GCA Neck pain

[DHEH]

I was diagnosed with GCA in October 2022. Started on 60mg of Prednisolone & titrated down now 3mg. Have a great GP with whom I have a telephone appointment every 2weeks. Many, many side effects from the steroids, too many to list but now my main ones are severe pain in neck & exhaustion. I feel quite debilitated. However I have come a long way but feel I have lost who I was. I would appreciate any input please. Dorothy

[DorsetLady PMRGCAuk volunteer]

Would say severe exhaustion is probably down to adrenals stuttering -see this from FAQs

healthunlocked.com/pmrgcauk...

Not sure about neck pain -did you have similar pre diagnosis? Or have you done something quite innocuous that might have caused it - has it come on suddenly-or been brewing?

[DHEH in reply to DorsetLady]

No problems before taking steroids. It is difficult because of the pain to keep my neck up.

[DorsetLady PMRGCAuk volunteer in reply to DHEH]

Okay, then if you haven’t done anything to cause it -pillows /mattress okay? It does need checking out. Arthritis or something similar which may have been masked when on higher doses of steroids..

Just seen your reply to SD - does need checking…

[SnazzyD]

Yes, I fully identify with the lost feeling. For me it was losing my previous life which was bound up with my identity. I have had to learn who I am without those things painting the picture. You are 15 months in and still very much in the thick of it and there is more to go. That may sound discouraging but I mean to say, there is still lots of room for improvement in time. This isn’t the end.

Low adrenal function can make one feel like an empty husk. I struggled with it for many months. Some don’t have trouble for long or at all. Do read DL’s link; essential reading for those under 10mg.

Neck pain - can you say more detail about it? Have you felt it like this before?

[DHEH in reply to SnazzyD]

The neck pain started with taking the steroids. I cannot hold my neck up for very long because of the pain.

[SnazzyD in reply to DHEH]

Difficult to say without a lot more detail. Where is it? What kind of pain? Where in the neck? Is it always there? What position do you have to hold your head in?

What does the doctor say?

[Kendrew]

Hi DHEH,

I too have experienced neck and head pain but it usually coincides with each taper. I also developed occipital neuralgia which caused some neck pain and stiffness but I had the symptoms thoroughly checked out to eliminate a number of other potential problems.

Others with more knowledge have already offered advice regarding your side effects so I won't comment further on that.

However, that feeling of 'losing yourself' that you mentioned, is a pretty common feature amongst so many of us on here, and it can seem like our pre-diagnosis lives are diminishing quicker than any expected recovery we may be hoping for!

Many of us will almost definitely recover back to a much better state of health, and for others, there will be significant improvements over time. Patience is the key though!

It's so hard to let go of our previous capabilities and accept that we have a new, potentially lower level of capability post diagnosis, but unless we can accept this, we're simply going to hinder our recovery further.

For a time, things have to be different.... modified, tweaked, adjusted, and although we may have to make unwanted changes, it doesn't make us any less of a person than we were before. In fact, this transitional period can enable us to grow in new ways...... discover different achievable goals & present us with new opportunities to engage in different pastimes/hobbies/activities.

I'm no longer able to go running or for day-long walks at the moment, and I had to retire early from the job I adored, but I've discovered the absolute joy to be found in so many other ways, such as tending my garden, observing all the different birds I now feed, helping out at our village library coffee morning (where I've made some lovely new friends) learning to knit & stone paint...even piecing together jigsaw puzzles! None of these things would have happened or even been considered before I developed PMR.

I'm not saying my life is easy because it's not, and there are new and different challenges emerging all the time. But I've had PMR for almost 5yrs now and it would have been a perpetually long and miserable 5yrs if I hadn't decided to at least try and embrace all that I can indeed still do and try to not focus on the things I can no longer do.

It's not easy to change your mindset, but it's not impossible either. There will still be 'down' days, and that's okay... just recognise the good days...or the 'better' days at least.

Things will....and do...improve. Just hang on in there.

