Hi everyone, im just curious to know if there are alot of patients with this disease and also lupus, that take a daily steroid along with the daily Plaquinel ? I take prednisone 5 to 10 mgs a day and without it i feel ten times worse…
Niki,
Yes, I also have to take the prednisone with the other medications or I hurt pretty badly and cannot keep up with my children or enjoy life. I don’t like having to take them; however, I would imagine many of people are in the same situation.
I’ve had times where I have tried to wean myself off the prednisone, but I go right back into flare-ups. I hope this helps ease your mind a little bit.
I think I could benefit from a small dose, but my doc has not ever suggested it. I know I took it for an allergic reaction once many years ago and felt like a new woman. I wish we had better docs here.
Hi, I'm taking Prednisone right now for Irritable Bowel Disease, and it helps me in all aspects of my body. I'm going to be sad when I stop it. I am waiting to hear from my insurance to see a new Rheumy doc. My last one, I didn't care for much. I am hoping to go to UCSD Rheumy. I was on Plaquenil for a week, and I couldn't stop sweating.. Are there any more medications that help with Sjogrens?
I have been on prednisone 15mg for ten years…get your teeth checked…stop eating dairy…eat lots protein…eat small every 3 hours…drink water…it comes and goes…stay strong…
Too laten my teeth! Lost them about 6 years ago. But the other advice I’ll take. Thank you!
Hi everyone! What helped me tremendously with dry mouth is taking salagen 4 times a day
Also it’s very important if you are not satisfied with your doctor find another. I switched my lung doctor because I kept on getting thick mucus in my lungs that would always develop into infection My previous lung doctor would say its shogrens that’s causing dryness in my lungs not true. I switched lung doctors and was diagnosed with I terminal lung disease caused by polymyositis he had to put me on imuran I was only having 49percent lung function I am on oxygen at night and during the day as needed The imuran takes approx 3 months to get a full affect. I have shogrens polymyositis. Dermamyositis and RA predisone I was taken off too many side effects for me My blood. Pressure was out of control causing more problems. Long story short it’s very important to get complete blood work every 3 months on these meds If anyone here has problems with lung inflammation I would like to listen to their story to share. I will pray for the power of God to heal us all! Have a blessed day !
Long term prednisone use, even at low doses has some major long term implications. I’m wondering how well managed you are. I have psoriatic arthritis as well as sjogren’s, and have never used long term steroids. I have just started a biologic to deal with progression.
And I do use evoxac in addition to restasis, plus plaquenil, leflunomide, diclofenac and now enbrel.
Hi
This discussion is so current to what is happening in my life right now, I'm very glad I saw it! I have primary Sjogren's, RA, fibromyalgia, and TN caused by the Sjorgren's. I have been on Plaquenil and at least 5mg of Prednisone daily for 2 years. The Prednisone has been as high as 40mg during a flare. My rheumy is set on getting my off and I'm all for getting rid of it, if only there was an alternative. I have had flare after flare for the last 5 months. February was the worst, I only left the house twice and both of those times it was for lab tests. Everytime I go below 5mg I have a major flare. I'm on ten right now and have to reduce tomorrow. Frankly, I'm scared. I can't do this much longer. I've been sick for 12 years and this the first time I've been truly depressed.
I've been thinking of trying biologics but am scared of the cancer risk as I have just reached my 5 year cancer free date from ovarian cancer. What's worse the Prednisone or biologics? Honestly, I haven't done as much research as I should because my neuro has greatly increased my meds for the TN and I honestly cannot think. This message is taking a very long time for me to type!
Do those of you who take biologics not take Prednisone? I really appreciate any help you can give me, I'm at the end of my rope, and ashamed to feel this way.
Take care,
Bels
Bels- You asked, "Do those of you who take biologics not take Prednisone?"
I've only taken prednisone a few times since diagnosis 6 1/2 years ago. Once was recently because my knee was super hot and swollen, and that was a 5 day dose pack. The only other time that I went above that on oral prednisone was when I had a major flare related to Fifths disease. Plus steroid eye drops, but again, a month at most.
Steroids are great as a short term fix, but they really mess you up long term. Biologics have a lot of risks listed, as they have to list all of them. I just started my first biologic for my primary disease, Psoriatic arthritis, and I'm very happy to be on it. Now I just need to wait and see if it works. But long-term prednisone is NOT a good option.
Yes, was on 5 mg of prednisone for 5 years then developed cushings syndrome which was very hard for my doctors to believe but it happened. I am now up to 10 mg daily. The problem for me is that the higher the dose, the worse my eyes get. I then end up on steroid eye drops as well to help the inflammation in my eyes. I can not seem to drop back down to 5 mg as the pain and exhaustion is debilitating. Quality of life and Joy is what I try to stay focused on.
Wow ! HI everyone. I have just recieved a flood of information about Sojogrens and I appreciate all i have just read.
Newly diagnosed and not sure which way to go to find more about this, I started with the internet and found this website.
