Good News!

I know, it's hard to believe, isn't it? Well, I have managed, with the exception of today, to get the dose of Methylprednisolone down to 1 tab a day! I felt so relieved when I woke up yesterday without an increase in inflammation after reducing the dose. Of course, the lower the dose, the better. I also woke up yesterday to an increase in energy. Now that fluctuations in energy and inflammation are coinciding, I am beginning to trust my doctor's opinion on the role of steroids in managing this recurrence of the infection. 

As I may have explained in previous posts, my immune system isn't fighting the infection properly (big surprise!). It's not that my immune system isn't strong enough to fight it; it's that it's reacting too strongly. Basically, it is responding inefficiently to the virus and creating unproductive inflammation. So, instead of using all available resources to reduce the viral load, like it should be doing, my immune system is allocating much of its resources to producing unnecessary inflammation. In my case, it causes Hyperparesthesia, or exceptionally heightened sensitivity to touch. It's much like what happens when my immune system is fighting a bacterial infection, like Lyme, and my joints become incredibly inflammed. For me, and many other patients, when my immune system tries to fight this viral infection, it causes Hyperparesthesia. It can be excruciatingly painful. When it's bad, my skin hurts so badly that clothes, showering, and even lying in bed are all incredibly painful.

That is where steroids come in. My initial concern was that steroids would suppress my immune system. As my doctor explained, that is actually a good thing in this case. My immune system is actually over-reacting to the virus and essentially wasting resources on this unnecessary, unproductive inflammation. That is why he prescribed an anti-viral and steroids to be taken together for roughly 6-8 weeks. The combination will make it more of a fair fight for my immune system. That way, the anti-viral can do its job by reducing the viral load and the Methylprednisolone will manage the inflammatory response. After a while, the virus will be contained and the inflammatory response will go away so I won't need the steroids. 

All in all, it makes sense that I would experience fluctuations of the most classic mono symptom, fatigue, along with fluctuations in inflammation. It is more evidence that my infectious disease specialist is on the right track with this protocol. And, the fact that I'm now able to get by on only 1 tab a day and feel a significant increase in energy hopefully means that I am making progress and getting better! Fingers crossed.

Increased Heart Rate and Blood Pressure

Last month, my blood pressure was at an all time low. I was consistently getting the lowest readings of my life. My blood pressure has always been low, low enough to cause symptoms of lightheadedness and weakness. Even though it's always been low, it still fell within normal limits. On average, it was about 105/70. Now, I've been on beta-blockers for years now and in addition to keeping my heart rate normal, they also lowered my blood pressure. Starting about a month ago, though, the readings suddenly plummeted to 90/56. My cardiologist told me that if the systolic pressure (the top number) goes below 90 that I should call him. It never did go below 90 so I just kept his advice in mind and monitored it. 

Then the inflammation and fluid retention started and I was put on steroids shortly after. Since then, my heart rate has been consistently 120-130 and my blood pressure sky-rocketed above normal limits to 135/85. Those numbers are too high for anyone. Instead of taking my beta-blocker at bedtime like I have been doing for over 2 years now, I started taking it early in the day to bring my heart rate and blood pressure down. About an hour after I took it, my heart rate would come down to about 95 or 100 and my pressure to about 115/75. Although it was much better, a heart rate of 95 or 100 is still too high. The only other things I could to manage it were to drink lots of water, do relaxation exercises and avoid caffeine, all of which I was already doing. Since I was still in the middle of battling severe inflammation, it was hard to know what was causing the spike in my vitals. One theory is that it was my body's "fight or flight" response to the overwhelming inflammation. The other theory was that is was caused by the steroids themselves. It was really hard to sort it out while both the inflammation and the dose of Methylprednisolone were high. But, after about a week of the inflammation being consistently well-controlled, both my heart rate and blood pressure were still super high. 

For the record, the way I knew they were both high was because I had several doctor's appointments where they took my vitals and every time I went to the grocery store or pharmacy, I used the machines there. I also monitored my heart rate at home by checking it periodically throughout the day. 

