Need your guidance after visit drs. T... - ITP Support Assoc...

ITP Support Association

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Need your guidance after visit drs. Thank you all in advance.

M_Umar
M_Umar

Dear all, yesterday i visited two different hematologists. One dr. Advised me to inject Solumedrol 100 mg (6 injections, one in one month)

While 2nd one was my old hematologist, she advised me to take 10 tablets of Prednisone(50mg) for 5 days + 1cap. Tranxamin(to prevent from bleeding) and 1tab tenurmin (50mg, for blood pressure).

Last night I have only 1 k with full bruising and little bleeding from mouth and a bit from nose

Problem is injection is out ov stock here in Lahore so I decided to take 50 mg prednisone, now after this post I m going to take this high dose but I am very worried if prednisone fail to work then what will I do?

Weekend start here and no dr. Will be available during weekend, if I have any embergency what should I do.

Kindly do share your experiences also how much time prednisone take to react on the body, means till when I can wait whether prednisone is affectful or not?

I am in great tension, your experiences will help me alot, any alternate of solumedrol injection?

32 Replies
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When I was on Prednisone, it acted very quickly. My numbers shot up in just a few days. But Prednisone can have some strong side-effects; keep talking to your doctors about alternatives. But once you start the Prednisone, you'll have to taper off it. Stopping suddenly can have dangerous results.

Good luck,

Ruth

NickyD
NickyD in reply to SoporRose

I was on a high dose of prednisolone over three years ago and still suffer from the side effects. However, if you need to take it, sometimes there is no offered option.

SoporRose
SoporRose in reply to NickyD

Nicky,

That's how it is here. Prednisone is cheap, so the insurance companies require it be tried first, even though the medical folks all admit it's a horrible drug (though I gather some people get euphoric while on it. Apparently I was not one of them. I don't remember much from that time). I was on it in 2011 and, like you, am still suffering side effects. Have you done any research into ways to counteract them?

Ruth

NickyD
NickyD in reply to SoporRose

Hi Ruth. It caused memory loss for me. My Consultant says it will get better over time. If i dont write everything down i forget it. I am fine for a couple of hours but within a couple of days it has gone. I find it a struggle on a day to day basis every day. Nicky

SoporRose
SoporRose in reply to NickyD

Nicky,

Memory loss for me too, especially vocabulary — which is a significant problem for an editor. Like you, I have to write everything down. The trick is even remembering that I wrote it down. I have persistent fatigue too. "Better over time": I've also heard that. But it's been almost four years now. I guess it's past time for me to start doing some research.

Ruth

NickyD
NickyD in reply to SoporRose

Hi Ruth I forget so much.... I cant remember so many things. I run my own business and i forget what contracts i have with which firms. I dont know what insurances i have. I dont know if there is a folder with the information. I dont know who i have spoken to and what i have agreed to do. All of this from ITP!!!!

M_Umar
M_Umar in reply to SoporRose

Here in Lahore no medicale insurance, we need to pay from our pocket. Kindly do tell/ guide me (if possible) other than prednisone what are the treatment which having less side effects and sustain rate is high, we are expecting our first baby in a week or two, InShaAllah, but due to this disease we specially I am very very upset and most often crying by thinking that how long I may survive with Itp and what next if prednisone fail to work. Another dr. Suggest me to take 60 mg prednisone+ 50 mg azathioprine. Can anyone guide me azathioprine is good to take or not? Cuz I red it may cause cancer as well as well as decrease your immunity. Thank you for your guidance, you people don't know how much relief I got when someone share his/ her experiences with me cuz here in Lahore I don't know anyone who is living with itp...Thank you all

bloggerkhushi
bloggerkhushi in reply to M_Umar

60 mg predisone with immunosuppressant that is azathioprine sound reasonable.. 10 tabs of

50 mg predisone in a day is too much. According to weight of your body doc decide the dose, my wt is @70 so doc either start with 60 mg and it work pretty well but yes side effects r killing... Can't help it much

M_Umar
M_Umar in reply to bloggerkhushi

Thank you dear Khushi for the reply, I will update you tomorrow.

