View Full Version : My Eyes....UPDATE

October 1st, 2015, 08:45 AM
Good Morning to you All,

Well, as many of you know I have a lot going on with my eyes Sjogren's and Glaucoma. Yesterday, I had a follow-up appointment to my appointment back on May. Back in May they decided to start me Serum Tear Eye Drops (made from my blood). I had not seen (no pun intended haha) a significant improvement in my eyes and it was confirmed yesterday down in Boston.

I informed the Eye Dr in Boston yesterday how I have been pretty much in a flare for the past year with my entire body. She asked me what my Rheumotologist was doing to treat me? I told her that he said that there is only one drug to treat Sjogren's for which I cannot take due to Asthma. So he said your in a crappy situation and there is nothing I can do. Told me to have my PCP manage this disease 😳😳. The Eye Dr yesterday was flabbergasted by that last statement. Her exact words were "We need to find you a NEW Rheumotolgist".

So the plan of attack is: I go back to Boston October 19th to see another NEW Opthamologist that specializes in Eyes and External diseases. She also said that this Dr can fit me to the Eye Contacts for people with dry eyes....a forum member has tried these 😃. This NEW Eye Dr should be able to refer me to a Rheumotologist that deals with Sjogren's. I am hoping this will lead to some sort of treatment for me. I am tired 😔 and being in pain on a daily basis is wearing me down.

I am hopeful that this New Dr will lead me down the road to better managing this disease!

October 1st, 2015, 09:33 AM
Fannie, that is just awful. You certainly do need a new doctor! Please keep us updated and I will be praying for you.

Sandy Navas
October 1st, 2015, 09:48 AM
You know me - eye problems too! So I'm sending hugs and lots of understanding and lots of encouragement to not give up. Pray that the new doctors will join in your treatment and that you will see some great relief soon. Hugs to you, dear Fannie!!

October 1st, 2015, 09:53 AM
Oh Fannie! I am so sorry to hear you are still dealing with all of this!
I was not successful with the scleral contact lenses, BUT it was more because of the fact that I wasn't able to see with them in due to the "gooey crud" that my eye produces thru out the day. And that clouds up the saline solution in the lens. I would have to take them out so frequently to clean them and add new saline that if didn't allow me any time to benefit from them, especially if I was driving at the time!! YIKES!!! But the 3 other patients that started with me are doing very well!!! So there is hope!
I kept the saline in the refrigerator and boy did that cool saline feel good in my eyes.
Now I just use the cool saline solution as a drop thruout the day to help with the dry days, in addition to the Sustane eye ointment.

I recently heard a medical report noting that patients with severe dry eye MAY be experiencing the pain due to nerve damage/inflammation of the optic nerve. And that it may not be the eyeball, but the nerves in the eye. There is talk about looking to start some clinical trials in the future when they do further study. But the good news is, it's suppose to be in the Boston area!!!

I am at baseline, but the cataract surgery did change my vision in the right eye from 2.5 to 0.5. So getting sight back has been wonderful!! I continue to take the cymbalta to calm down the fibromyalgia nerve pain and that is still working well for me....... Most days. But I still have flares now and then!

You have my email so please keep in touch. It's amazing what the trouble with our eyes can do to make us so frustrated with our day!!
HUGS to you friend!!

October 1st, 2015, 10:26 AM
Fannie.....so sorry you are still dealing with these problems. I'll be praying that the new doctors will be able to find solutions that will work for you. Praying for you too, for relief from the pain & the stress of dealing with it.

Sending a Big Hug from me too.

Snip Snip
October 1st, 2015, 10:55 AM
As another quilter with immune system disorder illness and eye issues, I will keep you in my prayers. Sure hoping the new docs will help.

Simply Quilting
October 1st, 2015, 11:15 AM
Praying for the doctors to have wisdom in how to help you. I am thankful that your eye doctor is being very proactive and not giving up.

October 1st, 2015, 01:09 PM
I am so sorry that you are going thru this. Hopefully you can find a better ra doctor and things get better

Sylvia H
October 1st, 2015, 01:14 PM
Wishing you the best success with a new doctor.

October 1st, 2015, 01:41 PM
So glad to hear your opthamologist will advocate for you to find a rheumatologist that will work with you. Big hugs and sure hope the scleral contact lenses will be a good treatment option for you. Let us know how it goes.

October 1st, 2015, 02:06 PM
Not all doctor's are created equal. I am hoping the next one will be a lot more help to you. Hugs and prayers!!!

October 1st, 2015, 02:43 PM
I so hope that the New Dr will be able to help you.

October 1st, 2015, 02:57 PM
Sending you HUGS and prayers that you will find a much better doctor to treat your eye/body issues.

October 1st, 2015, 03:31 PM
Oh Bailey 65, Bless your heart, you must be miserable. (hugs) I don't know much about eye conditions but I hope this new treatment helps your eyes.
Not all doctors are created the same I have been there. Reading what he said to you makes me so angry. One rheumatologist didn't recognize I was having a reaction to Humira and keep giving it to me. Finally found one who has my psoriatic arthritis under control and actually seems to care.
There are a lot of new drugs to treat arthritis out there and a lot of good physicans. With Boston being a large city I am sure they will be able to find you one who can help you. I will keep you in my prayers and I hope you get the right treatment soon.

October 1st, 2015, 04:10 PM
I will keep you in my prayers that the new dr is more helpful to you. I have Sjogren's and Lupus too.

October 1st, 2015, 04:34 PM
Praying a new doctor can help you. How awful that the old one told you what he did.

October 1st, 2015, 06:13 PM
I will be saying prayers for you, hope this gets better for you soon. Think as positive as possible, we'll pray
the right Dr. Will know what to do.
Stay srong.

October 1st, 2015, 07:07 PM
I would like to thank each and everyone of you!
All your wonderful kind thoughts and prayers makes me feel better ��. I will let you all know how I make out after the next Eye Appt Oct 19th. Hopefully this NEW Eye Dr will get me an Appt with a NEW Rheumoltolgist soon.

I love all of you......thanks for lifting my Spirits!

Cathy F
October 1st, 2015, 08:10 PM
Fannie, hoping this new specialist will be able to greatly improve your eyes.

October 2nd, 2015, 05:38 AM
Chronic diseases with pain absolutely suck...pray you get relief. Here lately I have been hearing the refrain " There isn't anything I can do" from doctors a lot. I can't take many of the meds due to reactions, so options are truly limited. So frustrating.....

October 2nd, 2015, 04:21 PM
Fannie, as a daily sufferer of many illnesses, I truly do feel your pain. It is so very hard to live with these issues on a daily basis. When those that are supposed to be 'fixing' us can't, or won't find the answers, it is hard to keep going and stay positive. I don't have the eye issues, but severe skin issues from my lupus. If ya ever need to talk or vent, hit me up. I really can understand your frustration. If you are on FB you can find me there too. Hugs and prayers.