I have much intense pain in my eye balls much dryness through out my body and fatigue. I am a survivor 12 years yea!
stage 3 breast cancer,Coloitsis,IBS, RH arthritis with fogging brain, loss of balance from time to time,sore muscle and swelling.PAIN lots of pain.
i am so excited to have the forum to come to for answers. I am using Refresh Plus eye drops, my dr. prescripted
methatrex but i am very reluctant to use this medication.so havent for a couple months.I am seen that vitamin D,flex seed
is helpful and a multivitamin. I naturally prefer veggie nuts,fruit and pasta but add meat a couple times a week to my diet.
I stopped all carbonated drinks and feeling much better for that!
I will discuss will my RH doctor more about Sojogrens as this is a new diagnose.Thank you for all your comments and
helpful information.
sadie
Kaz, Thank you for you comments. I will talk with my phyisican about this.
I appreciate your help.
Best Regards, Sadie
Kaz said:
Sadie, with your eyes you can try temporary ductal plugs to see if you get relief from that. I did this for a while before opting to have the ducts lasered closed. The temporary ones are made of collagen and dissolve around 6-8 weeks. Having temporary ones also allows you to see whether you can handle plugs without infection. You still need to use drops and gels in your eyes but it helps to retain the moisture. So ask your opthamologist about this option.
I use refresh drops too plus Genteal eye gel.
In regards to IBS and arthritis VitD, Flaxseed oil and also high stength fish oil are excellent! High strength fish oil with no less than 1 gram EPA content for each dosage is required. I use a brand called Ethical Nutrients. 5mls has 1.9 gram of EPA.
I appreciate your response! I learned some valuable information today!
Kaz said:
I do not know how they can say hard to believe - you were high risk developing Cushing's being on it at that dose continuously. Have you had bone density scans done, as you need to be having these yearly? Also have they put you on calcium supplements?
The problem you have now is that prednisone has basically overriden and ceased your adrenal glands to function properly, so when you try to reduce your tablets your adrenal glands are not kicking in to work and you are getting a rebound effect.
Have you now also been diagnosed with Diabetes type 2? As Cushings is generally a precursor for this.
Some things you can do for yourself to ease this are ensure you are not overweight, and eat a more diabetic diet - as in reduce sugar intake. However, you should be assessed first to see whether you have diabetes type 2 first before changing your diet, so please get that checked out.
Here is some information on Cushings as this may help you (if your doctor has not explained how it works) and other people to understand why too much steroid use is very bad.
You need to see a Endocrinologist to work out a plan, as you may have to try to go down to 7.5 mg first for a while and allow body to adjust and then 5mg etc., as jumping from 10 to 5 is actually a big jump when you have been on this for a while, so you are getting like a rebound effect. You should be supervised by a specialist for a tapering down process, and preferrably an endocrine specialist not a rhuematologist. As this is not a rhuematologists field of expertise.
In regards to inflammation of the eyes. consider taking high Flaxseed oil as this does benefit the eyes. Take around 6-10grams a day to begin with, and once eyes feel better one can drop to 6grams. However, if you have a blood clotting disorder of any sort, or are on warfarin etc., you MUST speak to your doctor before starting any supplementing with oils whether that be flaxseed or fish oil.
You also should consider taking high strength fish oil with minimum 1gram of EPA content. You will notice a difference in inflammation if you take this daily. It takes around 6-8 weeks before the real benefit kicks in. But it must contain 1gram of EPA in your dosage as otherwise it will not be effective for your type of inflammation. These are very easy things that one can do to help reduce inflammation in the body.
I am concerned though about the possible state of your bones, so please ensure you have this checked by bone density scan as prednisone leaches the bones of calcium.What is Cushing's syndrome?
Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called hypercortisolism, Cushing's syndrome is relatively rare and most commonly affects adults aged 20 to 50. People who are obese and have type 2 diabetes, along with poorly controlled blood glucose-also called blood sugar-and high blood pressure, have an increased risk of developing the disorder.
What are the signs and symptoms of Cushing's syndrome?Signs and symptoms of Cushing's syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates.
Other signs appear in the skin, which becomes fragile and thin, bruises easily, and heals poorly. Purple or pink stretch marks may appear on the abdomen, thighs, buttocks, arms, and breasts. The bones are weakened, and routine activities such as bending, lifting, or rising from a chair may lead to backaches and rib or spinal column fractures.
Women with Cushing's syndrome usually have excess hair growth on their face, neck, chest, abdomen, and thighs. Their menstrual periods may become irregular or stop. Men may have decreased fertility with diminished or absent desire for sex and, sometimes, erectile dysfunction.
Other common signs and symptoms include
- severe fatigue
- weak muscles
- high blood pressure
- high blood glucose
- increased thirst and urination
- irritability, anxiety, or depression
- a fatty hump between the shoulders
Sometimes other conditions have many of the same signs as Cushing's syndrome, even though people with these disorders do not have abnormally elevated cortisol levels. For example, polycystic ovary syndrome can cause menstrual disturbances, weight gain beginning in adolescence, excess hair growth, and impaired insulin action and diabetes. Metabolic syndrome-a combination of problems that includes excess weight around the waist, high blood pressure, abnormal levels of cholesterol and triglycerides in the blood, and insulin resistance-also mimics the symptoms of Cushing's syndrome.
