Pegasys not the best option for me?

I was really excited when my Mayo hematologist decided to start me on Pegasys, back at the beginning of the year.  I was optimistic that it would address some of the issues that I felt the Hydrea was not addressing well.

Sure enough, things started out very well.  The transition seemed to go smoothly.  My platelet counts leveled out nicely, and my white cell and red cell counts both rose to the normal level.  The best part was that I just *felt* better on the Pegasys.  I’m not sure that I can explain how…I just felt more positive.  I still got tired as easily, but until I did I just felt more motivated.  Of course, I needed to be careful that feeling more motivated didn’t make me overdo things quicker.  But until I ran out of energy, I actually felt…almost normal.
I think that, before, I was in a bit of a depression that I hadn’t realized I was in.  And it was gone with the Pegasys.  That’s how it felt, anyway.  Which, of course, makes me wonder – if I was depressed and didn’t realize it, just how depressed was I when I *knew* I was depressed?

So, to say I was happy with the Pegasys is putting it very mildly.

Back in March, I mentioned in a post that I was starting to have some pain in my arms.  We’d credited it to a slight rise in my platelet count, because I become symptomatic when my counts get in the 400s.  Now, we’re not so sure.  It may have been the beginning of issues with the Pegasys.  During the month of May, things got gradually worse, leading up to my local hematologist removing me from Pegasys completely, out of concern for my health.

During March, I started waking up at night, with my arms aching and tingling.  I would switch positions, wait for the aches and pain to go away, and go back to sleep.  This continued, on and off, through April.  Then, on May 6th, I had an appointment with my local hematologist.  As I was getting dressed, I raised my left arm to apply deodorant.  I was standing in front of my mirror, and when I raised my arm I could see a dark, raised red patch starting under my upper arm, extending around my armpit, and down under my shirt.  I stopped to think, figuring maybe I’d been leaning on something that caused the mark.  I couldn’t think of anything, and I raised my right arm.  Same thing.  I raised my shirt, and sure enough, the red patch extended down both sides of my torso, across my stomach and lower back and down onto my butt, pelvic area and inner thighs.  It was dark red, raised about 1/8″, and hot to the touch.  It hadn’t yet started to itch, and before I saw it I’d been oblivious to its presence.
My appointment was in about 15 minutes, so I tried to call to ask if I should still come in with a rash.  I was thinking about all the folks in the infusion center, with very low WBC counts, and was concerned that the rash meant I had something contagious.  No one answered at the office, so I went.  By the time I got there, the rash was darker, and had started to itch.  It also felt hot, where the rash was on my back, when I leaned back in a chair.

When my hematologist came in, he asked me several questions and checked me out.  Then he told me that he felt the rash was caused by the Pegasys.  He said that it was exactly the sort of rash the Pegasys could cause.  The solution was to put me on a steroid for a week to get rid of it, and see if it ever came back. I was told that often it’s a one-time, or just once-in-a-while thing.  If it kept coming back, I would have to stop taking the Pegasys.  I crossed my fingers, because I was really liking the Pegasys, and wanted to stay on it.  Sure enough, the rash went away and has not been back, yet.

For about a week, I was optimistic again, and feeling great.  That week went very quickly, because my oldest daughter was moving out, and I was helping her shop and pack.  Then the 20th came, along with a terrible, migraine-level headache.  I remember the date because that is the day my daughter moved out, and I did a lot of crying.  The headache started after she left and I credited it to all of the crying that I had done.  Except, it’s been 3 weeks now, and I’ve had maybe 3 days without the headache.  It’s been in the same area – it starts on the left side of my nose, goes through my left eye socket, up around the side and top of my head, down the back, and stops on the left side of the back of my neck.  It’s a high pressure, burning headache.  It feels like a migraine-level sinus headache, except it isn’t just in my sinuses.

At the same time, the arm pain kicked up a few notches.  Instead of the pressure and pain at night, I now experience it all day.  Also, my hands ache and tingle constantly, and I cannot make a fist or have the normal range of movement in my fingers.  If I try to use my hand normally, I get shooting pains.  But the worst is at night.  I wake up several times each night, crying out, feeling like my arms are on fire.  Not just a burning pain, it feels like someone poured kerosene on my arms and lit them on fire.  At first, I could just reposition myself and wait for the pain to subside.  But it’s gradually gotten worse so that now I have to get out of bed and move around for about 20-30 minutes to get the pain to go away.  It’s not like a pain caused by lack of circulation, it’s like a pain caused by too much blood.  Like my arm is going to explode.  On top of that, when I wake up in the morning it feels as though someone has tied strings tightly around the base of each toe.

