31 years with ITP - new here

[Itp1987]

Hi, I was diagnosed with ITP in November 1986 after a bout of glandular fever, admitted to hospital with a platelet count of 3. I was aged 19. I had a splenectomy in February 1987 as my steroid response was useless, counts wouldn't stay up as soon as the dose was dropped below 40mg and I ballooned up. Unfortunately my splenectomy didn't help my ITP and in hindsight and the up-to-date medical knowledge I wish I'd never had it done! I have learnt over the years to not worry about the numbers but only the symptoms, which actually, for me, are very few. I regularly live with a count between 20-30 and have no treatment. A count over 50 would see me dancing from the roof tops! I have haematologists who have a very relaxed approach over the counts and even when I dip to 14, perhaps after a virus, I remain on no treatment and just do bed rest for a couple of days which seems to always raise it again. This isn't to say I don't suffer the low mood and fatigue and get thoroughly fed up with it all at times. Especially on a nice day when I might have fancied a bicycle ride. I also suffer from joint and muscle pain and tiredness too and many many headaches. I have osteopenia from the steroid use, and reflux, from the steroid use. I now have iron store problems too, whether from long term medication for the reflux or something else. The biggest problem has been in the last year where my count was not high enough to have a mammogram and breast cyst aspiration safely, complicated by both sisters being diagnosed with breast cancer and therefore the need for me to be screened became paramount. The NHS proved totally inflexible in accommodating my ITP needs and in the end I went privately. This seems sadly to be a pattern, other specialties freak out when I say my count runs between 20-30. I had psychology intervention ten years or so into my diagnosis with a Health Psychologist, which I found very helpful for my anxiety and low mood over the 'what ifs' and the unknown future, especially with the risks of nasty infections with no spleen. I have now trained as a counsellor myself and hope to make the same difference in others' lives that he did with mine. I'd love to be saying to those who are panicking when their counts are 40 and 60, don't. But that's my experience, it's only now that I can say I don't panic. We can get bogged down by the numbers and our haematologists urge to treat in response to our panic. I'm interested in those who have platelet transfusions! I was always told that was a really big no no for us. I've seen so many changes in my years of having it. Each one of us has our own experience. IgG seems to be the only treatment that works for me. I've yet to try anything else. When the breast investigations were proving tricky I was tempted to explore treatment options but in the end the need receded. Thank you for reading!

[Judethegardener]

Hi 1987, Thank you for your post. This is good to read. I echo your don't panic. I'm ashamed to say that sometimes in my head I'm shouting, 'A count of 40? That's normal'. 'Panicking and going for treatment when its 75? You don't know you're born!!' The truth is that we are all different and we really have to listen to our bodies, watch out for the signs and take care. I thank my lucky stars that I refused the splenectomy in 1984, and have always trusted my body. My mind is another matter! At 73 I find that the irritation I felt at having to give up cycling and tree climbing etc has been replaced by a terror that I'll fall over, or be injured in an accident. For so many years, headaches, anxiety, depression and fatigue were considered to be all in the mind so it is wonderful to know that I'm not 'making it up' and the weird phenemenon 'power-down' when it feels like every cell in me is on a go-slow, is real.

You and I are living proof that all is not lost after a diagnosis of ITP. I feel blessed that I have been able to avoid any drug treatment, apart from a quick course of steroids before a dental extraction many years ago (which didn't work). Being a vegetarian all my life and staying healthy plays a key part in my well being.

I wish you had been my counsellor when life turned really shitty..

Stay Healthy...!

[Itp1987 in reply to Judethegardener]

Thank you for your reply. Someone who's had it longer than me, respect! I wish I'd had the option to refuse the splenectomy (I haven't been able to stay on the antibiotics, allergic to penicillin and the erythromycin makes me feel awful.) As my count was stable around 30/40 at that time coming off the steroids, in hindsight I'd know that was an ok count for me and would have carried on trying to come off them. As it was, I was on them nearly a year, at a very high dose for my weight so the side effects were atrocious. I'm not sure that time was on my side with the side effects and that's why the haematologist made the decision. And I was 19 and wanted a life! I don't understand the action on treatment for anything over 50 to be honest, hold it for when needed is my thought but when my mood has been low for long times I do wonder what it would be like if my count was not fluctuating. I'm not keen on injecting and stimulating my marrow though, long term. My platelet production is fine, as will all of ours be, I can't get a clear answer on why interfering in the marrow is where the research and treatment is being targeted, surely we need improvement on the 'barrier system' within our bodies when the antibodies get the wrong signals! though I think some of the research is around that too. So I shall stick with my own self care, I know that rest is the best thing for me, and also reduction in stress. But they can't do a randomised control trial for that! I was vegetarian for a while and I think there might have been a tangible difference, but I also had less stress at that point, so never sure if the two correlated. I'm moving back to a vegetarian-centric town in the next few months so I think I might well revert for a period and see what happens. Well done for staying so drug avoidant, that's an accomplishment with ITP!

Warmest wishes.