I am on a reducing dose of prednisolone (I started at 50mg a day now on 9mg) and the only side effects I am aware of are a slight increase in weight, redness in my face together with a fuller face and acne! I am also on fortnightly romiplostin injections and my count would be 140 one week 70 the next and the prednisolone appears to be a key factor in maintaining these levels. Unfortunately this week I dropped from 144 to 28 thinking it may be due to the cold weather? Who knows the other factor may be I had an ultrasound carried out on my liver this week that perhaps disturbed things has anyone any comments or thoughts what may have caused my platelets to plummet? In answer to your question re prednisolone it can be a "good guy" if carefully prescribed.

The second time I was treated for ITP, the doctor gave me Rituxan/ Rituximab. The side effects were fewer — I didn't go crazy with it — but it exacerbated my fatigue and the weariness has gotten worse, not better. On the other hand, my platelet levels have been relatively steady at around 180k for over two years now. Rituximab can be horrendously expensive here in the U.S. I have no idea what it might cost in Lahore, but you could talk with your doctors about it.

Congratulations on your baby! I know this is scary, especially with a baby coming, and of course you are going to worry. Have faith in yourself and your own judgement. I am sure you will be around to watch your child grow up strong and healthy, though you may have to take medications for your ITP. Has your doctor said whether giving birth might ease your ITP? Please keep in touch and let us know what your doctors have to say and how you are doing.

Ruth

Morgan
Morgan in reply to SoporRose

It's a he!

SoporRose
SoporRose in reply to Morgan

Thanks for the heads-up, Morgan. Picture me blushing.

Ruth

Anna77M
Anna77M in reply to SoporRose

SoporRose

How soon after getting Rituxin did your platelets go up?

SoporRose
SoporRose in reply to Anna77M

Anna,

They were up by the time I had a blood test the next week. I know Rituxan doesn't work for everyone and that I've been relatively lucky so far, but it seems worth trying if it's a possibility.

Ruth

Anna77M
Anna77M in reply to SoporRose

I had my last round on December 30 but they are still dropping and I am still having to have IVIG infusions every week. I actually had to hold back my 3rd treAtment because they had to give me IVIG my platelets dropped to 8. I had IVIG Jan 6th at 15 which did nothing (that's never happened) so I had another IVIG Jan 13. I go Monday for more blood work. I just don't think the Rituxin worked. I know sometimes it takes awhile to "kick in" but I have seen ZERO from it.

Anna

SoporRose
SoporRose in reply to Anna77M

Anna,

I am so sorry — truly, genuinely sorry — that you're having such an horrific time. It does sound as if you're one of the people for whom Ritiximab isn't a go. I also was told it might take a while to work, so perhaps you will still see results. But meanwhile, I hope your doctors are looking for other options. Please please let me know how you progress.

Ruth

Anna77M
Anna77M in reply to SoporRose

Thank you so much for your kind words. ☺️ I am glad it worked for you and all is well! I will let you know what happens in the next few weeks.

Anna

Anna77M
Anna77M in reply to Anna77M

Hi there Ruth. I went today for my blood work and they were down to 20. 👎🏼.

Anna

M_Umar
M_Umar in reply to Anna77M

Hi Anna, really sorry to hear about your blood count. Its really hurt when even meds. fail to sustain our platelets. My all gud wishes are with you.

I have my blood work on coming Friday, need gud wishes. At the moment taking prednisolne(50-60mg) with upper face red and my blood pressure (BP) remains 90-110/ 140 with sleepless nights. Today need to visit general physician for BP.

Can anyone guide me, can I eat Barley or Barley water?

Anna77M
Anna77M in reply to M_Umar

I could never sleep on prednisone. So that's most likely why you are up all night. So sorry you are going through this and I hope you get some good results soon! I haven't heard anything about barley water.

SoporRose
SoporRose in reply to M_Umar

Many good wishes for your appointment Friday! The prednisone does tend to wreak havoc with sleep. And soon you'll have a baby doing the same thing! The good news is that you'll probably be off the prednisone before too long and eventually the baby will grow up and either sleep through the night or read books with a flashlight under the covers. So you will get to sleep again someday.

