CVID and fatigue

[bob]

I am IgG1&3deficient and have specific antibody deficiencies. To keep my sinus and chest infections under control I have IV IgG weekly, which works most of the time. Otherwise it is IV antibiotics, as I am now producing bugs resistant to most tablet antibiotics.

So to get to the point, I also suffer a high level of fatigue, and this has been put down to a low level of constant infection triggering the various immune system messengers which cause fatigue, temperature problems, painful muscles etc . My fatigue does fluctuate from day to day.

Also to be clear, I am advised by the Immunologists, this is not chronic fatigue syndrome as CFS and ME cannot be diagnosed when there are infections about.

I did write regularly on the old PIA discussion board on the subject of fatigue and I am also aware that the PIA was conducting a survey with Dr Amolac Bansal on the number of PID patients with fatigue, I think he referred to QOL impact ( quality of life).

So, does anyone know what happened to the PIA study, has it been published?
Also do any of you who suffer constant fatigue like I do?

I also tried to get the PIA to support additional heating allowances for those PID patients who needed it, ( I feel the cold and we have large heating bills living in Scotland). I suggested that the PIA might want to join the cancer charities who were attempting to get heating allowance for their members/patients, but I am not aware of any progress before the PIA folded.
Just to complete the picture, I retired from work in my mid 50s. Because of constant breakthrough infections and fatigue.

Any comments or updates??
Bob

[slf]

Hi Bob
I cant tell you about the research projects although I suspect they went with the PIA,I do remember as i filled in a questionaire,as the subject of fatigue is a sore subject for me too!
In my case i associate it with IVIG,before receiving that I had numerous infections (I have CVIhe D) which have virtually gone,great,but I found after the first 6 months I was becoming uncontrollably tired,at first during infusions,and then for several days after.
The finishing touch,ending my working days(mid sixties)was finding myself unable to continue working,due to sudden random attacks of the fatigue(wish there was another to describe it)stopping me in my tracks almost unable to speak,let alone work. no medical explanation has ever been found,lots of tests,no meaningful results.
So sorry not much help,and if this is wandering and incoherent it's because today was my IVIG day.
Steve

[anilla]

fatigue is my main symptom right now. well, that and pain. i don't understand how doctors seem so oblivious to this issue with us PID patients. I read a lot all around the internet-- everywhere I go, people with PIDs suffer from some level of fatigue. The first immunologist i ever saw (sadly, he retired shortly after I started this whole thing) told me "of course you're tired. it's like your body is climbing up stairs all day, every day. people with normal immune systems walk along flat roads. you climb stairs."

[bob]

Yes, I like your 'picture' of Climbing stairs constantly as a way of expressing the fatigue problems of PIDs.......I still cannot understand why some of the medical profession are reluctant to acknowledge the fatigue side of immune deficiencies, after all fatigue is a recognised problem with many other medical conditions, such as MS, cancer, rheumatoid arthritis etc etc which all involve the immune system to some degree.
I had hoped that when the PIA did the fatigue and QOL (quality of life) survey, it may be a trigger for further research into PID fatigue, but it looks as if the momentum (or funding?) of that study may have been lost with the closure of the PIA.
Bob

[alittlebean]

Anilla, that's such a great way to describe it! Love it, so true!
Louise

[bob]

On the subject of CVID and Fatigue, has anyone with these problems ever been prescribed medication for the fatigue, such as Modafinil or steroids or Ritilin?......it seems that while there are many trials to assess the effect of these drugs on the fatigue associated with other chronic illnesses, the use of these drugs to help CVID fatigue is very restricted and medics in the UK are very reluctant to offer them.
Bob

[s162216]

Bob, none of those drugs mentioned above are actually approved officially for fatigue of any sort in Britain or the USA (except in some cases to keep workers in high risk jobs alert) and if someone is prescribed them for it for any illness, the responsibility rests solely on the shoulders of the prescriber if there are any serious side effects, which could include losing their licence to practise.

There have been trials yes for some conditions such as MS where potentially positive effects have been observed, but Modafinil (which is actually closely related to amphetamine) and Ritalin for instance will more likely cause more bad effects than good if used long term as they affects several major neurotransmitters including in Modafinil's case; they don't solve the fatigue, they just mask it so once their stopped its likely it will just return. With steroids, fatigue itself is a common side effect and the potential for serious side effects is high with systemic steroids that would be necessary.

Much more research is needed before drugs like this can be readily offered for fatigue as no one really knows what they might do.

Sam

[bob]

Sorry, but you are actually breaking our own rules, do not make such direct comments about these drugs as a non professonal. There are many trials of these drugs for fatigue, published in medical journals, so unless you are qualified do not make such comments. I simply asked if anyone had been prescribed these drugs.
Not impressed
Bob

[bamber]

Hi bob,

I have been given short courses of steroids for breathing difficulties. These work very well and usually too - have an energy boosting effect - also can affect my mood as I have a mood disorder. So I have to be careful and be aware of it. Even for breathing difficulties they often tell me - I can't take then for long periods of time- due to softening of bones etc and even suppressing my immune system!