Now that it has been nearly a week of well-controlled inflammation and a significantly lower dose of steroids, both my heart rate and blood pressure have come down. Yesterday at the pharmacy, the reading were 117/75 and 101. Now, a heart rate of 101 is still too high and is considered tachycardia, but that was a pure reading because I had not yet taken my beta-blocker. That means that now my heart rate on its own is the same as it was last week shortly after taking my beta-blocker. That's a huge improvement! Again, it's hard to sort out, but now I feel pretty certain that the high dose of steroids was causing the increase in both numbers. That is one of the side effects of Methylprednisolone, along with flushing, mood swings and increased perspiration, all of which I experienced. So, for all of these reasons, I am happy to be on a lower dose. Maybe before too long I won't need them at all. That would be wonderful!

Lowering the Dose of Methylprednisolone

Over the course of the last week, I have managed to decrease the dose of steroids (Methylprednisolone) significantly. Since the completion of the second Medrol dose pack-a 6 day regimen of Methylprednisolone that starts off at a very high dose of 6 tabs the first day then gradually decreases to 1 tab on the final day-my infectious disease specialist has kept me on Methylprednisolone at varying doses to control the severe Hyperparesthesia (skin pain and sensitivity) and swelling. At first 2 tabs a day was enough to keep the inflammation at bay. My doctor told me that it was ok to take extra tabs for a little while if the inflammation comes back or isn't managed by 2 tabs. For about a week, it took 4 tabs a day to manage it. During that week I was being treated for that kidney infection so it's possible that my body was just overwhelmed and needed some extra support. On one day during that week, I tried to take only 3 tabs one day. The next day I woke up to severe Hyperparesthesia again. This time, it mostly affected my back, neck and shoulders making it difficult to rest because the pressure of the pillows against my skin when I tried to lie down was too painful. So, I went back to 4 tabs for the rest for the rest of that week because it was clear that I was not able to get by on less at the time. 

However, since then I have been able to bring the dose from 4 tabs down to 2! I did it gradually, decreasing it by 1 tab at a time and giving it a few days to see if the new dose was enough to keep the inflammation down. Then I would decrease it by 1 more tab until I got down to 2 tabs. It's been 5 days on 2 tabs each day and the inflammation has been controlled pretty well. There were moments or even whole days here and there where I felt the inflammation but it was mild and didn't call for an increase in the dose. I feel more at ease mentally on a lower dose as well. Methylprednisolone is a powerful steroid; it's even stronger than Prednisone and the idea of being on it at all makes me uneasy. I was in a bit of a hurry to reduce the dose because 4 tabs a day just seemed excessive. Like I said, I feel more at ease about the whole thing now that I only need 2 tabs a day. I also like that my doctor gave me instructions and the the freedom to adjust the dose as needed.

Now here's the exciting part. Since the kidney infection has been treated and I've been stable on 2 tabs of Methylprednisolone a day for 5 days now, I'm thinking of trying only 1 tab today! Of course, this is just a trial run to see if it's possible to get by on a lower dose. If the inflammation returns, I may need to go back up to 2 tabs. Or, if I encounter some other major physical stress, 1 tab may not be enough and I may need to increase the dose temporarily again. No matter what, the fact that the inflammation is controlled well enough for me to try 1 tab is a good sign, I think. I hope that this dose is enough to manage it! So this morning, I only took 1 tab. I will see what happens and report back. 

More updates

I went back for a third and final visit for the kidney infection on Wednesday. The results from the labs:

• Urine culture:  Confirmed bacterial infection that is sensitive to Cipro. That means that the kidney infection is no longer suspected but confirmed. That also means that a 10 day course of Cipro should have resolved it. They are repeating the urinalysis one last time to make sure the entire infection has been treated. If not, I suppose I'll need another course of antibiotics. 

• Blood work:  Kidney and liver function tests were normal! That rules out something huge and life threatening and is a major relief! The labs also measured my TSH (Thyroid Stimulating Hormone) and found that I have an overactive thyroid.  I've had this test done several times and it has never come back anything but normal. The doctor ordered more blood work to investigate the thyroid thing in more detail. So, stay tuned.
  

