New Diagnosis: Hello all, this is my first post and... - PMRGCAuk

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New Diagnosis

PactPmb profile image

Hello all, this is my first post and I’m hoping for some comments on where people think I am with this condition and what I need to do as its all pretty scary and confusing atm. I’ve just been diagnosed with PMR in the last two months and it looks a lot like it’s been a big factor in numerous health issues I’ve been having for two years at least they just haven’t picked up on it through lockdown.

I had some sort of virus just before the first lockdown which turned to pneumonia. I think from symptoms it was likely COVID. I recovered slowly but in the following months started to have really high Blood pressure issues and was diagnosed with hypertension. Its now controlled with 3 meds and seems to be managed.

Around the same time I started having a huge amount of pain in both shoulders and neck. The doctor thought it was a frozen shoulder but it started getting me really down as I couldn’t sleep and it was so painful.

I wouldn’t be beaten and started an exercise routine where I cycled three or four miles or walked at 6am every morning before work. Although it didn’t stop the pain it seemed to get things moving and ease it a bit.

Shortly after that both hips started causing me pain. When my husband had to help me out of bed three mornings in a row I went to the doctors and really had to emphasise that this was having a huge impact on my life. I got the PMR diagnosis and was put on 15mg of Pred . The pain went down almost overnight and became manageable for the first time in months and I got most of the movement back as the stiffness was a lot better too.

I’m only 48 I have two children at home one is autistic and I work three jobs and whatever this thing was, was making life impossible. I got so depressed.

At the same time my optician picked up an issue in my eyes as I had gone complaining that sometimes things got really blurry. I work a lot on computers so I thought it was a natural issue but the tests they did meant they referred me to the eye hospital (Still waiting for that appointment lol)

There were lots of weird things that the doctor attributed to blood pressure that started to worry me. I had a really odd feeling on my forehead that was like a cross between numbness and tingling or tightness and the most awful headaches were getting more regular and hurt more. My ears were odd feeling like I was underwater or they needed to pop.

I got the PMR diagnosis and the doctor said if you get headaches you really need to get medical help so I said honestly I’d had headaches for over two years and he just brushed over it.

Through the night a few days ago the headache got really bad, the tingling on my forehead was awful and then when I woke my left eye was so blurred I could see light and colours but nothing else.

I ended up at the local hospital and I tried to explain about the PMR I really had to insist they looked up PMR and the possible GCA complications and they tried to say I’d suddenly got migraine. When I insisted she took it to a consultant who still didn’t say anything about GCA but said PMR could cause headaches and whacked me on 40mg of steroids and said they would contact my GP.

Can anyone shed any light on this the sight has come back in my eye the headaches and tightness are still really bad. Is it likely to be GCA, do I need to be pushing my symptoms again. Should I be exercising on a morning, Does the vision thing mean I’m going to lose my sight. Its really scary and when I read the internet stuff it just gets scarier was hoping some of the people who are dealing with this condition might help me work out the route I need to take. Thanks so much and sorry for the essay!!

43 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, and welcome,

Have a look through this link - a realistic account of your illness(es)..and hopefully not quite so scary as some things you have read -

healthunlocked.com/pmrgcauk...

But having had GCA myself, am going to say you need to be on a higher dose of steroids if you have sight issues...40mg is dose recommended if you have NO sight issues, 60mg if you do!

Your consultant has been remiss in not starting you higher...but I guess he's prevaricating on the diagnosis because of you age...but it's not good enough. GCA (especially with sight issues) should be treated as an emergency.

Your sight may well have return following last episode, but there is no guarantee it will be the same outcome should it happen again.

This is relevant info from link below -

Recommended starting dosages of glucocorticosteroids are:

Uncomplicated GCA (no jaw claudication or visual disturbance): 40–60 mg prednisolone daily.

Evolving visual loss or amaurosis fugax (complicated GCA): 500 mg to 1 g of i.v. methylprednisolone for 3 days before oral glucocorticosteroids.

Established visual loss: 60 mg prednisolone daily to protect the contralateral eye.

Full guidance -

academic.oup.com/rheumatolo...

