PREDNISOLONE WITHDRAWAL

I have been on Prednisolone for over 2 years now for AIHA. Starting at doses upto 60mg a day and decreasing, each time I get to about 10 mg a day I suffer terrible heartburn with pain radiating into jaw/teeth. When I get the dose to 10mg or lower the AIHA has returned. I am now on my 5th withdrawal and again at 10/5 mg on alternating days my heartburn is scaring me. In 2009 it was so painful I ended up overnight in hospital as a suspected heart attack (I have a history of angioplasty for angina).

I currently am also taking Azathioprine (immune suppressant), Penicillin V and Septrim (both antibiotics), Aciclovir (anti viral), Omeprazole (for tummy), folic acid.

I had a splenectomy last July for the AIHA and whilst in hospital again in October with a chest infection and breathing problems it was discovered that I was hemolysing again. Prednisolone was restarted at 60 mg a day together with Azathioprine which is hoped to take over from the Prednisolone. As well as the heartburn I have the shakes, general weakness and palpitations (which is to be expected after so long on this drug). I am a complete addict where this drug is concerned and life seems permanently one round of withdrawal symptoms. I am also recently diagnosed with a 'bit' of emphysema in the top of both lungs and damage to both lower lungs from past pneumonias/chest infections and 'some degree of pulmonary collapse' from the splenectomy.

Each withdrawal takes longer and this time it has been extremely slow and difficult. As an 11+ year cller I appreciate that I am an 'old hand' at cll and its various twists and turns, however, any advice would be appreciated.

ANOTHER DIAGNOSIS

After my last stay in hospital and visit to Wales, I still had a lot of trouble with my breathing. Lung function tests were done and happily my breathing is now better. However, yesterday I saw a lung specialist and his findings (taking into account CT scan of lungs and some more lung function tests) are
1) a bit of Emphysema in the top of both lungs causing loss of lung tissue 2) the bottom of both lungs have scarring from previous infections and possibly the splenectomy.
3) This has reduced my lung capacity by 25% over all.
4) No significant narrowing of airways and not Bronciectasis

Now this seems a big deal to me. Emphysema is a very scary word and under the heading of COPD. His advice was try not to get any more chest infections (3 pneumonias so far with my CLL + the chest infection last October)- all very serious and requiring hospital in-patient treatment.

Meanwhile I am still strugging with Prednisolone withdrawal. I could do with some really good news.

BONE MARROW RESULTS

The results of my bone marrow biopsy are in. There is still 10-12% of leukaemic cells in the bone marrow. What does this mean? Well, my doctor calls it a 'good partial response'. What does it mean to me? Disease progression. It means that I still have leukaemia in my body after my last treatment. I didn't expect a complete remission this time, but it is still a disappointment. I had hoped that I might be able to forget my illness for a little while, but it seems not. The spleen question? To remove or not to remove? The decision is on hold at the moment as my doctor is going to ask advice of a world class CLL doctor. The question he is asking is, 'is it appropriate to remove my spleen at this time'. The AIHA is fairly stable and my dose of prednisolone is now 5mg and 10 mg on alternating days. I admit I am still depressed and my spirits are very low, but I am trying to hide it.

DEPRESSION

A new year. A time I always thought of as being a new start with everything to look forward to.

But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.

I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.

AIHA

I have AIHA (auto immune hemolytic anaemia) and it seems my white blood cells (and I have thousands of them) are killing my red cells as soon as they leave the marrow. This has to be got under control before I start any treatment. My doctors tell me that they want to schedule treatment for the first week in January which is only a few weeks away. The problem is which treatment shall I have? I am inclined to try Campath again to hit the high white cell count and then Rituximab but as I use a UK hospital, maybe funding could be a problem.

It is my 61st birthday on Monday and I will be at the hospital! Then again on Wednesday at the Royal Marsden in Surrey. How I do see life and know how to enjoy myself!

I am having steroids to help with the AIHA which meant I spent yesterday in a heap of tissues. Feeling better today thank goodness. Fancy not being able to celebrate your birthday with a small glass of wine........ Maybe I'll just smell it :-)