What causes Cushing's syndrome?
Cushing's syndrome occurs when the body's tissues are exposed to high levels of cortisol for too long. Many people develop Cushing's syndrome because they take glucocorticoids-steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.
Other people develop Cushing's syndrome because their bodies produce too much cortisol. Normally, the production of cortisol follows a precise chain of events. First, the hypothalamus, a part of the brain about the size of a small sugar cube, sends corticotropin-releasing hormone (CRH) to the pituitary gland. CRH causes the pituitary to secrete adrenocorticotropin hormone (ACTH), which stimulates the adrenal glands. When the adrenals, which are located just above the kidneys, receive the ACTH, they respond by releasing cortisol into the bloodstream.
Cortisol performs vital tasks in the body including
- helping maintain blood pressure and cardiovascular function
- reducing the immune system's inflammatory response
- balancing the effects of insulin, which breaks down glucose for energy
- regulating the metabolism of proteins, carbohydrates, and fats
The hypothalamus sends CRH to the pituitary, which responds by secreting ACTH. ACTH then causes the adrenals to release cortisol into the bloodstream.One of cortisol's most important jobs is to help the body respond to stress. For this reason, women in their last 3 months of pregnancy and highly trained athletes normally have high levels of the hormone. People suffering from depression, alcoholism, malnutrition, or panic disorders also have increased cortisol levels.
When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This process ensures the amount of cortisol released by the adrenal glands is precisely balanced to meet the body’s daily needs. However, if something goes wrong with the adrenals or the regulating switches in the pituitary gland or hypothalamus, cortisol production can go awry.
How is Cushing's syndrome treated?
Treatment depends on the specific reason for excess cortisol and may include surgery, radiation, chemotherapy, or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects. In some cases, noncorticosteroid drugs can be prescribed.
Points to Remember
Cushing's syndrome is a disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol.
Typical signs and symptoms of Cushing's syndrome include upper body obesity, a rounded face, skin that bruises easily and heals poorly, weakened bones, excess body hair growth and menstrual irregularities in women, and decreased fertility in men.
Cushing's syndrome is caused by exposure to glucocorticoids, which are used to treat inflammatory diseases, or by the body's overproduction of cortisol, most often due to tumors of the pituitary gland or lung.
Several tests are usually needed to diagnosis Cushing's syndrome, including urine, blood, and saliva tests. Other tests help find the cause of the syndrome.
Treatment depends on the specific reason for excess cortisol and may include surgery, radiation, chemotherapy, or the use of cortisol-inhibiting drugs.
Hi Niki,
I'm so glad the Pred is helping you, I have never been able to tolerate them, the minute I take one, the indigestion is so bad it puts my hiatal hernia in spasms, my costochondritis is so bad, I feel as though my rib cage will explode, and I do NOT sleep one wink the whole time I'm on them, so I get like a monster! Only good thing is the burst of energy in the beginning, I mean I could build a house!
I also have Osteopenia, so they're just not a good idea for me, though my GP keeps trying to prescribe them at times!
BUT, I know that they work very well for most people, and I am so very glad for them!
Wishing you well,
SK
Thank you to everyone for replying to my question about the prednisone therapy for this condition we all suffer but survive through … It’s nice to know that there are many people fighting this fight along with me and im not alone in feeling alone 
SK: And all others that took the time to help me , thank you all soo very much! I also have Lupus and am questioning what other things the doctors have missed as my blood work is just so screwy 
i will follow up and join the lupus group as well … Love to u all! And im here if need be also, for all of u in need of any support i can give
Oh and I do have a couple other questions i may post in a new discussion so please look for it so that maybe you could give me some input on those too;)
Ah Niki, so great of you to offer us all support! You know, having this disease is such a challenge, so little is known by most, so little is done by all! Well, maybe not with every single one of us, but I'd say the percentage is pretty high!
Though I do not have a full dx of Lupus, I belong to the group, as my first dx was 'Overlap Syndrome' where you have all of these different symptoms of more than one autoimmune, but as yet, don't have a full dx on any. I have had 3 brain MRIs, and luckily all were clear, but they continue to suspect SLE. Like I need yet another autoimmune disease! NOT!
I do know that just about everyone you talk to does or has taken Pred and swears it really helps, once they start it successfully, they feel much better! Just be careful, it thins the bones!
Lupus is a very caring site! You should like it there, just don't forget us! Promise?
Hoping you find some lasting relief,
SK
BTW, it was Terri (Tez) who coaxed me into the Lupus group! We met on the main moderator site! Geez, over 2 years ago, at least!
Yes, Niki, please post, I'm sure the entire group will join in, so many wise people here!