So last week I was having the worst fatigue so far apart from when I had pneumonia. I’ve taken antibiotics for a few days now and the infection is clearing. I’m also less fatigued and more able to walk. Almost back to my new normal.
This dramatic fatigue with a relatively minor infection (I also got a fair bit of fast heart rate) makes me wonder: how much of fatigue in CLL is caused by untreated, unrecognized, small pockets of bacterial infection that we don’t get many symptoms for precisely because one immune systems are so sluggish. So a temperature, pus, inflammation and hence pain, redness, warmness around a wound, fluid released into lung tissue giving rise to the symptoms of pneumonia, and even excess sputum and mucus are ALL caused by the immune reaction to an infection not the bacteria itself.
This leads me to another question. For people who’s immunoglobulin is low and they suffer from repeated infection, the idea of IVIG is simply to replace antibodies that are lacking and so make the immune system work better. So, of course if you are given IVIg you should get less infections and your body should clear them faster.
Does that result in a reduction of people’s fatigue?
I’ve not spoken to anyone who’s had IVIG apart from one person who’s on it just now. What’s the lived experience in this group and does anyone have links to any clinical papers on this?
Also is there clear agreed international criteria for starting it anyone is aware of? Certainly the UK/EU license is very vague about how to decide when it’s time to start.
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Additional fatigue is actually a common symptom after IgG infusions; I experience it to some degree with both IVIG and subcutaneous IgG, but generally for only a day or so after the procedure. (That's still one day a week of additional fatigue on subcutaneous IgG.) Obviously if you are experiencing frequent infections, perhaps with many being sub-clinical, then the IgG boost should improve your body's ability to overcome those infections and reduce the fatigue associated with the body ineffectively fighting to overcome infections.
We need to remember that IgG is very expensive. It's about US20,000 per infusion before co-pay's etc, and in Australia, about $3,000 for just the IgG (depending on body weight), plus the cost of using an infusion chair for a day every 4 weeks or so with highly trained staff in attendance, along with saline solution, any premeds, cannula, etc).
Supply is limited, which is why there needs to be a proven need. There's no international standard but the criteria are similar, ie X (typically at least 2) serious bacterial infections (perhaps requiring hospitalisation) in the last Y (typically 12) months along with an IgG count below 3, 4 or 5 (300, 400 or 500). Last I heard it's 3 the UK, 4 in Australia and 5 in Canada. I suspect the level is adjusted up or down to manage the demand on the limited supply.
Thanks. So much about CLL treatment sounds a bit vague to me! Interestingly I’ve had two hospitalizations in the last year which my specialist described as life threatening. But at the time my immunoglobulins were normal. Now it’s at 5 it at least it was a month or two back. It dropped a lot over the last ten months. Not sure if that means it will keep dropping fast or bottom out. Having a lot of more
Minor infections but aggressively and early treatment of them seems to be helping prevent it getting worse.
My IgG was under 5 when I was diagnosed over 9 years ago and bounced up and down with a general downward trend to a low of 3.4 before I started IgG infusions over 2 years ago, plus I have been neutropenic for probably 12 years. CLL is a cancer of the immune system and ALL of us have to accept that any infections can become life threatening fairly quickly. You've had a couple of scares and you need to adjust to your new reality faced by all of us, where you can no longer take the blasé attitude people generally take about avoiding infection risks with their well functioning immune systems. I wrote this post 5 years ago based on my early experiences of struggling with a compromised immune system: healthunlocked.com/cllsuppo...
Neil, was wondering about IgM, IgA, and IgG. My IgA and IgG hover on the low side but still within range. My IgM is the one that tanks. Below normal constantly. I know the CLL affects these levels but how can someone raise these levels without medical intervention. Does exercise help these levels to increase. What about certain foods. I read that grapefruit, deep colored veggies and fruits such as red peppers, red grapes, meats such as chicken , beef liver, and fish. I get sinus infection from time to time. Been going to a ENT and he looks all the time and says everything is ok. He does suggest the C-pap machine for sleep apnea. I do not know if a C-pap machine will be good for a blood disorder, I know for the heart. That IgM, is that level affected by aspirin and cholesterol meds. I take both. Also Fish oil. Which by the way, Dr. Weirda's fellow doctor jumped me about those meds. I do not hardly have any type of cholesterol problem or blockage. My Cardiologist did the nuclear testing on me and imaging of the heart and said all was good. Was funny to hear since I am a big guy but getting littler. But he jumped me about the meds as well and my blood pressure meds. I have hardly any trouble with blood pressure. I took this up with my GP and he said that I must take these meds to protect my kidneys because I am a diabetic. But my diabetes never hardly flucates. Stays around 100 on daily check. A1c around 5.5. Another question, after treatment does one's immune system come back into balance. I know the WBC, ALC does for most. But what about IgA and IgG and IgM? Back with any treatment? FCR, Ibrutinib, Stem cell transplant, CAR-T? Sorry about the long post. Before all these I was a Simple Man, this disease has made me complicated. I want Simple Man back again. One day a much more complicated man with a Simple answer called a CURE will make me a Simple Man back again. Neil, thanks for the ear. STAY STRONG J.R
As I understand it, Immunoglobulins drop with CLL because of the way CLL cells interfere with (suppress) Helper T cells that normally work with healthy naive B-lymphocytes to form mutated B-lymphocytes specific to a given antigen. These lymphocytes mature into plasma cells that churn out immunogobulins. So you need healthy B-lymphocytes and minimal to no CLL cells for immunoglobulin production. Hence nothing is going to boost immunoglobulin production unless it counters CLL.
