Monday, April 28, 2014

Second pregnancy PUPPPs and what is working in battling my rash

Because I have suffered PUPPPs before, it seems both better and worse the second time around. It is better because I know what it is and I know where it is going and what to expect. It is worse because I know what it is and I know where it is going and what to expect. It doesn't help that I got it much earlier and worse this time.

The benefit of knowing what I was up against was that I had tried all manner of things before and I am able to treat it sooner. As soon as I felt the itch before the rash had blossomed, I talked to my doctor about what was safe. She recommended antihistamines and topical creams like moisturizer and hydrocortizone. 

As the rash did soon blossom, I used super moisturizers like Cetaphil. That provided relief and it only grew slowly. Then it started to pick up speed so I used Sarna, an anti-itch lotion I hadn't found much help last time but still had around. Some women swear by it. For me it increased inflammation and discomfort. I stopped using it after three or four days and the rash calmed a bit. However it was still progressing and starting to creep up my belly above my navel. 

So as much as I hate to take drugs, I knew how awful this could get and how quickly, so I took Zyrtec Allergy. I was pleasantly surprised that the rash became less inflamed and greatly reduced. It started to clear up under my belly after just a few days. Then the intensity of the rash picked up again and I lost ground but maintained a reduced rash, less raised and red. 

I use Cetaphil gentle clenser and Cetaphil moisturizer for best results. Being out in the heat too long or taking too warm of a shower can set me off to unbearable. I'm glad I've tried the Zyrtec. it is working for me. I've also introduced a dandelion root tea to drink at work and am going to talk to my doctor this week about the pill form. I'll keep you posted on what works. So far, it isn't going away, but it has slowed down and with 12 weeks to go, that is good news.

Friday, April 25, 2014

PUPPPs in my second pregnancy - the rare return

"Can PUPPP recur with future pregnancies?
This is very uncommon. If it occurs the PUPPP is likely to be milder."
-citation http://www.dermnetnz.org/reactions/puppp.html

Ha.

It is commonly cited that between .5% and up to 1% of pregnant women may suffer PUPPPs. According to the Center for Disease Control and Prevention there were 4,058,000 live births in the US each year (July 2013). I did not include pregnancies that ended in miscarriages nor terminations as those mostly occur early in pregnancy before PUPPPs is likely to occur. So using the high end of the range, 1% of 4,058,000 is 40,580 and on the low end that is about 20,000 women suffering from PUPPPs in a given year in the US. 

Once I told my PUPPPs story, I discovered a childhood neighbor who suffered PUPPPs in her first pregnancy and a college friend who suffered PUPPPs in her first full-term pregnancy. I had never heard of it before my diagnosis in my first pregnancy.

When I asked the doctors about recurrence, they said it usually only occurs in first pregnancies and with multiples. However, given my extreme case they would not give me any guarantees.

I took some hope in the overall odds, the law of averages and the fact the websites like those quoted above said if it did recur, it should be milder.

Ha.

Pregnancy number two, I looked over at my husband at week 18 and "uh-oh, I am starting to feel itchy." It didn't progress very quickly, but by 21 weeks bumps started to appear and by 25 I had the familiar wheels of itchy red raised streaks surrounding my belly button. And they grew alarmingly fast so that by 26 weeks I was aggressively seeking treatment to stop its spread.

Not only was I getting PUPPPs in my second pregnancy, I was getting it earlier and with more severity. What are the odds of that?

No really, I'd like to know. And I can't seem to find any information about how many women have recurrence. All I know is anecdotal evidence from others like myself exists on question boards and Facebook threads across the internet. It does seem rare but I have been unable to quantify that rarity.

I felt unlucky in the first pregnancy and now I feel afflicted. 

Wednesday, April 23, 2014

PUPPPs and delivery - how my pregnancy rash impacted baby's arrival

As mentioned in previous posts, week 38 was nearly unbearable. I estimate I slept 45 minutes or less per day. My pain level was an 8 or 9 and I wanted out of my skin in the worst way.

Like many moms, I had a birth plan and it hoped for the best - no interventions, minimal drugs if any and to allow baby to come when she was ready. PUPPPs took me way down to the not ideal parts of my birth plan. First step was coming to grips with the need to be induced. Everything about PUPPPs points to the fact that true relief cannot begin until the baby is born.