You need to speak to GP, nhs111, or attend A&E again...and get it sorted.

PactPmb profile image
PactPmb in reply to DorsetLady

Thankyou so much for this I'm contacting my GP now and will feedback.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PactPmb

Please do…

Hello and welcome. Sadly you are not the first to have had lack lustre, sitting on the fence diagnosing and treatment. You are also not the first to have age cause the doctor to stop looking at what’s in front of them or recognising it but not wanting to be the one who presses the button to commit. In giving you 40mg Pred they are not that convinced its ‘just’ a migraine but really you should have been informed as to their rationale and plan, just out of respect if nothing else, because 40mg Pred is a good but significant medication with potential consequences. With a history of eye symptoms it should be higher than 40mg as per guidelines. Just as a comparison, when i went to the GP with head symptoms but no PMR or at that point eye problems, i was sent straight to A&E. They knew I was coming and picked me out of the queue and within half an hour of walking through the door I had 60mg Pred in my belly. I was treated as if I had heart attack as per guidelines that say GCA should be treated as a medical emergency. I saw the ophthalmologist some hours later on the same day.

On the plus side you are on Pred rather than nothing at all. We can’t diagnose you of course but really there is enough evidence here for someone to be taking responsibility for a speedy and thorough investigation instead of passing the buck. GP’s don’t deal with GCA, Rheumatologists do, though not all are knowledgeable. I agree with DL that you need to be telling someone that your symptoms while reduced by Pred are not resolved. I think you need to start asking awkward questions like who is going to take responsibility if my eyesight is damaged? Lastly, you need to be on sick leave.

Did they take any bloods by the way?

PactPmb profile image
PactPmb in reply to SnazzyD

they did take bloods and it showed inflammation levels were up but no further explanation and i dont understand yet what different levels are the ones to look out for. I'm trying to read more get sensible sources that are reliable and thats not always easy on the internet lol. I'm going to push my doctor and will keep the post updated many thanks for taking the time to help.

PMRpro profile image
PMRproAmbassador in reply to PactPmb

The stuff you will find on the FAQs is all reliable - we promise!

healthunlocked.com/pmrgcauk...

There are no specific tests, just general ones showing inflammation and even they aren't significant in about 20% of patients. The ESR (erythrocyte seimentation rate) and CRP (c-reactive protein) are the ones usually looked at and the trends are more important than the absolute values.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PactPmb

Have a look at first link for usual bloods for PMR and GCA, and maybe read through our FAQs -second link- rather than the internet per se ..written by patients for patients - -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

PactPmb profile image
PactPmb in reply to DorsetLady

Thats brilliant thank you

SnazzyD profile image
SnazzyD in reply to PactPmb

Oh. So no context, handy. If they were decently up, to develop your technical term “up” further, that may have been why the doc decided to hedge their bets and give you 40mg. GCA is a funny one because you don’t always get raised inflammatory markers either. Mine were still within the normal range but raised from my normal, but docs don’t always consider that. The markers they look at are usually ESR and CRP and you can read about them here if you have any capacity in all this. The trouble is, it is common to find yourself in this storm but at the same time having to get yourself up to speed and fast on the medical ins and outs just to make sure you’re being dealt with properly. It isn’t fair but it can be the way it is.

labtestsonline.org.uk/searc...

The other issue with inflammatory markers is that they are not specific to GCA so it can mean something else is inflamed for another reason, but it adds information. Diagnosis of GCA is often looking at symtom history, bloods but not always and response to Pred. Ideally there is also a positive result on ultrasound of the temporal artery but it is very specialist and not everywhere has a trained person. Alternatively, a biopsy which can also give enough false positives as to not be 100% reliable. But, a positive result is your golden ticket. Every day you are on high dose Pred also makes the result of these two procedures more likely to be negative, but withholding Pred is considered bad practice because of risk to eyesight.

You don’t say what dose you were down to beforehand.

Sorry this is so long but it might help know what questions to ask.