FCR suppresses T cell for up to a year after treatment, as well as wiping out good B-lymphocytes. Other CLL drugs also target B-lymphocytes. So there is as yet no treatment guaranteed to raise immunoglobulins in all patients. Some on Ibrutinib see a slight improvement, but I'm not sure if it is permanent. It was hoped that Lenanidomide/REvlimid (a thalidomide variant) would help boost post treatment immunity, but those hopes haven't panned out.
Thanks Neil, I do want to apologize for the long post and also that I have not did a post on the Town hall meeting back in April. I will though. Dr. Keating made a lasting impression on the wife and I. Things have been busy for me. STAY STRONG J.R.
Adrian - There are a lot of reasons people wish to have their posts restricted. If someone wishes to have a post restricted to community only, or to not reply to a post, that is their choice. If they feel that they have something important to say to the world, but don't want their name involved, they can always contact an administrator. Guess you edited out about posting through you.
You seem to prefer to have your posts made public. That is your option, but it is not your job to solicit replies through you, resulting in the post being connected to your name if it shows up on social media. Please post however you wish to, and let others do the same. I do not wish what I might reply to this put up anonymously by anyone else. There are things about what I would say that would still identify me to some. So, no comment. Your choice.
Adrian, the admins DO have a set of rules about which posts should be locked by which we endeavor to achieve a balance between making this community discoverable by those with or caring for someone with CLL/SLL while maintaining member privacy. These are based on our community and security guidelines: healthunlocked.com/cllsuppo...
Our volunteers including MsLockYourPosts assist us in this regard and MsLockYourPosts has deliberately chosen her username to highlight awareness of this important issue. HealthUnlocked provides members with the choice to lock their posts or not respond to unlocked posts and that choice should be respected. You and MsLockYourPosts just happen to have strong views at opposite ends of the spectrum.
Hi Adrian, I’m sorry that you are finding some of the rules petty but I can assure you they’re there for sound reasons in an attempt to meet the needs of all of our members.
Admin and volunteers frequently receive contact from members, particularly newbies who hadn’t appreciated the implication of the locked and unlocked posts. You’ll appreciate that for some people, over sharing at a time of severe emotional distress is a possibility. I personally left another site because all posts became public. For those, like myself who have had strong personal and professional reasons to remain undisclosed, we have to do all we can within limited means to protect their identity. Sometimes it only takes two identifiable characteristics for google readers to think, ‘hell that sounds like such and such a person!’ It matters!
It’s fully understood that anyone can join if they are so minded to access locked posts. However, we do watch for mischievous intent and it must be stressed that any person found copying and pasting comments from our locked posts anywhere else on the net, including F/B, will be immediately restricted from this site and a request made to HU to ban them.
Privacy and a ‘safe place to fall’ underpins the philosophy of this site. It’s not an easy task balancing this with promoting our presence but growing membership numbers suggest we are perhaps getting the balance right.
Like Neil, I feel a little more fatigued for a day or two, and then get back to “normal”. My IgG stays under 450 when I don’t have IVIG. My other two numbers are also well below normal. I had had 4 sinus infections in the previous 12 months, plus Mono. My CLL specialist put me on it immediately. Have it every 1-2 months depending on my numbers. Have not had to have an antibiotic for a sinus infection since June 2016. So it does work for me. I do believe, however that the fatigue we often feel is due to sub clinical infections, which other people could fight off easily, we can’t. I also think the malaise of feeling like we are “coming down with something” but never actually coming down with it is also due to subclinical infections.
My concern is whether or not my IgG will go up and STAY up if I go into remission. My doctor says he hopes it will but can’t say for certain. The Ibrutinib and Venetoclax trials are still gathering data, and per my doc, they don’t have mush data on that topic yet. However, 10 months in, my numbers are all great, and all nodes are in normal size, but IgG is still low, so I am wondering if it should also have gone back up by this time.
