Hi can anyone please advise me on the side effects of Preglezone and if its necessary for a healthy 13year old girl with ITP to take it?

[Gem1]

She was diagnosed 4 weeks ago with a platelet level of 3. Initially no medication was given, but was perscribed 50mg/day from yesterday so she can get back to her sport. Her platelets are had risen to 10 in the 3 weeks before the steriods were started. Im worried about the side effects, especially the effect that weight gain will have on a 13 year old girl - and I don't want her taking it unneccessarily. I'd really appreciate any thoughts, comments, advice - it's all so new to me and a really scary place to be.

[AnthonyHeard Administrator ITP Support Association]

Hello Gem,

I have not come across Preglezone and assume that you refer to Prednisolone which is the steroid that most ITP sufferers are familiar with and is seen by the medical profession as a first line treatment for ITP. In many cases it is very successful in getting platelet levels up quite quickly. In my case when I was diagnosed with ITP my platelet levels were 4 and I was prescribed Prednisolone which got my platelet levels up to 75 within 3 days.

My problem was that although I responded to Prednisolone my platelet levles would inevitably fall as soon as the Prednisolone was withdrawn. The amount of Prednisolone that is prescribed is based on your body size/mass (ie weight/height). I can fully understand your concerns because Prednisolone (steroids) do have some difficult side effects but we do all respond to them in different ways. For example I found that I got quite bloated , put on quite a bit of weight, had heart burn/indigestion quite a lot, found it difficult to sleep often waking up in the middle of the night, got quite restless, increased blood pressure, and mood swings. Having said all that people respond in different ways.

It is just a matter of keeping an eye on your daughter to monitor any side effects.

But do talk to your specialist and ask them questions about what they are planning to do.

When Prednisolone is prescribed they then tend to withdraw it on a tapered basis, ie they gradually reduce your dosage as it is not good to just stop. Much will depend of course on how the platelet levels respond. In some young people many medical experts do just as they seem to have done with your daughter, they often do nothing for a short period because with some young people ITP can sometimes correct itself without any drugs or treatment at all. Infact in very young children this happens quite a lot.

I was prescribed Omeprazole to counteract the side effect of Heart burn/indigestion which many people get from taking Prednisolone. Also I was prescribed Alendronic Acid tablets to counteract the side effect of potential dage to bones which long use of Prednisolone can cause but bear in mind I had Prednisolone 4 times over a 4 year period and this is a long time.

In the log term Prednisolone can also make skin thinner but this is only when it is used for a long period.

I have tried to give you as much info as I can and hope it has not in any way make you worry because as I have said many of the side effects do not impact in the same way to all users of Prednisolone.

Do talk to your specialist and see what they are planning for yoyr daughter. With many ITP sufferers the use of Prednisolone can produce great results and it can correct the problem very quickly. Infact in some young people ITP can often disappear as quickly as it came. Obviously each case is different .

Please do have a look at the ITP Support Association website, itpsupport.org.uk and the PDSA website pdsa.com as they give a lot of general information about all the various treatments that ITP sufferers can be given including Prednisolone. They also give a lot of other useful info. If you get a chance to watch the film What is ITP ? on the ITP Support Association website it also gives general information on how ITP impacts on the daily lives of sufferers, side effects of drugs and things to look out for.

Hope this all helps

Best Wishes

Anthony

[Gem1 in reply to AnthonyHeard]

Hi Anthony,

Thank you for your very informative reply. I have since managed to speak with the consultant who can also understand my concerns over the side effects. He has assured me that he has perscribed the steroids purely to get her back to her sport and for the skiing holiday that we have booked at Christmas, and if not for this he wouldn't be giving them to her. obviously if this is the case, I would not wish to put her through the complications that may arise from taking the steroids.

I am however, getting conflicting information from a friend of a friend, who is a nurse and also a chronic sufferer of ITP, who has said that with platelet levels as low as my daughter has, she really should be on steroids from a general safety angle, and if it were her daughter she would want her on them irrispective of the side effects.

What I don't understand is that my daughter has been told she can go running and participate in other non-contact sports, yet surely there is still a huge danger of having a fall, and is just as likely to slip over on some ice or whatever.

I'm trying to gain as much information as I can on wheter she should or should not be taking them and also on the side effects. You mentioned that you put on a lot of weight, which is my main worry for her - though the consultant said she may bloat a little in her face but would not gain any more than a kilo in weight.

He has advised my to take her off them as of today whilst we decide which course of action we wish to take. We are seeing him again in two weeks, and he felt that that would not be too late for her to start a course to get her levels up for her Christmas ski trip. I believe the idea was then to start reducing the dosage after 3 weeks.

Many thanks again for all your help.

Best wishes

Gemma

[AnthonyHeard Administrator ITP Support Association]

Hello Gemma,

The problem with ITP is that ITP sufferers all react in different ways to the various treatments and no two people will necessarily encounter the same side effects. Weight gain as a reaction to steroids is one that is generally recognised but in my case it is not something that happened quickly and it has to be borne in mind that I was on and off steroids for the best part of 4 years.

