Confusing eye Dr appt

[Ihurt]

Lately I have been having pressure (lots) behind my eyes. Rheumy wanted me checked for uveitis. I've also had shoulders snapping every time I move them, and a bad headache in the back of my head/neck. My face and jaws feel very tight. Eating a sandwich was difficult the other day because I could hardly open wide enough. Feels like there's a vice grip onmy head, neck and shoulders.

Went to the eye Dr, and he says there'sno sign of unveitis at all (good news), however, he says the optical nerve in the right eye is swollen larger thann the left and wants to do a field vision test in two weeks.

So I did some research on what could be causing me this problem. Still cannot make heads or tails out of it. I did place a call to the NP at the Rheumy's office and of course it could all be part of the flare, but the eye pain is new, and so is the snapping of the shoulders (which I might add is painful when it happens). Does anyone experience this? If so what is it and what have you done for it?

Elaine

[Petdoc]

Elaine,

Sounds like you have optic neuritis (inflammation of the optic nerve). Swelling at the back of the eye could sure account for headaches and jaw pain (TMJ joint is below eye socket). I know that conjunctivitis (inflammation of the eyelids/conjunctiva) is linked with Psoriatic Arthritis but I'm not sure about Optic Neuritis.

And... are you on Enbrel, Humira or Remicade? I am on Enbrel and the warning label lists Optic Neuritis as a possible adverse reaction. Definately talk to your rheumatologist ASAP.

Good luck.

Megan

[JesseLou]

When I have had snapping in my shoulder, it is what docs call "impingement". It is caused by weak rotator cuff muscles, and that weakness can be the result of (1) having had inflammation in the shoulder joint, or (2) lack of exercise. Women are particularly prone to this because we don't have strong upper arms unless we do strength training.

Ask your rheumy to check your shoulders, and go from there. If you have impingement, you can get rid of it pretty quickly by doing some simple exercises with small weights. A PT or physical trainer could show you how, but first you need to find out what is causing the snapping for sure.

[Ihurt]

Boy you sure are knowledgeable! I did put in a call to the Rheumy, the crackling(crepitus) is really bad tonight. I don't even have to raise the arm much at all-even when Im sitting in my chair and reach over for my drink it cracks and the pain is going down the back of the scapula and down the arm.
I think I've been in this flare since Monday, and it now includes my TMJ. The tightness in my head and neck radiates all around. I just hope I can get in to see them tomorrow-I think I really need to-this is getting very painful. Thanks for your post it was very helpful.

Elaine

[Ihurt]

Thanks for that reminder, your right. I alos belong to another arthritis group and the manager there reminded me that could happen right after you did lol.
Hope fully I can get in to see the Rheumy tomorrow.

Elaine

[Ihurt]

He immediately suspended the Humira-says it's optical neuritis due to the former Remicade tx. The other symptoms he says may be MS symptoms along with the neuritis,. He will speak to the Opthalmologist and they will be ordering an immediate MRI following the vision field testing. Until the results are all back I am to double my Medrol, stay on the 20Mg of MXT, and use the vicodin for the pain.

This is scary. He said that there have been cases where the neuritis is reported with Remicade and other bilogics so immediately when they see any nerve abnormalities they cease biolgic tx's immediately. My husband's aunt has MS and she's got a medical background. i will be calling Ohio today with the other many questions I have. I admit I am scared.

Elaine

[SandraJean]

Hi,

I'm so sorry to hear about your talk with the doctor and that you have to go off Humira. I can understand the fear you must be experiencing right now.

Hopefully when you go in person to be examained things will look differently and not as hard as it seems right now. I have had trouble with my eyes on and off for awhile, but I have mascular degeneration and also have had 2 cataract surgeries. I try to make sure I get into the eye doctors at leasrt once a year for follow-up. I am also on Humira.

Good luck

Sandy

[ouchyk]

Elaine,

I'm glad that you were wise enough to call your rheumy. Geesh, I don't blame you for being scared. Hope that everything will turn out okay.

Hang in there,
Karen

[RichJ]

hi elaine,
im sorry to here that. i hope they can find out what's wrong. i wish you the best

try and have a good night my friend

richard

[Ihurt]

THE MORE I LIKE MY DOG!

