The age old question - what is causing my symptoms?
For the past weeks I’ve been having increased joint, hand, and shoulder tendon pain, the tendon pain is worse on the right side. I have arthritis in some joints.
Ibuprofen alleviates some pain, the tendon pain not so much. I have been diagnosed with a torn shoulder tendon .
When I missed a pred dose last week I took 5 mg more for only a day and had a lot less pain everywhere.
For 3-4 days my tinnitus has been much worse, now joined by an annoying echoing sensation when I’m speaking. Hearing is worse on the right side. Had two ocular migraines last week on especially tiring days. Some occasional pain on the right occipital area. The occipital area is where I first had pain when diagnosed with GCA 6 years ago.
I’m without a rheumatologist at present.
My primary care doctor had been prescribing my pred but not really monitoring anything. She stopped prescribing it and referred me to a new practice for the pred prescription. I haven’t seen a new rheumatologist at another practice.
Our system is so backed up, it takes weeks to get anything done.
I’m in the US. Currently on 9 mg. Pred.
Not sure how to sort this out.
ENT, opthomologist, primary care? Find a new rheumy? None of whom communicate with each other.
Thank you for any advice or shared experiences.
Written by
Mstiles
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Can’t help you with most of your issues unless you are in US permanently. I guess otherwise, go to urgent care and describe your need for pred on an emergency basis. Be aggressive. With regard to tinnitus, I have it worse in the morning and bothers me when I am in silence. As a result, I always have the tv or radio on to drown it out. Some people use white noise machines. It is a chronic syndrome and incurable.
To me, all of what you say rings bells for being taken seriously in terms of a possible flare/return of GCA. Who now prescribes your pred?
Possible GCA is a medical emergency - it needs the same response as you would get if you were having a heart attack or a stroke. How is that dealt with in your system?
Since my primary doctor said she would no longer prescribe it, I just got a pred refill from the holistic MD I see. After reading about the hack to the prescribing system here in the US, I didn’t want to run out, so I have enough on hand if I need to increase. I also asked him to order sed,cpr, and Aic tests. I asked my primary doctor for them 3 weeks ago and still haven’t gotten the order which shows what a mess the US system is.
I’m in a small town in Northern California. My opthomologist is 45 minutes away at a university system in Sacramento. The local hospital is OK.
I called my ENT yesterday and can get in to see him in a few days or early next week. He’s very good and is familiar with GCA.
Heart attack, stroke is 911 ambulance emergency.
I’m not having serious head pain, sometimes when tired but doesn’t last long. No visual symptoms except for the two ocular migraines. I’ve had these occasionally for years.
Transportation is a huge issue with family, I’m just so tired of dealing with multiple medical problems.
On what grounds did the PCP refuse to prescribe it? I'd describe that as medical negligence when it involves a longterm, previously high dose steroid patient. You must not stop it suddenly, that could be life-threatening.
She referred me to another rheumatology system, aparently (the US fractured system), because I had seen a rheumatologist there once a few years ago? She didn’t give a reason. That rheumatologist was not knowledgeable.
I have tinnitus and hearing aids do reduce the noise. I have found on occasions it increases when my ears are blocked or from a middle ear infection. It is worth getting it checked out to rule both those out.
The increase of your tinnitus could be from so many things but I'd rather err towards thinking it has to do with GCA, just in case. I very recently had the same thing happen in regards to tinnitus. After a week of it, I suddenly had a very strong cold that hung on for 10 days. When the cold went away, so did the echo and I was back to my "normal" tinnitus. Not saying that's what you have though.
Do you have "walk in" clinics in your area? My clinic offers a couple hours each day when a person literally can walk in without an appointment to be seen by a doctor. Personally, I think it's their way of filtering out the hypochondriacs and cold/virus patients from filling up the appointment schedule. However, in your case you would at least get to see someone face to face and can be firm with the fact that potential GCA can't be put off for days or weeks at the risk of permanent vision loss. You'd be able to impress on them that you do have a history of GCA and the symptoms remind you of your previous bout with GCA - that this requires IMMEDIATE attention, not an appointment weeks down the road when it could potentially be too late. PMRpro's comparison to a heart attack is excellent and a good thing to mention in regard to why this needs to be dealt with immediately!
If you don't have walk in clinics, then I personally would be inclined to go to a local emergency room. I don't think you want to take a chance with something that's potentially so serious.
I’m in the foothills in Placerville, in El Dorado County. How is your rheumatologist? Is she knowledgeable about PMR/GCA, does she listen to you and work with you? I had a great one at Sutter but at the beginning of the pandemic she left and went to Kaiser and I’ve had no luck since then. I have Marshall Medical and UC Davis doctors also. I really need to find another rheumatologist.
Can your Marshall Med or UC Davis doctors refer you to a rheumy? Mine is Dr. Aggarwal in SF. As I said, she does do video appointments, but you would have to see her in person sometimes. It would be better to have one closer to your home if you can find one. Also, it seems that Sacramento must have some too? I wish you the best. I'm so glad we all have each other to direct and support us.
I hear you about dealing with multiple medical problems. Don't you wish we could just go on without any issues and not spend our days doing doctor stuff? It's very frustrating and isn't what we'd rather be doing with our precious time.
I also have major tinnitus. I just accept it as it's been going on for years. Let me know if you want my doctor's number. I hope you have a peaceful weekend.
Does your rheumy listen to you and work with you? Or is she one of those speed reducing, get off prednisone as fast as possible ones.
Thanks for your kind and detailed reply. You are such a good writer! In your bio you said you are an artist-me too. Is pottery your medium? Are you still able to create things?
My doctor does listen to me. She really does. She will push on the pred reducing, but she liberally prescribes it at the same time. I'm happy with her.
That's so kind that you said I'm a good writer. Thank you! I actually wrote a book, which I was never trained to do. It was published in 2017 called The Currency of Love. It's a memoir about my crazy life modeling in LA and Paris.
Ever since I got sick with this, I haven't done my normal art. We moved closer to my husband's work into a fixer upper and I remodeled it for like 6 to 9 months while on high doses of steroids. The men who did the work were so sweet to me and I did a lot from my bed. Then we did the landscaping for another 3 months. I love designing and doing construction work. Normally I do painting and pottery on the wheel. But I haven't done it since I got this illness. I hope I get back to it soon. What art do you do?
wow! You remodeled a house while on steroids! Must have been high the dose giving you energy!
I read your post about trying methotrexate, how is that going for you? Is your pain getting better?
Living in Paris and modeling sounds amazing, lots of wonderful memories I bet.
My art is painting and drawing. Have always loved to do it. I have a website and can message it to you if you want to check it out. Not sure if it’s allowed or relevant to this thread. It it’s what keeps me going.
I hear you on that. Art keeps me going too. I need to do it more. I'd love to see your work and website. I think it's ok. Especially if you message it to me. Yes, I was on 50 and 60mgs the work kept me sane. I'm only on my second MTX today, so I don't know. Last week it made me tired for 3 days after the shot.
Yes - private messaging comes under Chat. Click/tap on the Chat ikon and a page comes up. Click/tap on New in the blue box at the top of the page. It asks for a user name - type in the name of the person and a list comes up - select the name and click on it, then click on Next at the bottom right of the page, A new page appears for you to type your message like any other post but only the person or persons it is addressed to can see it. You can add several names to one Chat to make a group.
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RSV and Flare
Is it a flare or not??
