Hello Everyone! This is my second day visiting this web site and am very excited to have found it. I am a 47 year old women whom teaches Kindergarten and lives in California. I have just been recently diagnosed with Sjrogens. Still in the denial phase but determined to learn as much as I can and willing to fight this disease. My question for the day is: Is there anyone out there who has done research one Alternative or Complimentary treatments. It appears that the number one drug of choice for western docs is plaquenil. I have been on it for a week now, but want to explore other options as well. Does anyone go to a Osteopathy Doctor (treats the whole person versus just the symptoms with drugs)? Also any resources you have that would help my hubby gain insight about my disease which he no longer believes is in my head! Would love to hear from you.
Sincerely,
Patzi (dazed and confused)
Welcome Patzi, glad you like the forum.. It can be very informative coming here, very comforting, very friendly, and sometimes even rather heart aching.... Your exactly where all of us were at the beginning of our journey...
Sorry I can't answer your specific queries, but I can say someone will be in touch and probably will be able to answer..
Your husband will also learn a lot by taking a look here too, I have learnt most of what I know by finding this site some years back ... They are a great bunch.. Best wishes Dolly.
Hi Patzi,
If you look at the top upper right hand corner of this page here you will see a link called Book Reviews. If you click on it, you will go to the books section and here you will find many titles with a brief description about each! I would say the first two on the list are very popular with many people...but check it out for yourself! These books will help both you and your husband with understanding all that you are going through!
As far as your other question...no I don't see an Osteopath, but I do feel like the chiropractor, PT, the warm therapy pool, and massage therapy have helped me so much in conjunction with my regular medications.
Hi Patzi-
I've been dx with Sjogrens for two years. I see a rheumatologist every 3 or 4 months and my GP is also very involved in my care. He is an osteopath. I take Plaquenil and methotrexate and did take prednisone for a year and half and then was able to drop it.
My doc(GP) just prescribed some supplements (he sells them) which are Adreset and D'HEA. I'm not sure how I feel about drs selling vitamins etc, but he is a good doc and i trust him. I very occasionally take advantage of his "cracking" skills if my back is bad. I don't have to go to a chiropractor. My GP is a young, progressive guy. Lucy
patzi, Welcome to our site. I just want to mention that supplements are really pretty much of a no-no with autoimmune diseases. You will need to check with your doc, however, so many of them can rev up the immune system and that is just the opposite of what you want to happen.
Also, just let your hubby sit down at the computer and start out on the topics and go through what he chooses to read. He will soon become educated on Sjogrens--the disease that keeps on giving as a few of our members refer to it. Irish ;D
Hi Patzi, I went to a naturalpathic shortly after my diagnosis last year. I'm also in California by the way. Anyway, I was thinking I wanted to combine Western and Eastern medicines but the things he wanted me to take were totally contrary to what my rhumy was doing. For example he wanted me to take vitamin/herbs to boost my immune system but at the same time my rhumy has me on Cellcept to supress the immnue system so just that alone made me feel that he didn't really understand the nature of treatment for autoimmune diseases. I'd say tread lightly and don't put total trust into these things.
Steve
Hi Patze-
I also see a rheumatologist every 3-4 months and have a very active GP on my case. Neither of my doctors is an osteopath, but I feel they both look at me as a whole person, not just a list of symptoms. I also have a pain doctor involved because I started down this road about 16 years ago with a back injury, have had multiple surgeries and multiple pain.
Like Irish, one of the first things I learned with my Sjs diagnosis was not to take any supplements or immune boosters without running by my rheumatologist. The last thing we Sjoggies need to do is rev up our immune systems more than they already are.
As for alternate therapies, I also see a chiropractor, a massage therapist, do warm water therapy. I also have a therapist that I've seen on and off for almost 15 years. My husband has asked if I'll ever be "cured", but it's not a cure he offers me as much as an outlet for my stress and, at times, an assurance that I really am sane. My pain doctor has recently been suggesting hypnotherapy to help me deal with the higher level of stress I've been going through with my pain elevated, my husband temporarily laid off, and most importantly, my son deployed to Iraq. It's not covered by my insurance, so he's going to talk to the hypnotherapist -who he himself has used - to see if he'll see me on some type of sliding scale. If it helps my pain and my ability to deal with stress, is approved by my doctors, I'm willing to give it a try.
The one homeopathic remedy my rheumatologist has suggested, which I am not suggesting you take without talking to your doctor but am just mentioning because you asked about alternate therapies, is Calme's Forte. He's recommended it to help with my terrible insomnia. As long as I don't use it too often, it does help (though not tonight, as I'm still up at 5:30am, oh well!).
Good luck to you on your search for alternative and regular therapies. You'll get a wealth of information here on the forums that I haven't found anywhere else - either in print or on the internet.
Tracy
My experience of watching my friends try all the alternative therapies is that they are in the poor house for spending thousands of dollars on "cures", but are no better off than I am who uses the less expensive insurance covered generic prescriptions - which are regulated by FDA. Alternative treatments are not.
Liz D.