I mentioned the pain when I went for my weekly blood draw.  They called my Mayo hematologist’s office, and I was told that my platelet counts are good, so they didn’t feel it was related to my ET.  I went home, slightly frustrated, and started talking online to other ET patients.  I learned that a few others had similar symptoms, and had been diagnosed with Erythromelalgia, which can be caused by MPNs.  When I went back for my weekly blood draw the following week, and was asked how the pain was and I told them it had gotten even worse, they insisted that I make an appointment with my local hematologist.  I went to see him on June 3rd.

After examining me and listening to my complaints, he told me that he felt this was all being caused by the Pegasys.  I asked him why he wasn’t suspecting this Erythromelalgia, and he said that he agreed that it could possibly be a cause, but he felt there were a lot more ‘red flags’ caused by the possible association with the Pegasys – and that it was a much more dangerous scenario.  He wanted to rule out the Pegasys, first.  Okay, I can understand that.

Now, at this point, let me back up a little and explain another concern that my local hematologist has had with me.

Several times over the last few years, my general doctor has ordered a Lupus test for me, because my ANA counts are elevated.  However, the Lupus tests always came back negative.  My local hematologist decided to order the test for my ANA counts again, because he wondered if the pain I still feel could be caused by Lupus.  Again, the counts were elevated.  Normal ANA counts are usually 0, but considered ‘normal’ up to 40.  Mine seems to stick around 320.  But again, the Lupus-specific test came back negative.  However, my local hematologist still feels this is something we need to focus on.  He has asked me to be seen by a rheumatologist, because he wants to rule out Mixed Connective Tissue Disease, which is another auto-immune disease.  I go to see a rheumatologist on the 22nd of June.

So this is the ‘more dangerous’ scenario with the Pegasys.  In fact, there is a warning that comes with the Pegasys information that states, “Development or exacerbation of autoimmune disorders…has been reported in patients receiving alpha interferon.”  We already know that the Pegasys didn’t cause an autoimmune disease for me, because my counts were elevated before my diagnosis of ET.  But, if it turns out that I do have Mixed Connective Tissue Disease, or some other autoimmune disorder, it would be dangerous to continue on the Pegasys.

And so that, apparently, is our focus at the moment.  My local hematologist has told me to stop taking the Pegasys for a couple weeks.  I’ll let him know, next week, if I am feeling better.  I missed my first dose two days ago, and I can tell you that last night I experienced my first night of not waking up with my arms on fire in a long time.  The headache is still present, but the arm pain is slightly better.  He said that if I do end up feeling better, he may challenge me by having me take a couple doses to see if the symptoms flare up again, just to make sure that was the cause, and that it wasn’t a coincidence.

In the meantime, I have a re-check with the opthamologist on the 13th (to check for more retinal clots) and I see the rheumatologist on the 22nd.  Then, on the 29th, I’ll be back at the Mayo Clinic for my 6 month check.  I suppose, in the interest of ‘looking for something positive’, this is good timing.  I’ll be sure to mention the headaches to the opthamologist, since they center around my left eye so much, and of course it’s fortunate that I will be seeing my Mayo hematologist in a few weeks, as well.

Am I bummed?  Hell, yes.  Until these side effects kicked in, there was such a noticeable difference in the way I was feeling.  I was getting more done, and feeling more upbeat.  Now I hurt more than ever, and am fighting to stay positive.  I also have those mixed feelings that I had before my ET diagnosis of ‘I’d rather there was nothing wrong, but if there is I need to find out what, so that I can address it.’  The feeling of ‘I don’t want to know – but I do’.  And, of course, the fear of the unknown.  By now, I feel like I know my friend, ET, pretty well.  He doesn’t surprise or scare me, anymore.  But, these autoimmune diseases are all strangers to me, and I don’t know what to expect of them – let alone if I need to get to know them.

So, all in all, I hope these next few weeks go by pretty quickly.  Oh, and did I mention, my 23rd wedding anniversary falls smack in the middle of all of it? 😀

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~ by julie70 on June 10, 2011.

One Response to “Pegasys not the best option for me?”

  1. I felt better, more positive, at first on Pegasys. But then I got severe side effects.
    A rash (different from yours, little red spots) on arms and legs), air hunger some nights for hours, and worsening of foot neuropathy. I had to quit.

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