Adrian, I don’t know who sees my posts As for ivig, I had 6 months 2x a month. I had it for a rare autoimmune skin disorder. I do not have debilitating fatigue. I have not noticed any additional energy, nor less fatigue then when I was on it. I am going back on it for the rest of my life next week. If it does do those thing, it could take 2 or 3 months to notice. It works very subtly. I will now pay attention to to those things. Feel free to contact me on or off line for updates
Basically a locked post can be only seen by other health unlocked members. Unlocked posts are able to be seen by anyone who happens to put words from the title or key words into google. This is both good and bad. Good coz we get new members. Bad because some people are very protective of their privacy and don’t want to be out with their cll.
Locked posts are much more restricted than that. They can only be seen in full by a member of HealthUnlocked Following the community in which the locked post is posted. Anyone newly following our community is vetted by admins and restricted or banned from HU membership as appropriate to protect our community members.
This is very interesting. I was about to ask what the mechanism of the fatigue would be. I was going to postulate that it could be related to the antibodies stimulating the immune system to action and perhaps uncovering one or two low grade infections. Do you also have CLL eliot? If so do they think the skin disorder is related? I know we can get any kinds of autoimmune disorders.
Adrian, my body is SO VERY screwed up. The Scottsdsle, AZ Mayo Dermatology department and one of the top USA dermatologist (UC Davis) diagnosed my skin disorder (Dermatomyositis-DM) as caused from the my CLL. It is not from the treatments. My Phoenix, AZ Mayo CLL specialist insists that my skin issues are NOT. When a person has one autoimmune disorder then they will typically have multiple. I have Hashimoto’s - CLL- DM & Oral Lichen Planus. The fatigue is probably from our bodies fighting itself which is the same as an infection. And that’s my opinion!
The people who you say made you feel attacked and are zealot's have been constants on a health site that has provided a uniquely safe harbour for so many of us. I bailed from FB sites, with the exception of CLL for Women/Lisa and Hera. I am hugely grateful to them and respectful for what they have created and preserve.
Absolutely agree. But the rules say we can have some locked and some open posts. I just don’t like seeing almost every post descending into a public conversation about this. Can’t we just put this to bed that people are allowed locked and open posts. And if the admins think a certain open post should be locked they just lock it. And then privately explain to the author their rationale. As a newbie I start to feel unwelcome if in all my efforts to fit in with the unwritten rules I still get more comments on some posts about whether it should be locked and the precise wording I should use to alert a post is open or locked. Maybe admins should agree what wording they would like appended to posts depending on whether they are open or locked. That would help newbies and we can get on with discussing the matters we should be. I don’t have energy for this every day honestly. I will do what I’m told if I’m clearly told how to do it. And I won’t be offended if an admin quietly locks a post they feel would be better that way. It’s just the public controversy about it on every post that is making me fed up.
They are volunteers, not lawyers drawing up terms and conditions. These are good people Adrian. Just sit back a bit and watch. They manage to create a space where all sorts, and I mean all sorts have a space/voice. They are fair. I've no doubt you will continue to add great value.
Thanks for encouraging me. We all have enough to battle CLL about without fighting each other! Or nagging each other incessantly. It must be so off putting to new people to see all this.
While I certainly don't want to start, or even get into a fight about locking or unlocking posts, I sympathize with Adrian on this subject. Maybe I've been in the hospital so many times that I've lost all modesty, but the "privacy issue" is not personally a problem with me. However, I understand that some people regard it very highly, so I have a suggestion: Why doesn't HU simply set "locked" as the default? This is a very limited community, so why even have the choice to allow google or FB, etc. see it? If you want to google, go ahead. The same with FB, etc.
One last point. I'm not even sure how to lock my post, although I imagine the information is on the website, if I need it. SO, rather than search for how to lock my post, I have chosen to pretty much simply REPLY to somebody else's post, whenever I think I can be of help. Lazy? Maybe, but true! (And, I'll bet I'm not alone, here.)
Having search engines like Google direct traffic to unlocked posts on HealthUnlocked is the primary means by which HealthUnlocked continues to grow, as I illustrate here: healthunlocked.com/cllsuppo...
I have ivig and it’s changed my life—- I can actually plan things, get ahead, without the real, in my case what became dread, at having to cancel them because I was ill. I’ve told everyone that the one upside of all this CLL etc is that now I have IVG every month, I have a life .
I know I'm picking up an old post but just concerned about fatigue.
Saw the haematologist this week and said I cannot handle the repeat infections I get back to back.
Managed to get a copy of my bloods which showed December reading IgG 7.85
With IgA 4.20 and IgM low at <0.25.
