Morning all. Would really appreciate some advice, feeling rather unloved and unlistened too and to be honest not sure what to do.
Have had PMR like symptoms for 18-24 months, had a massive flair (I suspect rather than start of disease in Feb 2018) Eventually had a Rheumy app 2 weeks ago, given diagnosis of; Probable atypical PMR - because of lack of blood markers.
GP started me on 15mg of Pred back in Feb, excellent response, felt I had got my life back, If only
More issues in May following family holiday, just assumed I had been rather stupid on holiday with lots of walking but I also dropped to 12.5 (On GP orders) at this time.
I just felt so ill once home, also had scalp tenderness, ache in jaws, strange headache in side/temple areas (Both sides) my eyes were perhaps the worst, they just felt like very tired muscles, it was almost tiring to use them to see, also felt like I had a fever. I went to A&E after a few days as I was rather concerned about the above . A complete nightmare, was eventually told by a rather arrogant consultant (Not rheumy) that he could categorically state that I didn't have GCA, not only that but as I was under 55 with no raised bloods I also didn't have PMR.
My eyes were checked whilst there and I was told there was no damage.
After about 2 weeks the scalp tenderness stopped, this hasn't returned. The strange headaches have also stopped - these weren't really painful just strange, most headaches affect your whole head! as I say these were such a specific area - side of temple (Both sides)
My jaw ache and eye issues had also reduced, but I have been having a real battle with my Pred dose since. Because I still felt so ill/ache, all the issues with my shoulders/tops of arms, thighs/groin/hips and chronic fatigue to boot! I went back to 13.5mg - no improvement, 15mg - no improvement, 17.5 - nothing, 18.5 - nope, I then tried 20mg - success! I no longer ached 24/7, I also had more energy or at least less fatigue. I stayed on 20mg for 1 week then went back to 18.5 (My GP went mental, I also didn't have enough Pred to continue at a higher dose) the aching returned. The Rheumy told me to reduce to 15 immediately then to reduce by 1mg every 2 weeks until back to 10mg. I was rather troubled by this, I also suspected it was going to hurt. I went to 17.5 for a week, 16 last week, was going to try 15 tomorrow but boy am I struggling, I just ache more each day, pretty exhausted again
For the last 6-7 weeks I have been having an issues with my left ear, feels like it is full of water, if you wiggle it you get a weird sloshing noise. It's not painful but it doesn't go away, I did mention to GP but she wasn't interested basically. My jaws now ache again 24/7 It's in the muscle? you use to open and shut, my upper jaw and sometimes teeth also tender. I tend to eat soft food but would have a real issue with trying to chew anything for long. My eyes are also bad, again just feels like the muscles are tired, I just want to close them. the roof of my mouth is quite sore, tongue tastes metallic.
For those who have had GCA does any of this sound familiar? were all of your symptoms there all of the time? I'm confused, in pain, rather disillusioned. I'm perfectly happy to be told it's in my head or indeed maybe I have an ear infection thats affecting my jaw and eyes? but it would be nice to have somebody to listen.
Thanks for persevering!
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Mike1964
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Sorry to hear your pain & frustration Mike. I have GCA (May 2017 biopsy) & can confirm many similar symptoms. Often the diagnosis is not straight forward & docs are confused! What I can say is that the headache & ear pain was like no other I'd had before. It did not respond to any painkillers prescribed. 40mg pred. stopped it on the 1st day! Sure the experts will be along shortly. ATB.
Thank you Pepper. Guess that’s partly why I’m confused, although the jaw and eye/ear issues are now 24/7 it’s discomfort rather than terrible pain.
I am sorry that you’re having a hard time. I was diagnosed in March this year with PMR and struggled with the rheumy’s initial 10 mg and eventually found some happy relief at 20mg and have been at the dose for 6 weeks but due to start tapering in about a week. I bet rheumys and gps wouldn’t be so keen to get to lower doses so quickly if they were suffering!
I’m sure you will get some answers from our wonderful community. All the best.
Morning Cyclegirl. Lol indeed, how lovely if we could somehow transfer the pain to the GP/ Rheumy for 10 minuets, wonderful if our treatment would change?
I had similar jaw & teeth symptoms which were so bad I couldn't eat in the mornings. The jaw symptoms reduced after the middle of the day. My scalp was tender & I had a low grade pain behind my right eye. I had thought this was a low grade migraine, but it was unusual as had gone on consistently for several days. This was there the whole time. I also had had shoulder, upper arm & neck pain for some time, which I believe is associated with GCA. My ESR & CRP markers were significantly raised. I had thigh, lower back & lower leg pain you mention all PMR related, as well as hip bursitis.
My dose of pred started at 20, & was increased to 40 as I still had shoulder, neck & upper arm pain ( though at a bearable level). The pain behind my eye persisted & only went when I was put on aspirin.
