Any advice on temporal artiritis

[Jamie345]

Hi there everyone I wonder if anyone who has temporal artiritis like myself I've only recently been diagnosed and I'm on 40mg per day to help wth the polymyalgia, but on lying down in bed my ear neck head hurt like hell, so I'm not sleeping well at all, it seems to have a mind of its own to how much severity it will give me, I also have woken up to a huge red face, still feel really off side, I've driven from Esher Surrey to my sister in Stoke to visit, the drive was fine my back was as usual no worse, but no better,my face pain at present is my biggest bug bear? Regards glenys

[Hidden]

Temporal Aritritis. 40mg relieved my pain within hours glenys. Others have needed a lot more from what I have read on this forum. Sure good advice will be on the way shortly from the experts. I know how painful this condition can be. ATB.

[Hidden in reply to Hidden]

Sorry Jamie345 for some reason your post 1st came through as glenys. Hope the transition wasn't to painful!!

[Jamie345 in reply to Hidden]

Thank you

[DorsetLady PMRGCAuk volunteer]

Hi Glenys,

Sorry to hear you’ve got GCA, and although Rheumy has prescribed 40mg that may not be enough - it’s the lowest starting level usually recommended for the illness. As you still have pain that may prove it’s not quite enough, but from your earlier post I think you only saw the Rheumy on 13th, so you need to give it a few days to work. Plus as you’ve just driven from Esher to Stoke that will not have helped the situation.

My suggestion is give it a few more days, say until after weekend to see if things improve, if not, then can you ring the Rheumy or his team and ask if you should increase, and by how much, unless he’s given you advice already in that situation. Obviously should things deteriorate then you need seek advice sooner.

In the meanwhile have a read of attached, and try and have some “me” time, I guess (hope) you’re staying with sister and not driving back with the next few days.

healthunlocked.com/pmrgcauk...

Me: GCA 5.5yrs - in remission approx 20 months

[EdithWales]

Hi Jamie

Welcome.

Dorset lady has given you good advice. Many people need more than 40mgms at first. That’s a very long drive which wouldn’t have helped, try to be gentle with yourself

Me GCA 3. 3/4 years tapering to 4 mgms

[PMRpro Ambassador]

Is the 40mg relieving your PMR pain? It should be if it IS PMR. I assume you are under a specialist - but if your GCA (temporal arteritis) pain isn't being relieved you need a higher dose. You are close to everybody's favourite PMR/GCA specialist at Chertsey if you need one.

[SheffieldJane]

Oh Glenys poor you! I am so glad it's safely diagnosed though. My diagnosis is PMR but I'm sure somebody will be along with GCA.

Tell your doctor that the pain is still so severe. It maybe that you need a bit more initially.

I haven't heard of a red face before - all a bit of a shock to the system.

I wouldn't recommend long drives in your present state. You've got to start taking it really easy. This is a serious systemic illness.

[Jamie345 in reply to SheffieldJane]

Red face has disappeared so must have just been initial shock to the system taking large dose of pred , I have apparently got both GCA/PMR again confusing but he is no trying to get to the bottom of it all, I'm still not in a good place but two days I've been able to go out for a few hours Xmas shopping with my sister, loved it off back to Esher today, agree silly mistake to drive so I will be more cautious in the future!, if there is any group meetings near where I live I would love to join like situations. Thanks all

[PMRpro Ambassador in reply to Jamie345]

Not confusing at all - PMR can be one of the symptoms of GCA. They are basically the same disease but different expressions or affecting different arteries/blood vessels.

If you are in Esher, the Chertsey group is near you, a whole 8 miles.

Surrey

Contact: Shirley O'Connell

Tel: [phone]

and you will get links if you scroll down this page:

pmrgca.co.uk/groups/

It is an amazing group!

[Marijo1951]

I can only give my own experience which is that I started on 60 mg of pred and reduced to 40 mg after 4 weeks (I have both GCA and PMR). I got almost immediate relief on 60 mg. At one point after a couple of months, I had a flare up of GCA and my pred was increased from 25 mg to 40 mg for 4 weeks. I'm now gradually tapering - currently on 30 mg.

