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New to Autoimmune Diseases, concerned blurry vision
After continuing to not feel well after being exposed to COVID from 2 close contacts (one was husband) and testing negative at home, I went to urgent care with symptoms including dizziness, blurry vision, headache, all over joint pain, extreme fatigue. I tested negative for COVID and flu there. They also tested blood sugar since dizzy, which was normal. They diagnosed me with a viral infection and suggested I see a rheumatologist about the joint pain/stiffness and an ophthalmologist about the vision issues.
Prior to this, have history of plantar fasciitis/heel spurs, both feet, very recently extremely painful, especially when get out of bed in morning. Had cortisone shot in right heel. Also, have arthritis in right knee, gets to point where it’s so painful to stand from sitting position, had 3 rounds of cortisone shots (about 6 months apart), next step was gel shots. I would run events at work and become so debilitated (feet pain, knee pain, extremely fatigued and run-down during them and need 1 plus days to recover. I would just think this was “normal” for me due to aging and needing to lose weight. I share this because now in hindsight I wonder whether or not it’s all related to what’s going on now.
Ophthalmologist visit, vision was good, they saw no problems. They suggested seeing a neurologist for continued blurry vision.
Rheumatologist visit, bloodwork showed high inflammation in body, based on that and symptoms he sent me to vascular surgeon for biopsy of temporal arteries for possible temporal arteritis/GCA. Started me on 60mg of prednisone.
Biopsy specimen did not show Temporal Arteritis/GCA, which I learned may not rule out having it. Rheumatologist also mentioned PMR. Also other autoimmune diseases related to plantar fasciitis.
Vascular neurologist visit: sending me for MRI (routine brain/brain stem and orbits, waiting on insurance approval to have it. He also scheduled me for vision test with them. He also mentioned that the negative biopsy of temporal artery may not rule it out.
Rheumatologist has had me wean down from 60mg prednisone to 40mg, currently down to 20mg.
“Positives” of prednisone: no joint pain/stiffness, no pain from plantar fasciitis, no knee pain. I feel like a new person! I point out to my family, “look at me standing up and sitting down with no pain or problem.” I know it’s temporary and that prednisone has other bad side effects, but I’m taking this as a little win because it’s wonderful being free of all that pain.
Some other side effects have popped up, initially heartburn when on the 60mg prednisone. Extreme sweating bouts, even on the 20mg. Some breakthrough headaches and bloodshot eyes, mostly in morning, mostly right eye. Left heel pain came and went quickly on the 40mg prednisone. Have history of high blood pressure, have been on medication for it, that has been fluctuating since on prednisone. Blurry vision continues.
Not sure if related to prednisone or not, but started with scratchy throat last week, turned into congestion and loose cough, now just dry cough continues.
Sorry so long, wanted to give some detail to see if anyone relates to any symptoms and side effects, and if so, what their diagnosis journey has been like.
Also, very interested in finding out if other people have had blurry vision or other vision issues and how that’s been for them and whether or not it effects driving and working (it has for me). The blurry vision has been a major concern for me. Thank you!
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It may take time to arrive at a diagnosis. You have done
your best to cover all of the diagnostic exams.
The systemic inflammation can account for most of your symptoms. Arthritis and rheumatic disease will respond to hi dose prednisone.
Another helpful screen for arteritis is the 3D color
Doppler. It may not show the inflammation since you have been on prednisone. Do you have any skin problems to suggest psoriatic arthritis?Make sure your
doctors screen for cardiac risk and consider a Dexascan
if you are on long term prednisone. Vitamin D3 and calcium supplements are indicated as well. Keep active
exercise and know all about your labs. Make sure all of your consultants are communicating and know your medication profile.
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4 ReactionsDo you have cataracts? Migraines? Those are the two reasons I have blurry vision (despite having two autoimmune disorders). There are autoimmune causes though.
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3 Reactions@seniormed
Thank you for your reply. No skin/psoriatic arthritis issues. I do plan to schedule a follow-up with my cardiologist so he is in the loop and can keep on top of it any cardiac risk. I was just talking to a friend yesterday about getting a bone density test, I’ve never had one and need to make it a priority now. She also mentioned vitamin D and calcium supplements. Makes me why the rheumatologist didn’t mention it. Thank you again for your helpful feedback.
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1 Reaction@lni888
Welcome to Connect!
It sounds like you have had a good work up so far. You have also gotten good advice here.
I agree that it unfortunately can take time to get a proper diagnosis when dealing with autoimmune illnesses.
Try to keep a log of all your doctor visits and save copies of all testing done.
I also make a note on my calendar if something unusual happens.
Prednisone feels like a miracle drug sometimes- unfortunately it has side effects with longer use.
You should definitely have a baseline bone density test- especially if you are a woman.
You mentioned how exhausted and in pain you are after running events at work. It’s possible that you also can have fibromyalgia. Fibromyalgia often coexists with autoimmune illnesses and arthritis.
I especially hope that you get an answer to your blurry vision soon.
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2 ReactionsThank you for your reply. I do not have cataracts, but I have had migraines, not a lot and not often. For a while I had ice pick headaches above my left eye, which is the eye that is more blurry and gets more bloodshot now. Is there anything that helps or triggers your blurry vision?
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1 ReactionThank you for your reply. Yes, keeping a log of doctor visits has been helpful, especially when I go to new doctor and need to update them. Good idea to save copies of all testing, I will start to do that. Each doctor is on a different patient portal so having copies will help to have it in one place. I agree having a baseline bone density test will be good to have - and yes, I’m a woman.
I’ll check out fibromyalgia. Thank you.
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2 ReactionsA bone density test is extremely important when taking prednisone or methylprednisolone. Both can cause fragility in your bones. It seems like you’re suffering from PMR, and if so, the prednisone does work wonders!
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1 ReactionI have had vision issues along with a PMR diagnosis. I suggest you visit a qualified Neuro- Optometrist. You can find a provider near you through the Neuro Optometric Rehabilitation Association (NORA): https://nora.memberclicks.net/find-a-provider#/.
Simply put, they are optometrists who have specialized training and will uncover any issues with how your eyes and brain work together. It’s been a life (and sanity) saver for me. I wish you well on your healing journey.
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4 Reactions@Ini888 I wonder if the ice pick headaches on the same side as the blurry eye, could be a clue. I get blurry vision with migraines but that is episodic and it sounds like yours is more constant. Cataracts are an issue for me, but not you apparently.
Did the prednisone affect the blurriness? If so, could the biopsy have missed it because the prednisone had reduced inflammation?
You seem to have all the right doctors who are being quite thorough. Neurology and vascular neurology are both a good call. Not clear on what rheumatology found: is your ANA positive or was it sed rate or CRP that was positive?
There are all kinds of (brain-based and neck) connections between auditory, visual, facial, eye nerves that aren't fully understood. I am trying to get to the bottom of a painful connection between hearing/loud noise and facial nerve pain and numbness
I am not making progress. I do have a lupus diagnosis but that is not helping! I hope you have better luck!!
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2 ReactionsIt's good you went to an opthomalogist. I had blurring vision, losing seeing colors, flashes of light and black spots. I have Smoldering Myeloma (and PMR). Since I had an oncology appointment, I waited and asked him about the vision. He said it wasn't cancer related (which may or not be accurate) and discounted the issue. I called an opthomalogist right after and he told me to come in. It's the central vein in my eye being closed off by swelling and I'm undergoing treatments. Sight is diminished, try not to drive at night. I'm glad you're being careful, seeing the right people and asking the right questions. Best to you.
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6 Reactions