When I mentioned repeat infections haematologist said I had to get immunoglobulins tested straight away which I did that same afternoon and I'm to see him again next month with a view to getting infusions one they've checked everything.
I'm hoping to get some answers as to why I cannot stay awake.
Dave, if you have correctly reported your Ig values from last December, I'd be very surprised if you qualify for IgG infusions from your latest tests. I would be most surprised to hear your IgG levels have halved in that time, which is what I think you'll need to qualify for infusions (see below).
Approximate immunoglobulin reference ranges are as follows (with variations from lab to lab):
IgA 0.60 to 4.0
igG 7.0 to 16.0
IgM 0.5 to 2.50
Your iGA is around the upper reference number and your IgM is below the lower reference number, which is an unusual combination. Importantly, your IgG is at quite an acceptable level. Depending on where you live, along with frequent infections , you need an IgG serum level typically below 3.0 or 4.0 to qualify for infusions. (I think it is 3.0 in the UK). I manage to get to around your IgG level after my weekly IgG infusion.
I know from personal experience how fatiguing and debilitating frequent infections can be from my first few years of adjusting to living with a CLL severely impacted immune system. In addition to having hypogammaglobulinemia, I was also quite neutropenic, so I found I just had to limit close contact with others and take other precautions to reduce my risk of infections. I also found that my vitamin D serum level was below the lower reference range. Taking a vitamin D3 supplement and gradually improving my fitness helped considerably, but it took about 2 years to get back to close to my fitness level before my neutropenia developed.
I hope you can find some way to overcome your fatigue. I gather your specialist doesn't consider it severe enough to warrant starting treatment.
I've had back to back infections since least summer.
Antibiotics several times then steroids then more antibiotics for ongoing chest infections.
Tooth playing up since December had antibiotics still not cleared xray shows ok and so does ultrasound on neck came back ok.
Now sitting in hospital awaiting on urgent referral from March to see maxillofacial consultant.
Haematologist this week was concerned about ongoing infections so sent me for another blood test to check immunoglobulins saying if all checks came out to say ivig warranted I would have it.
Seeing haematologist in six weeks again.
Seeing surgeon re my gallstone soon and cardiologist for update on my recorder I wore over Christmas.
Also follow up with Neurologist from last year's collapse when he gave me epilepsy tablets to see if they helped.
While you could obviously really benefit from something to boost your immune system, IgG is in limited supply. There's currently a shortage in the USA and Australia imports about half its requirements. I don't know the situation in the UK, but look at the difficulty Nic has recently had getting access and she is not alone. Setting threshold IgG limits is a way of rationing limited supplies to those most needing it. Perhaps we need to encourage more blood donors?
It’s not just the number of blood donors it’s the expends process of purifying it. I can tell you that the British import ALL our IVIG because of concerns that mad cow disease which is still a thing —might—- be transmitted by it! I guess at some point that ban may be lifted and perhaps that would help the shortages.
I am on Privagen which comes from Germany, and believe we also imported it from Spain. Didn’t know it was because of the mad cow disease ! But safer I suppose.
As previously posted I saw haematologist earlier this week then maxillofacial consultant at hospital Thursday and confirmed what I knew that tooth needs to come out asap which will be done in hospital. Antibiotics will be given at same time.
This second journey as a passengerwith my wife driving the hour to each hospital has made me so tired that it's then taken up any energy I may have had for days.
I struggled to actually stay awake Thursday in the car I was was fatigued and the hospital wait was short in a nicely aired waiting room.
Yesterday I was determined to paint some fence treatment on our wooden gate and adjacent panel.
I was totally exhausted from just clearing the area of a couple items and it took me all day to paint a 6ft high gate each side plus about another 3ft panel adjacent to gate.
I had to stop as I could no longer stand up or bend my legs.
I barely had enough energy to jump in shower before slumping in lounge seat aching so much I felt sick.
I felt so good from what I'd achieved which has taken me several years to get done.
I'm awake yet again at 3am in pain and so thirsty that I've stayed up drinking tea and it's now 5.30am and although I need to door more fence treatment I probably won't have any energy for weeks.
This coming week I have my surgeon to see re looking at getting my gallstone removed that's been diagnosed over a year ago.
I have around a dozen various appointments between now and September for consultants and doctors which seems never ending.
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As for ivig, I had 6 months 2x a month. I had it for a rare autoimmune skin disorder. I do not have debilitating fatigue. I have not noticed any additional energy, nor less fatigue then when I was on it. I am going back on it for the rest of my life next week. If it does do those thing, it could take 2 or 3 months to notice. It works very subtly. I will now pay attention to to those things. Feel free to contact me on or off line for updates
Not injecting IVIG due to low IGA
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