General Medical issues thread

[coriander]

So does the pain mean that the chemo is doing its job? Good to hear the rib pain has gone, but it must be so debilitating to be in constant pain.

The way it was explained to me was that the two courses of radiation therapy were to kill the tumour within the vertebrae which would then reduce pain levels. And to be fair, my pain levels in January were 10/10 (at the time I didn't think you could be in such pain and live <g!>) and are now a 3-5/10, better in morning, worsening through day: I can manage ok with moderately high doses of Hydromorphone once daily and paracetamol osteo every eight hours plus short-acting sublingual fentanyl to counter breakthrough pain. I get a pain spike when arising from bed or chair as my back adapts to the increased load. The radiation and chemo have knocked down the myeloma which occupied 70% of my marrow. Osteoporosis and the vertebrae being now "empty shells" mean that the vertebrae continue to collapse, hence my reduced height. I'm also on a monthly bone strengthening injection.

The specialists say my pain should be gone by late February (I forgot to ask which year!).

A bone pain specialist who examined me in February said that a fractured vertebra was the most painful one to have as there is no treatment, stabilisation or immobilisation possible - and I have three.

By all accounts I have responded to the chemo very well as there is currently no evidence of any abnormalities in my blood tests (I feel well in all respects apart from the pain). I'll know much more once the battery of tests prior to the BMT are done (these will include bloods, MRI, ?xrays and bone marrow biopsy).

 

[Pushka]

The way it was explained to me was that the two courses of radiation therapy were to kill the tumour within the vertebrae which would then reduce pain levels. And to be fair, my pain levels in January were 10/10 (at the time I didn't think you could be in such pain and live <g!>) and are now a 3-5/10, better in morning, worsening through day: I can manage ok with moderately high doses of Hydromorphone q24h and paracetamol osteo q8h. I get a pain spike when arising from bed or chair as my back adapts to the increased load. The radiation and chemo have knocked down the myeloma which occupied 70% of my marrow. Osteoporosis and the vertebrae being now "empty shells" mean that the vertebrae continue to collapse, hence my reduced height. I'm also on a monthly bone strengthening injection.

The specialists say my pain should be gone by late February (I forgot to ask which year!).

A bone pain specialist who examined me in February said that a fractured vertebra was the most painful one to have as there is no treatment, stabilisation or immobilisation possible - and I have three.

By all accounts I have responded to the chemo very well as there is currently no evidence of any abnormalities in my blood tests (I feel well in all respects apart from the pain). I'll know much more once the battery of tests prior to the BMT are done (these will include bloods, MRI, ?xrays and bone marrow biopsy).

I have no idea of pain management for you but when I ruptured a disc in my lower back the pain was 10/10 but I knew eventually surgery would assist. What I did find of huge help and was recommended by the treating physio, was a lumbar brace support that took the strain off my lower back when I moved. They are large and bulky but it really did help. Kept “things together” in my back so to speak and stopped what felt like free floating and painful movement.

 

[coriander]

What I did find of huge help and was recommended by the treating physio, was a lumbar brace support that took the strain off my lower back when I moved.

My kids who work out at gym suggested a brace early on Yet my haematologist, back painologist and physio have all said that a back brace is inappropriate for my particular circumstances.

 

[Renato1]

My kids who work out at gym suggested a brace early on Yet my haematologist, back painologist and physio have all said that a back brace is inappropriate for my particular circumstances.

I don't know if this suggestion is any good for you - but if you have to sit somewhere, perhaps try sitting on a neck cushion made of little micro-beads, with the open end of the U-shape against the back of the chair. This keeps weight off the spine.

The foam neck cushions aren't much good as they compress too much.
Regards,
Renato

 

[drron]

There was a couple of posts in a TR about the side effects of Statin drugs for cholesterol lowering.This was a post by love_the_life on that thread.
"I was only going on what FM had posted earlier. She felt the symptoms were a result of Crestor. I know she has had quite a few tests to try and identify what it is."

This is one of the subjects that is prone to misinformation when using Dr.Google.Statins have had a bad name in many peoples opinion and one of the commonest is the side effects of muscle pain.Now statins certainly do cause muscle pain.The serious form though is a myopathy.In particular an HMGCR myopathy which has elevated muscle enzymes but in research centres they can also detect antibodies to the enzyme that statins work on-HMGCR.However 30% of people with an HMGCR myopathy have no history of statin use.
Also when statin trials are done the incidence of muscle aches and pains in those taking the placebo drug is up to 30%.
The problem arises when people just accept that their pains are due to statins when muscle pain is common in many diseases.I gave the example of a fellow who was told by his biochemist his pains were due to his statin so he stopped the statin.His pains continued,he decided not to have further medical follow up.he was at high risk of vascular disease and 18 months later had a heart attack.It was then it was discovered his muscle symptoms were due to MND.

If muscle pains continue well after statins have been ceased or get worse despite having stopped statins another cause should be looked for such as Polymyalgia Rheumatica or an autoimmune disease.
Other side effects can be discussed if anyone wants that.