Without sleep, I was fast losing endurance and strength that I knew I needed for labor. I really wrestled with the fact that PUPPPs wasn't endangering me or the baby, so why intervene? And yet, for my itchy friends, you know the need for relief is palpable. So much pain, so much itching, so little sleep or relief. Birth is not without pain so that seemed like a poor reason to intervene on its own, but it was ultimately the lack of sleep and persistence of my husband that got me to the place where I was ready to admit PUPPPs had changed my nice birth plan.

The doctors seemed relieved that we had chosen induction. We were admitted, and immediately other impacts of my PUPPPs were felt. First, they needed a vein. It took three people to determine exactly how and where to do that as my body was so swollen and rashy that they simply could not see any of my veins. Finally they settled on one barely visible spot in the crease of my elbow. This was not ideal for so many reasons. One, terribly uncomfortable. Two, have you ever gone 30 hours without bending your elbow. I doubt it and I found trying to not even slightly bend my elbow while laboring, let alone resting and breathing, to be nearly impossible. It had to be secured several times and the monitors went crazy every time I went to 178 degrees on my arm instead of 180. Annoying for me and the very patient nurses.

Next, as I was induced and watching for the signs of labor, it was very difficult to feel them. Because the pain of the rash was so great, it took a long time to be able to discern the pain from contractions. I needed lots of support and monitoring to be able to labor. 

As it took longer and longer, I was tired and had been in pain for a long time, so we requested an epidural. I was already hooked to lots of monitors so one more line did not feel like a huge deal, especially if it could give me some relief that I could channel into labor. It did help in that regard, but we were already nearly a day into labor.

I gave birth at a teaching hospital where I received good care. Word did get out that a severe PUPPPs case was in the wing and I received many visitors. I am usually a pretty private person, so I thought that it may bother me to be a display model for so many students and practitioners. However, I was so uncomfortable and so mad at my PUPPPs, it was easier to share my condition with those who were interested and could help give better care to others suffering from PUPPPs in the future. 

I labored for about 30 hours and estimate that I had over 50 practitioners in my room at one point or another with about 12 at once toward the end. Longer story cut slightly shorter, the baby got stuck and interventions were not working to get her out. Finally an emergency c-section was done and our baby arrived. She was small, beautiful and worth it.

A few hours after birth, my swelling and redness started to recede. It was not a vanishing act by any means, but it did lessen in a visible way. After a major surgery, they strap cloth boots with electrodes to zap your legs for circulation. The 12 or so hours with those boots was agony for this itchy momma. 

The nurses and doctors had lots of questions about my pain, but it wasn't until day 3 that pain other than my itchy pain was noticeable to me. That may also be why it took me 6 days to realize that the tongue swelling and other problems I was having were related to my allergy to a pain narcotic. Again, the prevalence of the PUPPPs simply overwhelmed the other things happening in my body.

Most discouraging to me was that PUPPPs didn't simply vanish within a couple weeks of birth. By day 3 I was very encouraged that my PUPPPs had receded significantly and seemed to concentrate back to my belly and thighs. And then, I took a shower (wonderful feeling) and five minutes into it my milk came in all at once. It was like water balloons filling. Immediately after that it was like my PUPPPs coming back in a giant wave. The rash rippled across my body spreading red itchiness up to my neck to the tips of my fingers and back in between my toes. The discharge doctor had seen me before my shower and I summoned her back after the shower. She was in a bit of shock at how rapidly the PUPPPs had returned and immediately prescribed me stronger steroids to help reduce its affects. My PUPPPs came back at about 75% of full strength from its worst. It did decrease, but at 2 months past birth, I was still at about 40% coverage and strength.

It wasn't until I weaned my daughter at 7 months that I reached full relief. Again, I had hoped to nurse longer, but I was really tired of itching and as a working and pumping mom, I finally gave in to the itching and juggle of timing and dishes. Why did I wait so long to give up nursing? I wasn't certain it would end the itching and after the severe 38 week to birth itching, I felt the diminished rash was survivable in comparison.

Bottom line, my PUPPPs was very severe and should not be the normal PUPPPs experience. And I still have a healthy baby and was able to get my body back and the itching did go away. I have some itching scars and am just generally a more itchy person than I remember being before PUPPPs, but life can and does go on.


Thursday, April 17, 2014

What I learned from having PUPPPs my first pregnancy

If you read my first post, you know that I had hoped that I had survived PUPPPs and wouldn't have to think about it again. Not true.