PactPmb profile image
PactPmb in reply to SnazzyD

I was on 15mg and that all makes a lot of sense. The body pain went so quickly on the 15mg I couldnt believe it cos i got little relief from anything it was always there and the stiffness made life awkward. I work as a youth worker in one job, in a food bank where i lift in another and training young people in another and some days I couldnt get out of bed let alone look behind me. So debilitating! I wondered if the other stuff had been masked by the awful pain and when it eased I noticed this more but I really feel its getting worse and the vision thing yesterday really frightened me.

SnazzyD profile image
SnazzyD in reply to PactPmb

So you were still on the initial 15mg that you were put on initially? Unfortunately, it is often not explained that the relief of pain doesn’t mean it’s sorted because all the Pred does it act as a safety net to stop the inflammation causing problems. Meanwhile the autoimmune activity whereby your body has decided to attack some of its blood vessels, keeps going until it decides to stop in a few years. Often people go back to their life as if nothing much has changed once the pain has resolved, with a sigh of relief that the suffering has ended. In some cases the extra buzz given by the steroids, makes it difficult to know you are really over doing it. You could be right in that the acute pain was masking other niggles that suggested GCA might coming too. However, it can be very subtle and easy to put down to other things.

You have a heck of a lot on your plate and it is a common story on this forum for people to say prior to diagnosis they had unrelenting stress and being hectic and all it needs is one more thing like an infection etc to make your body forget what is friend and what is foe. Even if this turns out not to be GCA, the signals you’re getting are saying that something has to give.

Hi PactPmb, what a rough time you've had! You don't any whether or not painkilllers have any effect on your headaches. If not, that is significant because GCA headaches do not usually respond to them. For what it's worth, I did not have sight issues with GCA and my PMR pred dose was increased to 40mg, but it still did not do the job, and I got more ill over the next few days. Then the dose was increased to 60mg and I started to feel better. So there is every chance you may need 60, and I look forward to hearing how you get on with the GP

PactPmb profile image
PactPmb in reply to Sharitone

Thanks for the help. Painkillers dont do anything for the headaches so I really am starting to think I've enough symptoms for them to take it seriously. I'll contact my GP and update you.

Sharitone profile image
Sharitone in reply to PactPmb

👍 I hope you've got a appointment by now!

What a rotten time you have had. At least your GP did not say you were too young for PMR which some of them do and gave you steroids. They really are a wonder drug. You do seem to have all the classic signs of PMR. Also it is good that you pushed them at the hospital and your sight seems to have got better, but as Dorset Lady says 40mg is a bit low if you have sight symptoms. Just take things slowly and don’t overdo things. Also any sight problems go straight to A&E.

PactPmb profile image
PactPmb in reply to piglette

Thank you for that . My headache seems to be the worst thing currently since the 40mg the blurry vision has improved. I've taken a bit of time off work til they get this right too! Fingers crossed and thanks again :)

piglette profile image
piglette in reply to PactPmb

It does sound like you should have a higher dose than 40mg in that case. Can you contact your GP and ask if it is OK to increase the dose?

PactPmb profile image
PactPmb in reply to piglette

Thats a good plan :)

MrsNails profile image
MrsNailsPMRGCAuk volunteer

Hi Pam - Welcome & pleased you have found us. The symptoms you have been experiencing are all pointing to PMR but the headaches & vision issues need further investigation ASAP

I’m a PMR’er so no personal experience of the headaches, vision issues.

I do hope your GP can get this sorted for you or head to A&E ASAP

Kind Regards & Welcome 💐

MrsN

PactPmb profile image
PactPmb in reply to MrsNails

Thanks for the reply its actually lovely to talk to someone else about this. My poor husband!

PMRpro profile image
PMRproAmbassador in reply to PactPmb

There is always someone around here to talk to because we have a few insomniacs and although most of us are in the UK, it is an international forum so as we go to bed in Europe, America is coming online and there are even a few in Oz.

If you feel things are worsening and, above all, if the visual problems return, head straight for A&E and emphasise the potential diagnosis and visual symptoms. Don't be fobbed off.

MrsNails profile image
MrsNailsPMRGCAuk volunteer

We’ve all been there & got the T-Shirt so you are in good company here! Because of your age & the ?Risk of GCA - l think you need an Urgent Referral to a Consultant - hopefully your GP can sort this for you.