 

[Flying mermaid]

There was a couple of posts in a TR about the side effects of Statin drugs for cholesterol lowering.This was a post by love_the_life on that thread.
"I was only going on what FM had posted earlier. She felt the symptoms were a result of Crestor. I know she has had quite a few tests to try and identify what it is."

This is one of the subjects that is prone to misinformation when using Dr.Google.Statins have had a bad name in many peoples opinion and one of the commonest is the side effects of muscle pain.Now statins certainly do cause muscle pain.The serious form though is a myopathy.In particular an HMGCR myopathy which has elevated muscle enzymes but in research centres they can also detect antibodies to the enzyme that statins work on-HMGCR.However 30% of people with an HMGCR myopathy have no history of statin use.
Also when statin trials are done the incidence of muscle aches and pains in those taking the placebo drug is up to 30%.
The problem arises when people just accept that their pains are due to statins when muscle pain is common in many diseases.I gave the example of a fellow who was told by his biochemist his pains were due to his statin so he stopped the statin.His pains continued,he decided not to have further medical follow up.he was at high risk of vascular disease and 18 months later had a heart attack.It was then it was discovered his muscle symptoms were due to MND.

If muscle pains continue well after statins have been ceased or get worse despite having stopped statins another cause should be looked for such as Polymyalgia Rheumatica or an autoimmune disease.
Other side effects can be discussed if anyone wants that.

I have responded but will delete that out of my trip report.

I have had tests for myasthenia gravis to exclude that. I have just had a bone scan and a full set of rheumatolgical bloods to see what is happening there. While I do not believe my current problems are “side effects” of Statins, I do think they are Statin induced. Statin induced PMR seems the most likely. Dr FM found a documented and well researched case of Statin induced Lupus, which reversed after some time when Statins were ceased.

I have currently had a carotid ultrasound (arteries totally normal)
Nerve conduction test
Bone scan
Every blood test that you can think of


My neurologist doesn’t believe cholesterol is a factor in my initial problems and I didn’t need to go on Crestor - pity that wasn’t worked out before my quality of life was destroyed.

 

[love_the_life]

I have responded but will delete that out of my trip report.

I have had tests for myasthenia gravis to exclude that. I have just had a bone scan and a full set of rheumatolgical bloods to see what is happening there. While I do not believe my current problems are “side effects” of Statins, I do think they are Statin induced. Statin induced PMR seems the most likely. Dr FM found a documented and well researched case of Statin induced Lupus, which reversed after some time when Statins were ceased.

I have currently had a carotid ultrasound (arteries totally normal)
Nerve conduction test
Bone scan
Every blood test that you can think of


My neurologist doesn’t believe cholesterol is a factor in my initial problems and I didn’t need to go on Crestor - pity that wasn’t worked out before my quality of life was destroyed.

In line with medicos here who have a better understanding, regardless of what caused it, are you still. having symptoms?

 

[Flying mermaid]

In line with medicos here who have a better understanding, regardless of what caused it, are you still. having symptoms?

Yes although way better than what it was - in March my arms were only half functioning. I literally couldn’t bend them and I was struggling to walk. Now walking is fine although not as fast as normal and arms are much better. I was feeling almost on top of everything before leaving Canberra, but the plane trip seemed to kick things off again, although not as bad as it was.

I have an appointment with my GP as soon as I get back and she should have the latest set of bloods and the bone scan, so might get some answers then. In the mean time eating lots of anti inflammatory stuff (berries, almonds etc) and pacing myself

 

[drron]

I would be careful eating too much plant type meals.As I said up to 30% of the particular myopathy induced by statins had never taken a statin.The common factor seemed to be an increase in intake of plant sterols.
However a little known fact-one of the first statins-lovastatin was found in mushrooms-particularly oyster mushrooms.

Drug induced lupus is in fact a different disease to lupus but shares the symptoms.A few of our older drugs caused drug induced lupus so us old timers knew about it.One of my best moments in medicine was diagnosing it in a young woman who several smart professors including a rheumatologist had missed.Even better she is a Tasmanian and occasionally I run into one of her friends and TKWIA.The treatment is always stopping the drug and occasionally a short course of steroi_s.
I am not aware of drug induced PMR.

 

[Flying mermaid]

I would be careful eating too much plant type meals.As I said up to 30% of the particular myopathy induced by statins had never taken a statin.The common factor seemed to be an increase in intake of plant sterols.
However a little known fact-one of the first statins-lovastatin was found in mushrooms-particularly oyster mushrooms.

Drug induced lupus is in fact a different disease to lupus but shares the symptoms.A few of our older drugs caused drug induced lupus so us old timers knew about it.One of my best moments in medicine was diagnosing it in a young woman who several smart professors including a rheumatologist had missed.Even better she is a Tasmanian and occasionally I run into one of her friends and TKWIA.The treatment is always stopping the drug and occasionally a short course of steroi_s.
I am not aware of drug induced PMR.

thats interesting about plant sterols - however over the last few months I have been having a lot of berries and nuts (while keeping a good balance - I don’t believe in overdoing anything) and it has been quite beneficial. All will be revealed (hopefully) once I see my GP and we have the test results. At the moment we are just guessing at PMR.