First, other people do get PUPPPs. Less than a percent of pregnancies still means many people. Turns out a childhood friend has suffered through it and I was able to support a college friend who suffered through it and gave birth this year.


Knowing that I have it again for this second pregnancy has pushed me to use these next few months of itchy sleeplessness to reflect and share so that others who find themselves with PUPPPs know they are not alone in their itchy nightmare.

With that in mind, here are some things I learned the first time.

First, I had PUPPPs much earlier than I realized. Around 32 weeks I had itchy stretch marks. Like really itchy. I asked some other moms if they had itchy stretch marks during pregnancy. They said sure, once in a while. I asked if they had it to the degree where they would involuntarily itch because it was impossible not to? No, they said, not that bad, but sometimes it was itchy. However, it wasn't until the red itchy stretch marks became raised red and spreading that I realized my itchiness really was different.

Next, I didn't really want to have a problem. And an itchy stomach didn't seem like the worst type of pregnancy problem. So I started to explore what was going on and trying to figure it out, but I was busy at work, tired from not sleeping comfortably and preparing our house for a baby. My motivation to figure out what was happening increased as the severity of my symptoms increased.

Calling the nursing line for help was the first step for me. They suggested calamine lotion, aloe or Benadryl. I started to treat the affected area, but it seemed to get worse not better. Then it leapt to my thighs and worked its way up my chest. The suggested items didn't seem to help it. I tried Sarna anti-itch lotion and it got even worse.

When I couldn't sleep one night and felt like peeling off my skin, I got up. When I looked down at my body I was horrified to see what looked like boils or raised lesions rapidly spreading across my torso and legs. It was one of the weirdest things I have seen on my own body and very alarming. I did the dangerous thing and looked to the internet for help. I typed in pregnancy rash and up popped PUPPPs. It fit my symptoms exactly. It gave me some peace to know that whatever was happening to me had a name, was known and others had gone through it.

And yet...the rash and raised red welt-like things kept spreading. By morning they were between my fingers and toes and on every part of my body. My back was a little less affected and my face and neck seemed unaffected.

I called the nursing station again and explained the alarming spread of my symptoms. The nurse said a pregnancy rash was quite normal and there were no appointments available before my scheduled appointment in two days. In the meantime, I was to rest (um, sure, that's easy when your whole body is on fire) and apply topical creams to relieve itching, but there was no reason to keep calling or get in sooner.  This, ladies, is a learning point for me. I should have been a better advocate. In the moment I was in too much pain, too tired and too disappointed to do much more than hang up. And with that particular nurse I may have gotten no where. But I should have called back and asked for someone else to hear my pleas. Someone else may have at least gotten me in sooner so I wouldn't worry as much and feel so abandoned in my agony.

So I turned back to the internet for more ideas on relief. I tried pine tar soap (good for 15 minutes relief for me), coconut oil (3 minutes relief), aloe (5 minutes relief), calamine lotion (hardly any relief), Sarna (made it worse), and oatmeal baths (dirty bath, no relief). I finally did find my longest lasting relief (up to 45 minutes) from a lukewarm bath with salt and baking soda. 

Gradually the intensity robbed me of the ability to get any sleep at all and drove me to stay home from work and simply lounge with as little clothing as acceptable and take baths for relief. 

When I finally got my appointment with the doctor, they were very unhappy with their nurse and very apologetic. They noted my rash was terrible and should have been immediately addressed and would be thoroughly addressed now that I was in their care. They tested me to rule out any liver dysfunction and more serious issues. They stress tested the baby. Thankfully the baby was healthy and doing well (a great relief to me). They felt that my case was very severe and I would be unlikely to get any relief outside of delivering the baby. The appointment had been with my nurse practitioner and they called in the doctor on duty (not my regular OB/GYN). His counsel was for immediate induction. 

At that time, I felt I wasn't in a good place to make the decision. I had not come prepared to the appointment to be admitted to the hospital and have a baby right then. I was severely fatigued and my regular doctor wasn't available for consult for a couple days. My poor husband was very supportive of doing whatever it took to get me more comfortable but also felt like we needed to go home and get our bags for the hospital and such. So we took the steroid creams and prescriptions and headed home to get packed and get as much rest as possible. We set our appointment with my regular doctor for several days (5, I think) later when I would be at 39 weeks.

