I'm new to sjogrens world. My grandmother had autoimmune issues as well as my mother. I have sjogrens too and just started plaquenil six months ago. The only noticeable difference is that my hair is falling out and what is left looks like I stuck my finger in a lamp socket. I feel like I've been run over by a train but I'm continuing to work, if you can call it that. Just wanted to say my hellos and continue reading the posts.
Hi, welcome I am sure you would rather not be here, but I hope you can find comfort in the fact that you are not alone. The hair loss seems to be a common side effect, some people say it levels out after awhile, other continue to get sparse. I know that thyroid issues can cause hair loss also, I have sjs not on plaq but my hair falls out in gobs and the texture has turned coarse and dry. I also have a thyroid disease. And thyroid problems and sjs can walk hand and hand. I would talk to your dr. about maybe checking your thyroid if they havent already. Fatigue is a major effect of most AI diseases inc sjs and thyroid.
Take care and hope you feel better, I do know people say it takes a very long time for the plaq to really take hold. Hang in there.
Welcome!
It is hard when you have such issues but I also wonder if it is the medicine or the disease or if your thyroid is off... Keep reading, there is so much here. There are some things to help with the hair too, you can search in the above right box and maybe find something that would help you. You will find many wonderful, smart, compassionate people here. Good luck and ask anything!
Gayle
Yes, I do have thyroid issues (long before the idea of sjogrens popped up) and my hair was fine. I'm thinking it is the plaquenil. Thank you for the replies and the reassurances. It's nice to know I have a place to come to for support.
lapellegrina40, this is my standard welcome. I hope that it helps you.
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.
Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.
lapellegrina40, welcome from another newbie!
Thank you all!!
Welcome to machio1981, eija, and lapelegrina40, the three newbies!
There is a wealth of information here! I found that out when I first found this site, that i just read and read.
Many of us have found that rheumatologists were the most helpful-- they deal with all sorts of auto-immume diseases. I went to 3 rheumy's and family GP before i found one that was persistent and really wanted to find the cause of my problems. I have a good GP, but this was outside his expertise, so he sent me to the rheumy that figured it out.
Keep searching and reading--you are your best advocate.
I'm on my 3rd rheumatologist. The only one to truly listen and give treatment a shot even my bloodwork has been borderline. I'm on plaquenil (almost a year now) and the only thing I notice is my hair turning to straw and falling out. I know plaquenil is really to keep sjogren's from progressing (that coming from the doctor) but I'm not feeling any better. In fact, I'm noticing more and more days of "just shoot me now!" Is there a time to call it quits besides the obvious inability to tolerate it? Is there another medication after plaquenil?
Try these two Alpha or R Lipoic Acid, Acetyl-L-Carnitine, with or without Plaq.
I already take those. Along with CoQ10, B12, Omega 3, liquid vitamins and minerals. I've noticed most everyone here puts their pharmacy list in their signature line. As soon as I figure out how to do that I will. I'm just wondering if I should hang out a while before calling it quits on the plaquenil. I admit I'm a tad bit vain when it comes to my hair. It took me 8 years to grow it out (below my shoulder blades) and I'd kinda like to keep it that way. ::)
Try the tones on this link for hair loss: http://www.chakraforce.com/Tonations.html#6.
Play each tone in sequence for three min, twice per day for a month.