I have CLL but not under going treatment. After a week of feeling tired and breathless at the slightest action, I went downhill and sent to hospital.
After my haemoglobin went down to 33, the doctor eventually worked out the AIHA condition and sent me home from hospital with Predisolone (+ folic acid).
On 93mg, the first couple of weeks, I initially felt really well with with lots of energy and my haemoglobin climbed back to 111.
Next Predisolone was lowered to 80mg for a few weeks and my haemoglobin has remained steady every two weeks at 109 and 108. Next two weeks the Predisolone will be lowered to 70mg.
I'm a bit confused now - I expected that with the haemoglobin doing well, my tiredness and breathlessness would go away but it hasn't.
Has anyone else been in this situation ? What should I expect ? Is it just my body adjusting ? Is this how it is now ?
Thank you for your comments.
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FarmerJacks
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I am not sure I recognise your HB unit...was it REALLY 33, as I think that is incredibly (very dangerously) low (if I have your units correct, normal is 135 to 170). At 110, it is still low.
I had AIHA, but by HB never got to those low levels before treatment. My main sign was breathlessness - if I understand your levels, I was nowhere near them, so perhaps no surprise I had no tiredness. I was put on steroids at an HB level of around 10 and falling (I think in your terms 100) and was on the high steroid level for 6 weeks (my haematologist said something like the AIHA needs a good kicking). The steroids bumped my HB back up to over 14, towards 15 (so mid-range of normal), certainly within 2 weeks. I felt good and as the long taper went on, I maintained that good feeling.
However at the end of the taper / steroid finishing, I felt breathless on light exercise again and it turned out the AIHA was back. Steroids only work (after finishing them) in 2 out of 3 cases (and I am not sure how long this 'working' continues).
I am not sure what is going on with you, but is your HB already dropping again? My understanding is the body finds it hard to adjust to faster drops in HB (slow drops, the body adjusts and so it can be disguised until HB measured). So if you are feeling breathless, this could be the cause - have your HB measured
What I don't understand is if it is dropping, why is it dropping when you are still on high steroid levels? OK your top dose time was short (I think you said 2 weeks - my understanding 4-6 weeks is normal: mine was 6 weeks) , but effectively you are still on a high dose.
So have your HB measured. If it is dropping, there are secondary treatments for AIHA, but you need to get to a CLL specialist, as you are entering 'rare' territory even for a CLLer.
Thanks Quarry. Yes, it was down to 33 - had six blood transfusions until they worked out AIHA ! My haemoglobin at my last three blood tests (every 2 weeks) has been 111, 109 and yesterday 108 so it's not really dropping but I still have some level of fatigue and breathlessness (not as bad as previously though).
33...gracious and glad you are still with us!! I do wonder why it took so long for AIHA to be diagnosed. There are factors that your haematologist should have measured/spotted, well before you got to the crisis levels you had. Apart from HB, these include high bilirubin, high LDH (both results of excessive red destruction), high reticulocytes (baby reds, so your compensating of the mass red destruction going on in spleen) and (by feel) an enlarged spleen (which is doing the red destroying). Another AIHA risk factor (apart from male) is positive DAT, which should have been measured when you were diagnosed with CLL. Has your haematologist not been measuring these? They should have been.
If not, are they a CLL specialist. You really need one.
Other AIHA signs you can see are yellow urine, ashen face and yellow eye-whites. And yes, the breathlessness/tiredness.
Let's hope your HB is not just stable, but increasing to normal.
Thinking about your energy levels, perhaps the steroids gave you energy/buzz initially, but after 2 or 3 weeks your body has started to get used to the ridiculously high level. So perhaps your body is now remembering it needs to recover from when you were really, really ill? 33 is way beyond dangerously low. This is not knowledge, just a wild thought)
Thanks Quarry The Haemotologist only got involved when I went to hospital and even then it took a couple of days. Covid had meant that my CLL six monthly blood tests and consultations had not happened for 18 months and this is when the AIHA snook in. Anyway, I'm being regularly monitored now (every two weeks) so hopefully it will sort itself out and definitely not get to those low levels again. I think you're right about the getting used to the Predisolone.
“In range” can vary from lab to lab. Low at my labs ranges from 11.1 to 12.0 for women. The lows for men would be a bit higher. 10.8 would still be low for either.
I find that I am breathless and fatigued even when my HGB is at the bottom of in range. I did not have AIHA, but struggled with low HGB for a while. One thing that made a difference in my case, when I was at the bottom of in range but not feeling well, was upping my B12 and adding a B Complex tablet. My nephrologist told me that those can test as in range, but sometimes a boost can make a difference. I hope your doctor can find the best approach for getting your count up. Of course, ask your doctor about trying this. It isn’t a treatment for AIHA, but helped me get past my anemia after treatment. My Bs are monitored closely now. Keep us posted.
