Inflamed neck arteries/GCA?.

[lottieloulou]

I can not seem to reduce Pred lower than 3mg without feeling my head is going to explode at night while lying down to sleep. Can feel pulse in my neck veins/arteries. Always eases if I take 5mg for a few days then have to start all over tapering down again. Started on 20mg for PMR in Feb 2018 but had worsening symptoms for 5 months before eventually diagnosed. Almost bed bound at 55!, Symptom free now and fully mobile apart from this scary pressure in head and neck. Eyes seem fine, BP normal, could this this be GCA? I have never seen a rheumatologist and my GP is pretty nonchalant about it all. Steroids on a repeat prescription now for over 3 years with no review. Seems I’ve been left to fend for myself . Any advice please and should I try and see GP?

[PMRpro Ambassador]

Can you avoid it by stopping at 4mg? It sounds as if 3mg is a step too far - but I'd doubt it is GCA. You aren't reducing relentlessly to zero - you are looking for the lowest dose that works for you and it obviously is a bit more than 3mg.

If one GP isn't prepared to be helpful - try a different one! Have you any signs of sinus problems? You can have chronic sinusitis that could cause the sensation and a bit more pred may be relieving it.

[LemonZest11]

I am experiencing a similar condition. I am a bit lower than you, transitioning from 2.5 to 2mgs, but at each transition since about 4mgs, I have had very sore neck transitioning into headache. I have sore shoulders as a side issue and each reduction compounds this, but I think it’s related. Good news is though, after about four weeks on the new dose, the neck and horrible headache ease until gone completely. How long have you persevered at 3mgs? I really struggled and asked for help on here, and even increased my dose, but over the past few months I am learning that headache and neck pain are my reduction side effects, or so I think. Did you persevere for very long on 3mgs.

[Grammy80]

You have gotten some good advice. I have a friend who has been maintaining at 1 mg for over 20 years. If she doesn't take it...her body tells her otherwise. My goal is to get to 5 mg, but if my body says otherwise....my goal is to be comfortable and safe. Maybe 3 mg is your comfort zone? or 4 mg? As was mentioned, you might simply feel more reassured if you saw another doctor. Take good care.💖

[SheffieldJane]

I would want a Rheumatologist opinion, the last thing we need is a nonchalant GP. Ask for a referral. I had PMR for 4 years and was then diagnosed with GCA/LVV by a specialist ultrasound scan. My only additional symptoms were differing blood pressure in each arm by 10 points and a headache. I was on 3 mgs of Pred but didn’t feel right. My Rheumatologist leaves no stone unturned.I am now on Tocilizumab weekly and 9 mgs of Pred. Since reducing below 10 mgs of Pred. I have experienced base of the skull pain and a stiff neck. I have invested in a memory foam pillow and a silk pillowslip ( for a creased face). Hoping that it is just tender neck muscles. Might be worth a try. I sincerely hope you haven’t developed GCA.

[LemonZest11 in reply to SheffieldJane]

That is exactly what my headache feels like Jane. At each slow reduction I have it for about 3 weeks. I was initially tempted to, and did, increase my dose, but now I have learned that it’s part of my reduction symptoms, well so far. I have a wheat bag that I pop in the microwave for a minute and I wrap it around my neck at bedtime, and sometimes earlier in the evening, and this helps get me through.

[SheffieldJane]

My memory foam pillow has definitely helped. First night, last night, no pain this morning.

[Lyndalou62]

Hi Lottie- i know this is an old post of yours but I was trying to research if anyone has same symptoms as me regarding strange neck pulse and i came across your post. Did your symptoms resolve? Or did you get any kind of reason for it happening? I hope you are well x

[lottieloulou in reply to Lyndalou62]

Hi Lynda, Gp seems to think it’s neck related, spondylitis possibly and referred me for physio, which wasn’t much use, advised to change pillows and improve posture, but symptoms remained.Since Xmas neck pain has been worse and so increased steroids back to 5mg, Hey Ho, pulsing has eased somewhat, so still no wiser really?

I’m same age as you and our initial symptoms were very similar too, I’ve just come to terms with learning to manage/ live with it and taking steroids for the foreseeable future. Hope you get to find out what is causing your symptoms and keep me informed. Take care x

[Lyndalou62 in reply to lottieloulou]

Thanks for your reply Lottie. I had my first ever face to face rheumy appt on tuesday( due to covid) - and sods law didn't have the neck thing start until the day after!!! Its quite disconcerting isnt it? I feel like an odd fluttering pulse and the left side of my neck feels stiff- a little on the right too but not as pronounced.The rheumy appt was pointless! He was running an hour and a half late and I was in the room with him for 10 mins and felt very rushed! I had a list of questions to ask! But didnt manage to ask half of them!

PMR is very strange and new things seem to pop up all the time! - sore fingers, numb thumb, shooting pain in little finger, chosocondritis, rib tightening and now this neck problem!!! Its good to know im not on my own.

My GP surgery is quite useless too at the moment- still no face to face appts unless youre dying! And different locums for some reason , so no continuity of care!

I feel a bit left to my own devices with PMR and never quite sure if things are related to PMR or not and the GPs are quite nonchalant about it. Anywho I will ring and see what they think about the neck stuff!

😀

[softekcom in reply to Lyndalou62]

I do. Strong pulse/throbbing in my neck. Tight throat, I've been choking a lot more than i've ever in my life, my voice has changed completely. Like a permanent sore throat. I have been checked over by ENT - all clear. Throbbing/pulsing continues, GP does not think it's anything to note. I thought it could be the Pred.

[PMRpro Ambassador in reply to softekcom]

In my case similar symptoms were/are due to the PMR. After the symptoms started I became unable to sing as before - my range dropped from high mezzo-soprano to more like alto and then I was unable to guarantee the right note would come out. I also had/have a permanent sore throat and I can chike on food and develop a major coughing/sneezing fit as a result. There are others that happens to.

If it were the pred it COULD be causing silent reflux - have you tried taking antacid medication such as famotidine or omeprazole - often handed out by GPs automatically with pred?

[softekcom in reply to PMRpro]

Yes, I took Omeprazole for months before I felt it was making no difference. I take Mintec three times a day now but that does seem to be making any difference either.

[PMRpro Ambassador in reply to softekcom]

Did they try something else? PPIs don't work for everyone.

[softekcom in reply to PMRpro]

I tried Lanzoprazole - same.

[Lyndalou62 in reply to PMRpro]

Hi PMRpro - this neck issue has only just joined the party and so far no sore throat. I hope you are well x

[Lyndalou62 in reply to softekcom]

Hi thanks for your reply. I havent contacted GP yet but I anticipate I will get the same answer as you! Hope you are well x

[softekcom in reply to Lyndalou62]

As good as can be! All the best - hope your GP appointment goes well.