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Adult ITP

Twenty-six of the most frequently asked questions about adult ITP are answered frankly without using medical jargon in the booklet "What Did You Call It?"

Patients frequently forget important questions to ask when they visit their doctor or hospital - this booklet attempts to provide a backup to those you might have forgotten to ask. This ITP Support Association publication is available on free of charge to sufferers registered on the ITP Support Association mailing list. Examples of reader's adult ITP questions answered by Professor A.C. Newland in recent editions of 'The Platelet'

Q. Last year, approximately two and a half years after ITP was diagnosed - and after treatment with steroids and azathioprine, I was given 5 days treatment of immunoglobulin. After this, my platelet count fell to its lowest ever - only 9. The consultant told me he had never had a patient who had developed such a low platelet count after immunoglobulin treatment and I wonder whether this has happened to any other reader. Also, I understand this may be an indication that splenectomy would not help me. I wonder if any of your medical advisors would be willing to comment.
A. There is no clear association between the use of immunoglobulin and the level of the platelet count when it falls, although it is recognised that with sudden withdrawal of treatment, the rapid consumption of platelets can lead to an overshoot, and this has certainly been recognised following sudden withdrawal of steroids. There is no reason why this would not happen with immunoglobulin, but it is certainly not a regular phenomenon. There is no indication that this would allow any prediction of the response to splenectomy, as a very rough rule of thumb, if there has been a response to steroids, and/or immunoglobulin then there may well be a response to splenectomy, whether the response to treatment has been temporary or not.

Q. I have had ITP for ten years but now that I have reached the menopause I have been recommended to take HRT. Might this make the ITP worse?
A. Many people consider hormone replacement therapy important in the woman who has reached menopause although there are many arguments both for and against this. In general, those on Iong term steroids who will be more prone to osteoporosis which commonly also occurs in the menopause, may be delayed or prevented by the use of regular HRT. Its use can certainly not make the ITP worse and should be considered on its own merits.

Q. I was diagnosed with ITP last year. My platelet count rested at around 3 for quite a long time, during which my doctors recommended I should avoid alcohol. My count has now been around 60 for a few months but I am unsure how much I can drink before my platelets are affected, or how long they will be affected after drinking. Although this question may sound trivial, I have become quite scared that something I eat or drink could make my condition worse, making it difficult to lead a normal life.
A. There is no specific reason why alcohol should be avoided in ITP, although alcohol should be moderate. Alcohol does not affect platelet function, however in excess it can cause gastritis which is inflammation of the stomach, and may lead to bleeding, and of course long term excessive drinking may lead to cirrhosis of the liver which can also cause bleeding into the stomach. If the liver is damaged this itself may also increase the removal of platelets from the blood and lower the count. There is no reason however why normal social drinking is not completely acceptable and safe.

Q. I am 41 years old and I had my spleen out when I was 6 years old. My platelet count is between 11 and 19. I suffer with severe ITP and take steroids on a regular basis. The last 2 - 3 years at different times the colour of my face goes a ghastly white, the doctor says I am not anaemic so could you tell me the reason for this?
A. Extreme pallor of the face is caused by constriction of the small blood vessels in the skin, which reduce blood flow, which is responsible for the pink colour of the skin. It is the opposite of blushing, where the vessels dilate increasing blood flow, and causing the sudden flushing, that is often associated with emotional events. The intermittent whiteness of the skin described in this question would not be related to the ITP, although may in some way be related to the long term steroid usage. It is not however a serious problem.

Q. I am in my twenties and have suffered avascular necrosis following treatment with prednisolone for ITP. I am angry about this and would like to know how common this is and whether it could have been prevented?
A. Vascular necrosis is a well recognised side effect of steroids, although it is usually associated with high dose steroids given over prolonged periods. At the doses commonly used in ITP, and in the majority of treatment protocols, avascular necrosis is rare, but may still occur in 2-3% of patients. It is not known why one individual should suffer, whereas another on a similar dose may not, although a previous history of contact sport such as Rugby, Football and Running may cause some damage to the hip, and may make further damage more likely. It may also be associated with smoking as well. Because the cause of avascular necrosis is not known, it is very difficult to predict why this may occur in any individual, therefore it is important that steroids are reduced as rapidly as is safely possible, for control of the ITP. In older patients, particularly women past the menopause who are prone to osteoporosis, steroids may increase the risk and therefore Hormone Replacement Therapy, or some of the other treatments available for osteoporosis should be considered in conjunction with steroids.

Q. I am only able to take Vigam S infusions because the saline mixed with Sandoglobulin and Alphaglobin caused problems as I am also on steroids. Is this common in ITP sufferers?
A. All immunoglobulin preparations are associated with side effects,commonly related to the infusion. These occur in approximately 15% of infusions, and may take the form of headaches, which can be severe, shivering, shaking, and temperatures, and may also effect the kidneys. Some of the side effects are related to the concentration of the immunoglobulin and the sugars that are mixed with it during the manufacture, but some are related to small proteins that are normally present in the blood. These are usually screened during the manufacturing process, but occasional batches may have slightly increased concentrations that in some individuals may cause reactions. No one preparation is consistently better than the other, at the present.

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