 

[Flashback]

Keep up the stock of sickbags...

Sorry, but sickbags and F seems like the ultimate oxymoron....

BTW, can't remember if I ever did update ..... I did need a sick bag (and used it well!), except they don't seem to carry sick bags on BA. Nothing in F, nothing in J. They gave me a 'waste' bag. I can absolutely tell you that they do not work well as sick bags and thank goodness I was in the bathroom which kept the splatter a lot more contained when it did burst open as it filled up ...... !

 

[Flashback]

There were no sick bags in any of the F toilets... they had to scour the plane and found nothing, so found some waste bags. They're not great, let's just say they develop holes easy.... thank goodness I had on the BA F PJs...

Oops, it appear I did.

 

[Quickstatus]

I am a very literal person and have always been told not to eat or drink anything before a blood test, so I was going into the tests without having drunk any water for 14 hours. I have read dehydration can affect your lipid results, so now I am making sure that I drink a couple of glasses of water in that 14 hour period.

The Unofficial AFF Fasting Guide

For cholesterol test no food for 12hrs.
For glucose no food for 8hr
During that time, no drinks/beverages except that plain Water anytime ok

Separately,

For surgery and tests that require fasting:
no food,cigs for 6hrs except that water,Gatorade, clear fruit juice, black coffee,black tea,bonox or other clear fluids with or without sugar are ok up till 2hr prior to surgery. Consider milk/milk substitute, alcohol as a food so none of that. Most are now saying chewing gum, sucking on lollies are ok up till 2 hrs prior.

 

[Quickstatus]

Keep up the stock of sickbags...

Sorry, but sickbags and F seems like the ultimate oxymoron....

I travel with several large size “freezer” or “ storage” ziplock bags. Generally they are the 25x25cm size approx

 

[Flying mermaid]

The Unofficial AFF Fasting Guide

For cholesterol test no food for 12hrs.
For glucose no food for 8hr
During that time, no drinks/beverages except that plain Water anytime ok

Separately,

For surgery and tests that require fasting:
no food,cigs for 6hrs except that water,Gatorade, clear fruit juice, black coffee,black tea,bonox or other clear fluids with or without sugar are ok up till 2hr prior to surgery. Consider milk/milk substitute, alcohol as a food so none of that. Most are now saying chewing gum, sucking on lollies are ok up till 2 hrs prior.

i feel really silly that I was going 14 hours with no water, but I was told years ago nothing to eat or drink, so that’s what I did. Given that water is almost the only thing I drink, nothing to drink seemed to cover that. . Oh well never too old to learn....

 

[Quickstatus]

Fasting guidelines have changed over the years. Much better these days.

As usual the caveat is that local practices might differ

Practically a 12 hr can turn into a 14 very easily. Let’s say you have a cholesterol test booked at 0900. So last meal would be a late dinner. But the next day you are delayed till 1100am for the test. Or and this is what most people do - they have dinner at usual time at 7pm and then just miss breakfast. Only difference is that these days water is allowed in morning

 

[Denali]

i feel really silly that I was going 14 hours with no water, but I was told years ago nothing to eat or drink, so that’s what I did. Given that water is almost the only thing I drink, nothing to drink seemed to cover that. . Oh well never too old to learn....

I have to drink water before blood tests as otherwise the Tech has a lot of problems tapping my veins.

 

[cove]

Yes Denali my veins need at least a litre of water prior to getting a needle to draw blood for a cholesterol test.

 

[Pushka]

I have to drink water before tests as well or else it’s hard to get bloods. I usually have five vials taken taken though as they do all the auto immune markers each time, every 6 months. And some wacko ones there. I know exactly the spot to easily take them and some wise techs listen to me and do exactly that. Other say “no, here is a good vein” which is on my right arm and I know the outcome when that happens and it’s not a good outcome for me. Some are brilliant and others are just awful. Those are the ones where I walk out with 2 patches.

Had a rheumatologist visit the other day. Has given me another script which can hopefully be filled for the meds I need for Raynauds as with travel and air conditioning, and especially this trip, to Alaska and I know I’ll have issues. I’ve already cranked out the fingerless gloves for a couple of cold days here. Thyroid markers are fine now I’m on a 200mcg dose. Huge jump from the dose I was on in my thirties.

Then I got the lecture as not long before the young lady had died on a flight into Australia and rheumatologist said most likely she had a blood clot that caused PE or stroke then looked at me and said, “Not to worry, you will be fine as long as you take your Xarelto.” (Anti coagulant). First thing I’ll be packing.

 

[RooFlyer]

For surgery and tests that require fasting:

While you are at it ... If an anaesthetic will be used? ( When procedure nowhere near the gut, no fasting?). Types of anaesthesia?