So, those are the test results. Now, onto how I'm feeling. I'm still incredibly worn out and still taking steroids and still feel kidney/flank pain and am still retaining lots of fluid. The blood work ruled out a lot of possibilities but has left me without an answer about why I'm retaining so much fluid and have occasional flank pain. I'm going to have to investigate it further on my own and maybe in 6 weeks or 2 months a doctor will be able to look back, long after I've figured out roughly what was going on, and finally provide me with a diagnosis. That's the way it usually works. I mean, the kidney infection was pretty straight forward and handled very well by the doctors at urgent care. But, I'm still the one that figured it out and diagnosed myself long before they got my file. But, most diagnoses take forever and are incredibly frustrating. My guess is this fluid retention/kidney situation will follow suit. 

On a positive note, I came down on my dose of steroids a bit without problems! I have needed 4 tabs a day for about a week or so now and that's a very high dose. A few days ago, I tried 3 tabs and woke up extremely inflammed the next day. So, disappointed, I went back up to 4 for another few days. But, for the last 2 days, I've gotten by on only 3 tabs without that crazy inflammation rushing back! Any reduction in the dose is a good thing. Now that it's been a couple of days of stability on 3 tabs a day, I'm going to see how it goes on 2 and report back. 

On a not-so-positive note, my heart rate and blood pressure are out of control now. As of November 10th, my average blood pressure reading is 130/80. The highest I've seen it go is 135/85. I've always gotten low readings. For years, the readings were low enough to cause lightheadedness but not low enough to be dangerous. But, about 6 weeks ago, I started getting the lowest readings ever, like 90/56. I've been on beta-blockers for years, which lower your blood pressure, but my dose has never changed and my readings have always been about 110/70 with beta-blockers. Then all of the sudden, they started getting lower and lower until I finally got that 90/56 reading. My cardiologist said if the systolic pressure (the top number) gets any lower that I would need to call him. So, fast forward to present day and my readings are now high by anyone's standards. What's going on? Worse than that, my heart rate has been out of control, even on beta-blockers. Lately, I've started every day with a heart rate of 125-135. That's way too high. Anything over 100 is tachycardia. Even 110 would be acceptable, but not 135. It's been like this everyday. So, I take my beta-blocker earlier in the day and it comes down either to normal or to near-tachycardia for a few hours. It's not good. I need to call my doctor, check in, and see what's going on.

At first, I thought the increased heart rate and blood pressure were a response to the overwhelming inflammation, my body's fight or flight response. But even after a week or so of the inflammation being controlled fairly well, they're still too high. My best guess now is that the steroids are causing it. The fluid retention alone can increase your blood pressure and the steroids could be responsible for at least some of the fluid retention now. I'm assuming that the lower the dose of steroids, 2 tabs a day vs. 4, the better my readings will be. We'll see. I'll see what my doctor has to say about it. In the meantime, the only things I can do to try to control my heart rate are drink more water, avoid caffeine (of course!) and do breathing and relaxation exercises. Since I don't yet know if my beta-blocker should be adjusted temporarily, there's not much more I can do to keep my heart rate low. Oh, it's all so confusing. One problem causes another. Medication treats one problem only to cause another. It's all so messy. 

I've been taking 4 methylprednisolone tabs a day for 4 or 5 days now. This seems to be the dose at which the skin pain stays nearly gone. So after several days of very little inflammation, which has helped my heart rate calm down a bit, I thought I should try taking only 3 tabs yesterday. The result...I woke up to skin pain this morning. It's all over my back, neck and chest. It's not quite severe; I would say it's only moderate. But, that estimation is coming from a person on 60mg of morphine a day.

So I guess it's back to 4 tabs a day again. But 4 tabs is a very high dose. Why is it taking such a high dose to keep the inflammation down. This is so frustrating. To look at me, aside from the bags under my eyes that I conceal before anyone sees me and the fact that I mostly just sleep these days, you wouldn't know I was in so much pain. When I say inflammation, you would naturally assume redness and irritation. But there's no outward sign of it. No rash. Nothing. Just invisible, abject pain. 

