I posted two days ago about a headache that would not go away. It’s lasted almost two weeks. Today I had a very comprehensive temporal artery ultrasound. They did both sides of the head and the arteries under both arms. The procedure took an hour. I am so relieved to say they found no swelling anywhere. It was suggested that I see my neurologist to find the cause of headaches and back of scalp tenderness. I’m wondering if it could be occipital neuralgia. I’m going to stay on my 4mg of prednisone and continue with once monthly Actemra injections until I see my rheumatologist in six weeks. I will have another blood test in two weeks. I can’t tell you how much I appreciate all the constructive comments from so many of you. I feel like I’m never alone on this journey. Thank you.❤️
Update on possible GCA: I posted two days ago about... - PMRGCAuk
Update on possible GCA
That's very good news , you must be relieved.
I would suggest you take their advice as soon as possible and arrange that appointment with the Neurologist , and possibly try from them to get that Consultant to fast track refer you to the Pain management Unit as well to guide your treatment.
If it is a type of Neuralgic issue steroids wont help to treat that type of pain , you need to get that examined and start trying to find a neurological medication, or combination of those, to tackle that pain .
I have .... wait for it.... Trigeminal and Occipital Neuralgia, Fibromyalgia, Peripheral Neuropathy and Chronic Migraine Syndrome ( all caused by a health condition other than GCA/PMR, although the symptoms of them were worse whilst suffering from GCA/PMR).
None of those conditions were made better by steroids I needed to get a complex combination of other neuro medications and self care to keep them under control , it takes time and trial and error to get there but when they were controlled other conditions flared less and recovered better because of it.
When your neurological pain is well controlled you do find the flares in PMR and other inflammatory conditions can be less frequent too. One health condition does seem to poke the other because of the stress your body goes through while you try to deal with everything at once.
Take care , Bee
Wow! Can’t believe all the neurological conditions you suffer with. So sorry to hear that. Thank you for all the very good suggestions. I have a neurologist that I will call on Monday. Many of my pain symptoms stem from my neck. Ski accident and car accident. Thanks for your reply.
Are you getting medication for your post injury neuropathy and pain already , or any physio to help it?
Do you mind adding a few details about that it may well help with what advice you receive.
Many people can end up with long term neuro related pain after acute injuries that needs to be managed for life, with self care and sometimes with medications , but when they are you get that quality of life back.
Do you have a list of triggers for you Pain for each of your different health problems ?
It really does help to know them and to know what movements ot avoid or adapt on a day to day basis for Neuro and Inflammatory Pain Conditions.
It is so much better if you can avoid having the Pain kick off than having to treat it afterwards.
Prevention is better than cure as they say , plus if you know you haven't pushed any of your triggers and you still have growing pain it is easier to see which of your conditions is playing up all by itself and then you know which medication needs increasing temporarily to help fix the problem.
That is the problem , there are so many different health causes and injuries that can bring on Trigeminal neuralgia , or different types of neuropathy, and each needs it's own specific treatment combination to bring relief for each different patient.
All of my neurological conditions have improved considerably since I was given the right medication to treat my Dysautonomia and accompanying circulation issue. They aren't cured but the pain levels are less intense and the amount of neuro medication I had to take has reduced . What works for me wouldn't necessarily help another though, getting all the body issues properly diagnosed and under control does seem to be the key to getting the neurological pain syndromes under control enough to have more quality of life.
I hope things have improved somewhat for you now after your treatment, Bee x
Hi Blackcatlover 😊
I’m so pleased you’ve had a thorough examination, and with good results too! Great news 👏 I can’t really add to the excellent advice given, just wanted to say how pleased I am x
Thank you so much. Just knowing it’s not GCA makes dealing with the pain easier. I was going to have to start on 40 mg of prednisone today if the ultrasound showed GCA. I would have had the cleanest house in town. I wouldn’t sleep so scrubbing I would go!🥴 I still have to deal with the head pain but I’m sure a lot of it is generated from my neck. Thanks for all your support.
oh, thank you , you are kind.
No, I had to come off steroids on a horrible reduction plan and was meant to go onto TCZ by getting a Rheumatology approval. I still didn't get an appointment and was left without it. The only saving grace in the situation was that the GCA had gone into remission so there was not the danger of it instantly flaring up and effecting my eyesight. Although the type of steroid reduction and side effects I experienced because of the lack of additional support I wouldn't wish upon anybody.... well maybe the odd local Rheumatologist!