Each case is very much to be taken on its own circumstances. The specialist/doctor will take into account many aspects before they decide how to treat ITP. They will consider age, other medical conditions the patient has, other medication the patient is already taking, the type of job and lifestyle the patient has. With children the specialists often suggest a policy of watch and wait (ie they monitor the platelet levels say weekly and make sure they stay above safe levels before actually prescribing any treatment). With children ITP often corrects itself particularly with very young children so the specialists often take the view that prescribing anything is not always necessary.

Having said that the specialists that I have dealt with in my 6 year ITP experience have generally said to me that a platelet level of under 20 is the point at which they would normally issue some form of treatment (usually steroids). Certainly a platelet count of under 30 is too low for a patient to undergo any surgery and below 20 too low to risk any serious knock or blow. The specialists I have dealt with suggest that they would expect to see bruising when the platelet level falls below about 10 but as usual with ITP nothing is definite. I would say that if the platelet level is 20 or less and has been at those levels for a couple of weeks then I would be asking for some treatment even if it were steroids. NOT treating is taking unnecessary risks but the specialist should be able to advise you. Certainly if the sufferer is playing any contact sport or any sport with platelet levels under 20 I would suggest the risk is too high.

[Gem1]

Thanks Anthony. It's been a really difficult few days but we have come to the conclusion that although her platelet level is still only 10, as she has no other symptoms of ITP and that she is a child so her levels should recover on their own, that she doesn't need the steroids. She took two days worth, but we have now taken her off them as advised by the consultant as I can't put her through the side effects unless she really does need them.

We are seeing the consultant again next week and are in the process of trying to cancel the skiing holiday!

I've also been trying to work what initially triggered her ITP, as i have not been aware of any infection. However, she did have the HPV (Cervical Cancer) jab 4 weeks before her diagnosis and I seem to have established a link by searching the web, between ITP and HPV - i'm wondering if anyone else has any info on this?

Thanks for all your help - things seem a little less gloomy than they did a few days ago!

[AnthonyHeard Administrator ITP Support Association in reply to Gem1]

Hello Gem,

Really pleased to hear that things seem a bit more positive. As is the case with many young people, platelet levels can often recover quickly and the system can often correct itself without medication. The reason why ITP might develope is just so uncertain. The randomness and unprdictability of the condition makes it so frustrating. It is thought that in some cases ITP developes as a reaction to a virus, or sometimes an immunisation. In other cases it could be a reaction to certain medications but the bottom line is that even the experts are not absolutely sure.

Anyway, I hope that things work out well for you and your daughter when you meet up with the specialist again. Do keep in touch.

In respect of cancelling your holiday it might be worth waiting if you can until you meet the specialist again ,albeit much depends on your timescales I suppose. I know how frustrating this is because my wife and I had to cancel two holidays due to my platelets falling to dangerous levels literally a couple of days before we were due to fly.

As a general comment on travel, the ITP Support Association produce a publication called Holiday Insurance and Travel which can be ordered by going to the website itpsupport.org.uk and click on Publications on the left hand side of the HomePage.

Best Wishes

Anthony

[malc]

Hi Gemma,

I can fully understand your concerns. Our son, who is 5, developed ITP almost 3 years ago with an initial count of 5. We did initially try steroids but after an initial boost to the count to over 100 they quickly tailed off again down to 13. At this point he came of the steroids (slowly) as we did not like the side effects - bloating, lack of sleep, pains in legs. Since then his count has remained stubbornly below 10 (generally between 1 and 5) for the last 2 years but we have not tried any other medications as the potential side effects often seem worse than the ITP itself. He does of course have bruises and red spots (petechiae) but little bleeding so believe the wait and see option is the best course of action for him (also some consultants have suggested the same). All cases are different though and it does depend on the severity of symptoms and the lifestyle that is led.

On another point, if you do go away on holiday then make sure you know where the nearest hospitals are and you should potentially avoid long haul flights to avoid any unnecessary risk. We have been advised against unnecessary travel but as we live in Malta we do regularly fly back to the UK but have not gone further afield. Think the reduced cabin pressure and the distance from a hospital in case of an emergency are the main factors people are worried about.

Hope this helps. Happy to answer any questions you may have.

Good luck with it all!

Best wishes

Malcolm

[Gem1]

Thanks Malcolm, its been great to hear from both you and Anthony, and hear of your experiences and how you deal with it. It must be very hard for you with such a young child, and I am lucky that my daughter is old enough to understand ITP and why she has to take the necessary precautions.. I am very happy that we have made the decision to take her off the steroids, and your response has re-affirmed that it was very much the right decision.

We are remaining very positive and hoping that next Wednesday her count will have magically increased!

Many thanks, and best wishes

Gemma