Author Topic: 1st Rheumy visit on Mon. and Rhuemy #2 on Fri. notes  (Read 4329 times)

irish

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Re: 1st Rheumy visit today.
« Reply #15 on: September 19, 2013, 12:23:43 PM »
I would advise you to try the Plaquenil. I started it a couple of years ago and it has reduced inflammation in my nasopharynx and other mucus membranes. If I don't take it for a period of time I can sure tell the difference. Mine kicked in within a month. I think that we are all different in our response to medications. Irish

wisconsin41

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Re: 1st Rheumy visit today.
« Reply #16 on: September 19, 2013, 12:49:20 PM »
irish is it the inflammation that keeps the mucus from forming in the sinuses?
Eyes:Restasis,Alrex; Plaquenil,Evoxac(sort of), Nexium, Zolpidem, Naproxen

irish

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Re: 1st Rheumy visit today.
« Reply #17 on: September 19, 2013, 09:23:24 PM »
The inflammation causes swelling of the tissues plus the antibodies destroy the salivary glands and the glands that secrete. The secreting glands are all the mucus glands in the nasopharynx, throat, lungs, urethra, large and small intestine, stomach., etc. The pancreas is a secreting gland as is the liver and they can be affected also.

The Plaquenil has shown to help some people with moisture issues due to its anti-inflammatory effect.Also, we have so many of these salivay and mucus producing glands that even when we are really, really dry there seems to be a few glands left that could be saved.

I have the strangest issues and it took the docs many years to figure it out. I have had extremely thick mucus from my sinuses and that for many years. I am spitting and choking on it a lot and go through a whole lot of Kleenex. I have a lot of this thick mucus that collects on the upper side of my hard palate and plugs me up. The stuff won't go either way and I have to irrigate my nose a lot. It seems that the docs have decided that my myasthenia gravis causes the muscle in the back of my throat and palate to be weak and inefficient in swallowing. Thus the build up of this mucus. It is just a rotten situation and keeps me out of a lot of social situation.

I have to admit that it is some better than it was years ago and I guess I would attribute that to 7 years of IVIG and possibly the Plaquenil. Irish

wisconsin41

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Re: 1st Rheumy visit on Mon. and Rhuemy #2 on Fri. notes
« Reply #18 on: September 21, 2013, 07:49:58 AM »
(Rheumy #2)
    She was willing to discuss treatments that I brought up, answer questions etc. She listed me as "primary SICCA" on the paper work. She said there was little evidence that Plaquenil would help with moisture. We discussed steroids, to which she was reluctant to try but willing to let me do a 2 week tapper starting at 20mg after blood work came back. She said steroids would most likely only help short term. Overall informative and honest that this is a difficult disease to treat, especially the moisture issues. She mentioned that you generally don't feel thirsty until 30% of your salivary glands are damaged. She did suggest a lip biopsy, I am still reluctant.  We briefly talked about immunosuppressives. Overall I think she is willing to aggressively treat me if I want to go that route.
Eyes:Restasis,Alrex; Plaquenil,Evoxac(sort of), Nexium, Zolpidem, Naproxen

slccom

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Re: 1st Rheumy visit on Mon. and Rhuemy #2 on Fri. notes
« Reply #19 on: September 21, 2013, 10:15:57 AM »
(Rheumy #2)
    She was willing to discuss treatments that I brought up, answer questions etc. She listed me as "primary SICCA" on the paper work. She said there was little evidence that Plaquenil would help with moisture. We discussed steroids, to which she was reluctant to try but willing to let me do a 2 week tapper starting at 20mg after blood work came back. She said steroids would most likely only help short term. Overall informative and honest that this is a difficult disease to treat, especially the moisture issues. She mentioned that you generally don't feel thirsty until 30% of your salivary glands are damaged. She did suggest a lip biopsy, I am still reluctant.  We briefly talked about immunosuppressives. Overall I think she is willing to aggressively treat me if I want to go that route.

You need to find rheumy # 3 who understands Sjogren's and its treatment.

Sharon