I am a mystery myself, but I have swallowing issues and weak tongue..Before I got treatment (i had about 4-5 months of going down hill fast before I got admitted to a neuroscience center), I couldn't even smile, or more frustratingly coiuldn't even make the right "cry" face, and I needed to cry!!! I drooled out of the side of my mouth.. lost my voice easily.. any cold/cough my voice would be gone.. my abs/respiratory were also weak that getting my voice out was difficult. .. They started IVIG and it saved my life.. I saw you also have "brain fog" like symptoms.. I get these when I am getting a flare... along with the joint aches.. I have a hard time remembering codes/passwords.. it's scary

Hi Melwally. I certainly did have slight swallowing issues, my voive was very weak and I was breathless. The prednisone cleared all this up but it took time. Now when I am tired or talk on the phone fir a while my voice will fail. Swallowing and voice all relay on muscle to function so no surprise we have these problems. Autumm

Hi Melwally. I certainly did have slight swallowing issues, my voice was very weak and I was breathless. The prednisone cleared all this up but it took time. Now when I am tired or talk on the phone fir a while my voice will fail. Swallowing and voice all reley on muscle to function so no surprise we have these problems. Autumm

In 1999 I had emergency surgery and woke up with no voice and choked on everything. After a few months part of my voice came back. Finally I went to an ENT in 2001 or 2002, and he diagnosed me with a paralyzed vocal cord, possibly from the intubation tube. Whatever the cause, the ENT informed me that if a vocal cord doesn't return to function within one year, then it will remain paralyzed. Yay! I have to consciously and deliberately swallow many things, and cannot swallow large, dry pills (like calcium). And I have the constant vocal issues--always clearing my throat, unable to be heard in a crowd, and constant speaking difficulties. Also, for a long while my tongue felt strange and made enunciation extremely difficult. Believe it or not, after some chiropractic adjustments, the tongue started working better. However, I still drool sometimes. My family and friends don't allow me to go anywhere without my cell phone, because if I fall, no one could hear me yelling for help. Also, I carry a good whistle with me as well. So sorry that you, too, have the paralyzed vocal cord. It's been 15 years for me, and I'm still not used to it.

Hi Melwally, There is a product at the drug store called, "Thick It." The Thick it product is used for adding some needed thickness for easier swallowing of foods & juices for people with dysphagia. There is also Thick It for water too. Talk to your pharmacist for the helpful product.

Just a tip and you are probably already doing this - try to sleep at night in a more raised position. You do not want saliva, GERD etc..going into your lungs.

You can get your meds in liquid form too. Talk to your rheumy.

You are in good company. Sorry about the dreaded swallowing thing. I have mild swallowing issues and I am hoping it does not get worse too. Keep us posted.

Thanks for all your responses. I honestly feel like I get more information, advice & support from this group than any of the Doctor's or nurses I see. I was on 60mg of prednisone almost 6 mo's then my derm had me doing a slow taper but when I saw rhuemy she sped it way up, like tapering down 5mg every 5 days because she was determined to get a muscle biopsy. When I returned and she took one look at me and said you have even more symptoms than before, forget the biopsy so she started me on plaquenil and I absolutely cannot tolerate it..
Do any of you have any input about how they're treating my conditions? Do you think I was on the prednisone long enough? I didn't really notice that it helped me all that much but now that I'm totally off of it , I'm starting to think maybe it did. So I was on it for about 6 months. How long at a time were you all on it? Also is there a certain criteria you have to meet to get these IVIG drugs.

I personally LOVE plaquenl.... it really has improved my quality of life.. though the GI side effects are pretty awful at first for at least the first month... however, one day (about 4 months after I started), i realized, hey I can bend my legs, elbows, wrists without it feeling like glass in there.. and my overall condition improved.... who knows if that was plaquenil related or coincidence.. .. I don't know about the criteria for IVIG>. I think if your dr prescribes it then hopefully insurance will approve it.. It's really variable from Dr to Dr when they think you need it.. for me it wasn't until my pulmonary function tests plumeted and I could barely move or breathe.. got admitted into the neuroscience unit that they started it.. however I think that just being refractory to other treatments would mean maybe you could do a trial?? but who knows!

