[MAT52]

Hi - just had a week in hospital with some kind of abdominal sepsis - either a UTI or Colecystitis. Will be getting my gallbladder removed in July after 15 years of not much trouble from my collection of large stones. While in hospital with acute upper abdominal pain and a temperature my CRP rose to 160 (meant to be 0-10) so I was put on IV Gentamicin 400 as well as Amoxicillin. Came home after an endoscopy on Tuesday and am fine again now apart from the odd reverberation.

While all this was happening I stopped taking the imuran that I had started a few weeks earlier at the instructions of my surgeon. He didn't know much about rheumatic conditions or this latest drug but I do so just stopped. My GP thinks that it should be fine to start again once infection has stayed away for another week as my weekly bloods were coming back fine.

Before this I had a month of flu and a heavy chest infection/ pneumonia and before that I had sickness and headaches with GI problems while on Cymbalta. It has been a pretty relentless few months health wise!

So the reason I am posting is because each time the latest infection takes hold I find the nerve pain and sensory problems seem to die away completely - apart from dizziness which comes and goes regardless. In hospital I didn't have wet legs sensation or feeling I had peed myself or night time nerve pain. Now however, it is gripping me once more in what seems to be a kind of post infection flare up.

Do people here think it's because during the period of acute and localised pain - whether in chest or stomach or head - the brain stops noticing other signals of the usual chronic pain? I find it is particularly severe in my knees and ankles just now although hands are burning too - all this much more so at night for reasons I now understand thanks to Mrs D. I wonder of these fluctuations are more common in an immune mediated small fiber sensory neuropathy?

I see the neurologist for a review/ follow up consultation next month and am trying to gather my thoughts - as he wrote in his last letter that nothing had shown up from nerve conduction, skin biopsy of calves, lumbar puncture or blood tests. So my rheumatologist decided that it must come under the banner of my RA, even though I have no visibly swollen or specifically affected joints any more. My ESR fluctuates according to the severity of the nerve pain though so I can predict it pretty accurately - last reading was a month ago at 58.

This is why I'm now trying Imuran. My suspicion is that I actually have a type of Vasculitis or sero negative Sjogrens that causes my SNSF but it would be interesting to know if others find theirs flares up and calms in this way too.

[Neuroproblem]

Originally Posted by MAT52

Hi - just had a week in hospital with some kind of abdominal sepsis - either a UTI or Colecystitis. Will be getting my gallbladder removed in July after 15 years of not much trouble from my collection of large stones. While in hospital with acute upper abdominal pain and a temperature my CRP rose to 160 (meant to be 0-10) so I was put on IV Gentamicin 400 as well as Amoxicillin. Came home after an endoscopy on Tuesday and am fine again now apart from the odd reverberation.

While all this was happening I stopped taking the imuran that I had started a few weeks earlier at the instructions of my surgeon. He didn't know much about rheumatic conditions or this latest drug but I do so just stopped. My GP thinks that it should be fine to start again once infection has stayed away for another week as my weekly bloods were coming back fine.

Before this I had a month of flu and a heavy chest infection/ pneumonia and before that I had sickness and headaches with GI problems while on Cymbalta. It has been a pretty relentless few months health wise!

So the reason I am posting is because each time the latest infection takes hold I find the nerve pain and sensory problems seem to die away completely - apart from dizziness which comes and goes regardless. In hospital I didn't have wet legs sensation or feeling I had peed myself or night time nerve pain. Now however, it is gripping me once more in what seems to be a kind of post infection flare up.

Do people here think it's because during the period of acute and localised pain - whether in chest or stomach or head - the brain stops noticing other signals of the usual chronic pain? I find it is particularly severe in my knees and ankles just now although hands are burning too - all this much more so at night for reasons I now understand thanks to Mrs D. I wonder of these fluctuations are more common in an immune mediated small fiber sensory neuropathy?

I see the neurologist for a review/ follow up consultation next month and am trying to gather my thoughts - as he wrote in his last letter that nothing had shown up from nerve conduction, skin biopsy of calves, lumbar puncture or blood tests. So my rheumatologist decided that it must come under the banner of my RA, even though I have no visibly swollen or specifically affected joints any more. My ESR fluctuates according to the severity of the nerve pain though so I can predict it pretty accurately - last reading was a month ago at 58.

This is why I'm now trying Imuran. My suspicion is that I actually have a type of Vasculitis or sero negative Sjogrens that causes my SNSF but it would be interesting to know if others find theirs flares up and calms in this way too.

