CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Side effects from Reclast infusion

    I had the Reclast infusion last Monday the 11th. My chest started feeling tight and wheezy that night. The next day my shoulder joints and lower neck started hurting/aching. Then by about Thursday or Friday my left thigh started having a burning feeling in my femur. My shoulder joints and lower neck were still hurting/aching as well.

    Fast forward to yesterday and the femur burning feeling was constant and I couldn’t ignore it. Sitting still makes it worse because my brain can’t ignore it. Walking or doing the “baby sway” while standing helps. When I’m sitting I have to keep moving my leg by readjusting often. Last night it came to a head when I couldn’t get comfortable by doing all the things. I was very uncomfortable. It made me very antsy and easily irritated because I couldn’t get comfortable at all! I sent a message to my doctor through the patient portal at like 9:30pm. I took Benadryl last night as well because I was itchy.

    I woke up with dry lungs, dry sinuses and dry eyes because of the Benadryl which is why I hate taking Benadryl and use it as a last resort. I hadn’t heard from my clinic by like 9:30am so I sent an email to my nurse because I needed answers and a game plan ASAP! My body is having an inflammatory response, obviously.

    I received a message from the pharmacy gal that is in my clinic saying she was in a meeting but would be calling me shortly.

    She later called and got all the details on what’s been going on and what my thoughts were. We decided on the following game plan…starting 40mg of prednisone tomorrow morning for at least 3 days, if there’s no improvement I will either stay on 40mg or go up to 60mg until there’s improvement then taper off of prednisone. Starting Pepcid 40mg twice a day for a week. We are using Pepcid for its histamine blocking abilities and not Benadryl. Sometimes medicines are created for a certain thing/ailment and through patient trials it is discovered that it actually helps other ailments which is the case for Pepcid. It’s not just an acid reducer. I started Aleve (Naproxen) every 12 hours. I’m adding 2 extra strength Tylenol every 6 hours as well to try and get this pain more tolerable and to go away. They also want to make sure I’m very hydrated so I’m drinking extra electrolytes like Propel packets that you put in a water bottle.

    If I have no improvement by Friday at the earliest they want to check my calcium levels. Reclast basically makes your body pull the calcium in your system into your bones to make them stronger, in layman’s terms. Haha. If my calcium levels are low we can address that at that time.

    Most people complain about bone pain in BOTH legs as a side effect of the Reclast. Well as we know my body doesn’t play by the rules and it does nothing normal especially when it comes to side effects to meds. So I’m not very surprised that it has gone this way but of course I was hoping it wouldn’t have gone down this road and I would have tolerated it well. Reclast is a once a year infusion. Once I get on the other side of all this, we will discuss whether or not I’m going to do it again next year with some sort of prep like taking antihistamines and/or prednisone to help combat a inflammatory respy or going another route all together. I’ll update after I’m all better hopefully!

    Until next time…

  • Life update (osteoporosis and perimenopause…oh what fun)

    I hope everyone had a great Thanksgiving. Mine was fantastic! I thought I’d update on a few things since I finished the oral Cipro and prednisone.

    I am feeling better than I was when I started the antibiotics and prednisone. I’m coughing less and wheezing less thankfully. I do still have to frequently push my air out to force a deeper cough to try and loosen the rattle and wheeze. It doesn’t always work but I keep trying of course.

    My bone density results showed that some areas have gotten worse and progressed to osteoporosis. Other areas showed a little improvement but still considered osteopenia. I have already taken the oral (once a week) Fosamax for the recommended 5 years to help with osteopenia and hope it didn’t progress to osteoporosis. There’s no real research that shows taking the Fosamax longer than the recommended 5 years does much. My doctor wants me to do the Reclast infusion once a year. For that I’ll go to the infusion clinic where I go to get my port flushed once a month. It only takes about 10-15 minutes to infuse. I’m waiting for insurance approval and for the infusion clinic to call me to schedule the infusion.

    Next order of business…I had an appointment with my gynecologist on Friday to discuss perimenopause/menopause. I’ve been experiencing many of the perimenopause symptoms like…hot flashes or as I like to call them “hot seasons” because when I’m hot I’m really hot and it lasts forever, peeing more frequently, trouble sleeping, waking up early (I’ve become a morning person!), trouble with memory, hair loss/thinning and of course messed up periods (I had 3 periods in 7 weeks and now I haven’t had one for 4.5 weeks).

    I bring up perimenopause/menopause because it is very common for women with CF to go through menopause at an earlier age than non CFers. I’m 43 and here I am!! There’s not a lot of talk about menopause and what to expect. Yes, everyone knows/talks about hot flashes, messed up periods and mental health changes but other than that you don’t really hear much.

    I got my lab results back and they do show I’m in perimenopause. I have a follow up appointment at the beginning of January to discuss the next steps. We did talk a little bit about it at my last appointment. She did say that the typical treatment is to do a low dose birth control to help regulate your period to help the transition into menopause smoother. I said as long as taking birth control won’t “trick” my body into having a period when it shouldn’t be then I’m good with it.

    I take this getting older thing with a smile because I didn’t think I was going to be around long enough to experience menopause. Most women complain about getting old…the grey hairs, the wrinkles, the reading glasses, menopause, etc BUT that’s not me! I’m LOVING getting older and being able to do all the things that I didn’t think I would get to go through. As you know, I love my birthday because it means I’m still alive to celebrate them. Many people don’t get the chance to grow old so make sure to be thankful to be alive.

    I’ll update after I get the Reclast infusion and I make a decision on what we’re going to do for the perimenopause as far as what birth control, etc.

    Until next time…