alternative medicine?

[irish]

faithful, The symptoms that you complain about are autoimmune issues. The fullness in the head, etc is something that I have had and it is better now than it was years ago. It got better when I went on my Prednisone and I think it is even better since I started the IVIG. I had it so bad that sometimes I hardly knew where I was or what I was doing. I could hardly think straight and my balance would be so bad that even walking across level ground was very difficult.

These type of "head" issues are pretty much hard to isolate and explain to the docs. All I know is that I will be on Prednisone pretty much for the rest of my life. My neurologist put me on 10 mgm every other day because of my myasthenia gravis and I need to keep that dosage up to have an "edge" or being ahead of the game in case of respiratory failure and other muscle weakness that gets bad suddenly.

Did you ever consider the possibility that your condition could be getting worse over the months that you have been on the Plaquenil? This is possible and could make you think it is not working. I would ask about being put on prednisone and see what would happen. Prednisone is usually given along with the Plaquenil. They will start it at a higher dosage for several weeks etc and then taper it down and keep it on a maintenance dose for a few months until the plaquenil kicks in. The big thing is to make sure that you get your dosages every other day as the side effects are much less. I am on the 10 mgm of prednisone every other day and when I have increased issues the in between days will have added prednisone and then tapered off. My neurologist told me that the 10 mgm every other day is considered to be a physiologic dose. In other words it is pretty much what the adrenal glands will put out. It is enough to give a boost without adding the big weight gain etc.

I don't know what kind of weakness you refer to and it may well be that a 2nd opinion by another rheumy would be to your advantage. I do know that I was on 10 mgm every other day for a couple of years and then dropped down to 7.5 mgm and in 3 weeks my aches and pains started to come back. Much of my joint issues and other aches and pains are kept under wraps with the prednisone I am on.

Your rheumy may want to stop the Plaquenil, but I would sure ask him what he plans to replace it with. Even if you are put on one of the stronger drugs it is very common to also add the prednisone until the new drug kicks in. Doesn't your doc get it that you are in pain etc??? Take care. Irish

[Tamik]

Faithful,
I was on the plaquinil for about 7 months -I actually felt better one I was off it.  It does help a lot of people though.  My new doc practices functional medicine - he practices internal medicine as well as naturalpathic medicine.  Anyway, he was shocked that my D levels were not traceable 6 months ago and I was  only on 1000 units a day -he upped it to 4000 a day for 6 days a week, plus a 50,000 once a week. Plus I need to have it retested in 3 months.  He wants the levels up to 40.  He says I will feel much better then and a lot of my pain will go away!  Do not add mass vitamin D without a dr. He said my rhumey was very good, but she just does not know how to replenish vitamins in the body because that is not her specialty so she was being way to conservative.   Plus he added sublingual B-12 daily as well as my monthly shots (that is for Pernicious Anemia).  He says my body is way out of balance - which I knew anyway. HE DIDN'T THINK I WAS CRAZY!!!!  He could not believe that I have had these horrible headaches for over 2 years and nothing has been done to resolve them - migraine meds did not work.  HE SPENT 2.5. hours with me!!!   He wanted to hear everything and not once mentioned anxiety.  He is testing me for a zillion things like thyroid (more than just the basic level because he said that doesn't give enough information), food alergies, etc - My goal is to make sure my cells are nourished and as healthy as they can be so my body can start healing.  I am holding off on the conventional meds again until I try this first.  Prednisone really scares me as do a lot of the other meds - plus- then I would have to admit I have an illness instead of just trying to get my body balanced!!     Tami K

[faithful]

Tamik, i need to find a doctor like that. THis meds are making me so sick, I literally throw up.  My wt continues to drop, my energy level is barely able to get out of bed today.  My head is so swelled up.
I dont know what's going on? 
It is wonderful you have found a doctor who is willing to work with what your body needs. 
Faithful

[Tamik]

Faithful,
Do a Google search on functional medicine and there is a site that will help you find a doctor and also will tell you more about what they do.  Let me know what you find out! You can PM me if you would like! Tami K