Your pn disappearing while having an active Infection does have a link. But there is isn't any actual studies out there. Your immune system is probably exhausted from fighting an infection. Or it could be having an infection has an immune modifying effect. Just like how certain vir infections can trigger autoimmune diseases. It gets more complicated than this depending on the type of unfection

[MAT52]

Originally Posted by Neuroproblem

Your pn disappearing while having an active Infection does have a link. But there is isn't any actual studies out there. Your immune system is probably exhausted from fighting an infection. Or it could be having an infection has an immune modifying effect. Just like how certain vir infections can trigger autoimmune diseases. It gets more complicated than this depending on the type of unfection

Thanks Neuroporoblem. I agree with your analysis of possible reasons but I don't know why there have been no studies looking into this to date? Surely if the cause of neuropathic pain can be established then it becomes potentially treatable? So SFSN which flares according to inflammation levels with a connective tissue disease - and which diminishes when the body is fighting a serious infection - is an important clue to treating many types of neuropathic pain at source rather than simply attempting to treat the symptoms as currently happens.

I would still be very keen to see whether or not others have experienced this too.

[en bloc]

I'm not sure about the connection between infection and neuropathic pain, because it appears more people have INCREASED pain during illness, surgery, trauma, etc...any and all of these which typically cause a 'flare' of pain/symptoms. But like MrsD said, large pain or a major process going on, can mask and hide other pains, since the focus isn't on them.

But I wanted to comment on something else. Have you had your immune system tested...like IgG subclasses along with IgA, IgE, IgM, IgG totals? I ask because you seem to have a lot of infections and about 25% of those with autoimmune disease are known to also have immune deficiency. Before starting a medication like Imuran (especially after you just had pneumonia and such), one would think they would check your immune system. If not, then you should absolutely have yours checked, because medications like Imuran (immune suppressors) will make it far to easy for you to get sick...like you just did.

Unfortunately now, the test will likely be skewed because Imuran has already affected your immune system (as you well know now). But before you start it back up (if you do) you should make sure your immune system is checked for deficiency. just a thought!

[MAT52]

Originally Posted by en bloc

I'm not sure about the connection between infection and neuropathic pain, because it appears more people have INCREASED pain during illness, surgery, trauma, etc...any and all of these which typically cause a 'flare' of pain/symptoms. But like MrsD said, large pain or a major process going on, can mask and hide other pains, since the focus isn't on them.

But I wanted to comment on something else. Have you had your immune system tested...like IgG subclasses along with IgA, IgE, IgM, IgG totals? I ask because you seem to have a lot of infections and about 25% of those with autoimmune disease are known to also have immune deficiency. Before starting a medication like Imuran (especially after you just had pneumonia and such), one would think they would check your immune system. If not, then you should absolutely have yours checked, because medications like Imuran (immune suppressors) will make it far to easy for you to get sick...like you just did.

Unfortunately now, the test will likely be skewed because Imuran has already affected your immune system (as you well know now). But before you start it back up (if you do) you should make sure your immune system is checked for deficiency. just a thought!

Thanks. Well it's a complex area of course. I had all my autoantibodies checked by my neurologist in January I think - and all were either negative or normal. The only things which flag up for me is that I have always had a low positive rheumatoid factor and a raised to high CRP and ESR for the past four years. Otherwise zilch.

My GP and rheumatologist don't believe that the Imuran is responsible for either infection because the chest infection came along when I had been off immunesuppressant meds for 9 months and this recent sepsis only occurred just over two weeks into the Imuran - after weekly monitoring had shown no lowering of white blood cells and normal liver function tests.

The infection showed up through excruciating upper abdominal pain, blood and protein in urine and soaring CRP plus high or low leukocytes and blood cells - which normalised after a few days.

So the Imuran was stopped because it would have not been right to continue taking it with a serious infection - but it definitely didn't cause the infection to begin with. I do have gallstones but an ultrasound scan showed that they weren't travelling anywhere and my gallbladder didn't seem to be more than mildly swollen so the surgeon felt it must be a UTI with sepsis but kept calling me "mystery girl" which annoyed me because I'm sick of being mysterious and aged 52 I don't feel very girl-like!

The nerve pain still hasn't returned full force although it is bad again in the night and my teeth and jaw hurt again which I feel could well be sinuses because I was spitting up blood clots for 24 hours after singing in my choir on Thursday night.

The nerve pain could never compete with the acute abdominal pain - not even a fractured joint could - but I still don't feel very well at all in any department? I have one amoxicillin left to take tonight and then I'm done with antibiotics so a bit apprehensive about what awaits around the corner next!

I just feel it must all be part of the same thing rather than lots of different things as these medics keep assuming.

[baba222]

Originally Posted by MAT52

Hi - just had a week in hospital with some kind of abdominal sepsis - either a UTI or Colecystitis. Will be getting my gallbladder removed in July after 15 years of not much trouble from my collection of large stones. While in hospital with acute upper abdominal pain and a temperature my CRP rose to 160 (meant to be 0-10) so I was put on IV Gentamicin 400 as well as Amoxicillin. Came home after an endoscopy on Tuesday and am fine again now apart from the odd reverberation.