Now the eye Dr says must have mis understood him (geez what a concept...a nurse mis understanding the doctor hmmmmm). He said I did NOT have an "active" case of optical neuritis, but there is "evidence" that I have had one (scratching the head now.....)

So .......now that I've missed my second shot of Humira, and my shoulder is so flared that Im actually in a sling (still scratching my head, but with the other arm that doesn't hurt)..........what to do?

Good thing I made an appt with the Rheumy for Moday. Would you believe I had to explain what the biologic meds were? Oh and all that while he'sw busy telling me is wife has Chrohn's? Good thing I got a copy of his notes before I left. Good thing that I won't be going back there. Good thing my brain doesn't hurt now from all of this.

Anyway, it is GOOD NEWS if you think about it. I can go back on my meds (I think). Will talk to the Rheumy on Monday when I see him. So consider me back in the Saddle....(I THINK) lo

Elaine

[janelee]

Girl...I don't mean to laugh at you...but how did you even keep up with that doc....geez....it is so confusing. Yepppers....I like my dog better than that doc too!!!

[Ihurt]

Jane....you can laugh all you wan't sweetie,I am lol! If not, I'd cry.

Elaine

[Ihurt]

SAW THE RHEUMY ON MONDAY. Rheumy wouldn't hear of me going back on the meds yet. He was not happy about the eye doc, didn't trust his judgement, so he sent me to a retina specialist.

Saw the specialist today who confirmed-there is an OLD neuritis, some gel thing's that could threaten the retina at some point, and "lattice" ( tiny holes or whatever that means). He will report to Rheumy immediately.

The general consensusis is that I will now need to have a brain MRI to rule out the beginning stages of MS. So Humira is still on the backburner. Days are filled with Lodine, Medrol and pain meds, but the swelling goes on. We need to get to the bottom of it before it continues to raise my blood pressure too lol. Thanks for the support, I admit, I am now starting to get a LITTLE worried.

Elaine

[tmartha]

Oh, Elaine, I'm sorry you didn't have a better visit - of course you're worried. But I am so very glad that your rheumy sent you on to a retina specialist. Boy, when our gut tells us we didn't get a decent first opinion, we'd better listen to it.

Do you know yet when you'll have the MRI? If you can sometime, I'd like to know more about the 'lattice' you mention and 'gel'. I see the eye dr. in a week (a new one to me, too). I haven't ever had glasses yet so that's probably one explanation, (perhaps I need them?). I've tried genteal eye drops (no preservatives) to help when they're burning and irritated, in case I have dry eyes for the first time in my life, but it doesn't seem to help so far.

Thank you for letting us know what's going on and I'll be keeping my eyes peeled for more updates from you, and thinking of you and hoping your pain doesn't get too out of control without being on meds. Sending warm thoughts, sending warm thoughts....
Tani

[ouchyk]

Elaine,

I hope that you can get in quickly for the MRI and get some answers, fingers crossed for a positive outcome in all of this. Positive as in negative for MS.

I can't even imagine how complicated it would be to treat both PA & MS.

Hang in there,
hugs,
Karen

[Ihurt]

Don't know when Im going for the MRI,but the doc'snote says he will probably not be putting me back on the biologics. He did say something about putting me on something else they use for RA which would be off label. Does anyone know what meds he might be talking about? Has anyone else been prohibited from the biologics, and if so what did they do in that event? Any input would be greatly appreciated.

Elaine

[smsspeech]

ELAINE,
hOW ABOUT JUST METHOTREXATE, PREDNIONE(yUCK), imuron AND/OR A SULFASALAZINE? YOU ARE IN MY PRAYERS,
SUSAN

[Ihurt]

I don't take any sulfazine drugs. Im on 20mg sub q MXT weekly, 8 mg of Methylprednisone daily., and anti inflammatory Lodine 3 @400 mg. They aren't enough to control the disease. This is the problem. My p got alot better since he increased the MXT to 20 mg from 10 mg and I do feel it working better to control some swelling, but it's still not enough. The only cocktail that was working for me was the REMICADE up until the 5th infusion when it crapped out. We did a 6th but that was a dud as well. I will never forget the wonderful feeling during those four injections. I was back to the "normal me" which I hadn't felt in over 14 years. That's what I want back, but I guess now that I cannot use the biolgics that won't happen??????
I don't know. I need answers and they aren't forthcoming as quickly as I'd like.

Thanks Susan!

Elaine