Connective Tissue Disease & Prednisone Inquiry :)

[Hopeful]

Hello Everyone,

I haven't posted for a couple months. I had a question.

I finally got "some sort of" diagnosis at the Mayo Clinic in Rochester, MN two months ago. (after 15 plus specialists at some of the top hospitals)  The Rheumatologist I saw feels that I have "connective tissue disease, poorly defined".

He put me on 5mg of prednisone that I have been on since then and my symptoms have really subsided a lot. It's not 100% gone, but I feel 90% better.

My questions are this.

1. What is connective tissue disease

2. How long can you stay on 5mg of Prednisone for?

3. Does your body build up a resistance to Prednisone?

4. Because I am responding to the prednisone do you feel that I have an autoimmune condition like connective tissue disease or can prednisone treat other conditions as well?

Thank you all for reading this post.

Hopeful

[irish]

Glad to hear that you got some sort of diagnosis. This is probably the best you will get at this time until you have positive Sjogrens blood work. The interesting thing is that Sjogrens is classified as a "connective tissue disease" as is Rhuematic fever, lupus, etc. You got a possible diagnosis by the doc coming in the back door and not defining it in more specific terms. This happens a lot.

The good thing is that he put you on prednisone and it is helping with your symptoms. You can take prednisone for a long time but the goal is to keep the time as short as possible. Hopefully you will be able to taper off the prednisone and have less symptoms. However, I would not hold my breath---the one drug that you probably would benefit from is the Plaquenil. Many times the prednisone and plaquenil are started at the same time. THe prednisone is then tapered down after 4 months or so as by then the Plaquenil may have started to kick in.

If after tapering off the prednisone the symptoms are still there the docs will restart the prednisone and continue it for a couple of more months or so and then taper off again. Everyone responds in a different length of  time to the Plaquenil. Plaquenil is the drug of choice for Sjogrens now and a good many of us are on it. It helps with the aches and pains and some people just generally feel better due to its strong anti-inflammatory effect. It is not an immune suppressant drug. Many of the doctors seem to have a terrible time ordering Plaquenil for their patients who don't have positive blood work. However, the other docs who order it are doing a patient a favor as they are doing something to help make the patient more comfortable by treating the symptoms.

The length of time a person is on prednisone varies due to the patients condition and symptoms and response to the prednisone. Also, every doctor has a different way of prescribing the dose such as every day or every other day---talk with your doc about this. I have been on prednisone since 2006 and my neurologists wants me on 10 mgm every other day. Right now I am on 19 mgm a day and tapering off. I have been on prednisone almost every day for 3 years due to an increase in my symptoms brought on by the stress of caring for a sick hubby who just passed away 3 month ago.

My goal is to get back to the 10 mgm every other day. My doc wants me on that as she keeps all her myasthenia gravis patients on this dose to help protect them and give them a sort of hedge against the respiratory failure that can come on quickly with myasthenia gravis. You will have to see how things go on the prednisone and hopefully find a doc at home who can be in charge and also help treat you with plaquenil without going back to Mayos. It is much easier that way cause it cuts down on the travel, convenience, etc. Good luck. Irish

[Hopeful]

Thank you for your reply Irish.

I have to say I feel like I got my life back. I still have the swelling in my submandibular glands but not as bad.

The real difference is no swelling inside my mouth ie the floor of my mouth or tongue since I've been on the prednisone.

I have noticed that the hair that fell out in February has started to grow back.

I have very high Hashimotos antibodies and my hair fell out when I started the Synthroid. Not sure why but it's growing back and the Drs at mayo said that's a good sign.

The Mayo rheumatologist said I had prominent parotid glands. They never hurt but they were puffy/made my cheeks look a little puffy.

The rheumatologist at Hopkins I went to months before mayo that specializes in sjogrens said he didn't think it was autoimmune or sjogrens.

The mayo dr said "so how many Drs have made you feel like your going crazy"
I almost cried in his office because finally someone believed me.

I hope he will continue to be able to help me and that I can find a good rheumatologist locally.

Hopeful

[mshistory]

I'm on Prednisone a lot for my lupus. I typically start at a high taper (60 mg then wean down to 10 mg over six weeks). While it can be necessary for us, Prednisone and steroids do have a lot of potential side effects, especially if used for long periods of time and the higher the dose, the greater the likelihood of complications from its use.

I know quite a few people with lupus who have developed Cushing Syndrome as a result of on-going steroid use. I'm worried about how much I've been on lately .... my skin is all broken out 

It can really contribute to osteoporosis as well, especially if you're already high risk.

[SjoGirl]

Connective tissue disease happens at a cellular level, literally where your tissue connects to your bones. There are many types with Sjogren's being one, Lupus another, undifferentiated connective tissue another. All are autoimmune diseases and can be chronic, though not all progress or they may progress slowly. Some, like undifferentiated CT can go into remission or even go away (not typically Sjogrens).

