Puzzled

[Blackcatlover]

I have PMR and possibly GCA. I’ve struggled for almost four years to control my pain and decrease my Prednisone. Adding the drug Actemra has really helped. I am currently down to 4.5mg of Prednisone and 4mg of Actemra by IV once a month. I get headaches off and on all through the month. Some are pretty strong. I’ve had a biopsy of the temporal artery and an ultrasound of my head and upper body. Both did not show GCA. Would the pain of GCA come and go? I guess I’m just looking for reassurance. If it was GCA wouldn’t it just get intolerable and not go away?

[SnazzyD]

Do the headaches coincide with the Actemra. Headache is on the list of common side effects. What sort of headache is it?

[Blackcatlover in reply to SnazzyD]

I do get headaches after my Actemra treatment but also get them during the rest of the month. They come and go and are mostly on the side of my head above my ears. Top of my head feels very tight. Thanks for replying.

[jinasc in reply to Blackcatlover]

Try this, spread your fingers through your hair and gently tug......do this all over.

Each hair has a little muscle attached and that relieves the tension.

Mind it sound to me as you are not on enough pred.............once on you should have no headaches etc at all.

I started on 60 mg and over 5 years into remission. I never had a headache from after the first 6 hours on pred.

I would be asking some questions and soon.

[Blackcatlover in reply to jinasc]

Are you saying it sounds like GCA? Hoping it’s occipital neuralgia or maybe a migraine. Thanks for responding.

[Blackcatlover in reply to Blackcatlover]

I guess I’m hoping someone knows that GCA doesn’t come and go. That if it was GCA it would just keep getting worse until I increased my Prednisone.

[jinasc in reply to Blackcatlover]

No, I misread your post and did not realise you were hoping for occipital neuralgia, so when I read your response, being nosey I thought I would look up the symptoms I has had never heard of it.

So ignore what I posted, except for the tug on the hair, and take a look, if you have not already at the thread below.

google.com/search?client=fi...

If it was GCA it does not come and ago aand if the symptoms are ignored and left untreated you can lost partial or total sight.

Someone who knows more than me will be along soon.

I do so hope this does not make you worry more.............have you spoken to your medics?

[Blackcatlover in reply to jinasc]

Haven’t spoken to my Rheumatologist. He just leaves everything up to me. Thanks for all your help. Still having trouble sleeping because I’m worried.

[PMRpro Ambassador in reply to Blackcatlover]

Wrong place - occipital neuralgia is at the back of the head. over your knowledge bumps.

[Blackcatlover in reply to PMRpro]

The nerves also run on both sides of the head. Always feel the pressure at the back.

[Blackcatlover in reply to PMRpro]

Does GCA come and go or does it gradually get worse?

[Blackcatlover in reply to PMRpro]

It’s 3:00am and having trouble sleeping. I trust your knowledge about PMR and GCA. I’m down to 4.5mg of Prednisone and I’m afraid to jump the gun and assume it’s GCA but anxious about losing my sight if I’m wrong. How high would I have to go up on my Prednisone to see if pains disappear and for how long. Would I have to use the DSNS method to taper. Waiting to get a cortisol test but put off because of Coronavirus. Sorry if this seems to ramble.

[PMRpro Ambassador in reply to Blackcatlover]

Impossible to say - and your symptoms really don't sound typical of GCA. Have you tried the chewing gum test? Chewing gum is a suggested way to check for jaw claudication:

sydney.edu.au/news-opinion/...

Chew gum at one chew per second for 2 to 3 minutes. If you develop jaw pain that then goes away when you stop it is highly suspicious of GCA and merits medical attention.

But trying a few days of a much higher dose, even 20mg, doesn't mean you need to do the DSNS taper. You can drop straight back to the low dose even after 7-10 days.

[Blackcatlover in reply to PMRpro]

Thank you so much. Don’t have gum but will find something to chew. Good to know I can try 20mg for a few days and then drop back down. Thank you for your advice.

[Blackcatlover in reply to PMRpro]

Tried the chewing gum test- no claudication. I feel relieved on that count. I am going to lie low for a few days. Took a Tylenol this morning but it didn’t help. Some of it is stress and not sleeping. Thanks again for your great advice. I may even be able to calm down.😛

[Blearyeyed in reply to Blackcatlover]

Have you been properly checked for Trigeminal or Temporal Neuralgia or Chronic Migraines. If you regularly had headaches before GCA you can find that it is one of the more common additional symptoms and it does get confusing to know what Pain you are suffering from.

Have you ever tried Migraine pain relief , like Migraleve or Sumitriptan , or relaxants like Amytriptyline and found relief?

Do you get any relief from this pain from Paracetamol or Codiene?

