Phantom symptoms

[1Unknown12]

Hi.

If I don't ask I won't know.

If you have suffered from PMR and or GCA have you ever had phantom pains and symptoms? It's not as daft as it sounds. I'm just trying to understand what might have gone wrong for me and you might just have an answer. I am aware that phantom symptoms can happen with other medical issues so I'm just wondering if I have fallen into this situation.

I am / was a PMR and GCA sufferer. The trouble has been that although prednisolone did the trick in reducing the inflammation levels the symptoms persisted / never went away. It was considered that this was due to the steroids. However last November, 2021. I came off the prednisolone. The symptoms of PMR remained. And still remain. Aching shoulders, elbows, hands and hips. Just don't ask about the fatigue. As for the GCA facial tenderness and pain varry from day to day. In the last six weeks it has also resulted in eye. Jaw and ear pain.

A blood test in January was fine. I'm booked in for another blood test next week before being put on nerve blockers.

So you can see, symptoms are all there for uncontrolled PMR and GCA. But no evidence to prove it is there. Not that I want the condition again or phantom symptoms.

[jinasc]

If I had these symptoms:

"As for the GCA facial tenderness and pain varry from day to day. In the last six weeks it has also resulted in eye. Jaw and ear pain."

I would be sitting in A&E right now and if they took no notice, I would be asking to see the Consultant in Charge of A&E.

Suspected GCA is a medical emergency............your sight is in danger and if it goes, its gone.

[1Unknown12 in reply to jinasc]

Thank you for your reply. I know your right. I've read many responses in the past re emergencies. However it appears that I don't fall into this category. I'm one of those patients who don't follow the normal line of things. Thank you again though.

[Missus835 in reply to jinasc]

I too have been going through this over the last week. Trying to taper from 15 mg. Excruciating jaw pain began Thursday, May 12. I thought my head was going to explode from the pressure on my ears. Pain went right up to my temple area. Went into ER (Canada) the next day. Bloods were taken. CRP level only 3 and so Neurologist concluded it was not GCA. Upped the Prednisone to 15 mg. as I had just decreased it to 13.75. Jaw pain was gone. A lot of other pains have returned randomly and one goes away, the next one returns. Most definitely a lot better than prior to January 2022, when I was not yet diagnosed for 5 months and could do pretty much nothing. My eyes have been affected also. Using eye drops 4X per day. Very dry. Very irritated. My glasses prescription seems almost too strong. Going for exam in June. Wish it could be sooner, but in Nova Scotia, it's only covered every 2 years. All the best with finding out what's going on with your phantom pains.

[1Unknown12 in reply to Missus835]

Thank you for your post. I do hope that you manage your condition. It's no joke. The dry eyes I found does pass when you get to a lower dose. An optician I saw told me that it was quite common with people on steroids so I hope that you find the same when you gradually get to a lower dose. Look after yourself.

[PMRpro Ambassador]

What evidence are they looking for? I'm assuming they had the evidence originally for a reasonably certain diagnosis?

Have they considered anything else? The symptoms aren't entirely specific - PMR is the name given to a set of symptoms, it isn't the disease itself, there's a range of possible underlying things. Same applies to GCA as well - a few things, some pretty rare, that can masquerade under a similar guise.

[1Unknown12 in reply to PMRpro]

Hi.It was a definite diagnosis by the hospital for GCA and PMR. The next blood test is going to check inflammation levels, testosterone and several other things before going on the nerve blockers.

[PMRpro Ambassador in reply to 1Unknown12]

And of course - PMR and GCA do change and as DL says, some don't have raised markers, especially after being on pred.

[DorsetLady PMRGCAuk volunteer]

Hi

“So you can see, symptoms are all there for uncontrolled PMR and GCA. But no evidence to prove it is there” …

Actually (in my view) the evidence is there -the symptoms.

Between 7-20% of patients don’t have raised markers -even if you did the first time around. So if you have symptoms that is driver before and after diagnosis.

Just wondering why your doctors didn’t consider putting you back on a low dose of steroids in November when it was obvious your illness was still active.…or was that your choice?

[1Unknown12 in reply to DorsetLady]

Hi.The problem with the steroids was they believed they were the problem of the continuing symptoms. Then it was allowing for the adrenal function to settle down.

