Are these symptoms familiar to PMRGCA sufferers?

[Lgomez]

Hi everyone,I am new to the site.

I have had a couple of ops in the last year- one major on my spine and one minor.I have had 7 strong courses of antibiotics over the last year. A few days after minor op at end of September I developed toothache in my upper left jaw. I thought maybe they had knocked my bridge when intubating. It was quite painful but I was on holiday so I gargled with hydrogen peroxide and it seemed to fade. Came back again with a vengeance so, of course, I went to the dentist. Nothing she could find but she gave me antibiotics in case it was an abcess. Again I gargled and it seemed to fade away to a level I could bear. Came back again a week or so later and seemed to be along bottom jaw line, as well as top, I was feeling ill. I was exhausted. Having terrible sweats and couldn't control my body temperature. I kept waking at night with nausea. My face hurt and the skin hurt to touch, especially around my temples, cheekbones and I couldn't touch my head/hair without it hurting

Then I woke one morning and it felt as though the jaw pain had spread to my neck and shoulders. I was in agony. The root of my tongue hurt so badly. I couldn't swallow and I couldn't chew. My shoulders felt as though they were up to my ears and I couldn't relax them. My neck was extremely sore. It felt as though it was in a rigid spasm that I couldn't relax. It was totally exhausting. My face was so sore I couldn't put on makeup

I have troubles with my cervical spine so I put it down to that but after about 5 days when it got no better and I was actually crying with the pain, I went to the doctors and saw a nurse practitioner. She took blood tests as she thought it might be PMR. They must have come back ok as nobody contacted me. I rang and they said everything was OK. My pain got no better.

I made an appointment to see a doctor. He just shrugged and said my ESR was fine and gave me amitriptyline and naproxen. I already take Gabapentin in large doses and Zapain for my back but I was in such pain that I took these and it seemed to help. However, whatever this is, is back. I didn't want to go back to the doctors as I felt they thought it was either psychological or something to do with my neck problems.

Then I started developing blisters all over my face and my eye hurt Aha, I thought, shingles! That explains everything. I rang the nurse practioner again and went in. She called a doctor and I explained all that had happened lately. He said it was unlikely to be shingles as it didn't follow a nerve pattern. He thought it was herpes simplex because I was so run down. Well, I have never had a cold sore in my life! He also thought I could have PMRGCA. I said I had had blood tests done for that. He asked the nurse for last ESR and the recent test result had been 56. (Having looked that up it seems quite high considering it was 'OK')

He took more bloods and I get my results today. Considering this has been going on for quite some time, I am worried that I have PMRGCA and no one has done anything. I am concerned because (and I had never heard of this condition before now) I could go blind and I definitely have something happening in my left eye. Like, every now and then a translucent shade goes down or sometimes up. My shoulder and neck pain is really bad again and I can pinpoint where my temple is really sore.

Say my blood ESR is low again and they do nothing?

Does this sound like PMRGCA ? The office is closed for Christmas otherwise I would have asked them

Thank you

[Mary63]

I am not an expert, just someone who avidly follows all the posts on this site. Just in case none of the experts comes along soon I'm sure what they would say is go to A and E straight away As I have seen this advised many times in the year that I have used this forum when the sufferer has symptoms of GCA and eyesight issues, whatever the blood test results.

[Lgomez in reply to Mary63]

Thank you Mary63. Blood results came back as normal but after insisting, the Doctor agreed to start on 15 mg steroids a day. I hope this helps me as I seem to have been feeling bad for so long. I wonder how long it takes for it to work? I realise now, that in the past I have had blindness in one eye for several minutes and then it reappears again. This is quite some time ago though before all the other symptoms appeared. I don't know if this is part of this illness? I have also felt very old and weary

[Mary63 in reply to Lgomez]

If you have GCA 15mg isn't nearly a high enough dose. 40 to 60 mg is more usual. Again I'm not an expert but others in similar positions have been advised a 'better safe than sorry' A and E route. Bottom line is your eyesight could be compromised, and GCA is deemed a medical emergency.

[DorsetLady PMRGCAuk volunteer]

Hi Lgomez,

Really don't like that sound of your symptoms, and if it is GCA, then I doubt if 15mg will be enough.

Don't want to be alarmist, but with the holidays coming up you need to get this sorted today. You either need to convince your GP that 15mg is not enough, and get him to raise the dose, or get yourself to A&E. know that's not what you want to hear, but that's what I would do in your circumstances.

Please let us know the outcome.

[PMRpro Ambassador]

If that shade comes down over your eye again - please head straight for the ER and tell them the entire history. That is a typical sign for GCA. The loss of vision in the past you describe is also typical.