If you Google the term you will find some helpful references.

[Hopeful]

Thank you.

Yes I have google it many times. However, I find that hearing from individuals that are going through this as well is always helpful.

I spoke too soon about feeling better. I have had some sort of flare. First time in a couple months. Swelling and itching of parotid and swollen submandibular glands/floor of mouth a bit swollen.

[irish]

I have struggled with the floor of my mouth for about 20 years. Long before I knew that I had Sjogrens. I have the swelling and pain. I will often take my finger and massage the floor of my mouth in hopes of moving some of the thick mucus and also loosening up some of the ilttle stones that I get in those ducts.

I don't swell so terrible in my sublingual glands, but they sure give me fits and I have chronic low grade infection in them and the "grit" that drives me crazy. I also have little swelling in my submandibular glands, but I ended up having my right one removed because of the stones that seemed to hang out there.

I swear my throat even gets stones in it plus all the mucus membranes and tissue in my throat and down into my trachea swell and feel like I have a knife stuck deep in the tissue. Comes and goes and no one can ever see anything. It is always worse at night and I have told my ENT that I am going to pack my suitcase and move in with him until he can see what is going on. He just laughs. I'd love to give him a good shock and show up on his doorstep.

All I can say is that heat, fluids, carbonated beverages, hot tea, coffee, anything you can think of to make those glands "pucker" and try to move a little mucus. Nasal irrigations also help to keep the secretions thinner and more soft which help ease the discomfort at times. I deal with terribly thick mucus all the time and it is getting worse. Makes for a lousy social life. I have found that when it is really bad and starting to make me choke that I use Nasonex nasal spray and it decreases the mucus draining from my sinuses. This cuts down on some of the misery and honking and spitting. I use this before I go away so I am more socially acceptable. Good luck. Irish

[quietdynamics]

I use my toothbrush to bush/massage the inside of my mouth when I brush.
To stimulate and try to keep smaller areas clear.. moving along.
Lay my hand on my cheek for stability.

Lately, I have been remiss.
The other day I felt "grit" and saw very tiny bump for two days.
They did brush off.. and I had some Rx mouthwash left from oral surgery.

Recently doing a 'spit test', all I really had was thickish, foamy fluid.. and a fail.

Increased Pilocarpine.
I see I should use Nasonex more often. (Not just in the winter with heat on in the home)
Instead of all the spitting in the sink, carrying tissues.

[cccourt1942]

Hi there..
    This is all about the salivary glands: For those of us who know we had SjS or were knocking on the door of SjS for decades,  we have had all these strange symptoms either by themselves or together.  When the salivary gland issues began with me, I was taken to my knees.  The otolaryngologist (and eventually the rheumatologist) couldn't believe my first, painful blockage was the first "pang" of the pain I had ever had.  Now that I have been on this board, and understand all the salivary glands, I realize that day was the first time my parotid was blocked.  One has discomfort from the other pairs (submandibular, sublingual) but not the excruciating pain which comes with the parotid. 

     I am going to skip my saga and tell you what really helped me:  dilation of the parotid gland.  Now then..if you aren't having this in the parotids--and you would know--the other salivary glands have ducts.  It is a simple procedure..in the office.  A little scary as they go through your cheek.(for the parotid that is)  Until you have the dx of SjS one is not sure how compromised their saliva is.  My ENT (LONG before dx) said I really didn't have salivary gland "stones" but rather "sludge".  Of course, with the dx, that is exactly what it is.  As you get older, your saliva decreases but isn't compromised by the SjS disease.   The  products to make you salivate work if you have saliva.   When it is SjS sludge, it is just painful.  The saliva meds help you produce artificial saliva.  After awhile it feels "normal"..but the truth is, we forget what a normal, saliva coated oral region feels like.  The meds give us back comfort...but not real saliva.  I don't know how SjS positive patients deny salivation meds.  Before, I was waking up choking all night long.   No saliva so couldn't swallow normally during the night.    I will still do this periodically...but once every couple of months ONCE during the night is soooooo much better.

As to swelling of tongue, cheeks (talked about by others) I guess I did have this for years.  How do I know?  Well..about 10 years ago I began to bite my tongue and cheeks when eating.  The result?  I have areas on my lips, one on a cheek, and several on my tongue which are sores the dentist and ENT watch. 

I bet you were happy to have a dr. validate your symptoms.  It astonished me when someone put all the symptoms together to tell me I might have an autoimmune disorder.  In fact, I remain astonished I spent decades with this disease.

I hope you have a great day...decreased symptoms...and the prednisone will give you some much needed relief.  I wish I could tell you what that itching and swelling (while on the prednisone) is.  Nary a clue here.  It almost sounds like "blood circulation" coming back to life.  Is that possible?