It all sounds horribly familiar and you need to see a rheumy asap - like today. Obviously you DON'T want to go to A&E to risk seeing the ignorant and arrogant doctor you saw before and I have my doubts about your rheumy to be honest - but faced with a litany of typical GCA symptoms maybe he would step up to the plate this time.
However - irrespective of whether this is GCA or not, you obviously have something that needs urgent clarification - just in case it is GCA.
I'm sure you have told us where you live before - but I can't remember.
The sunshine coast of Eastbourne, or at least it should be, the first rain in 4 months today, I want the sun back!
Just really fed up and not sure where to go/do. I did contact the secretary of Dr Sam at Eastbourne hospital to ask if he would see me as a private patient as I wanted somebody to actually sit down with me to discuss everything. I got a call back early this week to say he has agreed to see me as an NHS patient and will discuss the results of my recent appointment with his colleague. I thought that was very decent of him, the only drawback being how long will it take. I just couldn't believe the original Rheumy, in his letter he makes mention of the scalp tenderness and jaw and eye issues, he then say's there's no point in doing a temporal artery biopsy as I've been on pred longer than 6 weeks, he then goes straight on to tell me to reduce to 15mg immediately then a further 1mg fortnightly! He gave me quite a hard time about going to A&E in the first place when these symptoms began, I actually feel like there's a label on my file saying "Time-waster"
I would call Dr Sam's secretary and explain the increase in symptoms and ask for advice. Good doctors are usually very helpful about that sort of thing. It is worth a try. And being it is Friday - do it quickly.
Dearest Pro, thank you once more for your invaluable advice. I did indeed manage to finally get hold of Dr Sam's Secretary, he wasn't working today but she will schedule me an appointment for hopefully next week. She also said she would ask Dr Khan to call me back, he did and after hearing my sorry tale said "I'm concerned you may have symptoms of GCA, go back to 20mg and phone again next week if you have any further issues" Again in my cynical head I'm not entirely convinced he meant every word but hey, progress is progress! Hoping you have a lovely relaxing weekend. Kindest regards, Mike.
Phew! Result! And if the symptoms get worse - go to the hospital and make sure they understand Dr Khan and Dr Sam are aware. 20mg is a fairly low dose and not enough if you start to have visual problems.
Whether he meant it or not - he accepts that there may well be something more going on. And THAT is significant.
Like you I have had a mixture of symptoms, my letter from Rheumatologist dated 9th July says "1, Possible Polymyalga 2. No evidence of GCA " THIS WAS BASED ON THERE BEING NO BLOOD MARKERS and my refusing to have a biopsy on temple. I had the jaw thing but luckily not the head aches.
Before all this I had the ear problem with sinus and tongue bad taste dry throat. Then developed pulsating tinnitus- which I thought was coming from outside. Like a water pump noise. After several months and visits to doctors and dentist I was sent to the dental hospital for blood tests - possibly could be Sjogren's Syndrome, CAME BACK WITH NO BLOOD MARKERS so had a letter saying I had not got that. I finally got sloshing noise ear help from a YouTube videa. Just holding nose and gently opening up eustation occasionally.
You have to laugh don't you, or indeed I would if my jaw/arms/shoulders/neck/lower back/thighs/hips/groin/eyes didn't hurt so much! Hope your in a better place now Beryl, kind regards, Mike.
I can sympathize with you, it's no wonder you are feeling so unloved and un-listened to. I felt exactly the same as you before my diagnosis of GCA.
I have GCA, my first symptoms were jaw pain and a tender scalp together with head pains but not headache. I had a swollen neck, ear pain and flashing lights in my eyes.
Saw a doctor, was given a letter to take to the Eye Hospital (A & E). The nasty arrogant eye doctor said I was grinding my teeth and there was nothing wrong with me. He sent me away saying that I was wasting their time. I cried all the way home!!
Jaw pain and black tongue got worse, I couldn't speak much or eat solid foods. The head pains were unbearable and I had lumps on my temples.
After numerous visits to A & E, even the Dental hospital. No one could find out what was wrong with me. GCA was suggested on numerous occasions but as the eye hospital ruled it out they were left scratching their heads in bewilderment.
This went on for nearly a month and by that time I just wanted someone to put be out of it.
Eventually while I was on my last legs my doctor called and took bloods. It was straight to A & E and thankfully the consultants and doctors ignored the doctor's diagnosis at the eye hospital. I was put on 60mgs of pred and improved within hours.
I asked a consultant while in the hospital what would have happened if I had not been give the pred. He shrugged his shoulders, gave a little chuckle and told me that I would not be here to tell the tale!!
I was led to believe that you had to have eye problems to have GCA, someone got something very wrong there.