Debbie

[Monty55555]

Hello, very interesting read. thank you. I have got ITP no drugs have worked with me, currently on N plate but think today I will be talking to discuss what's next. I would be happy if my count stayed around 20 but they always go down to 3-6. the only thing that works is IVIG. I have one question, with your levels being around 20 what do you do about holidays or flying? I think I will be discussing splenectomy soon as no drugs are working.

thanks Tom

[Itp1987 in reply to Monty55555]

Hi Tom, sorry to hear your count goes that low, that is disappointing. I'm assuming you are like me and have good large juicy platelets that compensate so that you're not haemorrhaging at that level? I would ask a LOT of questions re the splenectomy. What I was told was that I'd had my ITP too long (undiagnosed) by the time they removed the spleen and that other parts of my system had taken over the incorrect workings. IE glandular system, liver etc. So I would ask that question of them (their knowledge might have changed in the 20+ years since I was given that explanation). It's an interesting one re holidays and flying. In the early days I was rushing off for blood tests just prior to going away and all it did was increase my anxiety if the count was under 50! So then this health psychologist intervention came along and I decided that I just needed to act as if my count was always low and take the necessary precautions. I board last, to avoid being pushed around, and I disembark last, again to avoid the crush. I don't do any long haul flights however as that was advised against. I'm sure that's probably changed but I wouldn't want to anyway, and not having a spleen I can't do any travelling to the wider reaches as risk of infection is too high and I can't have many of the vaccines that would be needed. I won't say it's all been plain sailing as it hasn't. There have been many holidays in the UK where I've been ill while away, and ended up on bed rest for 2 out of the 7 days! And I'm terrible in the sun, that can really lower my count, so a couple of holidays in Spain turned into a disaster, with one trip to the local hospital to get some steroids! It has made my world smaller, I won't lie. I have been limited but I have lowered my expectations of what I want from life. There are others who would disagree and wouldn't want that for themselves. But when I feel well, I feel happy and walking on the beach can be life affirming (I'm lucky, I live near one now!). Good luck with your treatment going forward. I would be interested to hear the arguments for splenectomy now when all these new drugs are around (I can't have some of them, having had the splenectomy they are contraindicated...) Best wishes. Debbie

[sailor]

Hi there fellow sufferer

How nice to read yours submission and Judge the gardner's reply.

I am very similar and with both experiences and more importantly, outlook on life. I am now 72 have ITP for the best part f 27 years, a steady count of 10 with no medication and yes I still have my spleen. I refused the operation. Yes fatigued some times, although not as bad as some, and male so miss the difficulties female suffer from but hey, the itp patient can live a near normal and long life with some care so I took the attitude to just get on and enjoy. I travel all over the world when I can and never think about it, other than to make sure the country I am visiting has good medical services.

The rider to my storey is, I had heart bypass three years ago. My count needed to be 100+ so as steroids had never worked, Ivig I was allergic to, I was given eltrombopag. Worked wonders, reached to desired level, had the operation which became a quod bypass, then stopped the medication immediately after the operation. Count dropped back to the norm of 10. HOWEVER since then, over three years, my count has risen for no apparent reason and my count is now 70 at the last count 10 months ago. What it will be in June is anybodies guess when I have my annual visit to my haematologist.

I am a member if the ITP support Association and urge anybody with ITP to join.They provide accurate information from specialists in ITP from the UK and the USA and have international connections and are represented on many UK haematology working parties and also the European Haematology Association.

Great to read both posts. Long may you continue to spread the word that there is life with ITP.

[Itp1987]

Hello Sailor! (That made me laugh.) Thanks for your informative response. Great that you have travelled so extensively. I do think that some of the warnings I was given in the early days became a truth for me, and are difficult to move away from. I was told never to travel and never to have children. That was big stuff at 19, and I think I worked very hard for the next 10 years creating a life based around those rules. No wonder I needed health psychology intervention! That's really curious about the increase isn't it. There is an argument that stress hormones can be causing some of the problems and I wonder once your heart was de-stressed whether that had an impact!!! (I'm a medical secretary in my non-counsellor life, so have always taken an avid interest in the science behind it all...) That number 70 must be wonderful - can you feel the envy!

I too am a member of ITP Support Association, great organisation. Well done for promoting it!

Warmest wishes.

[Pzena]

thank you for sharing. I am 72 yrs old and was diagnosed about 9 yrs. However, I know that I had been told years prior that I had a low count, but no one gave it a name and didn't do anything about it. I sometimes wonder if we should treat at all. But once I was diagnosed they wanted to take my spleen. I had read enough that I was NOT convinced. Because what I read told me it was less likely to work when you are older. So, I refused that treatment, which I am very glad I did. Treated with steroids on and off for 8 yrs, only when it dipped below 20. After awhile (and a lot of weight gain), I was having to take too much to keep it up, and for the first time I developed blood blisters in my mouth. (my count went to 3) I had tried Ivg, but it didn't last. I agreed to rixtinux infusions (4). and by the 3 treatment my count started to raise. In June it will be a yr. and so far my count has been between 150-190! When your diagnosed it is scary, and then you read and get more confused. You do have to listen to your own body. You have to be an active member with your doctor,,,,,they are not always right! Stay healthy

[Itp1987 in reply to Pzena]

Thank you for your reply. We all have very interesting stories don't we! IVG does indeed only work for a short time and is very expensive to boot! With me, it's enough to get me through the surgery I needed and gives my body a little rest. I tend to only need one days' worth rather than a full course of 5-7 days to bump me up enough for the antibodies to get switched off. That's wonderful news to have such a lovely high count - enjoy and stay healthy! (I think rixtinux is one of the ones that I can't have without a spleen, though could be wrong!)

