Immune system malfunctioning!

Hi

I need to have a moan and ask for help!!!

I have had ITP for nearly 4 years now, and normally have platelet levels of around 50. (anywhere between 35-60 has been seen)
I have been 'discharged' by my local hospital, as they feel I am not ill enough to do anything with, and I get 6 monthly blood tests from my GP- where they tend to panic and try to recall me for more blood as they keep forgetting I have ITP!
My consultant before signing me off admitted that I have more bruises than he would expect for my platelet levels, (around 30 at the moment!- many spontaneous!)and I have purperia most weeks (mostly on my legs and where my bra sits) and most months I get blood blisters in my mouth.

I have found that over the last 2 years I have been getting more and more colds and bugs- I think I have had 7 colds this year, and these are all quite nasty ones, always turning into coughs that last for 2-3 weeks and cause people to avoid me in the streets when I am having a coughing fit!
My GP told me off before Christmas for being close to Pneumonia!:blush:

I don't think my job helps as I travel a lot, mainly within the UK, and I do work long hours (but I have bills to pay and a mortgage!)

I do frequently feel very fatigued- I can best describe it a 'bone tired' when everything feels too hard. I manage to do everything I need to do, and try to live life fully- but I do know to rest when my body says too.

I have had a few blood tests recently, to check for diabetes, and other than 'signs I was fighting a virus' they have all been normal. (love the vagueness of the GPs!)

I am trying to boost my immune system, as I think my body spends too much time destroying platelets and not enough time dealing with other viruses etc.
I take Berroca everyday to provide a vitamin boost, we eat fairly healthily, and I did try 6 months of excluding everything that could possibly be related to causing a reduction in platelets (onions, tomatoes, garlic, ginger, quinine etc etc)- all that happened was I got bored of food!

I am really fed-up of my Doctors not caring, I have ended up gaining weight as I when I feel tired sweet food gives me a bit of a boost to get to the end of the day, and having a cold restricts the exercise I can do!
I am back on the 'plan' trying to shed some weight by eating plenty of fruit and veg and lean meat.

Has anyone any ideas?

Please!!!

As I am rather frustrated!!!

Thanks

Kat

Have you had any treatments for ITP? I figured from your third paragraph that you probably haven't. Some treatments (like prednisone and splenectomy) can reduce your immunity defenses.

Does your job put you into much contact with people? Do you use hand sanitizer? I know people who have given up shaking hands with others, especially at gatherings where food is served. Air travel also exposes you to a lot of colds.

I assume "6 monthly blood tests" means you have blood tests every six months. If you can tolerate the blood blisters, it sounds as if your ITP is quite well controlled.

Getting enough rest and eating healthy food may not solve all your problems, but must at least help. Courage!

Hi Karen,
thanks for your reply!

I have had no treatment for my ITP- just blood tests and waiting to see what happens. I know I am lucky to have stable platelet levels and none of the really nasty symptoms.

My local GPs are frankly useless, I was diagnosed while living in another part of the UK, and the GP there was very helpful, but living in a rural area changing GPs is hard.
I am finding the increasing number of colds an issue, I have been into the GP today as I have pretty much spent as much time coughing as not coughing this year, and I am trying to kick them into finding out why.
Todays Doctor whilst very 'nice' was not much help, but is at least trying antibiotics, and testing my immunoglobin levels. but other than saying avoid flying and travelling, I really got the feeling he was handing our a few drugs to get rid of me!
He told me that ITP has no effect on the immune system and that all it is is low platelets.......

Ah well, wait and see! (with occasional bouts of sulking in the corner!)

I think I am getting frustrated as last year I was running regularly and did a 10k race and this year my main exercise is walking the dogs for 2-3 miles and feeling knackered!

ITP is an autoimmune disorder, so he is wrong by saying it does not affect the immune system. Many of us have the "bone tired" feeling with lower counts. Have you ever had vitiman levels checked? Iron, B-12, D? Thyroid levels? Traviling alot, wash/sanitize your hands regularly!!