Do you drink enough each day and eat a low sugar / additive free diet?

It may be worth trying other Pain relief and being checked for a GCA Flare if things do not improve.

I found that my GCA pain was pretty much constant and non of my other Neuralgia or Pain Medication brought me significant relief .

I also find that Pred only gives minor relief if I am having a Flare of Migraine or Neuralgic Pain.

[Blackcatlover in reply to Blearyeyed]

Thanks for your reply. I’m going to give Tylenol a try but will wait till morning because I had two glasses of wine with supper. You give me hope when you said your GCA was pretty much constant. I had migraines in my twenties but at 74 have not had any since. Pains seem more centered around ears but left eye too. Thank you so much. My doctors office is closed. Must call 911 for an emergency.

[Blackcatlover in reply to Blearyeyed]

Thanks for your advice. I have seen a neurologist and been diagnosed with occipital neuralgia. It’s heartening to know that Prednisone doesn’t touch your neuralgic pain. I think with all the stress in the world, I’m sure some of my pain is from stress. Doing my mindfulness and relaxing more. I’m sure I’m an ADHD adult. Might even be some of my adrenal glands giving me a problem. Thanks so much. I never feel alone with this site.🤗

[Blearyeyed in reply to Blackcatlover]

The Adrenal Insufficiency certainly does add to how well we can respond to control Neuralgic Pain , and Stress which builds Tension in the body , and especially the neck area is a big trigger for ON.

It's good that you are going to increase your Relaxation. I found Body Awareness over the years has definitely helped reduce my symptoms , start recognising when you tense your neck and chest area doing activities and actively react and relax your muscles and posture again. Work out what your triggers might have been when you get growing pain.

Leaning your head down too much while reading or using a computer.

The cold and wind can affect it.

Putting your hair in tight styles , bands and clips of bobbles.

Washing or brushing your hair too vigorously.

Using weights and carrying heavy bags.

Quick head movements but also not regularly moving your head and neck.

Light scalp massage with the fingertips helps , as does putting gentle pressure with a flat hand on the Occipital area when pain is intense.

Use your Paracetamol but try to request being put on Pregbalin or Garbepentin if it is chronic or recurrent . Start with a minimum dose and just using it for two weeks at a time then a taper week if the Flares are not common .

If you are already on these medications you may need to increase their dose as the PMR/ GCA can increase ON pain and Migraines as well , it works like a trigger too.

Good luck with it

[PMRpro Ambassador in reply to Blackcatlover]

Were you are preemie birth???

[Blackcatlover in reply to PMRpro]

No, a nice healthy seven pounds.

[PMRpro Ambassador in reply to Blackcatlover]

That's more than both mine together!!!!! Just wondered - it is a risk factor for ADHD

[Blackcatlover in reply to PMRpro]

Not sure! Have a nephew with ADHD too.

[SheffieldJane]

I thought that too about a GCA headache, that it would be severe and unusual but my Scans ( US and MRI) was called for because of a dullish headache on the right side of my head that lasted 11 weeks. My head never actually feels clear, always a bit of a cottonwool head. No sign of Temporal Arteritis in me either but as you may already know Large Cell Vasculitis under my left arm ( upper extremities only as far as I know). I feel creepy skin symptoms and have aches where my lymph nodes are and pains across the shoulders - mainly left side. A headache of sorts every day. I may well be having further scans. Make sure your doctor knows. It so hard to be sure, doctors aren’t sure. Sorry I know you want more certainty, so do I.

[Blackcatlover in reply to SheffieldJane]

Thank you so much. Such uncertainty.

[Blackcatlover in reply to SheffieldJane]

Just read what you are going through. I’m so sorry. The fact that you took the time to reply to me shows what a very special person you are. Thank you for your kindness.

[SheffieldJane in reply to Blackcatlover]

Bless you. It really helps me to feel better, if I stick my two penneth in, with other people’s situations. Yorkshire expression meaning my little opinion worth two pennies. 😉 ( not sure how to spell it). Pen’th?

[Mary63 in reply to SheffieldJane]

Penn’orth!

[SheffieldJane in reply to Mary63]

😂 honestly, I am losing it.

[Mary63 in reply to SheffieldJane]

No you’re not. I tried various versions and then looked it up ! Spelling is my forte and it upset me not to know

[Blackcatlover]

Hope my pains are some form of neuralgia but don’t have the electric pain you describe. Have been diagnosed with occipital neuralgia by a neurologist. Never had shooting pains. Just had my Actemra treatment this week and hope that gave me protection from GCA. Thanks as always for your helpful information.

[Blackcatlover]

So sorry you have to go through that. No electric shocks for me just a dull intense pain through the back of my head moving towards the front as well as one side or both. Can last for days or weeks.