Once you get to the ‘cant get out of bed’ stage - it’s so classic - l couldn’t wash my hair or clean my teeth - l had to put the electric tooth brush in my mouth & move my head from side to side & don’t ask about how l got my tights on 😵‍💫

I often wonder how l got through those days - quite honestly l think we should have stayed in bed & sent for a Doctor!…..

Me too MrsN - exactly as you say - in fact my husband did call 111, who sent an ambulance, but they couldn’t do anything as the on call GP wouldn’t prescribe steroids without a diagnosis…. Fair enough I guess. I did get the pred within a few days after that 😊

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

Just as well it wasn't GCA setting in though wasn't it?

Nextoneplease profile image
Nextoneplease in reply to PMRpro

It was! Of course I didn’t know that then….🤔

Meggsy profile image
Meggsy in reply to MrsNails

Same here mrs N - OH had to help me dress and undress, couldn’t reach to comb my hair. Couldn’t even get myself off the loo! 🤪

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Meggsy

You forget about that part to some extent, in some ways it’s unbelievable what we did try to do to try & carry on…..

Meggsy profile image
Meggsy in reply to MrsNails

Seems like a dream and hopefully will remain so.

Billiebobdog profile image
Billiebobdog in reply to Meggsy

I keep saying that I didn’t realise how much pain I was actually in until I wasn’t

PMRpro profile image
PMRproAmbassador in reply to Billiebobdog

Same here! I can remember that first day as if it were yesterday!

PactPmb profile image
PactPmb in reply to Billiebobdog

thats how I'm feeling now already. The pain in my shoulders and hips was unbelievable. Now its gone I think how was I managing to work til I wasnt and I cried to the doctor.

Thank you everyone so much. I'm going to really push this now I know I'm not just imagining it.

Wishing you all the best and looking forward to hearing how you get on xx

Morning PactPmb, I'm one of those insomniac types and welcome to the forum. Nothing to add to the comments and thoughts already made, and hope you manage to get the medication sorted quickly.

Just saw your post ... and so glad you are here, Welcome.

You could have been writing my story; shoulder pain, neck pain, flu diagnosis and multiple misdiagnoses. Even at age 81, I was 79 then, no doctor or ER hit upon the right diagnosis for over a period of 10 months. Then one evening I looked out the window and it was so blurry. Since I didn't feel really well, I thought I would do the dishes and go to bed. As I was doing them my vision sort of went in and out and then it looked like a window shade was pulled halfway down over my left eye. I went to bed and when I woke the sight in my left eye was gone.

Please push for care, you have gotten some valuable advice from all of these gals. You do not need to go to the extreme that I experienced and I'm so thankful you are on some prednisone. Some states in the US are more progressive where there are big medical centers. The UK has done so much in creating a 'fast track' and emergency care for people suspected of GCA. The level of awareness seems higher there though I'll bet you don't feel that way now. Now you are armed with good information.

I know you'll be more aggressive and confident as a patient now. This forum and these folks saved my sanity and continue to support me and everyone will you. I'm so glad that you found this forum...these folks are the best. I can remember nurses whispering in my ear, "What is GCA?" It wasn't until I found PMRGCAuk that I learned anything and it sounds like you are a step ahead. I'll be very anxious to hear how you make out. My best to you...💖

You’ve had lots of advice and are acting on it. The PMR is one thing and untreated is very debilitating BUT can also lead to GCA and you do have concerns that mean treat it as a medical emergency, which GCA is. I was lucky to have a very vigilant GP who fast tracked me to Rheumatology after sight loss in one eye and even more lucky the sight returned with 50mg Prednisolone. GCA headaches are like no other and don’t respond to any painkillers - the test is if your symptoms improve once on the correct dose of pred then that’s likely the solution. You need a high enough dose to treat your level of inflammation. Once I was on the correct dose my head cleared within 6 hours - others may take a little longer as we are all different in how we respond. Don’t be fobbed off - better to be safe than sorry. I was treated for migraines for months prior to correct diagnosis. Best wishes.