Fatigue is awful and I remember the PIA asking about it. Fortunately for me - since I gave up work through ill health it improved slightly due to having chances to rest more. As I do more it is gets harder and I have two kids one only 10 and the other nearly 18. So have to be up and out with the younger one at least.

I think the replacement therapy - I have now subcut once a week helps me as my levels don't drop so much- as over three weeks or 4! Not sure how you have yours- you have probably said. I am sorry if not much help.

Maybe I can share this too. Due to the mental health issues I have had I have antidepressants and they have been known according to my doc to help fatigue as it lifts your mood? I am not saying what you have is depression related - I know its physical - believe me- but just a thought!

Hugs Bamber

[glowing]

Hi Bob.
Like Bamber I had short courses of steroids over ten or so years sometimes with only two weeks in between as my breathing was bad each time they stopped. The first night each new course began I knew I would be awake all night bouncing off the walls with energy. These courses grew longer and more frequent over ten years and badly damaged my skin so that I suffered many injuries. Where they helped my breathing and energy levels the side effects became unbearable as I felt constantly shaky and nervy and couldn't sit still, plus I did my husbands head in by talking too much. ;D I was glad when I was diagnosed with cvid as the treatment keeps me well and I just get plenty of rest now. I sometimes get down because I'm too tired to bother with anything but to me that's better than taking steroids.
Wishing you well.
Glowing

[john]

hi bob,
i know from our many shared posts on the old pia forum that fatigue is a massive drawback to your quality of life as a cvid patient, as indeed it is to mine. i remember you talking of vitamin b12 injections and how that helped, but my immo has always said i don't need that, but offers no substitute.
i'm sure that if there was something out there that we could take that would safely alleviate the constant tiredness she would have prescribed it, after all, i ALWAYS tell her at EVERY consultation that i'm tired!!
my only way out is to pace myself and conserve my dwindling energy stocks for when i really need them, and this is what i tell my clinic co-patients when they too tell me that they're tired. i also drink a massive amount of coffee, probably not a good idea but if often gets me going!!
i think that sam is a great resource to this forum as he is currently studying pharmacology, and can therefore access, read and understand data about medicines that most of us can't. his willingness to explain in words i can understand is a great help to me.
i really hope that an answer to our fatigue, joint pains and (in my case) constant diarrhoea can soon be found, because sometimes this pid business can really get me down!
take care - john

[s162216]

Hi Bob,

As John mentioned above, I am in the final year of a Bsc Pharmacology degree and as so I have studied and have had lectures about the inner workings and effects of Central Nervous System (CNS) stimulants such as those mentioned above and the information I gave was based on what is available in scientific journals, textbooks and lecture material which I can access.

There has actually been very few studies conducted about the use of CNS stimulants in fatigue (most are about conditions such as narcolepsy) and of these, all were with only small groups of patients suffering fatigue for clinical reasons, sometimes without control groups and not in the long term, all of these factors are why I said that in both mine and the authors belief, more research was needed before their use in fatigue. Some studies have shown a significant difference in fatigue state before and after, but unfortunately others when compared with placebo or standard treatment control groups have shown no significant effect. Because fatigue is not exactly something that is directly measurable and relies on patient 'feelings', this data may or may not be accurate currently until larger studies with controls can take place.

Methyphenidate (Ritalin) for instance is well known for causing extra-pyramidal (shaking etc of limbs, similar to Parkingson's disease) side effects in a lot of people if taken long term and in fact in the British National Formulary, it specifically says: "CNS stimulants... should not be used to treat depression, obesity, senility, or for relief of fatigue". There are also issues with dependence and the fatigue could actually worsen once the drugs are stopped.

I do realise that you are suffering badly from fatigue and want something to gain some relief from it, but I was just giving an answer based on the current facts; I apologise if you feel that I was out of line but what I wrote was not specifically medical advice as I neither advocated or said not to take these drugs and was able to give information that I have learnt from both professional scientists and peer reviewed journals.

I hope that your able to gain some relief from your fatigue soon and that your well,

Regards,

Sam

[bob]

Sam, many thanks for your reply. I have spent much of my time since retiring due to PID health problems investigating these issues, and as a science graduate and chartered engineer with an organic chemistry background, the many papers make interesting reading. I am however aware of UK and US trials of a number of drugs, including those I mentioned, to see if they help fatigue, but the outcome has been variable. So my question was aimed at seeing if any of our readers had been involved in these trials as I would like to hear how they found the drugs, as the side effects are a problem.
As you say there is not much joined-up research across all the fatigue problems of chronic illness, however perhaps it could be encouraged. I have talked to a number of academic immunologists (as distinct from clinical ones) and consultants from other fields, whose patients suffer fatigue, on this topic, but with no easy way magic cure.
Of interest I am sure you have read the paper from Norway about the use of a specific drug to cause B cell depletion as they found by chance that this had a positive effect on Chronic fatigue syndrome.......somewhere in all of that must be a link to the fatigue of all the other illnesses, including PID problems. I am more than happy to share these papers and my thoughts with you, perhaps off-line.
Many thanks
Bob

[anilla]

I have been prescribed modafinil for sleepiness/fatigue. the insurance co. fought it at first, but relented in the end. it was a psychiatrist prescribing, though, that might have to do with it.

same doc gave me ritalin to try before and it made me feel all shaky. after that, we tried modafinil which worked without side effects. i didn't become dependent. i pretty much take them when i know it's going to be one of those exhausted-and-so-much-to-do days.

