My energy levels are at an all time low. I'm back on a high dose on prednisone because of a possible (but mild) relapse of BOOP. (However never one to sit around, I'm still working flat stick and every day is booked with various tasks)
Basically my immune system is in over-drive and there is an inflammatory response in my lungs that causes the minute air passages to block up. By treating with a corticosteroid such as prednisone, my immune system is suppressed and the inflammation reduced.
The steroids have massive side effects, both short and long term. Thinning of the skin, fat build-up in the face and stomach. higher risk of glaucoma and diabetes, bone density loss and possible bone necrosis in the hips etc over a long period of use.
So as you can imagine the doctors want to get me off prednisone if possible. Trouble is that it would appear that every time I go below 20mg a day I go into BOOP relapse. So last month we tried Azathioprine, an immunosuppressive drug often used to avoid rejection in transplants. The problem was that this and other similar drugs are also myelosuppressive ie they damage bone marrow (where blood is made) , something I very little off to start with.
So after my blood counts plummeted following a week long trial of the drug it was decided I would have to stay on prednisone indefinitely as I wouldn't survive very long with no marrow!
Not one to give in lightly, That got me on a hunt for a drug/ treatment regime that was not going to wipe out my bone marrow. I found a medical paper that mentioned a study in 1995 by a group of Japanese doctors who had successfully treated six BOOP patients with a low dose of the antibiotic Erythromycin.
Apparently there is an anti-inflammatory side effect to the drug even in relatively low doses.
I printed off just one paragraph of the study, just enough to get the haematologist interested enough to look into it. He accepted it just might work and has promised to discuss it with his respiratory colleagues and phone me back.
If they accept my treatment plan, and so far I can't see what we have to loose with no other options, I will be over the moon!
Imagine that. Interrupting the senior haematologist as he tells you there are no drugs that will treat your disease without killing you, and I say while passing him my fndings "have you considered Erythromycin ?" and he pauses, reads my document and say .."that might just work". Priceless!!.
Fingers crossed for the go ahead and positive outcome. I'm feeling pretty darn proud of myself right now. So much so that I'm about to celebrate with a Bourbon and Coke. Something I haven't had in a number of years. Tomorrow I'm in for a blood transfusion anyway so it's not like I can do any permanent harm! :)
Cheers! ...Ron
Thursday, March 10, 2011
Monday, February 28, 2011
Better by the day.
This is my fourth day on 60mg of prednisone for relapsed BOOP.
My resting heart-rate is slowly coming down. It's no longer screaming along at 125 beats per minute.
Sitting here at my computer it seems to vary between 82 and 105, I'm guessing that it will continue to slowly drop it's window down to something approaching 70-90 over the coming week as my blood levels approach normal again.
I can only assume that my haemoglobin levels are are rising to normal as my heart-rate drops.
I might get a blood test done this week just to confirm.
The only other problem I have to work on now is this darn itch. It's keeping me awake at night and even invades my dreams. It torments me in both my waking and sleeping states.
I've spent countless hours researching what could be causing it and it comes down to four possible things. All are long shots..
1: Anemia: Long shot, as I don't think I've been anemic for as long as I've had the itch.
2: Type 2 Diabetes. Possible due to the prednisone and tests that show I'm in the danger zone. But no other diabetes symptoms.
3: Long term use of prednisone causing a rebound effect and skin damage. Long shot. Only vague anecdotal evidence to support the theory. Itch is unaffected by prednisone which is the standard treatment for skin itch. (Pruritus)
4: Hodgkins Lymphoma. Classic symptom of HL seen in around 30% of patients. However I have no other HL symptoms. However I do have enlarged but dormant lymph nodes in my pelvis. It doesn't feel like the typical HL itch and it seems to respond to various lotions, potions and creams at a topical level.
There is just one person that claims to have found a remedy for the intractable itching from Hodgkins Lymphoma. Imagine that.. millions of useless links in Google and just by chance I found the single paragraph where a sufferer posted about her success after making a tea from the flower of the Tri-colour Viola flower. I've ordered a quality from a place in the US and shall see if it works at a systemic level. Nothing ventured...
...Ron
My resting heart-rate is slowly coming down. It's no longer screaming along at 125 beats per minute.
Sitting here at my computer it seems to vary between 82 and 105, I'm guessing that it will continue to slowly drop it's window down to something approaching 70-90 over the coming week as my blood levels approach normal again.
I can only assume that my haemoglobin levels are are rising to normal as my heart-rate drops.
I might get a blood test done this week just to confirm.
The only other problem I have to work on now is this darn itch. It's keeping me awake at night and even invades my dreams. It torments me in both my waking and sleeping states.
I've spent countless hours researching what could be causing it and it comes down to four possible things. All are long shots..