Looking back at it now, I would have showed up at the clinic in my discomfort and made a nurse tell me to my face that I didn't have a serious problem. Secondly, I probably wouldn't have been so stubborn about making it to 39 weeks. That time between 38 and 39 weeks was miserable. And in no way helped me meet any of my other goals for birth. It sapped my remaining strength and turned my body to new shades of red and bloody that I never hope to see again. But this is me. I had an extreme case that is not the usual for most suffering from PUPPPs.

But in case you are suffering PUPPPs and you do have an extreme case, I share this so that you know you are not alone and what I learned from going through it myself.

Next, I will share how PUPPPs impacted my birth experience.

Wednesday, April 16, 2014

My introduction to PUPPPs

On May 22, 2012, I wrote the following:

Until a few weeks ago, I had never heard of PUPPS: Pruritic Urticarial Papules and Plaques of Pregnancy. Plague seems like the key word as it is basically a painful rash experienced by less than 1% of pregnant women in the last several weeks of pregnancy.  There is no cure and the best way to alleviate symptoms is to have the baby.

For me it started around week 36 as itchy raised red stretch marks around the belly. It stayed confined to my belly until week 38. Then, overnight, it spread across my body from neck to toes. It was alarming how quickly it spread. When I called the doctor’s office, the nurse told me this was quite common and to take some Benadryl and calamine lotion and then see my doctor at our appointment scheduled in two days. I did take some time to convince her of the alarming spread, but was left with reassurances that it was all quite common.  I spent the next two days in agony, the kind where you want to peel off your skin. That is when I googled pregnancy rash and first got the name for this condition - PUPPPs.


PUPPPs on my hand and arm

When I saw my doctor she was not happy with the nurse who spoke to me on the phone. From that point on, I never heard a practitioner who didn’t say severe or extreme before mentioning my PUPPPs. The doctor recommended immediate induction as the only way to combat the rash is to have the baby. A stress test showed that baby was still doing just fine. Other tests ruled out more alarming reasons for the rash. I wasn’t quite ready for the induction option as I wanted to make it to 39 weeks. So we made a plan to come back on Monday when we would reach 39 weeks. The new drugs from the doctors didn’t provide any more relief. Lukewarm baking soda baths were about the best I could do for temporary relief. This continued itchy pain meant that I was unable to really rest. Knowing that could not go on for long, we packed our bags and went to the doctor on Monday. They gave me the option to keep toughing it out, but highly recommended induction. However, the birthing unit was a bit busy so we were asked to come back to the hospital later that night. 

 

We were admitted at 6pm. I really liked the care I received at the hospital. It is a teaching hospital and my case of PUPPPs provided a teachable moment. Again all the doctors remarked how this was the worst case or one of the worst cases of PUPPPs they had seen. About 80% of my body was raised red and bubbly. I was more red than white.

 

Fast forward to our daughter being born on Wednesday just after midnight via emergency c-section (a story for another time).  It was a wonderful time as we celebrated the birth of our daughter, the beginning of a new chapter in life and the end of a long labor ordeal. As for PUPPPs, it immediately stopped spreading which made me very happy. In the first 24 hours after birth the rash receded with remarkable speed. It didn’t fully go away, but the difference was marked. By the second day, the doctors were coming back and very amazed at how the rash had receded.  By the third day, itching was not my most severe symptom and I finally became more physically aware of the fact I had major surgery. 

 

However, on the fourth day as we headed home, my milk came in and the rash reappeared with velocity. Fortunately the reach was not as severe, and with the baby out, I was able to take some stronger steroids and antihistamines to combat the rash. While the drugs have helped in coping, I remain quite itchy to this day.  I remain hopeful that it should clear up about 6-8 weeks after the birth.

*UPDATE - I had itchiness until I weaned my daughter around 7 months. It was not nearly as bad after the first couple months, but it was a factor in my decision to stop nursing. Thankfully, it cleared up as my milk dried up.*
One of the small nice features of PUPPPs is that it usually does not go for your face.  So with long sleeves I simply look like a version of myself who has an itch. 

 

To anyone else who has or had PUPPPs, I feel for you and can relate. I wish I didn’t know about PUPPPs, but all in all, I had a healthy pregnancy and we got the end result we wanted – a healthy baby. Can’t wait to put this PUPPPs chapter behind me.