[Ponywoman]

I have the same terrible neck, ear pain so figure I now have GCA on top of RA Vasculitis. Started a year ago with neck numbness, going up into ear & around back of my head. I have waist long hair. Or did till it all fell out & turned grey overnite. Rituxan infusions saved me & hair is back, down to my breast & getting black! (I'd had dirty brown colored hair for 68 years!) sorry about my "hair" story but I've found temporary sometimes instant relief from my GCA like pain by rubbing on a neuropathy oil I got thru Amazon that has Frankincense & Myrrh in it. I use a cotton pad to rub the oil on. MY problem is trying to keep my now long again hair from getting a greasy look from this oil. I do try to pin my hair back before oiling. And can't put the oil where my hair is. Truly just "oiling" the ear & neck part that hurts so badly, really helps! Amazing at times the difference after applying the oil. I'm back up to 20mg prednisone for now...worrying about the eye on this involved side...the eye that I just had cataract surgery on. Get Rituxan again in 2 weeks. I always get the red flushed face from the 100mg of prednisone I'm given before the Rituxin. Same red face when I used to get knee or elbow steroid injections, too. Don't know if this applies in your case???

[Jamie345 in reply to Ponywoman]

Very similar to me! My hair has really suffered started last October 2016 when I had back problems, had a fusion op in February but still hair falling out then may all this GC/PMR suddenly started, but my hair has slowly recovering but not easy to style and feels very fluffy. SAD!

[Ponywoman in reply to Jamie345]

I couldn't stand my new frizzy hair coming in! I wanted my waist long straight hair back. So I bought a hot iron thats like a comb & it worked. I am also constantly clipping off the curley hair tips. Some of these hairs will grow one way for a half inch then reverse direction then do it over again. I've figured out part of the reason for the new hair coming in kinky is because, being grey, each hair is half the width it was when each strand had color on it. Without weight, each grey strand grows willy nilly. I thought older ladies permed their grey hair but now think that grey hair might just be naturally curly. My Physical Therapist I had after knee surgery, had lost her straight hair to cancer treatment but when it grew back, her hair is also grey & curly. My hair, as I mentioned, is finally coming back straight AND getting black. I make sure I take biotin plus I cheat maybe? I've taken for months, Fo Ti-- an herb famous for hair growth & maintaining color. IF you try it tho, do NOT quit it because in my experience over the years, stopping Fo-Ti will cause all your hair to go into the resting stage. Meaning, one can suffer quite a hair loss suddenly. I suspect the herb works by preventing about 1/3 of the hair going into its normal resting period.

[PMRpro Ambassador in reply to Ponywoman]

I have totally white hair - have done for the last 25 years and it is still long and smooth and thick. I don't think you can generalise about grey hair and lack of weight of the hairs. I did have a period when I was put on Medrol when it was more like a brillo pad (wire soap pad) but when I stopped it it all grew back like it had been before. It was curly for a time but as it grew out it has become straighter.

[Ponywoman in reply to PMRpro]

Another of my theories shot to heck! Have always read that blonds, as a rule, have finer hair due to the type of melanin that makes up blond hairs so I extrapulated this fact(?) to grey hair. I've raised Appaloosa horses for 45 or so years & esp in winter, the white hair that makes up their Appy blanket patterns, stays shortish, smooth & slicker than does the Appaloosa spots in the blankets! The black,brown,sorrel,etc colored spots can be raised up above the white blanket as much as an inch. The colored hair in the spots is much thicker...looks funny...like buttons. I assume that melanine makes the spot hair thicker...???

[PMRpro Ambassador in reply to Ponywoman]

I'm sure it does something to the texture - but it's so long I can't really remember what is pred and what is being white! But it was long and thick and wavy if I let it grow - and had a terrific bounce my wonderful hairdresser took advantage of. PMR floored that though - not pred.

[Glennda]

Hi, Jamie345. I slso have GCA with PMR. I started on 60mg per day for one month. Then started dropping t mg every 2 weeks.

I have also had difficulty putting my head flat. Raising my head helped. Also, needed sleep aides in order to sleep on these high dosages of prednisone.

My body is adjusting better now.

I have also been having massages, accupunture and seeing a homeopathic doctor to see if I can reduce inflammation in my body. These are not cures! I need the prednisone, but massage and accpuncture help me to feel better. Helps get the swelling from the prednisone down.

But definitely check to see if you need a higher dosage of prednisone.

[Jamie345 in reply to Glennda]

Hi Glennda I have gone down to 2 pillows and have slept better the last two nights with the increase up to 40mg pred and the ear neck throat head, eased, I'm new on this road so I'm learning with the help of the forum.

[Glennda]

Glad to hear that it is going a little better for you! This certainly is a learning curve! New things happening at every step.

Don' t be afraid to ask for help ehen you need it!