Hi Melwally. I took 60mgs Prednidone daily fir one month, then Azathioprine was added and the taper began. It wS long and slow about twenty months I believe going down a little at a time and monthly blood tests. I finished the prednisone in December last year but still take the Azathioprine. This disease needs long term treatment nit a quick flash of prednisone followed by a taper. I am concerned your Rheumatologist dies not understand this disease as well as he/she should understand it. Please call your Rheumatologist up and explain your swallowing and vocal issues. Hope you can start some proper treatment soon. I am not a doctor, only passing on what I have learned in the last two years. Autumm

Hi Melwally, Do talk with a pharmacist about taper safety.

It never hurts to get a second opinion. My rheumy was not offended when I tried a more convenient doctor that was five minutes from my home. I ended up going back to my first rheumy because she was cheaper and better inspite of a 60+ mile trip to her office. If you are in doubt about your care and are not seeing & feeling good results plus improvements then do see another doctor.

Ivig is used when other first line medications for DM/PM did not work. A doctor would need to test your globulin levels and run a protein component test to determine if Ivig is necessary. Ivig is very expensive and requires insurance approval too. The website Drugs.com may have more information too.

Thanks for all the great advice.. I see my Rhuematologist on mon. This will only be the 4th time I have seen her. I am still trying to feel her out and she is willing to treat me despite my blood work not showing anything but a slightly elevated cpk and Wbc.. No other rhuematologist I saw before her was.. She is sending me to other specialist for various issues without me even having to ask, so I do like. I do agree that she is maybe not being aggressive enough with my treatment but I do think she is trying. Since I went off the plaquenil I haven't had any migraines. I took it for about 6 wks and was making about 1 trip a week to the ER with the worst migraines I have ever had in my life.. I am very sensitive to medication. I have found very few that I can tolerate.. I usually get nauseated and it triggers my migraines on most anything and not just a little, but too the point of not being able to function.. I am worried that I will react that way to most of the treatment options.. I realize I may have to just push through it and it may subside. The prednisone did that to me a little at first but after a few weeks I could tolerate it but the plaquenil was a different story.. I would appreciate any of your suggestions & opinions. Although I have been sufferring with symptoms for a couple of years I had no idea I had an autoimmune disease so this is all kind of new to me & honestly many of you seem to be more knowledgeable than many of the doctors I have seen.. Thanks again for the help...

@Melwally
Regarding vocal cord paralysis, look at Table 1 in this report.
http://www.sassit.co.za/Journals/Physiology/Rheumatology%20EMRs/AIRWAY%20PROBLEMS.pdf

My doctor wanted me to undergo a surgery and have a Montgomery implant done for mine, but I chose not to have it done.

Hey Melwally, I would never take a new DMARD at a full strength dosage. I did try my Cellcept full strength the first time and my blood pressure dropped severely. I quit taking the Cellcept for several months. I decided to try it again only starting at 500mg for a month, then I later moved up to 750mg for a month then 1500mg. I got used to the dosages before moving up to a higher dose.

Today I take 750mg of Cellcept which is down from 1500mg. My liver was screaming so my doctor lowered the dosage. Today I do very well on Cellcept too.

These DMARDs are very powerful. If you start at a lower dose and get used to the medication then that is a good way to avoid side effects and problems. You doctor can also see how well you are tolerating the med, and if it is working in a beneficial way starting at a lower dose.

I hope this helps.

Hi Melwally. I take Azathioprine. It took a while stopping and starting it at different dosages to find the dose my liver was happy with. Have been on it now fir two years. No problems. Autumm

You may have given me the answer to what I am experiencing. my sister is having a swallowing test done on Friday for these same issues which I am also experiencing. I am always choking and have a very dry mouth. At times I can cough up what was eaten a lot earlier and I feel as if I am swallowing everything whole, and that my throat is wider.

My primary has referred me to yet another doctor, an gastroenterologist to do even more testing and i am having a test that requires me to fast for 4 hours and then they are running a test to see how my stomach is digesting food. I don't mind that test but I don't want to see another specialist who is only going to order more test and more test and more expense. I will see what this test shows and go from there. What is the doctor planning for you? I also have a lot of mucous, which I have never had a problem with before and of course I am told it is my sinus without even checking. Doctors amaze me with their guess work at our expense.

Hi Brenda. I am concerned you are starting to have swallowing issues. I know you are going down fairly fast on your prednisone. Are you having a flare. What sparing drug are you on and how long have you been taking it. Brenda, you have to be very careful with swallowing issues, they can quickly become medical emergencies. Have you told your doctor about this. Autumm