Obviously, Rheumatology were using the Covid situation as an excuse , but as they haven't seen me locally at NHS level in over three years despite strong requests from three other Departments Consultants to give me an appointment and help in my care I know that Covid isn't the real reason. They have no staff where I am , and especially no staff with experience in what I have so my case keeps being put to the bottom of the pile so that they can avoid it. They even admitted that to my Physio a few months before Covid stopped normal service.
Until Covid is over I can't have the same strength of complaint for the situation as I could. Timing was the final downfall , when all of my other ducks were in a row and I had other medical professionals behind the urgency for my assessments Covid lockdown arrived a week later.
sorry to hear about all the new issues with your face and eye , but I am glad you finally got on Actemra and got the benefit of it.
What a relief for you Blackcatlover, I am so glad. My GCA was spotted during the ultrasound scan - in my left armpit. I hope whatever is causing your head pain is an innocuous thing that can be easily remedied! I had a head MRI before my ultrasound, nothing showed, it was thorough.
Thanks so much. I guess the next step is a neurologist.
So glad I was some support to you then and that you have had such a positive outcome on the Actemra.
To be honest , if the benefits had continued to outweigh the risks for me , I would not have been unhappy about being on long term steroid medication, it's often the most effective drug solution for many people with many conditions.
I know a number of people whom have been on steroids or methotrexate all of their lives for arthritis , asthma and skin conditions. Without the steroid they would have had no quality of life at all.
One friend with severe asthma and eczema is a case in point , he had two options in life , stay indoors covered in wraps with his skin peeling off , hardly breathing ( these are his words that he says regularly ) or use the medications and get to live like everyone else. He does triathlons and has a boat now and the steroids and MTX let him do it.
A number of my friends are on 10mg of steroids as a life option for their RA and that works for them too. A couple of them were offered trials of biologic and they declined saying why fiddle with what works. There are pitfalls and side effects and it needs monitoring but steroid medication works, if clinicians can be so content with giving a drug long term for one condition they should start to be less over anxious in their management of it for others.
Part of the reason Consultants cause so much anxiety about tapering quickly is because they see PMR or GCA as a short term condition and as you should not need to stay on steroids for life they are under the illusion that it will be so much easier to get off steroids if you start as soon as possible. Well , people on this site know that isn't so if you haven't actually gone into remission or controlled your PMR ( and other conditions) before you start reducing the steroids , all you do is cause the thing to flare up and then you are forced to up the dose again.
I was referred to a neuro-ophthalmologist by my ophthalmologist. Toward the end of the visit, he touched two spots at the base of my skull, and it was really sensitive. I was diagnosed with occipital neuralgia and he put me on gabapentin. I'd had an almost constant headache since my GCA diagnosis in 2019. After two days on the gabapentin, my headache went away and hasn't come back. I hope that your situation is resolved as easily. Right now I'm on 15mg pred and Actemra weekly. This is the lowest pred dose since 2019. Fingers crossed for all.💖
Thanks so much for your reply. So happy things are going well for you. I am seeing a hand surgeon for my carpal tunnel on February 1. I can no longer hold a glass in my dominant hand. That’s my first step. Yesterday I went to New England Baptist Hospital for severe pain in my left foot. Having an MRI next Friday. I am so sick of going to doctors but I’m making this new year a time to deal with the pain that can be treated. Hoping both problems can be fixed. I realize that my head pain also needs to be addressed so it will go on the list. Getting old is not for sissies!
Last sentence - no it’s not!
Thanks for your supportive message. Last year was my sciatic year🥴. Went to physical therapy for that and now start my day with a series of ten exercises that I do every morning before I start my day- even before my coffee. I have two herniated discs that pretty much behave if I do my exercises religiously. You make my decision to tackle as much of my pain as possible seem like a good decision. I have an MRI on my foot next Friday and the week after that I see a hand surgeon. I feel like that’s progress. Third on my list will be what I think is occipital neuralgia. Thank you for your support.
Here, here~! Good for you and a good plan~! Sending positive vibes~~~💖
Thanks Grammy80. You have always been an inspiration for me and many others.❤️
So glad to hear you were cleared of GCA. Hoping they find the source of your issues!
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