[random901]

I have GCAPMR and a stabbing pain to the left of my neck happens a few times a day. It wasn't there prior to pred (now on 20mg). Also unpredictable bouts of exhaustion. Crafts and knitting have been a godsend - currently knitting teddies and blankets for Ukraine, which makes me feel useful. Feeding the birds and pottering around the garden is also a great tonic, and I'm finally not beating myself up for not doing something more "constructive". So looking forward to April/May when I can sow my tomato and cucumber seeds, and the weather is more conducive to positive and happier thoughts and feelings. Hope things improve for you, too 🙂

[HalleysComet]

you are very fortunate in having such closely monitored health care. You may have reduced a bit too rapidly. Get an adrenal function test from your GP and that may give some clue. The pain may have been masked by the Pred you have been taking. Keep us informed.

[Gca629]

Hi,

Sorry to hear your struggles

I’ve only been on the Pred for 3 weeks (50 mg)

Starting to taper from yesterday (40mg ) for 2 weeks so my journey has just begun.

[DorsetLady PMRGCAuk volunteer in reply to Gca629]

Good luck…

[Poetryb]

Hello, I am sorry you feel so tired. I felt tired recently and realised I hadn't been taking my Well Woman supplement, which contain 26 nutrients for health and vitality. I take the ones for 70 plus. I do feel better for taking them. They are supposed to help with health and vitality and cognitive function. Maybe ask your Dr first. I hope you will feel better soon the pain sounds as if it needs investigating though. Now that I am off Pred I take Nurofen for pain, as recommended by a physiotherapist. I try to eat a good diet of fruit, vegetables and salad, with eggs, chicken and a little beef and liver once a week.

[Bluey-1]

You have come a long way and done very well. I was diagnosed July 22 and am on 3.5mg. Your feeling of having lost who you are resonates with me. I really struggled over Christmas/NY. I got Covid and celebrations (which I so needed) with friends were cancelled. Saw a lovely GP yesterday about a Morton’s neuroma (another problem to add to the collection) and I pondered with him re GCA why I felt fine for a couple of days then can go into an exhaustive state for the next couple of days. He looked at me sympathetically and said that it was the nature of the illness. I felt listened to and reiterated his comments to my husband. I had so much support and sympathy during my first year of this but I think compassion fatigue can set in and I try now to ignore the the illness while quietly pacing and adjusting activity. I think these strategies have helped me to get to this stage with just the one minor flare three months in. Take it slowly and think how far you’ve come from a year ago. I’ve picked myself up psychologically since New Year and can think more positively but it’s hard. I’m still nervous about travel beyond our lovely trips to our friends’ villa. They have been amazing and invited us to Portugal with them for a few days next week so the ups do follow the downs. I have to hope I can go into remission and gain more of the energy and confidence in my health that I used to have. I wish this for you too as we are both at a similar stage in our experiences.

[PMRpro Ambassador in reply to Bluey-1]

" why I felt fine for a couple of days then can go into an exhaustive state for the next couple of days"

Try keeping a diary for a while. I will lay odds that on those good days you try to catch up with all sorts of things, then when you feel rubbish you are forced to rest more. The result is you feel better after a couple of days and the cycle starts again,

[Bluey-1 in reply to PMRpro]

As usual Pro you could well be right . I do keep a record of my restorative (or otherwise) sleep patterns as part of my pred log which I’ve kept from the start on the advice of my rheumatologist. Today is a record, third ‘ok’ day on the run so I’ll watch myself!

[Blacksley]

My issue has only been PMR which I have had since 2018. Through in my view bad advice from medics have caused a number of flare ups occasioned by reducing my intake of Prednisolone from a maximum of 30 mg, by too much too quickly. Since joining the forum I have listened to the experiences of others together with their very good advice am now reducing my dosage in small amounts slowly. My only side effects have only been the well known ones of delicate skin, much increased tendency to bleed and a lowered immune system leaving me vulnerable to infection. In 2022 I contracted a very heavy dose of Covid but because I had received the additional vaccination being on the at risk list, my lungs were protected and although I had a number of problems most have now gone but some Long Covid Issues remain. None of this is really relevant to your problems but please take onboard the good advice of others who have experienced similar issues and remember that we are all different and may inevitably react in varying ways.