After several days on 4 tabs, I had a steroid moment last night. After spending a lovely, relaxed afternoon with my friend and her 3 month old baby, suddenly my cheeks were flushed, I was starving, and my mood shifted drastically to sad and angry. I couldn't stop eating. I had an enormous appetite. I ate meals and snacks all evening that were twice the size of my normal. Nothing filled me up; nothing satisfied me. I was also in quite a bit of pain. I'm still experiencing flank pain every so often, sometimes with my regular SI and hip joint pain. The flank pain isn't made better with ice like the joint pain. In fact, ice stings and makes it worse. That's very unusual for me. Ice has been my pain lifeline for a long time now and it's weird to me that it would fail to help. But last night was just straight forward SI joint pain. I tried ice and rest but it soon became intolerable anyway. I ended up taking  a pain pill which gave quite a bit of much needed relief. God, it was a bad night though. All of that was happening at once. I managed what I could with medicine and food and ice and rest and relaxation and on and on. But it all went on for hours and consumed my evening. I know that the steroids were responsible for the flushing, appetite, and mood swing. Those are classic side effects. I've had no appetite lately. It's been days of avoiding meals and snacks, not craving anything, and bad stomach aches when I do eat. I don't know what's causing that quite yet though. So to suddenly have this enormous appetite was strange. 

So I suppose I will try 4 tabs a day for now. This skin pain is unacceptable. The fluid retention remains a mystery for now. It's still happening, still everywhere, still seems to happen regardless of other factors like inflammation or fatigue or salt intake. I'll see my doctor this week and get the results from the kidney and liver function tests. I just want to know, just want to rule things out, figure things out, and move on. 

It's 8:30am on a Saturday and I'm up for no reason. I don't know why I bother with the part about it being Saturday, I suppose to clarify the injustice of being awake early on a weekend. But, it's always the weekend for me these days. It must be the principle of the thing.

So here I am. I sat up and downed this morning's handful of pills then got right back in bed. Normally I would be racing for the kitchen, in as much as I can "race" anywhere, for food and coffee. But not this morning. This morning, and last night for that matter, I don't really have much of an appetite. Maybe I'm still sick. I'm on steroids, I should have an enormous appetite. I did have an enormous appetite last time I took such a high dose. Maybe it is yet to come. Maybe I'm adjusting to that particular side effect. Or, again, maybe I'm sick. Hard to say.

The funny and sad part about all of this came after the realization that I'm still in bed and not in the kitchen getting breakfast. My first thought, at 8:30am on a Saturday when most people are making plans to go out to eat or do yard work or go downtown or what have you, was, "Nice, I'll be awake for a long time today, and that means extra meals and snacks, and that means many opportunities to take all the different medications I need to take with food, nice and far apart from each other." Yeah, I know, it's depressing. I got excited for a minute at the thought that I'll have lots of time to take all my medicine. The worst part came next. I looked at the clock and thought, "Well, appetite or no appetite, I better get started. Don't waste this opportunity!" Yeah, I know, that's even more depressing. I'm lying here, not feeling very well, pressuring myself to "get started" and not waste time when there are precious meals to eat and pills to take. What a sad state of affairs!

Pain-Yesterday and Today

Last night I was in a whole lot of pain. My lower back, right side only, was very inflammed. There was mild flank pain but severe inflammation of everything else in the area, including muscles and joints. It was pretty bad. All I did was rest yesterday. I tried ice packs first but they didn't help much. The pain was too deep and widespread for the ice pack to cover it. So I took a pain pill, always my last resort, expecting relief. It didn't end up helping at all. The pain was just uncontrollable. I paid close attention to it, though, because the location made me feel suspicious that it might be connected to the kidney situation. It's hard to sort out, though, because it could've just been a joint pain flare. I decided to just watch it closely and see if it improves. It's always troubling when pain medicine doesn't off enough relief because there's no where else to go from there. I usually try NSAIDs, muscle relaxants, ice and rest before I take an instant-release morphine. If none of that helps or the pain isn't controlled well-enough to function through whatever it is I need to do, then I feel a pain pill is justified. I don't take them very often. When even a pain pill isn't enough, there's nothing else I can do medically. I can't take more than one and I can't overdo any of the other meds either. I can use relaxation and guided imagery to cope with the pain but that's about it. Last night, nothing helped. Even on all of that medicine,  all I could do was lie there in pain and hope it would go away soon.