1: Anemia: Long shot, as I don't think I've been anemic for as long as I've had the itch.
2: Type 2 Diabetes. Possible due to the prednisone and tests that show I'm in the danger zone. But no other diabetes symptoms.
3: Long term use of prednisone causing a rebound effect and skin damage. Long shot. Only vague anecdotal evidence to support the theory. Itch is unaffected by prednisone which is the standard treatment for skin itch. (Pruritus)
4: Hodgkins Lymphoma. Classic symptom of HL seen in around 30% of patients. However I have no other HL symptoms. However I do have enlarged but dormant lymph nodes in my pelvis. It doesn't feel like the typical HL itch and it seems to respond to various lotions, potions and creams at a topical level.
There is just one person that claims to have found a remedy for the intractable itching from Hodgkins Lymphoma. Imagine that.. millions of useless links in Google and just by chance I found the single paragraph where a sufferer posted about her success after making a tea from the flower of the Tri-colour Viola flower. I've ordered a quality from a place in the US and shall see if it works at a systemic level. Nothing ventured...
...Ron
Friday, February 25, 2011
The return of the BOOP.
I don't think I've ever been so happy to be so sick.
Once I'd been informed that I had macrocytic anemia and that it had been brewing for several weeks, a lot of things started to make sense. The tachycardia, the fever, the fatigue. All are symptoms of lung disease, but together and without an increase in my white cell counts, they are not typical of lymphoma. Phew!
I've just returned from a visit with my #2 GP Kyra Jones and although she is cautious about my decision to run with 60mg of prednisone until I see my haematologist on March 10th, she didn't exactly say no either. (She freely admits that there's not a lot of people that know much about BOOP, least of all her.)
There's no point in trying to treat a BOOP relapse with 40mg, I tried that last month and it didn't work. I wanted to go with 60mg then but the respiratory doctor insisted on 40mg. I think had he looked at the blood work he would not have gone down that route.
Oh well... It's sorted now. I should learn to go with my gut feelings. I knew I had relapsed in January, Knew I should have gone with 60mg.. but at least it's not lymphoma, and my marrow is probably fine.
I'll get my strength back over the next few weeks and then I can start back on the path to weening off pred all over again.
At least it hasn't ended with me in hospital like it did last time no one would listen.
Once I'd been informed that I had macrocytic anemia and that it had been brewing for several weeks, a lot of things started to make sense. The tachycardia, the fever, the fatigue. All are symptoms of lung disease, but together and without an increase in my white cell counts, they are not typical of lymphoma. Phew!
I've just returned from a visit with my #2 GP Kyra Jones and although she is cautious about my decision to run with 60mg of prednisone until I see my haematologist on March 10th, she didn't exactly say no either. (She freely admits that there's not a lot of people that know much about BOOP, least of all her.)
There's no point in trying to treat a BOOP relapse with 40mg, I tried that last month and it didn't work. I wanted to go with 60mg then but the respiratory doctor insisted on 40mg. I think had he looked at the blood work he would not have gone down that route.
Oh well... It's sorted now. I should learn to go with my gut feelings. I knew I had relapsed in January, Knew I should have gone with 60mg.. but at least it's not lymphoma, and my marrow is probably fine.
I'll get my strength back over the next few weeks and then I can start back on the path to weening off pred all over again.
At least it hasn't ended with me in hospital like it did last time no one would listen.
Thursday, February 24, 2011
Back to the Doctor's
Woke this morning with a racing heart. 130bpm just sitting at my desk. A quick check of my temperature revealed that I was running a low grade fever of 38C. Any form of movement had me breaking out in a sweat and my heart rate soaring to a galloping 160. Bugger!
I phoned Kyra and left a message, she phoned back straight away. She said that the low haemoglobin had been there since before I started on the Azathioprine. Double bugger!! That explained the lack of energy over the Xmas break. Why on earth had my respiratory doctor not noted the low count when I saw him a few weeks back?? Surely the lung diffusion rates were meaningless unless he considered them alongside my blood counts and my blood's ability to actually absorb oxygen? Grrr.
I've got another appointment tomorrow with Kyra for a check over. Could be lung infection.. I live in hope.
It would appear that if it were Lymphoma related I'd expect to see an increase in my white cell count, the white cells crowd out the red cells and cause anemia. I don't think that's the case. Another possibility would be bone marrow infiltration of lymphoma... A bone marrow biopsy would show that.. again I have my doubts but will have to wait and see.
Meantime I've been told to stop the Azathioprine immediately (which is what I wanted when I phoned Kyra) and we shall look at the blood counts etc again when I see the Haematologist on March 10th.
I'll have to crank the prednisone back up. But I guess it's better the devil you know...
