Re: eyelids and steroid pulse therapy

[irish]

Just had to tell you my experience in an ophthalmic assessment regarding surgery to fix my eyelids that droop and are causing pain and problems with seeing etc. I have the autoimmune Myasthenia gravis and one of the symptoms is droopy eyelids which is neurological in nature due to the disease.

Now, enter the older years and the drooping eyelids that come along with loss of muscle tone in the face. I don't have bad eyelid droop but they are getting worse and vision, reading and computer is becoming affected plus eyelids that hang onto the eyeball cause eyeball pain-- combination myasthenia and old age, so to speak. Soo, my optometrist DIL referred me to a specialist who does this type of eye lid repair. Turns out that the specialist declined my case but gave DIL the name of a couple of surgeons who specialize in eyelid repair on people who have myasthenia gravis--who woulda thunk.

Soo, I am sitting in the exam room in the doctors office and I hear a sort of moan from the room next to me. It sounded like the doctor and his nurse talking in that room. He comes into my exam room and introduces himself and says, you have a huge history---so now I know what the moan was, it was him seeing all my diagnoses. It turns out that having myasthenia gravis and sjogrens is not a good thing to have when it comes to having eyelid surgery. He said that almost impossible to do the surgery as it is hard to know whether to affix the eyelids in a position that would be like my morning lid location or my evening eyelid location. I could end up with a sort of deer in the headlight stare . Then with the sjogrens the eyeball would be so exposed that the dryness would be increased greatly.

So, I guess the option that he chooses is no surgery until I am really in bad pain and can hardly see out under the lids.He did the measurements needs for baseline just in case.  I will now go about my life looking pretty lousy with my eyelids hanging. I do take scotch tape and tape them up on the sides sometimes to relieve the discomfort.

I am now through with 5 months of once a month pulse therapy with 1000 mgm of solumedrol which is being given to save the hearing in my hearing ear. I am totally deaf in right ear and losing hearing in left ear due to 2 antibodies that are destroying my hearing. The steroid pulse therapy is the only treatment to save hearing at this time. I am beginning to feel more ill after the treatments the last 2 times but after this last treatment it seems like my whole body was feeling better a couple of weeks later--I think. You know how it is with autoimmune cause things change from day to day. I also know that the bad heat has ended and that could have some effect also.

I am to have my hearing checked again in October and see ENT and then my immunologist. Will see where I am at. When I started this my immunologist said we would do 3 months of steroids and evaluate and now it is 6 months and the way I understand it he could want to do more. Doc said that 2 years or 24 months of steroid IV pulse therapy was the most one would have. I know I am not going to do that by a long shot. First of all I would think it could be hard on your body and then I would also want to save some dosages for emergency situations with the autoimmune disease. So, will see how this goes.

I know that there are some of you out there who are struggling with the autoimmune ear disease and what treatments to use. The way I understand it the oral drugs like methotrexate, etc., must not help the ear disease issues. I lost the hearing in my right ear back in 1997 or so and was offered 100 mgm prednisone a day for one month. I refused because I knew I would literally become psychotic on that high a dose of predisone for that long. It was my choice and I went into it knowing that I had a good chance of losing my hearing.

Thankfully, the 1000 mgm of solumedrol done over 1-2 hours doesn't cause much in the way of side effects. The high dose works fast and then out of the body. The first 24 hours my blood sugars are high and unstable plus the blood sugars continue to be higher than normal for me during this therapy. I also am getting so that I have a bad headache the evening of the therapy along with flu like symptoms. The agitatation and insomnia are an issue but it hasn't been terrible and decreases as the days go by. By the time you get these almost out of your system it is time for the next pulse therapy. All I can say is time will tell. Hope there is a little info in this for those of you who could use it. Good luck all. Irish

[Jasper]

Thanks for the update, Irish. It is always good to know how various treatments work and if they help with the many problems we may encounter.

I hope the steroid therapy helps your hearing.

I am sorry that they cannot do anything for your eyelids, but I can certainly see why they would hesitate to do surgery on the eyelids when Sjogren's is in the picture. Sjogren's Disease complicates a lot of things for us, especially surgery, and even more especially, eye or eyelid surgery. 

I hope you keep us posted on how the hearing responds.