Hello there. I’m very glad for you your GP saw through the age bias to get you correctly diagnosed. I was diagnosed at 46 years old this last July so I understand your worry with all the responsibilities being in the middle of your working life. I can only go on my own experience, but hopefully you will be on a quicker path to something resembling normalcy with your prednisone treatment than most on the site due to your age. I wish you all the best and rest assured, if managed correctly you should be able to resume your life “almost” like before. Just listen to your body and be an active participant in your medical treatment You will find a wealth of incite on this forum.

Hi PactPmb, I was diagnosed by my GP in September after suffering PMR symptoms as described by yourself and many others since June. When the 15mg pred didn't get rid of my headache the GP wanted to put me on 40mg of pred but I said no because I was scared of taking a high dose without a definite diagnosis. She persuaded me to go to the urgent assessment centre at the local hospital. I was told I had to take 60mg pred before I went. I spent the whole day there and after tests they put me on 40mg pred and diagnosed GCA. Luckily I had no eye symptoms. The 40mg pred did get rid of my headache. Therefore I agree with the others that you probably need a higher dose. Once you're diagnosed, your GP should be able to do that, but it needs doing urgently so speak to them and ask for an urgent assessment at the hospital. I have at least learned that much!

Hi there PactPmb! So sorry you've had to join us but welcome! I too have both diseases and it wasn't until I got double-vision, and my husband took me to A&E last November, that finally someone began to listen to me. It's really difficult getting GPs to understand. I was on 60mg Pred drip in hospital to get things under control and now I'm on the long journey of tapering.

You've done the right thing in asking questions here, there are so many brilliant people who have so much info for you. My input, as always, is to buy Kate Gilbert's book on the subject and get on to the PMRGCA charity (pmrgca.org.uk) mailing list as they have quarterly meetings (on Zoom) where you can listen to different medics give their opinion on the subject - and they will also answer any questions. I've also joined an online group - pmrgca.org.uk/get-support/g... - to discuss our problems and feelings - it does get you down at times and you need a virtual cuddle from those who understand.

We're all here to help you but generally it just takes time and, for me, the fatigue is so damned annoying. I wish you well!

What a lovely bunch you are. My headache is much better today still have the numbness and I'm waiting for the doctor to ring me so fingers crossed!!!

Oh PactPmb…what an awful ordeal you’ve been through (and are still navigating). Some of us on this forum have been through similar journeys, so we “get it”.

I was 55 when PMR symptoms emerged, but it took almost 6 months to get a diagnosis. I too had a “miracle” response 8 hours after my first dose of pred. It took longer for me to go through all the emotions of being diagnosed with a chronic AI condition. I was angry having just married, retired and moved, that I was dealing with this at such a young age. I was depressed and afraid from months of chronic pain prior to diagnosis, and fearful of pred side effects.

Eventually I came to accept my fate and focus on what I could control (diet, exercise, rest, supports), instead of what I couldn’t (why I got it, disease activity level, when/if it may go into remission). My support people played an important role and I saw my therapist regularly over the first year or so (felt bad that my husband was listening to the majority of my concerns, and witnessing all my emotions). Finding this amazing forum was also key. Making adjustments was necessary and helpful.

I will say I’m able to manage my condition better now than in earlier days. I’m physically active 3 times per week (deep water exercises in pool really helps), I’ve lost 25 pounds, and got off my blood pressure medication.

You have many responsibilities on top of your health issues…childcare and work are two important ones for sure. Can you get your work hours reduced, at least until you sort out your symptoms and medication? Many on here have already provided some sound advice/recommendations. A good medical professional is also key.

Know that you are not alone. We are here for you, so please feel free to post as need be. Please keep us updated and do take care of yourself. There are times when we must advocate for our health (unfortunately).

PactPmb profile image
PactPmb in reply to PMRCanada

Thakyou for this. Its been so helpful, you have no idea. I've been literally scared to death for the last month and yet relieved they can managed the awful awful pain. What a bizarre disease this is! Onwards and upwards I can do this :)

The pain/stiffness is the worst for sure.

Yes you CAN do this!! 💪🏼

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