I suffered with a bad bout of AIHA that was hard to get under control. As soon as I got it under control, they started treating my cll with ibrutinib. AIHA is often triggered by our cll and treating the cll can help treat the AIHA.
My hemoglobin went from 15 to 7 to back to 15. Below 10 was hard for me, above 10 I functioned okay. I have been on ibrutinib three years now and it is known to control AIHA. My energy levels are fine now.
You might still be hemolyzing, just not to the extent your were, that's just a lay person guess. I would want to know if I were you if it is time to treat your cll and if treating it might help your hemoglobin and protect against a recurrence of your AIHA.
Of course those are questions for your doctor. But I think its worth asking. If your cll was active enough to trigger an AIHA episode, I would think it worth having a conversation about whether it is time to start cll treatment.
Good luck to you. I have linked below to an article by a doctor who thinks troublesome AIHA in and of itself can be a treatment trigger for cll. What I do not know is if a doctor would consider that steroids are not controlling your AIHA to the full extent you would want and if cll treatment might help. If you have other indications for treatment, such as low platelets and rapidly rising wbc, it might be worth a conversation.
I am not sure, but I would not think FCR is appropriate for cll with AIHA because of the fludarabine. You might therefore qualify for frontline ibrutinib, even in the UK. I would want to have that conversation with my doctor because of the good literature out there about ibrutinib keeping AIHA in check.
I’ve had AIHA 3x — 2006, 2013 and 2017. Each time my HGB went lower than the time before and, like you, I went down to 34 last time. I was actually in Alaska and was admitted to hospital in Anchorage. My HGB on admission was 56. I advised the doctors that there was no way they would find an exact blood match because I’d been having IVIG for 4.5 years, but the US concerns about potential litigation meant they spent 3 days trying to find a match. They couldn’t! And, in the interim, I went down to 34. On each of the 3 occasions I’ve had “Warm” AIHA and Prednisone has played a significant role in my recovery. I had 4 units of blood in Alaska and, on arrival back home in NZ, I had 4x Rituxan.
During the 2013 episode, my ALC counts went up so, as well as blood transfusions and Prednisone, I had 3x FCR and 3x Rituximab.
I’m now on Venetoclax (started April 2018) 200 mg since Nov 2018 and clinically in remission.
Thank you thb4747 for taking the time out. Do you have any idea what causes the reoccurences ?
I think I'm just getting a little frustrated. The Prednisone seems to have done it's trick and brought the haemoglobin back to a reasonable level (110 ?) but I still have some level of breathlessness and fatigue. Or is the haemoglobin not high enough yet ? Or is this how it will be now ?
At my last face to face consultation, my Dr said that my CLL had not really progressed and that I shouldn't need treatment for it for the next 10 years or so. (I'm 54 at the moment). And he's not mentioned any of these drugs for AIHA or CLL as a possibility so far.
The good news seems to be that there are plenty of treatment options.
My Prednisone has slowly come down to 60mg daily but the doctor is reluctant to reduce it more as my haemoglobin is also dropping (albeit very slowly, latest 102). My doctor has discussed put me on secondary "immunomodulatory treatment" where there are lots of options available but he's not sure on how successful they will be. Can anyone elaborate on this please, outline likely options and recommend their successes ? Thank you.
Still quite breathless which I put down to low-ish haemoglobin (latest 102) though my doctor doesn't. The only way to find out I guess is to increase to levels it was at 2 years ago (131). Anyone have any tips on how to naturally increase haemoglobin levels eg. exercise, foodstuffs, herbal, etc. I'm on 5mg folic acid daily.
Responding to bump this up to the top because I am interested in ways to increase hemoglobin, too (although not caused by AIHA). Mine dipped after an incident this past summer and has not recovered to my previous levels. I exercise (walk daily 3-5 miles) but thinking about adding something like stationary bike or running "sprints" since I still get winded when I shouldn't.
Sprints might work, though probably not in boosting your haemoglobin, but in improving your cardiovascular fitness. I moved from a place where there were no hills and where I maintained my fitness by walking and using a stationary bike. Doing bike hill climbs which were possible in my new location noticeably reduced how much I would find myself puffing when walking up the hills, despite my haemoglobin continuing to trend down.
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The Haemotologist only got involved when I went to hospital and even then it took a couple of days. Covid had meant that my CLL six monthly blood tests and consultations had not happened for 18 months and this is when the AIHA snook in. Anyway, I'm being regularly monitored now (every two weeks) so hopefully it will sort itself out and definitely not get to those low levels again. I think you're right about the getting used to the Predisolone.
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