I am appalled you were told an ESR of 56 was "OK" - that is really pretty high. I'm also not impressed that with those symptoms and a history of visual symptoms you weren't put on a higher dose of pred. You did tell them about the visual symptoms I assume? The ESR isn't as reliable as some doctors seem to think and is only one part of the jigsaw - but your history of visual symptoms definitely needs to be taken seriously.

However - my local rheumatologist told me he believes that 15mg will deal with most cases of GCA although they do tend to use much higher doses for patients with visual symptoms to reduce the risk of permanent sight loss.

[Lgomez in reply to PMRpro]

Hi everyone who has been kind enough to reply so near Christmas.

I guess I must have misheard ESR - perhaps 26 not 56 because told bloods ok again and 56 isn't normal.

I was trying to tell Doctor about, now that I looked this up illness, as I had never heard of it before, how all the symptoms fitted - especially the tongue one - and how I had read that testosterone can sometimes influence blood tests and he told me to shut up and listen! I was a bit shocked as, actually I am quite scared and don't feel very well. Then he said given the symptoms he was willing to put me on prednisilone for a week and see how I go. That if I had any other symptoms or eye symptoms worsen, to go to the hospital. Well, of course, I didn't feel then I could talk to him and just said ok and that was that. I suppose the tablets should work pretty quickly and as long as they ward off blindness... To be honest, I only connected the brief moments of total blindness after the call.

I hope everyone here has a lovely Christmas and thanks for all your help

[isabella2015]

I don't like the sound of your doctor !! Thank goodness for this site the experts and the rest of us. I hope all gets better and you have taken the advise here poor you it sounds horrible.

[ShellyC23]

Please go to A&E and get checked out even if you do feel like you are "making a fuss". I was there the other night with my mother who has PMR. The entertainment is quite good if you go late at night but early morning may be less busy if you can get down there today. Your sight is really precious so please take care of it. Depending where you live you may even have access to an eye casualty department.

Best wishes

[Jackoh]

Agree with posts here. Sounds like you need to go to A&E today and give them the whole story. Perhaps write it down in note form first so you don't miss anything. Also if you can take someone with you for moral and emotional support that would be good.

X

[Lgomez]

Thanks Shelley and Jackoh

I am probably being a wimp but I just can't bear to go to A&E. I will take these for a week and see whether I feel any better. Reading the literature it says that 10-15gms will ward off eyesight loss in most cases and issues should resolve in 72 hours if it is GCA etc. I had the most horrible headache (although it isn't a headache, it is more a pain in my head) and leg pains yesterday and couldn't sleep until the early hours. Whether this is the steroids or not, I have no idea. I think my jaw pain is a little better but nothing dramatic so far in improvement. I just feel really embarrassed in case this isn't PMRGCA and is neuralgia instead. The hospital in Truro is so horrible and the few times I have been, the doctors are harassed and curt. I don't feel upto that at the moment with bloods that are normal. I feel they will be very dismissive.

Happy Christmas everybody. May you all have a peaceful one

[lindyloy in reply to Lgomez]

I had the same as you, a shade across my left eye, I also saw the back of my right eye (similar to when you have an eye test, when the optician shines their light in) it was really weird, I was sent to A&E straight away, although there are more knowledgeable people here than me, I urge you to take their advice, I am so glad I was sent,you look back and realise how urgent it all was. I had raised temporal arteries and wasn't aware of this disease I had jaw ache and I was told it wasn't GCA. because I could lift my arms above my head, but I was on the Pred.then. Don't be scared, just do it please.

[PMRpro Ambassador in reply to lindyloy]

"I had jaw ache and I was told it wasn't GCA. because I could lift my arms above my head"

Honestly - I do wonder sometimes! You can have GCA without ever having any signs of PMR, they aren't inextricably intertwined. You can have PMR without GCA and GCA without PMR - or you can have PMR symptoms as part of GCA. They are all possible.

[Ronswife]

I know how awful you feel that you won't go to the hospital but you are flirting with disaster. Do you have an eye doctor, hopefully an Ophthamologist but even an optometrist? Stress emergency. They see the dangers of GCA and will listen to your symptoms. Please do not give up. Your medical care has not been good enough yet for your symptoms. Please call and get help. The numbers in a blood test are not as important as the description you wrote us.

[SheffieldJane]

Lgomez, you really must heed this advice. Never mind that Truro Hospital is an under resourced unpleasant place,they will be obliged to properly investigate your nasty symptoms. You must gather your courage and go there for help. You know the risk you are running as regards your eyesight. Have you a friend or family member who can go with you?

Please don't sit on your hands, you might live to regret it so much.

Please let us know how you get on, we are all rooting for you here. Courage!

Blessings!

[30048]

I am not a doctor or an expert but good heavens...those doctor's should be sued. !! It sure sounds like GCA to me and that is dangerous. You could lose your sight. . Get on prednisone right away until you can find a good doctor. you can have the disease without the blood tests confirming it. You then have to go by the symptoms and you sure have them. Good luck.

