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.

NHS GP SURGERY PRACTICE NURSES

Just here to blow off steam..... For the last few days....maybe even since the splenectomy 2 weeks ago, I feel like I've been kicked in the left kidney area. Yesterday after an hour journey in the car, with the kidney area supported on a folded blanket, it was somewhat uncomfortable by the time I got home. I have been eating paracetamol on a regular basis for 2 weeks. It helps a bit but not much. Today I decided to test my waterworks. It showed BLD-SNG ERY_HB 25+ hemolysed. Now I'm no nurse or doctor and maybe my kit has not been stored correctly and I don't know what +25 means but I know its a couple of stops up the scale from what it should be if the dipstick is correct. I phoned the hospital who 'advised me to go to the surgery, see a doctor or nurse pronto to get it checked professionally and maybe I would need some antibiotics for an infection. Get back to the hospital if necessary'. Brilliant, quick advice from a specialised cancer nurse who knows I wouldn't phone for advice without good reason. So I phoned my surgery....
No appointments today....that's good then....so I quietly stood my ground and got an appointment with the practice nurse who is allowed to issue prescriptions. She found no trace of anything and I explained about the pain. What I got was 'there's nothing in the sample'.....(so go home little lady and stop wasting my time, and what are you doing with your own test kit!!!) - nb. the hospital gave me a test kit during chemotherapy when I kept getting infections and I didn't want to keep visiting the surgery unnecessarily!). So with absolutely no sympathy whatsoever for the pain, and feeling like a hypochondriac and with no antibiotics, I left. I didn't feel like bothering the hospital again, although I know I will be in trouble on Monday for leaving it, but I haven't the heart. Back to my hot water bottle and paracetamol. I know the hemolysing is supposed to have stopped, but I feel it is back. I have the shakes and the radiating pain in my jaw which presents when it is back. My chest vibrations too. It could just be that I am coming off the steroids pretty quickly as well which doesn't help. I feel a big pity party coming on.

POST SPLENECTOMY

My splenectomy went well. It was a clean, textbook, keyhole procedure and I was home in 2 days. The very worst thing about it was the after effects of the drugs of which I may blog later. It is so good to be home enjoying the small things, like cups of tea at 4am and chats with Shreddy (my cat) in the small hours.

I saw my consultant on Monday. The GREAT news is that the hemolysing appears to have stopped and it seems that it was the right decision to remove my spleen. My blood counts are also looking much better. We know with CLL and AIHA that things can turn on a sixpence but for now I am content and feeling peaceful.

SPLENECTOMY DAY TOMORROW

Tomorrow is the day for my splenectomy. We thought it would be a few more weeks, but we got called back from Wales where we were with family (hi Sums, Lyd, Mandy and Martin and Diana of course). The pre-op went well and was very well managed. It was decided that an echocardiogram was needed because of my chest flutters/explosions/purring/vibrations etc. This was done early this morning and since I've heard nothing different, I will report to the ward tomorrow at 7.30am. I admit I am scared....I am also afraid of the dark as well.....but I will be ok. You can't kill a bad thing as my friends know, because I'm still here! Nearly 11 years of leukaemia now.

I know I don't have a public following - mainly because I don't know how to launch my blog into cyberspace, but anyone happening on this, please send me out some good, healing thoughts, prayers etc. Thanks.

AIHA AND SPLENECTOMY

Another few months have passed and I am so tired. We managed to get to Wales to see the family in May and it was really lovely. Family really is everything and those granddaughters of mine really know how to make me laugh. I hope they know how much they are loved....my daughter too.

I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.

I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.