As a person who hates taking tablets it suited me to be off the prednisolone. At the sad same time I realize that sometimes our bodies need a helping hand to function properly.

[DorsetLady PMRGCAuk volunteer in reply to 1Unknown12]

Well if you have untreated GCA-you certainly do need a helping hand. ..Mine was misdiagnosed so therefore untreated for 18 months and I ended up losing sight in right eye…

[Kendrew]

Hi1Unkown12,

I've read all the responses and agree completely with all the advice offered.

It's important to know that normal inflammatory markers can frequently not be a reliable diagnostic tool for PMR/GCA and a patient's symptoms are often far more relevant and indicative of both conditions in many cases.

I have had PMR for 3yrs now and I've never had raised inflammatory markers in the many blood tests I've had done. My symptoms (and positive response to steroids) were the the main ways my PMR was diagnosed.

I've learnt that not all medical professionals offer correct or accurate advice and many are far from knowledgeable where PMR/GCA are concerned.

Don't be afraid to fight your corner but educate yourself as much as possible first, about both the condition and the steroids.....this will arm you with the knowledge you need to argue your case if required.

[1Unknown12 in reply to Kendrew]

Thank you for your reply. I'll see what the blood test results are and go from there.

[SnazzyD]

Oh my, reading your bio was making me wince, poor you. Sounds like you have never been adequately treated from the off, either not high enough or not for long enough. My markers were always in the normal range from start to finish, yet I have been treated on symptoms alone and my good response to steroids. However, I was on the right dose 60mg and then 40mg for 6 weeks before tapering at my speed. The others have said the rest.

[1Unknown12 in reply to SnazzyD]

Thank you for taking the time to reply. I have noted everyone's response.

[DorsetLady PMRGCAuk volunteer]

You might like to read through this -

healthunlocked.com/pmrgcauk...

[1Unknown12 in reply to DorsetLady]

Thank you for the link. I have read it and will reread it again later. I don’t know what to say as many things are going through my mind. I have read numerous papers and articles in the last few months all pointing the same way, treatment. The sad thing is that in all the papers and articles I have read there is no mention of the reoccurrence / how to deal with patients who haven’t responded to the initial high dose of 60 mg of steroids(I know you were on 80mg). Or continue to suffer from the symptoms. Flares are sometimes mentioned, but not proper management. I consider myself lucky that although the symptoms I have are numerous, annoying and restricting they could be a lot worse compared to so many on the platform. I have many blessings to count there.

[DorsetLady PMRGCAuk volunteer in reply to 1Unknown12]

Many articles of full of how to diagnose, but short on good treatment thereafter….the only easy way, assuming it is PMR or GCA is to be on the correct dose for YOU (nobody else, you) at each part of your illness.

If you had heart issues or cancer there would be much better protocols - but that’s no excuse..

[PMR2011]

I read your bio and see you have had a very rough time of it! So sorry you are going through this. With your story I fear you may never have had the correct treatment. Lots of fast tapering despite symptoms. I wonder if the disease was ever under control. Do you have possibility of seeing one of the eminent GCA experts privately? I know NHS is in a bit of a state right now, but I fear the consequences for you if this is untreated GCA.

[1Unknown12 in reply to PMR2011]

Thank you for taking the time to read and respond. Firstly I have seen one of the GCA experts. The unfortunate thing was lovely chap that he is. Once he knew that I had originally seen one of his students the consultation finished before it started. Just told to continue tapering and ignore the symptoms and if I wanted to chat in the future he was willing to see me privately again. Sadly it didn't achieve anything.

[DorsetLady PMRGCAuk volunteer in reply to 1Unknown12]

“continue tapering and ignore the symptoms”….no, no and no again.

You cannot ignore the symptoms, and no doctor should be saying that. If the symptoms aren’t under control, then the patients is either on too low a dose, trying to do too much on that dose, or it isn’t PMR or GCA. Whatever, needs a different approach…preferably from another doctor.,

[Grammy80]

Please....listen to jinasc~!!! You must follow up and not endanger your sight. I was misdiagnosed for nine months and did lose sight in one eye....INSIST!!!💕