Always a problem trying to explain pain & change in our body which we know is there! Especially when doc ain't listening & relying on taught markers! Plus looking for something else! I was fortunate with my GP & Eye Consultants to get a quick biopsy to confirm GCA. It helps to get the diagnosis at least! Docs. are very scared of pred. I can certainly see that.
How true that is Pepperdoggie. When I thanked my doctor for saving my life, cause if he hadn't taken the bloods when he did I would dead by now. My doctor told me that he was gutted that he missed the GCA and went on to say the medicine is not an exact science.
I thought that was practise! Being a verb! Or is practice the past tense of practise! How I have survived our language spelling god only knows! An I was born here!
I looked up the word before using it. On Google, not in my Shorter Oxford. Only practice appeared in the definition box, used for both verb and noun. But the drop down list from the search line provided practise as UK, and it didn't get underlined when I wrote it here.
Hello Mike, I have not posted anything on this forum before but the description of your symptoms and your experience of trying to find someone to help you fitted my own experience very closely. I have GCA (with PMR, although the symptoms for this have cleared with high-dose Pred.) I sought help from dentists, physios, doctors etc for about 9 months, being sent away each time, until I read on the Arthritis Research UK website that if you have visual disturbance and/or jaw problems you must seek Urgent Medical Attention. This sent me rushing to A&E at, luckily, the wonderful Royal Free Hospital, and I am now receiving treatment. The problem is that the longer you have it, untreated or inadequately treated, the harder it can be to shift. I am in this position myself. I am very grateful, however, that my sight has been saved, especially as I already suffer from glaucoma. I have now had GCA for about a year. However, I would urge you to go to A&E, if possible with a companion who will be an advocate for you, and insist on a proper assessment. GCA is a very serious condition and cannot be trifled with. I don't know whether you could get to Southend? There is always Dr Dasgupta who is ' the' GCA expert and everyone speaks exceptionally highly of him. A private appointment might be a very good investment. The very best of luck to you, Mike. I shall be thinking of you.
Hi Clorne. Thank you very much for your lovely post. It's all a bit of a nightmare to be sure! I managed to speak to the Rheumy I saw 2 weeks ago late Friday afternoon, after listening to my symptoms (Which to be fair were pretty much the same as I told him at the appointment!) he said he was concerned that I was showing signs of GCA and to increase the pred back to 20mg. I am also (Hopefully!) having an urgent appointment with the head of Rheumatology this coming week. I hate to think of the state I would be in without the support of this site, my GP never mentioned GCA to me, it was only through reading posts on here that I started to think, hang on, my eyes, jaw, head, tongue etc ain't none to cleaver. Really pleased you are now getting decent treatment/care. If I get any further issues I will go straight to A&E. Kind regards, Mike
I have GCA and have had it for almost 6 years. I had a relapse 20 months ago. 20 mg of prednisolone seems to be the standard for a relapse. What I had to confirm GCA was a temporal artery biopsy. These days there are scans which are non invasive to confirm GCA. Could you ask for a scan?
Hi Prunus. Thank you for your reply. Things have moved on a bit, this is now quite an old post. The short side is; I ended up being put on 60mg for 2 weeks but things didn't improve, the rheumy then said I obviously didn't have GCA so I went back to 20mg, am now on 14.5mg. I did rather foolishly ask what he thought I had, he said he hadn't a clue!
Oh the joys I hope things are working out for you OK?
Thanks for the reply. At least I know what I have got but it took them originally 9days in hospital to diagnose almost 6 years ago. It is not satisfactory for you. Are there no other tests they could do? What is your CRP? That is good for telling you if you have an infection.
Unfortunately I'm in the 20% club with normal bloods. That is a problem as 2 Dr's have told me its not possible to have PMR without raised markers, Indeed the rheumy I saw VERY reluctantly said I may have atypical PMR due to the bloods, all this despite classic symptoms and brilliant response to pred. It's hard enough fighting this awful illness without fighting the medical community as well
I know what you mean. When I had my relapse I ran out of predisolone and had to make a scene at the Drs to get more. That was what caused me to join PMRGCAuk. Chris Young was brilliant at helping me. I went to the AGM last Saturday and it was a most interesting day. Have you ever been?
No. Mine (PMR) kicked off Feb 2018 although I suspect that was a massive flair and I'd had it for a couple of years undiagnosed, lots of trips to GP with aches in neck and shoulders but nothing was ever found. I'm really struggling with fatigue, It's an effort to do anything much. I was signed off work for 4 months, went back 2 weeks ago, not nice. The thought of a trip to London was just too much.
Personally, I like a dr. who can say he or she made a mistake. No one is perfect but so many of them are practicing very poor medicine. In the US the business of insurance and reimbursement get in the way. At least this one is trying to do a good job!
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