It did. It was much better when I woke up this morning! I haven't had to take any extra medicine for pain or use any other coping mechanisms today. Perhaps it would've been wise to take that pain pill earlier on yesterday, before the pain got so bad. That's the thing about pain management. It's typically easier to keep pain levels at a constant than it is to bring down a high level of pain. It's smarter to take the medicine before the pain becomes a crisis so that it isn't up against such a high level. My problem is that I wait for it to get bad because that's the only way I can justify taking it. I use it sparingly and I intend to keep it that way. But, again, sometimes it's better to use it as a preemptive measure to keep pain at a more constant level. I'm still not good at knowing when to do that. I'm trying though. Anyway, the pain was much better by this morning. It's been very mild all day. I'm still too tired to get out of bed. I haven't left the house in days except to get some blood drawn. I have plans to hang out with my best friend tomorrow. She's going to make sure I get out of the house for a while. She really looks out for me. When we hang out, she takes such good care of me. She makes hanging out, getting out of the house and enjoying good distractions a lot easier. What would I do without her?

Also, I've been taking 4 methylprednisolone tabs for 4 days in a row now and the skin pain is nearly gone. I've also been retaining less fluid and that's a good sign. I was 5 lbs lighter today! I hope it's not a fluke but rather the beginning of this stuff finally getting better. I'm going to use the steroids for now, even though they're not ideal, because they will keep the inflammation low and keep my body from having fight or flight responses. Once the inflammation is controlled for a few days, I'll back the dose off a little. 

Ok, that's it for now. I've already been up for too long and am getting pretty sleepy. The sedatives are kicking in and that means it's time for bed!

A Few Updates

Ok, I will admit up front that this is a rather sloppy way to discuss or conclude some of these topics. I just scanned through a few of my latest posts and noticed huge gaps in information. I see that I've moved on from a few treatments or efforts I've made without discussing their outcomes. Please forgive the bullet points for now. I am too sick and too exhausted to put much effort into writing right now.

• Skin pain/inflammation & the anti-inflammatory diet-I did, in fact, participate in the full 3 days of eating nothing but turkey, rice, and pears. I chose jasmine and brown rice because they are both whole grain and significantly more substantial than many other kinds of rice. All in all, I can't say it helped much. I didn't notice any significant relief. Perhaps it helped to prevent further inflammation but that is not really something I can know for sure. I am glad I tried it, however, because it gave me an active role in fighting the inflammation. That's important because sometimes feeling powerless against illness feels as bad as the illness itself. Also, it was a valid option and certainly worth a try.

• Skin pain, widespread inflammation, and fluid retention have continued to be a problem-By the end of the second round of steroids (Medrol dose pack) the inflammation had returned. I spoke to Dr. Reifsnyder and he ordered that I stay on a lower dose of steroids for a while. He prescribed a large quantity of Methylprednisolone, the same drug and dose found in the Medrol dose pack. Methylprednisolone is made from prednisone and is much more powerful. Since the end of the second pack, I have stayed on anywhere from 2 to 4 tabs a day, 6 being the largest number of tabs in one day of the pack. The idea is that I should stay on the minimum number of tabs a day it takes to control the inflammation. On bad days, I should take an extra tab. So far, it's been nearly 2 weeks of varying numbers of tabs a day and the inflammation is controlled but not consistently. Even after a couple of days on 4 tabs, I was so swollen and inflammed that I looked 5 months pregnant and my legs felt tight and full of fluid. However, it's hard to know what was responsible for what at that time because shortly after, I was diagnosed with a kidney infection. More on that later. For the last 2 days, I've taken 4 tabs a day and the skin pain has been controlled pretty well. 

• The reason and plan for steroids-Dr. Reifsnyder explained it this way. The skin pain is a result of my immune system over-reacting to the recurrence of the viral infection Epstein-Barr. My immune system is sounding all alarms and calling in for way more back up than it needs. As a result, it is fighting the infection inefficiently, with resources going toward unnecessary and unproductive processes like inflammation of the skin and fluid retention. Steroids suppress your immune system and are not ideal for someone fighting an infection. They also mask signs of infections by preventing your body from having a fever and increasing your white count making it hard for doctors to interpret labs. Anyway, in my case, suppressing my immune system a little right now is a good thing because it will bring my immune response down to a reasonable level. That combined with anti-viral therapy with Acyclovir will, over time, make it more of a "fair fight" for my immune system. Now, I have been putting all of this pressure on myself to be on as little medicine as possible to control my symptoms. And, while that is a legitimate goal, I've realized it shouldn't be the focus at the moment. I've been trying to get by on the lowest dose of steroids possible. As a result, the inflammation hasn't been controlled all that well and it's causing my body to go into "fight or flight" mode causing my resting heart rate to jump to 135-far too high-and my pupils to dilate at random. When my pupils dilate like that, I get a debilitating headache. After a few days of that, I realized that it's more important today or this week to control the inflammation than to focus on getting down to a low dose of steroids. For now, I just need to use the resources I have to control the situation and take unnecessary pressure off of myself for now. Even if I end of up taking the steroids for as much as a few months, that it still considered a short course.

