advice

hi im 27 and have had itp for years. my life wasn't effected from this apart from bruising and feeling tired at times. I just get on with it. this year my count was 27 and was given treatment my symptoms was bad I was black and blue and feeling drained i had a infusion (refused steroids due to going on holiday ) this lifted my count to 300 :-) slowly they started to fall and 4 weeks ago they was at 23 my doctor refused me another infusion and told me i had to go on steroids. i have another holiday booked for October so i was really not happy when he made me go on them. i take 75 mg a day and will have been on them nearly four weeks by the time i have my appointment next week. i don't no how much more i can take of these tablets. i feel worse than i ever have my ankles feel like there goin to snap some morning im so tired i keep having headaches, my moods are ridiculous (luckily i have a very supportive bf) i cry a lot ive piled the weight on and im jus not myself. moods swings go from one extreme to the other i can be a total bitch then the next day im a weird version of me (not my personality) being silly and over the top happy. i haven't been told how long i have to be on these tablets for and its really starting to get me down. should i come off them or will things get better as time goes on. anyone who has been through the steroid treatment must have some advice . thanks

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  • Steroids are a bitch!!! I was on 90mg initially- March 2014- - I went hyper rather than depressed. I'm on 15mg now n reducing every 2 weeks- which is a lot easier - but I just made sure everyone I came into contact with knew I was on steroids n wot they did to me re affecting my behaviour. Luckily I also have understanding bf.

    I had 4x Rituximab and my platelets r climbing- slowly- 49 last week. They were 3 in June .

    I think the worse part of ITP is getting ur head round the fact that u av a health condition- I've been through all emotions n feelings - from denial, self pity, anger, forlorn etc but am now at the point of - so wot- if I'm tired sit down- I've developed a sence of arrogance about wot other people think- I don't give a monkeys!!- because ITP is invisible people can't see how u feel so u need to be assertive and ensure they know if it's necessary.

    - I av very few symptoms - until I get below 10- but the steroids cause me the most problems- memory, concentration,anxiety,confusion,lack of tolerance.

    But I'm still doing n following my plans before ITP - still travelling etc I just take loads of steroids with me n if Platelets were to drop I'd take 50mg daily till I get back to uk.

    Work through each stage of finally accepting - it's not easy - but doable - hang in there!!

  • Hi iv been there, done it my friend . Come off the terrible steroids. They dont work. They just make you feel 10 times worse. I know exactly what you mean, hated being on them and thought I was going nuts . Iv been on duloxatine for the past year .seratonin based drug. Did you know that when you dont have platelets you dont have any where for your platelets to bank . Hence the up and down moods of depression. They work. My platelets have been 7 all the way up to 200 in the past 2 years , but at the moment im on romboplastin. I feel great, I dont actually know what my count is this week because im on holidays in Turkey. So I will get them done next week. Iv been on every drug you can get and nothing has worked so far . But I have a great feeling about these. Good luck and get off the horrible steroids .

  • Hi iv been there, done it my friend . Come off the terrible steroids. They dont work. They just make you feel 10 times worse. I know exactly what you mean, hated being on them and thought I was going nuts . Iv been on duloxatine for the past year .seratonin based drug. Did you know that when you dont have platelets you dont have any where for your platelets to bank . Hence the up and down moods of depression. They work. My platelets have been 7 all the way up to 200 in the past 2 years , but at the moment im on romboplastin. I feel great, I dont actually know what my count is this week because im on holidays in Turkey. So I will get them done next week. Iv been on every drug you can get and nothing has worked so far . But I have a great feeling about these. Good luck and get off the horrible steroids .

  • Hi

    Steroids have bad side effects, but actually for a lot of people they do work. I had them for 4 months tapering down to zero, and my itp went away for 6 years.

    Sadly I am now immune to them so I just had ivig for a few months at my last episode till my body put itself back into remission.

    Stick with it, they are nowhere near as toxic as the alternative drugs on offer.

  • You can say no you do not have to take them demand another option. You will need to wean very slowly and you will have effects from the wean as well. I spent 2.5 years on 150mg and more of prednisone and 14 years later still feel the effects. I fyou are not overly symptomatic nor a real bleeder you can live with counts like that quite happily. You know your body best. I dont treat until under 10,000 and even then only if overly symptomatic. Yes they do work for some but I will never ever go back on them again and my heamo knows that. Ater prednisone. dapsone, dexamethasone, ivig and a splenectomy the only thing that has worked for me is rituxin and I have had no ill effects form this and have had it 4 times over the past 10 years each with over 3 years remission each time.There are plenty of other options and whilst yes some may have other issues its what your body and lifestyle can cope with. Be firm it is your body and if you needto get a second opinion//my life change when I started to say no and take charge.

