Hi all, I was diagnosed with itp in July last year and wrote a couple of posts at the time. Sorry haven't been in touch for sometime; it was greatly reassuring to talk to other people about their experiences at the time and people were very kind.
It's fair to say it's been a bit of a roller coaster ride. Been on the steroids, immunoglobulins but was resistant to these treatments. Was then put on romiplostim; count bounced around everywhere and I got flu-like symptoms which persisted for a number of months. I was then placed on eltrombopag in September 15. Counts were reaching dizzy heights of 30 which was good for me. Unfortunately, after Christmas stopped responding to this. With a count of 2, they started me on rituximab and I have now had the last of the standard 4 treatments yesterday. Side effects have been awful: chills, fevers, nausea. Count only at 3 yesterday. I'm trying to stay positive but it is so hard. I know that this latest treatment can take a number of weeks to take effect but in the back of my mind is obviously what next if this doesn't work?
I am often covered in bruises and get prolonged very heavy periods. Last week blood all over my pillow from bleeding gums. Looked like I had been chewing on raw meat in the night!
Am just very worried. Was off work for three months last year. Managed to get back and have been in until this latest treatment. I really don't want to be off long-term again but often feel quite unwell. Sorry, hate saying this as know people have it a lot worse and receiving treatment in a chemo ward with lots of very poorly people does put it in perspective. Having said which I don't have much quality of life. Sleep when not at work and go to bed at same time as ten year old daughter.
My dad passed away suddenly a few weeks before Christmas which has been devastating and wonder if the stress of this may have lowered my count?
Sorry if this post is a little long winded but would appreciate any feedback.
Thanks
Written by
Caro40
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Sorry that you are having such hard times with treatments. Have you tried MMF? We had stories on this forum when it stabilised counts very well. I do hope rituximab works though, it worked for me within about 4 weeks!
Sorry you are having such a rough time. You are not alone.
Did you try Azathioprine or MMF (Mycophenolate Mofetil) these are organ rejection drugs that do a good job of dampening down the immune system and can be relatively side effect free.
Rituximab - as you say give it time to work - can induce a long term remission in some.
People with ITP never seem to be the same in that some are treated relatively easily with just steroid doses others like you and me are refactory to nearly all treatments. Some ITP sufferers are known by the unfortunate term "bleeders" and some do not bleed even when they have a count in single figures.
IVIG - have you tried a different brand? Did you have pre-meds (Hydrocortisone, Anti-Histamine and Paracetamol)?
In the UK the two most commonly used brands are Privigen or Flebogamma. I seem to tolerate Flebogamma better than Privigen although Privigen is the brand of choice for new patients. The speed at which you receive the infusion can really be important. Too fast and the side effects can be spectacular. Very slow and the effects seem to be minimised. Even different batches of IVIG can have different or no side effects. IVIG is normally the most effective in bringing up your counts to take you out of the bleeding zone although only usually for about two weeks.
Take control of your treatment - Google all about ITP and the various treatments and their effectiveness and armed with this knowledge discuss the way forward with your Haematologist.
Hi, I know I need to give rituximab time but just feel life is on hold; so frustrating. I haven't tried the other treatments you mention but good to know they are available.
I have been given pre Meds.
In terms of the IVIG it was very early on in my treatment and count just stayed at 7. I didn't know there were different brands though so will mention this to my consultant.
You're right about taking control. Sometimes feel as if I haven't asked enough questions and am maybe still in denial!
I am sorry to hear that so many of the treatments have not worked for you. I know the feeling of frustration you are going through only too well and for a while I wondered if I would ever get my life back as I suffered through the bleeding symptoms and side effects of the various treatments that did not work. I was fortunate that Romiplostim (NPlate) eventually worked for me whereas Rituximab did not although I was told that it can take upwards to 12 weeks for it to take effect so do not lose hope yet.
It really sad/ hurt after reading your story. Though I am also new in ITP but I would strongly suggest you that you should give a chance to natural remedies/alternate treatments. Since you know ITP stands for Ideopathic ( no reason/ no cause hence no cureness). So please try all if not then at least 3/4 alternate treatments from this link pdsa.org/treatments/complem...
I personally suggest you try to vitamins and Minerals treatment as well as food as a cure.
My all good wishes are with you n wd all other ITPs affecties. May Allah cured ITP...Aameen!
Hi there sorry that you are so ill with it. My platlet count sits at about 7. I have tried all the same treatment as you,with all the side effects. I find that stereods work the best with the least side effect,for short periods. I am always covered in bruises, but do not take anything on a regular basis. I would say try to take iron tablets I take one tablet ever other night seems to help with the tiredness, and go to the doctor regarding periods,you can take similar to a mini pile witch will stop you having heavy periods because that will make you anaemic which will make you tired.
I suggest, try Elthrombopag (Tablet with name Revolade available in India). Quite costly but take 50 mg everyday for a week and once u stop check counts after 3 days and see if its raised. For now its working for me. I will take one week before my periods date, so during periods flow will be in control. I dont see any side effects in this yet.
Blood covered pillow huh? I've had that horror. It was my nose though and I was hospitalized over it. I did my first round of rituxamab in Janurary with my platelets at 4. They two days ago were 73. I really hope the rituxamab works for you. It's been the easiest to handle. I have also wondered if stress could affect my platelets. I was pregnant with my baby when my Itp Showed up. That was October of 2014. I'm only 20. It has been a battle, but I'm lucky enough that my body is young and willing to fight. I also lost someone while doing the damn steroids. It made me insanely emotional and my counts dropped. I really hope you find something that works for you.
Hi Lanna, I feel for you. 20 is very young to be going through this and being a young mother too. I am 41.
My last round of rituximab was two weeks ago and my count is still only 2. They have said not to lose hope as it can take a number of week's to take effect. If I'm reading your message right, it has taken from January to June to see an increase in your Count? Or have I got this wrong? It may be that you're taking other medication too. Can you let me knowx
I started Rituxan three weeks ago while also taking 40 mg Predisone and my platelet levels have increased and decreased from 43-96, but as another rituxan treatment and reduced Predisone to 20 , platelet level reduced to 42. Getting ready this week for my fourth rituxan treatment. So far no bad effects, but wonder if my restless sleep at night is part of the deal.
After Rituxan is NPLATE and it works nothing else did. Rituxan is good for 60 percent so hope you are one of them. I wasnt. But NPlate has worked keeping me up this time for 5 weeks. This is terrible disease. After shot I am fatigued for 3 days then I feel great. Keep hoping it will go away. Talked to lots people who had spleen taken out none of them had any luck it actually made it worse cause then they had to be on antibiotics rest rest of there lives
I am so sorry for what you are going through. My platelets dropped to 17 after a difficult breast biopsy when I gushed blood for 4 hours. After that I read up on the condition and was very good. No wine or alcohol and harder yet, no coffee!! I stayed away from platelet destroying foods (ginger, garlic, etc.) and ate platelet building foods (amla, papaya extract, wheat grass, etc.). My platelets went up to 63. I notice when I drink coffee or wine my body gets huge bruises. Check this website for a list of prescribed foods. Good luck to you and all of us. 🌱🌺🍀
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