I hear what you are saying, but what options are there. I'm coming into my third week of using prednisone, l think l have forgotten what its like not have broken sleep and some times l feel like l'm talking fast.
I started prednisone in April when my blood platelets were down to 60. I have glaucoma also so make sure my eye pressure is measured every 6 months. I started at 15 mg. Side effects were awful, tremors, hot flashes at 70 years, weight gain, and purple marks on my skin, but my blood count went up and my pain in bone and muscles decreased. every 3 weeks lowed the dosage. Was down to 7 mg but pain was bad again. That time the RA doctor put me on 10 mg, and my platelets were normal. this time lowered the regular 3 weeks, this time down to 7 and not so much pain and side effects are not so severe, but platelets are dropping. now I have to make the decision to go down 1 mg or stay the same dose.
l'm on 50mg of prednisone a day with other meds. l feel like my body has been taken over with a mixture of different side effects. Went to the eye specialist on Monday he plugged the top of both my eyes, l had the bottoms plugged last year, he also changed one of my eye drops and told me that the veins in my eyes keep breaking due the dryness in the eyes, so we will see how it goes. I have an appointment with the ear, nose and throat specialist this Tuesday for my swollen glads in my neck area, and a appointment the following Tuesday with the lung specialist to follow up on the cells they took a couple of weeks ago from my lungs. I'm very grateful for all the medical support l'm receiving, but this is all like a slap in the face with a cold flannel, l feel some what traumatized, sorry don't mean to sound like a drama queen, just wondering if my feelings are normal. Up until a 3-4 months ago, l only had dry eyes.
The prednisone has helped brain fog, but still have the buzzing in my head. my glands still swell up but an average of once a month now. Feels so much like mumps. Do not just stop taking your prednisone. You have to go off of it gradually. My eye doctor at Mayo has me on latanoprost drops in both eyes for eye pressure. during the day I use Refresh Cellium drops twice a day in both eyes, and Genteal Severe drops in the day when my eye hurts. I mostly use in the left eye as it does coat the eye so you can't see for around an hour after you put the drops in. This is so good for the pain. mayo put eye plugs in both lower eye pores, but my left one kept coming out, so they lasered it close.
As a reminder, long term use of prednisone can have some serious side effects, and the use of it needs to be carefully considered. There are disease modifying meds that are being used for primary Sjogren’s as well as for other autoimmune diseases. For some people looking at needing better control, this may be something to talk about with your doctor.
For severe dry eyes, many people do get their eyes plugged. There are also management tools that people can use at home. For example, my regimen includes a daily eye scrub, warm compress, and night time gel. It doesn’t make things perfect, but it definitely helps out the situation. Many people also use drops throughout the day, preferably preservative free.
It’s a real challenge, especially for people with symptoms such as swollen glands, joint pain
I took prednisone in a 7 day pack that started at high dose and tapered down. It improved my joint pain and fatigue significanly. No welling or bloating. I have heard that many people have negative side effect. The only negative for me was feeling too wired up. I also started Hydroxychloride 350 mgs. I think it may be helping. It can take as long as 3 months before I see full results. Keep good comunication with your Dr as we all have different response to RX.
· Lisa D · said:
\
Thank you Mary for your input. I have never taken Cortef.
Prednisone was my first oral corticosteroid, and I was prescribed it last week during an awful flare. Within three days of starting the medication- I became so swollen and bloated. That's why I was curious about other people's experience on corticosteroids.
Mary Powers said:I have been on Cortef for the most part as I gained much too much weight on prednisone. The down side is I have to take it 3x a day and it is not the powerhouse prednisone is so when I am hospitalized for any type of adrenal fatigue/crisis I am given prednisone for a short time, anyway. I prefer Cortef. Less weight gain, less bloat, less edginess if I have to be on a stress dose for any length of time (such as during an illness).
I did steroids for 2 cycles recently MAJOR weight gain.
I started out in April 2015 with 15 mg of prednisone, and am down to 5 mg. side effects were/are trembling, hot flushes, major weight gain, easy bruising and my freckles turning blue. I am 70 years old, and the lower dose is easier for me to tolerate. Does anyone with Sjorgens have kidney stones? My doctor says I am not drinking enough liquid. I am drinking an average of 15 cups of liquid a day.
I don't have kidney stones, and luckily have ever had them.
Thanks for the info on your steroid side effects.