Hi Dean,

Thanks for your reply, we all know ITP is an immune disorder (apart from my local GPs!)

I am becoming the queen of hand washing, and also take Vit C regularly- am trying to bully GP into listening, think I may need to become a 'problem patient' to get them to listen!

Just gets so frustrating when the people who are meant to be there to support us are actually no help at all!

Having ITP wouldn't cause an increase in colds or flu. I used to get colds twice a year until I was diagnosed with ITP, then I stopped getting them. I actually get sick less often, which is weird. I think it's just coincidence though.

Somehow over the past few years you've raised your exposure to cold germs. All you can do is what you are already doing....wash hands stay out of crowds and enclosed places as much as possible.

Testing your immunoglobin levels is a good idea. I hope it comes out well!

Sandi, I was under the impression that low Platelet counts puts one at a greater risk of catching something.

Hi Mobilekatz,
approximately 3-4yrs ago I felt I was getting more than my share of colds/flu.
Talked to my GP at the time and he said get the Flu injection every year. Prior to having my first injection, I asked people on the Australia/New Zealand PDSA site, what they thought of the idea and all the replies said yes.

I went ahead and since then have had the odd cold which has cleared up in a few days, but have never had the flu since. My wife and I have done a lot of flying over the last few years to all parts of the world and each flight is 12hrs to get to the USA or Singapore, then another 12 hrs to London etc.

We cringe every time we get on board an Aircraft and hear people around us coughing, but to date neither of us has had the flu. Diane did get taken away in China and checked for bird flu once but was cleared after a few hours in hospital.

From our experience I would say it would be worth a try, initialy I had my platelets checked a week or so later after getting the injection but have never found any change in my counts and have since stopped doing that.

Any disconfort in having the Flu injection bets getting the Flu.
We are off to Sweden, Russia, England, France etc in 5 weeks for almost 2mths
and have had our flu injection as we are in Winter down here now.

Benny.

Dean wrote: Sandi, I was under the impression that low Platelet counts puts one at a greater risk of catching something.

No, it's the treatments, steroids, immunosuppressants and rituxan and so on that put us at a higher risk. That's one of the reasons Nplate and Promacta (Revolade) are good, because they don't do that.

No, ITP does not cause a preson to be more susceptible to catching colds or any other illness. As Ann said, the treatments can. Even having had Prednisone, Rituxan and now Methotrexate though, I still do not get sick more often.

I was part of the Phase 3 clinical trial, before Nplate was on the market. It was called AMG-531/Romiplostim. I suffered multiple pulmonary embolisms, and almost lost my life, and have permanent lung damage and regular issues with bleeding in my lungs even though it's been 5 years. I wouldn't recommend Nplate to anyone or Revolade...since it does the same thing. My platelet count was only about 40-70, and the last blood test I had before the clots it was 64, and within 3 days, it was 230, and this is after 8 months of being on it. It shot from 64 to 230+ in THREE days!!!! with the same dose I had always been given. As far as I'm concerned it's not worth it. I'd rather have low platelets in the 20-30's than risk my lungs dying inside of me from clots. I'm sure some people will get good results from these drugs though. I'd think carefully before using them though.

Hi, I'm sorry to hear you have had lung problems. I've been on Nplate during a trial and after too and so far so good. I do agree with you though that if I could keep counts of 20 or 30 without drugs I would. I also went very high after some 8 or 9 months and was then able to reduce the dose down to the minimum. That seems to be something that happens to a lot of people. Some then go to fortnightly or three weekly injections instead of weekly.

Have you been tested for antiphospholipid syndrome (APS)? It's a clotting disorder which often goes along with ITP. I did insist on being tested for it before starting Nplate and have been tested again recently. I remain negative.

Sorry to hear about that, fishing. That is a real risk with the TPO's. I think that people struggling with ITP really need to consider striving for safe counts instead of normal counts. Too many clotting risks involved.