  • Thanks. This is great advice my doctor basically told me I had no choice and with my bf sat in the room with I was not goin to win the argument. I can feel that these are not doing me any good as a person n was a lot happier and feeling a lot healthier wen I was not on treatment. This is only a few weeks in so dread to think if it was to carry on. I have an appointment with my hemotoligist on Wednesday so fingers crossed I can find the bottle to tell him straight lol . Thanks

  • OMG I can't believe they left you on them for over 2 years!!! I was told that you can only have them for 9 months then you have to be treated with alternative methods as they strip the calcium out of your bones. I'm so glad you have responded to something less harmful, Good luck and may your little dishes stay at a healthy level. Dishes is mine and my partners pet name for platelets lol

  • They do indeed do that swheels as well as affect my sugar levels. I am paying now long term with joint issues, skin that never truly recovered weight that still has not shiffted as it settled in odd places and eyesight issues. I am a big build hence the higher doses and I blindly did as I was told n the early days..not any more it's me who calls the shots with my body and what goes into it and its amazing how a Doctor can manage to get hold of more meds when I flat out refuse to take anything else. ;-)

  • Hi, I have been on the dreaded steroids and know all to well about the side effects. I was on them when I was 3 years old and ballooned till my mom asked them to take me off them before I pop lol. Then had another stint on them when I was 25 (I'm 43). I had knee cramps, tried eating fish and healthy foods to try and keep the weight down but I had a massive dose when my count dipped to 4 and nothing could stop the weight gain. But remember, it's mostly fluid, not really actual fat unless you are feeding the fake appetite they give you, so when you ween off them the weight will naturally start to come off. Take calcium supplements while taking them, I was informed that they strip the calcium from your bones (as I mentioned above) I had terrible knee cramps and certain foods made me vomit about 20 mins later. I couldn't sleep as they gave me insomnia too. I was on them for 9 months then they started to try other meds and ween me off as I was told that they could onlyb use them for 9 months at a time. I would go to your consultant and see if you can try a reduced dose to see how you go before you go away. I had a relapse a few years ago due to a virus, I had a 3 week stint starting high and giving a plan of what dose to take each week, reducing the tablets gradually. I didn't suffer half as badly and only really suffered a bloated stomach, which with everything I had had before I could live with that. I went away to the Isle of Wight whilst on them and I had a good time, the only inconvenience was having to take them and take them at meal times. I hope you can get a result before you go away and have a good holiday

    Sheila

  • I got very good at saying sorry when I was on steroids. I put on four and a half stone and it took me two years to lose the weight. My mood swings were awful. I did not sleep for more that two or three hours a night and was manic the rest of the time. My memory has been affected by them. I took them to see if they worked. I was on them for well over two years and in the end they did nothing for me. You are not on your own. We know how awful they are. Hang on in there.

  • Really sorry that you are struggling so much. I have been on them twice and the last time I said that I wanted to get off them and now refuse to take them again. Fingers crossed your doc listens and finds an alternative for you.

  • 75 mg is a lot! I've taken prednisone for years and the highest dosage has been 50. About every four days my hematologist has had me reduce it about 4 mg until I get back down to 5 mg one day and 10 the next. My Hematologist encourages me not to live by my platelet count. My count is usually in the 35 to 40,000 range. I feel fine on 10 or even 15 mg if need be but try to get as low as 2 mg at times. I have my CBC checked every two weeks to stay on top of things. Last Oct my platelets dropped to 13 but my doctor only increased my dosage to 15 for about four days and then I started reducing the dosage until I was back to 5 mg per day. I do retain liquid but try to drink a lot of water and stay away from the breads and pastas. Try to eat a lot of kale ----- which I've discovered helps with platelets. I find certain things seem to lower my platelets like ------ too many alcoholic drinks, too much cardio exercising-------Sounds weird but seems to be true in my case. I also stay away from anything I read about that may lower platelets, I.e., ginger, garlic, too much green tea, etc. there are lists of things not to eat or drink in excess which may lower platelets. Look up PDSA for all kinds of tips on ITP. I, too, have had a spleenectomy which did no good! I try to do everything in moderation-------including snacking and weigh myself every day. No fast food! No deep fried food! Very limited breads, pasta, potatoes, corn, (if ever). A lot of fresh vegetables, kale smoothies, frozen fat-free yogurt, fish, red meat(on occasion) plain Greek yogurt with fresh papaya, bananas, pineapple. Pineapple and celery help rid the body of extra fluid. Watermelon is good, too. I've made my condition a challenge and just try to remember to stay calm, and in control. Extra magnesium, vitamin D, and calcium helps, too. Hope this helps a little.........if not, just delete it and have a great day!

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