Medical mystery: Collection of weird symptoms

[fel]

I am hoping some of the smart people on this forum can help us figure out what is going on. DS is 18, dx CF by sweat chloride, genetics are unclear.

He has had 3 sinus surgeries and has frequent sinus infections despite high compliance with sinus rinses, etc. He is currently culturing 4 microbes in his sinuses -- none that need treatment we are told unless he shows more serious symptoms. His lungs seem clear at the moment. He does nebs and airway clearance twice daily.

A few months ago he was diagnosed with low cortisol, adrenal insufficiency, thought to have been caused by use of Flovent and Budesenide. Symptoms from that were skin spots (like freckles) on his legs, severe fatigue, dizziness, and sudden weight loss.

He now takes hydrocortizone for adrenal insufficiency, but a few weeks after the adrenal issues were diagnosed he began to get severe joint pain in his wrists (spreading to his fingers) and his ankles. This pain is only getting worse over the last few months, and he is extremely debilitated. He is a college student but can barely type. Obviously he is not really exercising.

An orthopedist has done x-rays and ruled out an ortho reason for the joint pain. He can't get in to to see a rheumatologist for months.

My question: Are all these symptoms related to CF? Has anyone ever heard of this kind of collection of symptoms? Any insights would be appreciated.

 

[Suzanne12]

I am Suzanne, mom of a 14 year old with CF. I am responding to your message because over the last 3-4 weeks she has also been experiencing debilitating joint pain. We are expecting bloodworkback in a few days, but no one seems to understand it. The only medicine she takes for her CF symptoms is Pulmazyme. Please let me know if you find any answers.

 

[fel]

Suzanne12-- please let me know if you learn anything as well. We are doing bloodwork also, probably next week.

 

[carolinen]

you can get a reactive arthritis when there is a high burden of infection in the body-so maybe it's related to his sinus infections? Might be worth asking what your doctor thinks of this idea. In a reactive arthritis the bloodwork can come back quite normal. I have had reactive arthritis, and it goes away when my lung infections come under control and flares up when I have high levels of infection. Hope you find a solution - I'd push for that rheumatology appointment sooner rather than later

 

[fel]

I should mention he was also taking Levaquin when this started. He has been off it for well over a month. Could that be the cause? I developed peripheral neuropathy from Levaquin but it went away when I stopped taking it.

 

[MissAlexsBP]

We reposted this on our social media accounts and a couple people responded: "I don’t have cf son does but I can tell you I took Levaquin once and will never again . I was sick as a dog on that had to stop after three days . My wrists and ankles hurt so bad and dizzy also. Pharmacist said it was levaquin." Another member wrote: "Levequin can cause tendinitis. I have found that Lack of appropriate nutrition including vitamins , calcium ,and magnesium can cause pain and stiffness."

 

[fel]

Thanks MissAlexsBP-- we are actually now fairly certain it is the levaquin that caused the wrist pain, since the pain began within 2 days of the levaquin. Unfortunately that was two months ago and the pain persists.

 

[bobanny]

I struggle with what my dr.'s call CF-related arthritis. It has been known to flare up when I start IV antibiotics or more recently, after I'm just finishing on IVs...and weaning off prednisone. My rhuematologist perscribed Celebrex which I'm hoping will help with this! When the pain first started, I struggled with random achy-ness in joints that would move around to another part of my body the next day. It took them two years to finally name what it was. I was put on Plaquenil and take some high quality vitamins. The combo of those two seem to keep the infllammation at bay (it was happening more even when my lungs were not flared up.) If I miss taking one for a couple of days, I can feel the inflammation return. I hope that helps.

 

[fel]

Thanks bobanny -- when you say high quality vitamins -- what does that mean? Is it a particular mixture? He already takes vitamins and a food supplement to keep on weight.

 

[stylecomfy]

Hi, I was reminded of this thread which includes various people's account of suffering joint pain and swelling and thought it may be an interesting link in this context.
http://forums.cysticfibrosis.com/sh...rash-joint-pain-swelling?highlight=joint+pain

I also have this 'cf related arthritis' but mine was not caused by Levaquin. Similar to bobanny, I'm now on celebrex to help with the inflammation (at times I use ibuprofen) and I also feel vitamins has helped the flareups diminish where they now occur very seldom (What worked best for me was a daily concoction of green, carrot and beetroot concentrated juices that I got from a health food store AND keeping a good check on the CF vitamins ADEK and calcium, I now regularly get my vitamin levels checked whereas 10 years ago I didn't really think they were too important). It may not work for everyone, but for me the nutrition made a difference.

 

[Megan]

Hi, I have had the same type of joint pain. I have CF. There have been times where I was not able to get out of bed because the joint pain was so bad throughout my body. It seemed to come and go in flareups. But I haven't had any issues for 6 years since I started taking mega doses of Vitamin D. My CF doctor believed the joint pain was related to low vitamin levels. I have been taking 15,000 IU of vitamin D every day for 6 years and no joint pain. I have tried several different brands and the only one that gets my levels up is the Jarrow 5,000. I take it 3 times a day with fatty meals. Honestly, it has changed my life. There were times that my hips hurt so bad I couldn't bend over to use the bathroom. Its been 6 years pain free!

 

[fel]

Just want to say thank you to all of those who have written. I will discuss with my son revisiting the issue of vitamins! In fact, Megan, I may start taking vitamin D again myself as I have joint pain as well (Mom to two with CF, so a carrier).