ITP Support Association
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When do you start to feel on the up

When do you start to feel on the up

After having ITP for 13 months I am asking when does it start to get any better : ) I am finding my upbeat mood is starting to wear me down every day i tell myself it will get better NO it has not sorry to moan who ever reads my posts but needed to rant : ( it is hard when you have a invisible illness and one that there is not to much knowledge out there to be honest feel better now thanks : )

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I went through what you were feeling in November and beginning of December also. I felt so low and depressed being honest with you. I changed my doctor and explained everything that I was going through like how my body felt and how it was affecting me mentally. I felt useless to my family not being the man I use to be, weak in every way. But my doctor said to me that you are a sick man and don't be adding extra stress to yourself as it would not be good for me. What we all got here is a horrible invisible disease with no direction to find to making us itp free. I do believe they will find a cure, maybe I'm foolish for believing this but believing gives me some small amount of hope. I really do hope that you will feeling some way good in yourself

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Thanks for reply it just seems one thing after the other and i feel if you never go to the doctors or hospital which I never did till 13 months ago fit and healthy its hard to comprehend and get your head round it plus I am not the best when I feel ill fussing such like I know I am not ill as such then I am if you understand it is hard isn't it really .. I recently banged my head in work which didn't help bruised awful and then in bed sick with it then flu cold sores, ulcer, just on,on it is kinda funny : ) I still count myself lucky though .

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I sometimes post to give other suffers hope that there is a chance that this illness can be overcome and so to not give up hope, albeit my story may be the exception rather than the rule.

When I was diagnosed with ITP 4 years ago at age 54, like most others I had been in good health and this illness just came out of the blue. I was considered a refractory case going as low a zero with six of the treatment options not having any effect and it was only NPlate which eventually put me into remission some 3 years ago.

Since then my life has been totally normal and I do not have any treatments at all. Why my ITP started and just suddenly stopped, no one knows but I guess that I would like to say that there may be a chance that the same may occur to you and so not to give up hope.

Robert

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Hi Robert, very happy to read your scenario and hope to occur in everyone's life. Would you please tell us how long you need to continue NPlate and its dose to get your complete remission ? I took Revolade 50 mg for 7 months but didn't get any response and I had to give up. Thnks !!

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I was on NPlate for 5 months and took various dosage levels (in mcg/kg) each week dependent on what my platelet count was. Some weeks I could even skip an injection if my count was high (once getting to 1,084!) but eventually my count would just drop down again until suddenly one week it just stabilised at 200+ without any treatment and it has been that way for 3 years now.

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Hi guys . Yes I totally know how you rea feeling . I'm 6 years on . The first year I thought I was losing my my mine . I was so low . But I new it wasn't just because I had this dreaded ITP. SO I STARTED LOOKING AT DEPRESSION AND TIP. Yes there is a connection. As you you know low platelets are the main problem. So if you look at Seratonin. It's made in the gut , goes the brain and then to your platelets. BUT WE DONT HAVE PLATELETS FOR THE SERATONIN TO BANK. . So I swear I went to my GP. I asked for Seratonin based tablets called Fluoxitine. Within 3 days of taking them . I NEW,,, I WAS BACK. All my aches and Plaines in my shoulders went. My mood lifted it was incredible. So much so , when I went to see my consultant, I walked in the room and she didn't recognize me . Before taking the SERATONIN I couldn't even ware high heels. Please look into it yourself. I have told my story So many times. I am on NPlate injections and they work for me . I inject myself in the hospital, but I am fighting to be able to do it at home. I was lucky this Xmas I went to Thailand with my husband. And on my return I had the NPlate at home in my fridge ,so I wouldn't have to go to the hospital on New years day. Just try it or find out about it . It will save you feeling so low . All the best Crissy xxx

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So sorry you are down, and I totally understand it!! I was perfectly healthy until August, then wham! I have a question, does ITP make you feel achy, sore and tired, or are you on treatments? I genuinely felt fine except for bleeding and bruising, and am now weaning off steroids finally and on weekly Rituxan infusions. I had hoped the joint pain, skin pain, exhaustion and everything else was just from the meds???? Thanks and sending you some positive thoughts for a better day!

