Connect
Worried about GCA
I was diagnosed with PMR in June after months of severe morning pain in my hips to mid thighs and my neck. I started at 20 mg which made a huge difference. I tapered down to 17.5 mg by mid July and was hit with a big flare. Back up to 20mg which did not help then up to 30 as per my Family Dr. Things hot better and I started to taper again. I got to 10mg
Since then the pain has developped in other areas of my body for sure. My shoulders are impacted and movement is restricted, my hips and thigh still, but not as badly. With the consent of my Dr. I have been splitting my dose 7,5 in the morning 2.5 late afternoon to see if it helps me more in the morning.
It was helping .. however 3 days ago I started having occasional blurry vision again. I had occasional blurry vision back in May. I had an appointment with the optometrist who believed that it was due to my macular pucker and referred me to an ophthalmology surgeon. It was a few months before I saw him. In the mean time I was diagnosed with PMR and put on prednisone. My blurry vision disappeared. I was not particularly worried about it as I was going to see the specialist. Now I have started reading on this forum about GCA and realize that though i have not had the typical symptoms .. pain in chewing, tender temples .. i have the occasional blurry vision, transient pains in my head, above my eyes, on my cheek bones and sometimes wake up drenched in sweat. All of these symptoms were very present prior to my diagnosis of PMR but went away when I was put on 30 mg of prednisone. GCA was never discussed at the time, I knew nothing about it. Anyway now I am worried about it. Of course being the holiday season my GP is not available. In an abundance of caution i have increased my dose to 17mg .. my blurry vision has gone but I still get occasional shooting pains in cheek bones and behind my ears and forehead, especially in the afternoons and evenings. So i split the dose 15 in the AM and 2mg in the PM. I do not want to loose my sight. Should I take more prednisone until I can connect with my GP?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
Thank you for these links, they are always very helpful.
Thank you very much, it's good to hear that increasing my dose to 17mg was on track. My vision is no longer blurry and my PMR symptoms are much less. I will get in to see my Family Dr ASAP and request a referral to a Rheumatologist.. though I know it will be a long time before i get to see one.
Many thanks again to all that have reached out.❤️
Do Canadians have to pay for prednisone? Most medical insurance in the USA, private or government, will happily pay for prednisone because it is inexpensive. . In the long term, the side effects associated with prolonged treatment with prednisone may cost a lot more in terms of health care costs.
"The annual incremental cost of steroid-toxicity ranges from $6000 to $30,000 depending on the dosage.[1]"
https://www.steritas.com/insights/steroid-toxicity-the-cost-to-healthcare
--------------------------
I only got treated with a biologic because of my long term (decades) of Prednisone use and my inability to taper off Prednisone. My rheumatologist didn't think taking Prednisone for the rest of my life was a good outcome.
-
Like -
Helpful -
Hug
2 ReactionsGood post. Good advice. Time is of the essence.
-
Like -
Helpful -
Hug
1 ReactionI agree that time is of the essence under the circumstances.
I have never been diagnosed with GCA but I did have recurrent flares of uveitis. An inflamed red eye was hard to ignore and was obvious to anyone who saw me. Other symptoms included blurry or foggy vision, floaters, photophobia and occasional flashes of light before being unable to see. For me, there were plenty of symptoms but not too much pain before I couldn't see. Even when I couldn't see, my uveitis flares responded quickly when I took 100 mg of prednisone.
I'm grateful for the ophthalmology department at the nearby University. I knew the phone number from memory and could call it any time of the day or night and someone always answered. All I needed to do was mention "uveitis" and I was immediately asked how soon I could come in to be seen. It could be a holiday ... it didn't matter because there was always an ophthalmologist who handled emergencies.
I got somewhat nonchalant about uveitis because I could somewhat tell how serious each flare was. Some flares of uveitis developed more slowly than other flares. I once went to a rheumatology appointment with a red eye. My rheumatologist immediately asked me if I knew that one eye was red. I knew but I didn't call the ophthalmology department yet. My rheumatologist called the ophthalmology department for me and refused to see me until I went to see the ophthalmologist first.
My rheumatologist always asked me about symptoms of GCA after I was diagnosed with PMR. She made sure I knew those symptoms and what to do if I ever had the symptoms. I frequently had facial pain because of trigeminal neuralgia and that can be mistaken for symptoms of GCA.
Trigeminal neuralgia and GCA are both conditions that can cause facial pain, but they are distinct entities with different causes and mechanisms. Alterations in the innervation of the eye by the trigeminal nerve can also affect vision.
I had surgery for trigeminal neuralgia but now I have neurotrophic keratitis as a complication from the surgery. I'm at risk of developing a corneal ulceration. Treatment is aimed at corneal protection and preventing vision loss.
https://www.ncbi.nlm.nih.gov/books/NBK431106/#:~:text=Neurotrophic%20keratitis%20is%20a%20degenerative,this%20condition%20experimentally%20in%201824.
--------------------
Sometimes I think it is a miracle that my vision is still relatively good. Except for the medical specialists I have seen, I probably wouldn't be able to post this.
"Access to medical care" is part of the problem and receiving a correct diagnosis and treatment is the other part. I was lucky and didn't have any problems with either part.
-
Like -
Helpful -
Hug
3 ReactionsHello @dadcue thank you for the link. I really appreciate all the good info you send, it is so helpful!
In Canada we have universal health care which is managed by each province. Each province has different rules and coverage. It covers Family Drs (General Practitioners, NP's) and specialists visits. Hospital stays and ER visits. It covers a whole lot of diagnostic testing: Xrays, CT scans, MRI's, Ultrasounds etc ... we are pretty lucky in that respect!!! However that said there are long waits ... especially for the more expensive tests ... like CT's and MRI's .. up to a year sometimes depending on where you live. Rural areas are particularly affected!!!
However the only time they cover prescribed medication is while you are in the hospital or ER. A lot of people have extended health benefits insurance through their employers and if they are lucky their contract will have negotiated the continuation of these benefits when they retire. These benefits will cover a percentage of prescribed medications, chiropractors, physio etc... Unfortunately I did not have this benefit with my employer.
There is a provincial plan called Fair Pharmacare for prescribed medication. Depending on your status and your yearly income they will cover the cost of these prescriptions up to a yearly maximum and after a sizeable deductible. In my case it is around $2500. Once I have spent that much they will cover costs until I reach the maximum at which point I pay again. I have never to date reached the total deductible.
I do hope you are doing well and so glad you are off the Prednisone!
Thank again for all your good info.
@dadcue You sure have gone through a whole lot! Thanks once again for the links and info.
I wish you all the very best in the New Year! A special wish for a year that is kind to you, especially health wise, and brings about good outcomes. Warm wishes! Michik