This is my first post so bare with me please. I was diagnosed with lupus 8 years ago, always carried the sjogrens antibody but never had issues with the symptoms until recently. My C3 & C4 were very low so rheum DR bumped up my prednisone from 10mg to 60mg in November. Stayed on that dose for a month but that's actually when I started having the sjogrens symptoms and was going "crazy" on the Pred so he then had me drop to 40 & 20 within the next month. It's only the end of Jan and I'm already back down to 10 per dr orders. Seems too fast to drop down that quick from what I have read. For several months I have had ALL the symptoms of adrenal fatigue but he disagrees and says its just my body adjusting. Has anyone had these symptoms before....extreme anxiety, irritability, depression, fatigue, insomnia,etc..? Was doing so much better just dealing with the lupus pains and it seems that the huge increase in MEDS activated symptoms I've never had before. Would take the physical pain any day over this crazy mental state this has put me in. Just wondering if anyone else has experienced prednisone withdrawal or adrenal fatigue and are there any other solutions besides the obvious increasing for a while and dropping down slower....trying to avoid more MEDS because it seems like this is just a vicious cycle and they cause more problems than the illnesses themselves. So, are there any natural solutions to help alleviate these symptoms until my adrenals decide to kick in again? Have any of you been able to quit prednisone completely?! Regular dr gave me low dose Valium for the anxiety because I was "crawling out of my skin" but it seems to have made the depression almost unbearable! Not sure which is worse! Any suggestions or advice is greatly appreciated. Thanks!
Let me first say welcome to the forum. I had a friend that used Siberian Ginseng tea for a short period. You should check for counter indicators, Drug interactions and side effects of all supplements, and drugs that you use or are requested to use. Here are my standard tips:
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.
With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three Ss of Sjogrens.
Hi Loubell77 - welcome.
I don't have any experience with Prednisone, but just wanted to welcome you to the forum.
There is a wealth of information here - if you put key word(s) in the search box to the top right of this page, it will take you to previous threads about that word(s). If you can't find what you're looking for, by all means post your question, comment, etc.
We're a forum made up of both female and male, young and old (and everywhere in-between), from all walks of life from literally, around the world.
Again, welcome and I hope you find this site helpful to you - we have several members who have both Lupus & Sjogren's.
Bucky
Welcome to this site. I am not a prednisone expert, but do know from experience that taking different dosages can require different rates of taper. The rule of thumb per my neuro is that if you take say 30 mem of prednisone for up to 5 days you can drop down and taper quite rapidly. After that it is a slower process.
I get "crazy" on prednisone also so I have learned to never take anydose higher than 30 mgm for a period of time and then go down to 20 mgm as soon as feasible. My docs have been very good about listening to me regarding this matter.
I was advised to go on 100 mgm a day for one month in order to save my hearing in one ear. I refused cause I told the doc that I would probably be able to hear out of that ear, but I would be too crazy to appreciate it. Everyone reacts to this drug differently.
I don't know how long you were on the higher dose and I don't know how long it took him to get you down to the 10 mgm again. You may want to talk this over with him and if he is not listening to you then a second opinion may be in order. You may need to enlist the help of your general practitioner in hopes that there can be communication between the 2 doctors.
So often when we feel that something is not right it is easy to get"adamant" and some doctors do not respond well to this. I know this, because I seem to always go to the doctors who take offense if I attempt to voice an opinion. Thankfully, I have now gotten better doctors. Good luck with this. If it is any comfort, it is really good that you are at least on the 10 mgm cause I would think that your body may catch up with the 10 mgm dose eventually.
I would think that you might even be over the hump as if anything really bad was to happen I would think that I woulf have happened sooner than later. Acute issues and chronic issues are 2 different things though. Good luck. Irish
Hi Ms Loubell :) This forum of caring and wonderful people has been my haven for a few months now, so welcome! Check in often. I have the same issues with Prednisone: mental "freak-out"/emotional mayhem and more that I won't describe here. I will not use it ever again. Please keep us posted!
Thanks for the replies everyone.
Depression is definitely associated with prednisolone, and certainly when tapering. Sometimes it's difficult to tease apart if the illness is causing the depression but for me, the depression always passes after a taper and I just remind myself it's just a side effect and wait. I think it's something to do with your adrenal glands trying to kickstart and produce the natural steroids again so you're left with a deficit. I can also get quite lethargic. My doc cut me down from a quicker taper to tapering 1mg a week and it's worked beautifully. Now I'm about to go under 10mg I have to taper 1mg every 2 weeks. It may be you need a slower taper, my doc says this is really common.
Speaking as someone who has tapered from 50mg to 10mg and still tapering :)
Lesley,
Thanks so much for the response. That makes me feel a lot better, not that you are going thru it too, just that I'm not alone with it. Best of luck to you and your continued tapering!! :)