[bob]

Anilla,
Many thanks for sharing your experience with these medicines, I am encouraged to hear how you use Modafinil as I have often wished there was something that could help on the very bad days. These are usually days when, because of some family activity I need to feel good, rather than totally fatigued.
Thanks again
Bob

[john]

hi anila,
you talk about the insurance company here.
are you in the uk or the usa?
pleased to welcome you to our forum!!
take care - john

[anilla]

i'm in the US. Foggy San Francisco.

thanks for the welcome.

[liz2mac]

As some of you know, fatigue has been a major problem for me. It was discovered last year that I had high calcium levels, low vitamin D levels and, eventually a diagnosis of hyperparathyroidism was made. In March I had a parathyroidectomy and my energy levels are very much better. Now, I am not in any way suggesting that everyone has this, however, I really had to fight for a diagnosis and final treatment as some medics (other than my GP and Immunologist) wanted to put my symptoms all down to CVID. It also emerged that there is an age related cut off point for doing a pathyroidectomy as the only reason they do this is to prevent bone loss and associated osteoparosis. As someone else here has written, it is impossible to define exhaustion in any medical sense. However, it was the exhaustion that was making my life unbearable. I would urge all of you with exhaustion to ask your immunologists to do blood tests to rule out hyperparathyroidism. If you are then found to have this, then fight for a referral to a surgical endocrinologist who specialises in this. We have enough to cope with dealing with CVID and all other issues need to be dealt with appropriately.
It is true though that CVID itself brings exhaustion with it. I'd be very reluctant to medicate it though as all drugs seem to have side effects that cause new problems. Has anyone found any relief from vitamin or herbal remedies?
Bob, I'm so sad that you too lost your career through all of this. However, if we can only pool our talents, we should be able to make life easier for us all. What did we all do before the internet ?
Liz

[bob]

Liz, thanks for the info on your fatigue and it is interesting that your perseverance resulted in a diagnosis. In my case I found that the consultants were even reluctant to acknowledge fatigue as an issue, however in the end they consider it to be part of the on -going background infection.....constantly triggering the immune system messengers, which cause fatigue, temperature control problems and painful muscles.
So, I have tried B12 injections, even with a normal B12 level and this gave some improvement for a short period, but the sceptics just say it was the placebo effect and not a direct effect. Repeating the B12 course has had no obvious effect. However, I have had an interesting effect, now repeated twice, where the flu innoculation caused me to feel much better, in terms of fatigue, for a few days. I guess this is on two occassions out of say ten. I have spoken to many people about this effect, within the medical world, both clinical and academic and all that can be concluded is an odd effect due to the adjuvant (which is an additive to the vaccine to ensure a better response from the immune system and is in most vaccines) Also in the late 1800's trying to trigger the body to fight an illness by introducing a foreign substance was a reasonably successful technique, but that was then!
So enough of my story, does anyone experience anything similar?

Regarding herbs, I was recommended to try Ginsing, but with no effect, and have not tried anything else in that area.

Question is, if fatigue is a real issue for a large number of PID patients, then can we influence research plans to address this problem?.......fatigue is experienced by many people with chronic conditions such as MS, rheumatoid arthritis,cancer, etc etc so It must be a good area for joined-up research.
Bob

[beckag87]

Hi all,

I'm quite literally exhausted and have slept most of the last month - in between going in and out of hospital like a yo-yo for IV antibiotics. Last week, my Immunologist and my 'Positive Health Strategist' (Consultant Psychologist) both diagnosed me with Chronic Fatigue (CFIDS). I don't know much about this yet but I have been prescribed rest, a weekly/daily plan and reading as well as not taking on too much work and 'learning to be kind to myself and my body;.

I haven't experience this much before the last month but have literally been laid out and incapable of doing very much. I am seeing the Immunologist next month but I have no idea how this will improve. Feeling ok in spirits but just exhausted and want to be useful again! This all seemed to start around the time that I swapped from IVIG to subcut. The home infusions are going well but they just don't be seeing to have much of an effect and if anything I feel much worse in terms of increased infections and fatigue.

Sorry for the rant - I'm just a little confused with all of the tiredness and everything aches! It's also making it hard to deal with my other health conditions. I hope that you all feel better and stronger very soon.

Becks