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.
Showing posts with label STEROID WITHDRAWAL. Show all posts
Showing posts with label STEROID WITHDRAWAL. Show all posts
Sunday, 13 February 2011
Thursday, 27 January 2011
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.
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.
Friday, 3 December 2010
LOW SPIRITS
Within a week of leaving hospital we spent a few days with family in North Wales. I was still coughing and feeling somewhat 'fragile' but in good spirits and, as I knew we would, we had a brilliant time. So much laughing....I am so fortunate to have such a lovely family.
However, living as we do on ground floor level, and given that my daughter and family live in a house spread over 4 floors, it is not surprising that the stairs gave me some real problems. The house is rented and has 4 bathrooms and a shower room!!! That is 5 loos/toilets/whatever you wish to call them - but not one on the ground floor....every trip means up a floor or down a floor!!! Who goes down must go up and so forth. After a couple of days I needed some time to get up the stairs with a couple of stops and then a sit on the bed before ..... and coughing so badly I just couldn't breath in between coughing spasms - which makes life pretty difficult and scary. The day after we returned home I presented myself at the hospital. COPD was mentioned, as was previous smoking damage(I gave up over 30 years ago!). Those who follow my blog may know that Bronchiectasis (a form of COPD) is a real fear of mine as my mother suffered very badly from this with her CLL). It also appears from arterial blood tests that I am 'over-breathing' and this is not helping. It is not panic because I can't breathe, it's just I can't suck the air in enough to get my breath. I have lung function tests in a couple of days. I am also being seen on a weekly basis for my CLL by a different doctor as mine is away. This doctor believes the coughing could be viral. Meanwhile my pill collection is growing and I will soon need a shopping trolley if I want to go away again. However, this begs the question 'will I be able to go and see my family again because of my problem with the stairs?' It is about a 7 hour drive each way and with my grandchildren in school/college and studying for their exams and my daughter and son-in-law working, it is not practical for them to come this way. I admit my 'pity party' has lasted 3 days now. The future doesn't look fair to middling - it just doesn't look much at all at the moment. I am on steroid withdrawal (YET AGAIN) with no guarantee that the new drug is working and that the AIHA won't blaze into action (probably around Christmas if my body follows its general pattern). Anyone have any shafts of light they can send in my direction?
However, living as we do on ground floor level, and given that my daughter and family live in a house spread over 4 floors, it is not surprising that the stairs gave me some real problems. The house is rented and has 4 bathrooms and a shower room!!! That is 5 loos/toilets/whatever you wish to call them - but not one on the ground floor....every trip means up a floor or down a floor!!! Who goes down must go up and so forth. After a couple of days I needed some time to get up the stairs with a couple of stops and then a sit on the bed before ..... and coughing so badly I just couldn't breath in between coughing spasms - which makes life pretty difficult and scary. The day after we returned home I presented myself at the hospital. COPD was mentioned, as was previous smoking damage(I gave up over 30 years ago!). Those who follow my blog may know that Bronchiectasis (a form of COPD) is a real fear of mine as my mother suffered very badly from this with her CLL). It also appears from arterial blood tests that I am 'over-breathing' and this is not helping. It is not panic because I can't breathe, it's just I can't suck the air in enough to get my breath. I have lung function tests in a couple of days. I am also being seen on a weekly basis for my CLL by a different doctor as mine is away. This doctor believes the coughing could be viral. Meanwhile my pill collection is growing and I will soon need a shopping trolley if I want to go away again. However, this begs the question 'will I be able to go and see my family again because of my problem with the stairs?' It is about a 7 hour drive each way and with my grandchildren in school/college and studying for their exams and my daughter and son-in-law working, it is not practical for them to come this way. I admit my 'pity party' has lasted 3 days now. The future doesn't look fair to middling - it just doesn't look much at all at the moment. I am on steroid withdrawal (YET AGAIN) with no guarantee that the new drug is working and that the AIHA won't blaze into action (probably around Christmas if my body follows its general pattern). Anyone have any shafts of light they can send in my direction?
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