, if not longer, so it's not 'latest tech' by any means.

[ITPAffecty in reply to LisaWeb83]

In India it's very costly medicine. Which country you live in?

[AWSAR in reply to ITPAffecty]

Im from pakistan . and its costly here too.

[Pollyangel]

Hi

I've been taking Revolade since January this year. I'm on Revolade because like yourself I don't respond to steriod treatment.

My count at the start of the year was zero. My count has been as high as 137 but as of yesterday was at 33.

I've not had any serious side effects using Revolade. What does effect me is the exessive sweating and occasional blurry vision. I get my count checked every 2 to 4 weeks so that the dosage can be adjusted if my count increases over 100.

I'm also very fortunate. I live in the UK and my Revolade cost is free to me because of our NHS.

Good luck and hopefully it will give you positive results.

Pauline x

[AWSAR in reply to Pollyangel]

Lucky you really , here in my country (Pakistan) , It cost me 4 pounds per pill. i can afford this but like you said your count again comes down to 33, so there is no benefit of using this medicine. These medicine makes ur mind sick,. n u become very sensitive about ur self. Life with these tension is not easy . especially when u also have to work with that much stress.

God bless you all.

our medical science is so much advance but still no permanent cure for ITP

[eciardullo]

Please be cautious..l had to abruptly stop revolade it brought on blood clots in my lungs, liver and legs. I think what worked for me was steroids, rituxamab and l did end up removing my spleen. I happily am off all meds and count has been over 200 for approx. A year. Good luck..my prayers are with you...

[AWSAR in reply to eciardullo]

Yes. my first Dr suggest me to remove spleen instead of taking expensive revolade. but removing spleen is also risk in long term. he( Dr) also told me that it might clot ur blood any where in ur body . thats y i dint take it .neither i agree to remove my spleen,.

Thanks to god almighty that removin spleen work in ur case.

God bless u

[Xs2abhishek]

If money is not a problem revolade is good as per reviews . Doctort suggested me revelode too but I told him I will try steriods first for a few weeks and then if it does not work then I will move to revolade....as both don't confirm eradication of ITP. Also I suggest you get checked for h pyloria if positive in some cases it causes low platelate count. Pdsa.org has. Great information on this

[AWSAR in reply to Xs2abhishek]

I have tried steroid along with neoral n imuran ( immnusuppersive drugs) .for about 3 months. but it does not work in my case. i dont know about h pyloria . i will check it soon.

P.S nothing comes before health . i can afford money but like i'm worried about side effects and also what after all this counts are remain at same level.

Steroids already change me alots. my face is swell .. and m too much paranoid just by watching red colour . really . although i have no active bleeding. but after using steroids my skin is so soft n and easily get bruises by rubbing it turns red.

i just want to live normal life.

death is certainly . so why live with that fear.

what if we have no active bleeding at all. can we live with that much count ( <10)

[Xs2abhishek in reply to AWSAR]

I understand the mental agony going through as I am 30 n it's been just 25 days that I got diagnosed with ITP. but as the diagnosis and treatment is not standard i have put all my energy in finding a relationship between by trigger of ITP n I am now down to 2 possibilities one drug induced (cefiximi) which my doc. Prescribed during Viral fever and the h pyloria. N ya living with low count is very much possible

[AWSAR in reply to Xs2abhishek]

I had nothing . like fever to bruises. I just had dental surgery . n during surgery he suggest me to have CBC. before that i was living life . healthy life. but after using medicine and ITP treatment . i'm very down. believe me .

if u had some kind of fever or etc. ur medicine are change as of mine.

n hopefully ur will get well soon.

just dont go for steroids. like ask ur doctor before he prescribed you. that how long u have to take this . and what is the procedure ..

[AWSAR in reply to Xs2abhishek]

i had ana, and anti body test. both are negative. also LDH , its double the normal range. and bone marrow too. ( waiting for result )

[scaryteacher]

I've had ITP for 21 years and my count is down to about 38 all the time now. I don't take any meds, as I don't bleed unless cut or cleaning my teeth, and although I do bruise, it isn't a massive problem.

Another poster on here, Sailor has counts of about 10, and leads a normal life without meds. It is doable. Just be aware that alcohol lowers platelets, and that contact sports, like rugby, are not advisable.

[AWSAR in reply to scaryteacher]

Thanks for replying,

I'm just waiting for my bone marrow result as soon i get it . n hopefully it will be negative then i will quit all medicine. I don't drink. just smoke weed

[scaryteacher in reply to AWSAR]

Does the cannabis affect your platelet count?

[AWSAR in reply to scaryteacher]

I dont know. I'm smoking from 8 years. technically cannabis clot ur blood. n then it is helpful for ITP patient

But im not sure about this.

[scaryteacher in reply to AWSAR]

Have a google!

[AWSAR in reply to scaryteacher]

Weed lower ur blood pressure and increase heart pulse.that what i know.

googles have so much confusion . everyone has its own opinion .

[4ladylove in reply to scaryteacher]

Glad this question was ask because my daughter has been looking into trying this because nothing else has held up for her.please share if these those work for u so many people searching for a cure for this disease.

[tip-3 in reply to scaryteacher]

Thanks scaryteacher for your post. I have read sailor's posts as well and am hoping I can come off this promacta for good ..... and agree with both of you 100% .....

[hassell83]

I have been on Revolade for a few years now and it has been okay with me, no side effects. When my count does drop low I have to take Dexamethasone and it will get rid of myblisters and bruises in a few days. I have had my spleen out and didn`t make any difference, so I wouldn`t do it. All the best to you.

[ITPAffecty]

I am off my medicine since 4 yrs. I take revolade 3 or 4 tablets in one or 2 months. Its only for some peace during periods. Like you even I have tried different kinds of treatment and nothing worked. Even I wasnt able to bare the side effects. But still you can survive without medicine if you don't have active bleeding. I cannot afford Revolade everyday as for 7 tablets it costs 13k in India and not sure about side effects. I have just given up everything.!!

[AWSAR in reply to ITPAffecty]

here one pill cost 3200, Company rate for a pack of 27 pills. total 86400 for a pack. and if u buy from medical store. then single pill cost 4200. In EU and USA its under medical insurance

[ITPAffecty in reply to AWSAR]

Yeah almost same.. Without Insurance, it's like we need to earn only for Revolade, nothing else..

[AWSAR in reply to ITPAffecty]

Lolx. not really. we need to get rid of all medicine

[S38abcd]

May I know how are things with you now. If u r still here.

These posts r very old.

Let us know what has worked for you and what hasn't.