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Reading what others are going through I think I must be very lucky to not have any ill effects to the meds or even to the ITP itself. The only symptoms of ITP are bruising and occasional bleeding from the gums and nose. However I am on meds, at the moment Eltrombopag (Revolade) is keeping my platelet count over 100, not sure what it would be if I stopped taking them, but I do not consider myself to be in remission. I injected myself with NPlate for 3 years until last February, but even then my count was only about 40-50. So Eltrombopag is my saviour! I do not consider myself to be ill or have a disease - it is a condition I have to live with and manage, and my life continues as normal. I have always felt this way about it and won’t let the ITP rule my life, I rule the ITP. As long as I have this positive outlook I can almost forget I have this condition.

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Thanks for all your replies good to have a little rant tbh fatigue and joint pain is annoying me it will all come good in the end still count myself lucky on a daily basis.

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I never felt down with ITP.

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I don't feel down just angry 13 months in no answers guess just the nature if this illness

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Hi Topography52, kyriak51 here I think we have communicated befor and I’m so sorry you’re feeling so down. I was diagnosed with tip in early 1990’s but refused treatment of the day preferring to wait until AMGEN developed a platelets stimulating factor which was approved in 2008 ie NPLATE. By 2009 my platelet were 10-15 thousand with fatigued, bruising, ie bleeding, depression and irritability and sought. I took dexamethasone for five days with no change I then demanded IVig (next step), received infusion and to my surprise it also failed. At this point I was too sick to argue about Rituxan infusions and had not yet learned that a Nplate had been approved. Rituxan has a 50% response rate but I reasoned that 50% is better than nothing so I completed the weekly infusion for four week schedule augmented with platelet infusions without positive results. I was then offered Nplate in 2010, I’m currently on 650mcg weekly to maintain my count at 30 to 80 thousand which is acceptable for me. Depression is common with low platelet as platelets are involved in serotonin production, fewer platelets=increased depression unfortunately we cannot take any antidepressants on the market as they have a negative effect on platelets. The only thing I’ve tried that helped my depression was six weeks of TMS ( Transcranial Magnetic Stimulation) daily for six weeks; I felt great like I was as happy as a 20 year old unfortunately the results were temporary so I have to find some other way to cope with the depression maybe meditation? You might want to ask your oncologist about Nplate to maintain your counts at 50K or above. I hope I was able to help, you can contact me at yoyo0106@sbcglobal.net if you like. Hang in there things will get better:) kyriak51

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I would not say I am depressed I feel at 13 months with this strange illness maybe i would of had some sort of answers : ( I guess it is not the case I am getting frustrated I do try to keep upbeat maybe its the January blues weather has its part to play too its miserable : ) thank you for food for thought though :)

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I don't accept treatment if I am above 10. Partly because I got annoyed with feeling medicalised by having to be checked all the time. It started to affect my mental health quite badly. My consultant was behind me completely. I've had two drops in blood count since diagnosis last April. And I also have neutropenia for which I had six emergency admissions last summer. That really messed with my ability to stay calm about my new way of life. Now I am coming to terms with this. I think. But I haven't had a big (below 30) blood count drop or anything to with the hospital for four months. I go back on Friday for a four monthly check up. I'm just going to ask a few questions, tidy some loose ends on my medical records (make sure my wishes for no treatment above 10 are actually recorded, in case my brilliant consultant moves on) and try not to come back ever again. I recognise if my body has dropped below 30 by the severity of the pinprick rash. So I reckon I just jolly along myself until I'm all dotty up to my wrists!

It has taken me a long time to be so jolly about it all and I did write myself a 'reminder note' of what to do at different stages of blood counts going up and down which had helped.

I've also just started receiving support for anxiety. Which is not just related to my health condition. But the health condition was the reason I was referred for talking therapies through the NHS. I recommend it. Ask your GP. It isn't a sign of weakness, but one of strength, knowing you can help yourself with a little help from others.

Good luck to you all.

Tenk

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Thank you Tenk my hematologist is really good and my consultant as for talking therapy I could gab the leg of a hind donkey : )

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