Sleep walking into trouble: I have had... - CLL Support Assoc...

CLL Support Association
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Sleep walking into trouble

I have had autoimmune haemolytic anaemia as a complication of CLL for three years, with two relapses after a few months off steroids. I've been on prednisolone for more than 18 of the last 36 months and the AIHA is now starting to become steroid refractory, with a higher dose needed to get any control.

I have made known to my consultant my concern about long term steroids and their complications from the start. At the beginning of this year my GP raised the question of my needing a bisphosphonate to protect me from osteoporosis secondary to the steroids. At the time I was more worried about my weight gain an the risks of hypertension and type 2 diabetes and to my regret did not raise my GP's concerns with the haematologist.

After some back pain in August I did raise it and had a Dexa Scan arranged by my haematologist which showed that my hip had dropped into the osteoporotic range since a scan two years before. In October I had sudden,severe and continuing groin pain which MRI scan showed was due to insufficiency fractures secondary to osteoporosis. The concern now is the risk of further fractures occurring in my spine. I am now on a bisphosphonate (sodium alendronate)

My haematologist has now grasped the nettle and I am starting weekly rituximab x4 in the hope of getting a remission. The hope is that my need for steroids will reduce or stop.

My care is complicated with the AIHA managed by local consultant and CLL by haemato-oncologist (ibrutinib stopped after nearly three years in summer because of early peripheral neuropathy; bone marrow showed incomplete remission - down from 90% to less than 20% lymphocytes)

After my cautionary tale, please watch out If you are on long term steroids and do ask your consultant why you aren't on osteoporosis prevention if he/she hasn't flagged this up.

Charlie Girl

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Long term steroids are associated with all kinds of risks including diabetes, infections, osteonecrosis, psych, skin and a host of others. Where do live? There is an interesting AIHA trial in the USA

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And cataracta.gastritis,glaucom...

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Many thanks for this. I'm in the UK and would be very interested in any trials that are extended here.

Charlie Girl

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Yes, long term steroids (especially at high doses) is not good. Is your CLL near to needing treatment? For AIHA rituximab is a recognised secondary/tertiary line of treatment, especially if CLL beginning to show signs of activity - hope it works for you

I hate to be rude....but what age / fitness are you? One alternative is a splenectomy. So far, it has worked for me (operation almost 4 years ago...gosh time flies!)

Interesting to hear Brian K say there is an interesting AIHA trial in USA. I have not heard about this - can you tell us more Brian?

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Many thanks indeed. I should have included age etc before.

I was 70 last month and regard myself as reasonably fit. Neither consultant has mentioned appendectomy and so I imagined I was too old. Seeing local consultant today so will ask.

Rituximab tomorrow. Rather scared as previous treatments have caused hypercalcarmia- very severe with ibrutinib.

Charlie Girl

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Don't ask about your appendix.....but your spleen!! Depending on how big it is, it could be keyhole op....(mine started that way, but spleen was too big to get out through the keyhole, so ended as full op)

I was 53: the whole experience was painless (despite the surgeon!) and I was back at work within 3 weeks. If you reasonably fit and have right attitude (ie get up an go as soon as you can after op), it might well be an option. Which part of UK are you?

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Thanks for picking up the typo - the penalty for using predictive texting and not checking what had actually been written!

I am in Gloucestershire but also attend Barts.

Very best

Anthea

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I developed AIHA about 4 weeks ago, leading to two transfusions and put on 60 mg prednisone. I am now being tapered off the pred and seem to be ok so far. The long term use of pred is definitely an issue and I’m glad it got brought up. Great drug in that I feel pretty good BUT it’s a drug that covers the real problems.

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You seem to be being tapered off pretty quickly.....I was on the top dose for 6 weeks before the slow taper.

The time you need to watch is the end of the taper. I was fine until effectively I was off the prednisone. Things then went bad quickly (from memory, this does not happen to 2 out of 3 people.....hope you are one of the '2'!). There are then alternative treatments if you get to a similar state.

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Thanks the taper off has indeed some concerns for me. Hopefully the guys at Mass Gen know what they are doing. But at least the anemia is hopefully aside, but I will see. It’s likely that I will now go off wandw and go into treatment. Mine was originally SLL that Went into a full CLL, 13q del.

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I'm glad things are going well so far and hope they stay that way. Pleased that you are now aware of the prednisolone/osteoporosis issue in case it is relevant to you in the future.

Best wishes

Charlie Girl

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