While all this was happening I stopped taking the imuran that I had started a few weeks earlier at the instructions of my surgeon. He didn't know much about rheumatic conditions or this latest drug but I do so just stopped. My GP thinks that it should be fine to start again once infection has stayed away for another week as my weekly bloods were coming back fine.

Before this I had a month of flu and a heavy chest infection/ pneumonia and before that I had sickness and headaches with GI problems while on Cymbalta. It has been a pretty relentless few months health wise!

So the reason I am posting is because each time the latest infection takes hold I find the nerve pain and sensory problems seem to die away completely - apart from dizziness which comes and goes regardless. In hospital I didn't have wet legs sensation or feeling I had peed myself or night time nerve pain. Now however, it is gripping me once more in what seems to be a kind of post infection flare up.

Do people here think it's because during the period of acute and localised pain - whether in chest or stomach or head - the brain stops noticing other signals of the usual chronic pain? I find it is particularly severe in my knees and ankles just now although hands are burning too - all this much more so at night for reasons I now understand thanks to Mrs D. I wonder of these fluctuations are more common in an immune mediated small fiber sensory neuropathy?

I see the neurologist for a review/ follow up consultation next month and am trying to gather my thoughts - as he wrote in his last letter that nothing had shown up from nerve conduction, skin biopsy of calves, lumbar puncture or blood tests. So my rheumatologist decided that it must come under the banner of my RA, even though I have no visibly swollen or specifically affected joints any more. My ESR fluctuates according to the severity of the nerve pain though so I can predict it pretty accurately - last reading was a month ago at 58.

This is why I'm now trying Imuran. My suspicion is that I actually have a type of Vasculitis or sero negative Sjogrens that causes my SNSF but it would be interesting to know if others find theirs flares up and calms in this way too.

Do you get antibiotics along with decreased or disappearing symptoms?


I noticed that you have antibio

[mrsD]

Well... looks like you probably had fluoroquinolones administered this time?

If so, the PN is going to likely increase. I hope not for your sake.

But I do think large pain, does hide smaller pains. I have had experience with that. I fell several years ago, on my left knee.
It hurt like the dickens! But I never noticed the damage to my tendons in the hip, which flared up just as the knee healed.

[MAT52]

Originally Posted by mrsD

Well... looks like you probably had fluoroquinolones administered this time?

If so, the PN is going to likely increase. I hope not for your sake.

But I do think large pain, does hide smaller pains. I have had experience with that. I fell several years ago, on my left knee.
It hurt like the dickens! But I never noticed the damage to my tendons in the hip, which flared up just as the knee healed.

I just looked up to see whether the IV Gentamicin is a fluoroquinolone and I think it's of the same toxicity perhaps but not sure if it is same family. I was told it was the most serious antibiotic our hospital administer and I had three doses over three consecutive nights and blood tests the next morning to check for toxicity and to make sure my CRP was coming down as the stomach pain eased.

You don't really query anyone about drugs when in terrible pain and when doctors are muttering about septacemia!

So far the neuropathic pain is just doing its usual thing and making my feet toes icy and my legs feel rather wet and the a gripping stocking glove distribution of pain when lying still at night which I'm well used to now after over two years of it.

I'm apprehensive that from tomorrow onwards it will return more fiercely once I'm off the amoxicillin. I've been on this for over a week now and my last flare up came once I was off the two antibiotics for chest infection in March.

I just feel there is more to all this than meets the doctors' eyes. No point in attempting to explain any of this to the when surgeon I see again on Thursday but I would like to be able to talk it through with the GP and the neurologist who seem a bit more switched on where immunology is concerned.

The thing that bugs me is that I look after myself so well with diet and supplements and exercise and I just feel that this thing - whatever it is - is defeating me a bit just now?

[mrsD]

Gentamycin is heavy duty but the main nasty side effect is on the nerves in the ear, and not everyone gets that.

I really don't think it is normal for people to spit up blood after singing. (and your nose bleeds concern me too).

Have you had your platelets checked?

I can certainly understand how you feel though...being so ill is very stressful and frightening. I would be a mess if it were me!
So do baby yourself so you can heal.

I was wondering where you were... but I am concerned that you were so ill and in the hospital!

[en bloc]

I think you misunderstood what I was saying. I was talking about your regular immune system, NOT autoantibodies. IgG is the main part of your normal immune system, to fight infections. It has 4 subclasses (just called, 1,2,3,4). IgE, IgA, IgM are other important parts of your immune system.

I was talking about an immune deficiency, not autoimmune process. As in, you not making enough regular antibodies to fight infections. Autoimmune is where your antibodies attack yourself. You may have a problem making normal antibodies, as for why you keep getting sick to begin with. Then you get a drug like Imuran that suppresses your immune system making matters worse.

25% of people with autoimmune disease also have immune deficiency and don't make enough normal antibodies. You should have this checked before receiving any more immune suppressor medications, like Imuran.