Annoyingly I have heaps of work booked for next week. I don't like to tell people I'm too sick to fix their cars because often that's the last you hear from them. Might be time to hire a spanner-hand to do the work I can't do (which is almost every thing right now).
Another post after tomorrow's GP visit. :)
I phoned Kyra and left a message, she phoned back straight away. She said that the low haemoglobin had been there since before I started on the Azathioprine. Double bugger!! That explained the lack of energy over the Xmas break. Why on earth had my respiratory doctor not noted the low count when I saw him a few weeks back?? Surely the lung diffusion rates were meaningless unless he considered them alongside my blood counts and my blood's ability to actually absorb oxygen? Grrr.
I've got another appointment tomorrow with Kyra for a check over. Could be lung infection.. I live in hope.
It would appear that if it were Lymphoma related I'd expect to see an increase in my white cell count, the white cells crowd out the red cells and cause anemia. I don't think that's the case. Another possibility would be bone marrow infiltration of lymphoma... A bone marrow biopsy would show that.. again I have my doubts but will have to wait and see.
Meantime I've been told to stop the Azathioprine immediately (which is what I wanted when I phoned Kyra) and we shall look at the blood counts etc again when I see the Haematologist on March 10th.
I'll have to crank the prednisone back up. But I guess it's better the devil you know...
Annoyingly I have heaps of work booked for next week. I don't like to tell people I'm too sick to fix their cars because often that's the last you hear from them. Might be time to hire a spanner-hand to do the work I can't do (which is almost every thing right now).
Another post after tomorrow's GP visit. :)
Wednesday, February 23, 2011
Hmmm..
It almost feels wrong to be posting about my state of health at a time of such devastation in Christchurch. My grumbling aches and pains are nothing compared to pain felt by those who have lived through such a terrifying experience or who have been injured or lost loved ones.
My heart goes out to them.
I did however receive a phone call last night from my #2 GP, Kyra Jones. She fills in for my usual GP, Dr Stu, on the days he has off. Kyra is very thorough and seems to enjoy her work. She usually phones in the evening following a visit and updates me with test results and her thoughts on what may be ailing me.
Last night she called to say that my blood tests had shown that almost everything was normal (relative to me) except my haemoglobin count which was well down at 95, when normal range is 135-170.
This would explain the lack of energy and fatigue. There is just not enough oxygen getting into my blood. It also explain the tachycardia (rapid heart rate). However I've never looked at the haemoglobin levels in my previous blood tests so I don't know if this a new thing brought on by the new Azathioprine drug which is myelosuppressive (damaging to bone marrow) or it's a result of a steady decline in the overall state of my already fragile bone marrow.
I've always know my bone marrow is shot (read F&#ked), it never recovered after my first lick of chemo back in 2005. Add to that dozens of sessions of ABVD chemo, the salvage chemo, the conditioning chemo before the stem cell transplant, the high dose chemo for the STC and you can see why my platelets never get much above 50 (normal 150-400) these days. However if the low haemoglobin count is because of Hodgkin's lymphoma infiltration. There's nothing we can do to fix that.
So fingers crossed that the fatigue is just a fact of life, that the low blood count is a new thing and can be fixed with regular transfusions and or drugs until I'm off the immunosuppressive medication in a year or so. I've emailed Kyra asking her to review the last few blood tests and get back to me.
My heart goes out to them.
I did however receive a phone call last night from my #2 GP, Kyra Jones. She fills in for my usual GP, Dr Stu, on the days he has off. Kyra is very thorough and seems to enjoy her work. She usually phones in the evening following a visit and updates me with test results and her thoughts on what may be ailing me.
Last night she called to say that my blood tests had shown that almost everything was normal (relative to me) except my haemoglobin count which was well down at 95, when normal range is 135-170.
This would explain the lack of energy and fatigue. There is just not enough oxygen getting into my blood. It also explain the tachycardia (rapid heart rate). However I've never looked at the haemoglobin levels in my previous blood tests so I don't know if this a new thing brought on by the new Azathioprine drug which is myelosuppressive (damaging to bone marrow) or it's a result of a steady decline in the overall state of my already fragile bone marrow.
I've always know my bone marrow is shot (read F&#ked), it never recovered after my first lick of chemo back in 2005. Add to that dozens of sessions of ABVD chemo, the salvage chemo, the conditioning chemo before the stem cell transplant, the high dose chemo for the STC and you can see why my platelets never get much above 50 (normal 150-400) these days. However if the low haemoglobin count is because of Hodgkin's lymphoma infiltration. There's nothing we can do to fix that.
So fingers crossed that the fatigue is just a fact of life, that the low blood count is a new thing and can be fixed with regular transfusions and or drugs until I'm off the immunosuppressive medication in a year or so. I've emailed Kyra asking her to review the last few blood tests and get back to me.
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