[Robert17]

Lgomez

I am not an expert but a lot of people on this Forum are as I'm sure you are beginning to discover. One thing I do know is that the consequences of not dealing immediately with GCA can be catastrophic. In the UK some 3,000 people annually are losing the sight in one or both eyes due to untreated GCA as a result of mis-diagnosis or delayed diagnosis. That is a totally outrageous situation. So, if the people who have replied to your posts are urging you go to the A&E straightaway they are doing so for a reason and you really do go straightaway just to make sure. Please - Just do it.

[Lgomez]

I am seeing my doctor today after taking a week's worth of prednisilone at 15mgs. However, although the sensitivity on my face has abated somewhat and the very painful spot near my temple had faded too, my jaw pain and scalene pain in neck was still as bad. So yesterday I took 20 mgs against doctors instructions and jaw pain gone! Had a bad night though tossing and turning and feeling feverish. Was this coincidental?

I just don't know if I have this condition or not. I think I said earlier that I have a bad neck anyway. Is it my neck causing these pains in my shoulder/neck/jaw?

I guess what I am asking you good people is how do I definitely know if bloods all come out ok. Will my doctor order a temple biopsy to double check? Should I go to a good rheumatologist? Should I rely on my doctor and symptoms? I don't want to take these tablets long term unless I am completely sure. How can I be completely sure?

I hope everyone had a lovely Christmas

[PMRpro Ambassador in reply to Lgomez]

If pred relieves your symptoms - there is obviously some inflammation somewhere that is causing it. 15mg is a low dose - enough for many but not all people with PMR but rarely enough for GCA. It may be that 20mg is enough to disturb your sleep while 15mg wasn't - everyone is different.

See what your GP says - but if they disagree and tell you to stop the pred and the pain comes back - find another doctor, preferably a good rheumy (though they aren't always right either.)

[Lgomez]

Hi Everyone,

Well the Doctor ( a different doctor of course from the last time and the time before that) is slightly puzzled. He says the jaw pain is not typical - usually it hurts to chew and doesn't go into the jaw or hurt the jaw. I think that is how it started (chewing midget gems) and now I don't particularly want to eat or chew because of the pain which seems to have spread into the neck and jaw and shoulders. Also my face pain is bilateral rather than unilateral. Plus I had spots on the right hand side of the face where my temple hurt most. He asked if I had had hip pain and I did at some point but thought it was from the back op because my hips and groin do play up occasionally. He asked if my arms or shoulders hurt and I explained I hadn't been able to hang up my clothes in the wardrobe or wash my hair properly because it hurt my shoulders and neck so much. Anyway, the upshot is he will refer me to a rheumatologist asap as he says it is a difficult diagnosis but to carry on on 20mg prednisilone a day. He feels it could equally be some kind of neuralgia but doesn't want to take a chance because of my recent eye problem in the form of going blind in one eye briefly three times

My question to all of you out there please

a)anyone else get bilateral jaw pain?

b)anyone get bilateral hypersensitivity on face (especially forehead)?

c)anyone have pain go into neck/shoulders/chest/shoulder blades so that it felt almost as though they were in spasm and I couldn't relax my shoulders or scalenes in my neck?

d)Do people always have hip pain with PMR

Many thanks

[PMRpro Ambassador]

a and b - why shouldn't it be bilateral? I can't really comment - except I'm sure the jaw pain I had was all over.

c) yes, with PMR pain it did, but you can also have something called myofascial pain syndrome alongside PMR and it CERTAINLY can feel like that! Got that t-shirt!

d) No, some people have shoulder pain and no hip pain, some people have hip pain and no shoulder pain, some people have both and some people wouldn't say they had either.

Everyone is different and few patients fulfil the picture they will find in the textbooks. That's half the reason it takes them so long to find an answer - they have expectations that aren't always found.

[Lgomez]

Just a quick update. My doctor rang today and said he had been thinking about it and had decided that it could be GCA and has immediately doubled my dose of steroid to 40. He feels that he was thinking I might have PMR and that is usually treated at 15 - 20 mg but as there had been no change on that and as I still had all the pain in the head/jaw etc that it wasn't high enough to get any dramatic results. So took the extra 20 and hoping for some kind of change. I guess, if this problem resolves it sort of proves that I have GCA

[PMRpro Ambassador in reply to Lgomez]

Sort of - the lower dose probably isn't enough to sort it properly. Fingers crossed!

[Lgomez in reply to PMRpro]

Thank you PMRpro. Do you mean sort of because it could be inflammation of some other kind and I might still get the same result ie. resolving the issues because they are inflammatory rather than GCA or PRM or both?

[PMRpro Ambassador in reply to Lgomez]

It is possible - but lets wait and see if it sorts the symptoms out first. Give it a few days.