M_Umar
M_Umar in reply to SoporRose

Thank you for your nice wishes, I will update about my health on this Saturday, IA, I will try to convert prednisolne to dapsone with the approval of my hematologist. I don't know its a wise decision or not but I read somewhere that dapsone has less side effects as compare to prednisolne. Any comments on dapsone please...

SoporRose
SoporRose in reply to Anna77M

Anna,

That's scary. How howlingly, infuriatingly frustrating and disappointing. What will you get to try next?

Ruth

M_Umar
M_Umar in reply to SoporRose

Thank you dear Ruth for your advice, definitely I will talk to my hematologist about Rituxan in next appointment. I am feeling a bit okay by taking 60 mg steroids but Will update here about my health in a day or two.

I am going to become the father of a baby in near future, need lot of your good wishes.

Thank you again for your advice.

SoporRose
SoporRose in reply to M_Umar

You definitely have my best wishes. Sorry I thought you were the one giving birth — I'm terribly embarrassed. Let us know how the prednisone works for you. As I recall, it did do the job of getting my platelets up quickly.

Ruth

I would take the prednisone every day. Try to Rest. Try not to be stressed. Stress is harmful for people with ITP. You will be able to tell if the prednisone is working as your symptoms will subside. The bleeding should stop. If I was in your position and my symptoms became worse during the weekend and because of the pregnancy, I would go to the ER at hospital. They will draw your blood and will let you know what your platelet count is at that time. All drugs have side-effects! I have taken prednisone for years. Don't be afraid of it. Some people do have emotional side-effects from prednisone and others do not. Some people gain weight and retain fluid but others do not. Your doctor will have you slowly reduce your dosage after a few days and the less you have to take the fewer your side effects you will have. You can live with it! Good luck and keep us posted.

M_Umar
M_Umar in reply to 22-patience

Thank you dear, I am feeling a bit okay. Hopefully prednisone is working but not sure. Will update about my health here in a day or two.

Can you please suggest/advice me whether I need to take azathioprine with steroids as my new dr. Advised me start 50 mg azathioprine with 60 mg prednisone?

2nd I am going to become a father of a child in near future, need your good wishes.

Hi.

My daughter is taking azathioprine at the minute. She was on prednisolone for 3 months and it brought her count up to just over 40. She has been on the azathioprine since september of last year and her count on tues last was 76. Azathioprine is an immunosuppressant and it continues with the work that the prednisolone started without the nasty side effects (weight gain, increase appetite) that you get from the steroids. Azathioprine as i said is an immunosuppressant and while taking this medication there is a chance you can get bad infections as the immune system is lower. So far my daughter has missed this and hopefully will stay this way. I hope it works as well for you as it has for my daughter. Best of luck with the new edition to the family.

M_Umar
M_Umar in reply to e_kennedy

Thank you kennedy for your reply and guidance, I will update the latest result tomorrow.

Lots of good suggestions here. I took high dose prenisone 100 mg per day as a first attempt to treat the ITP. We even tried 120 mg for a few days. Each person is different. This did not solve the ITP problem for me but it did quickly and temperarily raise the platelet count. There are many other treatments and it is a mater of finding the one that works for you. The low counts alone should not cause distress. Just take it easy and nothing wrough that could cause bleeding or bruising. Only go to emergency if you are bleeding as they dont have solutions other than transfusions and that has a short positive effect. I have lived with ITP now for 25 years and it is very possible to live a full life.

M_Umar
M_Umar in reply to RobertSp

Thank you so much dear Robert, your reply give me a great hope. Currently I am taking prednisolne, today I had my cbc appointment, will update the result on Saturday. Hoping a bit better result. My question to you is if prednisolne increase my platelets on temporary basis, what would you suggest/ recommend me to stay on prednisolne or should I try to change my med. due to very high side effects of prednisolne. My only wish is my platelets may above 30 with min. Dose of med. Thank you so much.

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