[Pzena in reply to Itp1987]

I do believe you are right. I don't think you can take rixtinux without a spleen.

[akhurram79]

Thank you so much for your detailed post

these stories give us so courage

can you pls guide me what are u having now to keep ur lifestyle good

my wife 36 yrs we have 2 lil kids, she diagnose 2 yrs back taking lots of steroid and other things but since 6 months taking no medicnes only vitamin c 1000mg / day but she get tired and complain to have sort of fever

she also starting to think lots about this ITP there is no bleeding sometimes small bruices the last count 2 months ago was 20

pls guide us how to live good life with ITP

What medicine should we take

What food or herbal is good

pls guide us that would be so nice of you

you can add me on what s s ap p [phone]

[Itp1987 in reply to akhurram79]

Hi, thanks for your response. I'm afraid I don't have any magic solution to staying well with ITP. Things are very different for all of us. That's great that she's not taking any medicine at the moment but if she is feeling unwell with a fever feeling then perhaps she should be speaking to her GP or haematologist. The tiredness I think most will agree can be attributed to ITP, and if she has two young children too then that will be making her tired but it's important to rule out anything else. Sometimes we can blame ITP for everything and sometimes it isn't about the ITP! I know, from my own experience, that being around small children who bring all sorts of bugs home from nursery and school, that it makes our immune systems work harder when we have ITP, and any change in antibody levels while we fight an infection can cause our counts to drop. All I know, for me, is that rest works the best. When I'm tired, I rest. If people I know are unwell when I'm not great myself I try to stay away from them so that I don't continually put myself at risk of catching things, I know that, for me, viruses will knock my count down by at least 30, and tummy bugs can drop me into single figures. Perhaps there are some young mums on this forum who can offer you some advice for your wife. I don't take any specific food or herbal supplements so cannot recommend any I'm afraid. Ask her haematologist, if they have any suggestions. We need to be careful with ITP as some herbal/alternative remedies actually have a substance in that lowers platelets in the healthy population, so always ensure the practitioner knows her history and understands it. I hope things improve for her soon.

[Neolicius]

Thanks for the great post, it put my mind at ease. I was diagnosed with ITP in October 2016 so I'm new to this and also having issues keeping my count above 40 when on low steroid dosage.I also thought this is death sentence but after reading your post I feel there is hope to live.Keep up the good work, you in stealing hope in the hopeless.

[Itp1987 in reply to Neolicius]

Hi. I'm glad my post gave some hope. Be ruled by symptoms not numbers. A bit of bruising is not the scary stuff. It's just a warning sign. I know Things are changing from differing colours in new bruises and if they are spontaneous and not linked to an injury. It's the former I am guided by. I don't know about others but my ITP spontaneous rises tend to be a light brown colour. And of course petechia and blood spots or bleeding. I hope you can get off the steroids. For me, I did it very very very slowly. I'm not sure they do it this way any more. I would drop half a mg once a week. So say I'd be on 10mg I'd drop to 9.5 on one day the next week remaining days I'd be on 10. The following week I'd have two days on 9.5 and the rest on 10 and so on. It was laborious but it kept my count stable. I only did it this slowly around this level of steroid. I think it sped up again once I was in about 4mg. Can't remember now it was so long ago. Always take medical advice. This suggestion was by a haematogist at one of the London Teaching Hospitals. Good luck. There is always hope. Even when it doesn't feel like it.

[Neolicius]

Thanks for feedback it's so great to know I'm not alone.I'm still on high steroid dose of 50mg a day due to the platelets drop due to tapering.I also can't wait to come off steroids but my Dr said I should still remain on it because I'm also anaemic.

[Itp1987 in reply to Neolicius]

Oh that's a tough one. I have anaemia too. The say there's not a link, but there seem to be a lot of people here who have it! Perhaps Anthony can do another one of his surveys asking for how many have it!??

Perhaps ask your haematologists what cut off level they would be happy for you to drop to with the platelets (and that you would feel safe with). Mine let me sit with them as low as 15-20 if I'm not symptomatic, while I don't do anything risky physically. They can bounce up 10-20 in a day or so, when I was tapering I was having blood tests twice a week to finely tune it. Again, I know NHS resources have changed since that time and it's not as easy. But if you really want off them I'd see what discussions you can have with them to enable this. It depends on what type of anaemia you have etc, but perhaps iron infusions may be another way to treat you than keeping you on long term steroids? (I was allergic to one type of infusion so tried another...). We are all different, and I must emphasise this is my story and experience and not necessarily yours. Good luck.