• The kidney infection- Last weekend, the fluid retention throughout my body, especially in my abdomen, became a problem. Even though I had taken extra steroids, I was extremely swollen and inflammed and I didn't know why. Then something called "flank" pain started on Saturday night. The week before, this same pain woke me up in the middle of the night when it came on suddenly and severely. It was pain that I've never experienced before. It was in my lower back, above my SI joints but below my rib cage, right about at my waist and just on one side. It was unlike any musculoskeletal pain I've ever had. I had also had an odd sort of headache that had been going on for 3 days. It was unlike the usual headaches I get and I kept saying I felt like I was probably coming down with something. I also had been having trouble emptying my bladder completely yet had no other symptoms that typically accompany a UTI like burning or urgency. Then I connected the dots and realized that something might be up with my kidneys. I researched the pain I was experiencing and learned that it is called flank pain. The description fit perfectly with what I was experiencing. So, I called Dr. Reifsnyder-but not before having a panic attack-and left him a voicemail. He returned the call pretty quickly. I explained the situation and he advised that I go to urgent care as soon as possible and have them run a urinalysis. The next morning, my mother took me to urgent care. My white count was elevated and my symptoms were consistent with a kidney infection. However, steroids can elevate your white count and make it hard for a doctor to tell if there is actually an infection present. They drew blood for a CBC and a urinalysis. This facility has an on site lab and the results come back almost immediately. With the labs and clinical presentation, they had to treat me for a suspected kidney infection. Again, it was their best guess given that the labs could be misleading. One thing that was not misleading was the fact that I had a fever, an obvious sign of infection. But, you're not really supposed to be able to get a fever on steroids so I suppose that's confusing too. They gave me 2 grams of IV Rocephin in the office and also prescribed a 10 day course of steroids. Then they scheduled a follow-up for 3 days later to repeat the labs and make sure the treatment is working. That was such a rough day, I was so exhausted I couldn't stand it. I was swollen everywhere and just at capacity. I felt like I might burst. I did look several months pregnant too; it was embarrassing. But, within 24 hours, I could pee normally again and the swelling went way down. In one day my abdomen went back down to normal. It was crazy how fast it happened! Anyway, I seemed to be responding to the antibiotics and the infection was going away.

• More problems with my kidneys?-Yes, that is the question now. Is there something else wrong my kidneys? I went back for my 3 day follow-up, they repeated the labs, and the doctor noted that I was recovering from the infection as expected. However, I could still feel mild flank pain and was still retaining fluid. My weight has gone up over 20 pounds in a matter of weeks but I can still wear the same sized clothing. How is that possible? At this weight in high school, I wore a size 10. Now, having swelled up suddenly to that same weight, I'm still wearing a size 4 or 6. That's weird! It doesn't make sense. That's partly how I know it's fluid not fat. It's everywhere, my doctor could even feel it in my arms. And even though the headache, pain and fever have improved, I'm still completely exhausted and retaining fluid. My doctor at urgent care said that severe fluid retention is a sign that something might be wrong with my liver or kidneys. He ordered liver and kidney function tests and asked to see me back in a week. There are a lot of things it could be, ranging from something simple like infection to life-threatening. However, no one is treating it like an emergency. They are taking it seriously and watching me closely, but no one suspects a major or life-threatening problem. I feel like things are being handled appropriately. I will know more next week. For now, all I can do is sleep. I can't get out of bed for anything. I'm just swollen and exhausted. I am alarmed at the thought that something might be wrong with my kidneys, of course, but not in a state of panic or anything. I am just really curious to know what the hell is going on. Kidneys? Really? No fair!