Confused and lost

[1Unknown12]

To say I am confused and just don't understand what is happening let alone what to do for the best now is an understatement.

Looking back It started a year and a half ago. Tenderness of the face with earache. This was put down to over cleaning of the ears. (I now know it was the onset symptoms of GCA thanks to the health unlocked ambassadors post earlier this week).

Last September 2019. I suffered severe pain in the hips which developed into general aches. Just symptoms of flu I thought. Trying to carry on as normal brought me to an abrupt halt in October when I passed out. I was put on a small dose is prednisolone (15mg) to no real effect; it was presumed that I had Polymyalgia Rheumatica. Yes it brought down my inflammation levels but symptoms persisted. Ten days later with intensifying head and jaw pain I was seen in A&E. After various scans over the following weeks I was confirmed with having giant cell arteritis. The symptoms eased but never went away even though I was put on 60mg of prednisolone for starters. Sadly the rheumatologist wasn't interested her attitude beggared belief. So after seeing her in January this year I refused to see her again, I won't bore you with the details.

As the symptoms persisted I discussed with my GP the situation and said that I intend to undertake a rapid taper to come off prednisolone so that the situation could be evaluated from scratch. Sadly I am one of those patients who don't respond to prednisolone very well which does not help.

I succeeded in getting down to 5mg before I could not function. The pain in my head and body resulted needing to rest within an hour of getting up. I have said in a previous post please don't judge. If you are not believed that you have pain the options are limited in my book.

A month ago I saw a new rheumatologist. Charming chap. Yes you have GCA with Polymyalgia symptoms he said but not the Polymyalgia condition. I had another PET scan and blood test and today I was told that they were all normal. Great news sincerely. But I am feeling terrible.

I have been asked to up the prednisolone to 10mg. Which I have already done. I explained that I was still experiencing pain which was getting worse. But I was told that the condition was under control and needed no further treatment. I just had symptoms. The inference being it's all in the mind. Perhaps it is I don't know. At 57 I still have a life to live.

So this is why I am lost and confused. I struggle accepting the condition and feeling as I do makes it probably makes it worse. If that makes sense.

How do I feel at present my body is screaming.

Head pain / burning above the eye. Sharp pain at the back of the eye.

Pain and tenderness side of the face. Earache. Jaw ache. Shoulders arm and hands ache / painful. Hips and legs have started to come out in sympathy. The pain isn't severe it's tiresomely there. No it's not covid. Worse still is it’s just how I have felt over the last year. Sometimes it's just an ache other times the pain rolls in. Have I had a pain free day not that I can remember before last September.

If you have any advice I would welcome it. I am afraid the deadly fatigue has caught up with me so if I don't respond and thank you for your responses or ad to comments forgive me. Writing and rereading the above has taken its toll on me and my eyes.

[PMRpro Ambassador]

" I was told that the condition was under control and needed no further treatment. I just had symptoms"

"Yes you have GCA with Polymyalgia symptoms he said but not the Polymyalgia condition."

Um - as I understand it, if you have symptoms the condition is NOT under control. Symptoms ALWAYS trump the blood tests.

And as for the second comment - that doesn't make much sense either.

From your profile:

"the only showing was GCA on the aorta bridge" they cannot diagnose GCA of the aorta from imaging - and I'm pretty sure they didn't do a biopsy of the aortic arch (which I imagine is what they meant). That is where the aorta changes from ascending out of the heart to descending to the lower body.

en.wikipedia.org/wiki/Aorti...

"Apparently I have Large Cell Vasculitis / GCA but only systematic PMR. "

That doesn't make much sense either - PMR can be a symptom of extracranial GCA, otherwise called LVV (large vessel vasculitis), you can't really separate them

academic.oup.com/rheumatolo...

Where are you? Is a private consultation an option? If so, how far would/could you travel?

[1Unknown12 in reply to PMRpro]

Hi.

Thank you for your reply. My profile is confused as much as I am. Being told various things even with the aorta bridge. I know no difference. I am not an expert I can only repeat what I am told. A private consultation is looking high on the cards. Southend may well be the option as it's two and a half hours away depending on the M25.

Thanks again.

[PMRpro Ambassador in reply to 1Unknown12]

Chertsey is possibly an even better option - Rod Hughes does listen exceedingly well and I would choose him above Southend.

[DorsetLady PMRGCAuk volunteer]

Hi,

“But I was told that the condition was under control and needed no further treatment. I just had symptoms.”

If you’ve got symptoms then the condition is patently not under control - where do some of these people get their ideas from!

Maybe give the 10mg a little longer to see if it helps at, if not then you either need more, or it’s not GCA/PMR(!) - is there another GP in the practice you can see, or get an appointment with another Rheumy - privately initially if necessary. Not easy in current climate I know, but somebody needs to take your situation sensibly.

[1Unknown12 in reply to DorsetLady]

You have just said what my wife said. Perhaps I need a private consultation. My GP is supportive. It's just my local hospitals rheumatology department messing me around. As you know, you can only say what they tell you, and sometimes it just doesn't make sense. Hence the post. Thank you for your reply.

[DorsetLady PMRGCAuk volunteer in reply to 1Unknown12]

I like the sound of your wife! 😊

[suzy1959]

I agree with the others- this is unacceptable! You are in a lot of pain and are distressed. You should not just be dismissed. I also agree that seeing a Good Rheumy privately could be a good way to go. We can recommend certain ones, depending on where you live- just ask. There is clearly something wrong and you have been in the hands of imbeciles who don’t even make sense! No wonder you are confused.

If you wanted to you could also contact PALS at the hospital where you saw the Rheumy and say that you are considering making a complaint about how you have been treated because you may have a condition that is life-changing ( I.e. your sight is at risk) and you could then sue them for not investigating properly.

It is quite distressing to hear how often patients are having such negative experiences of Rheumatologists.

Personally, I am on my 4th Rheumy as the first 3 were pretty rubbish!

I am all for patient power!

[1Unknown12 in reply to suzy1959]

Thank you. Lots to think about. I know what I have to do. It's finding the strength now to fight on.

Thanks again.

[PMRpro Ambassador in reply to 1Unknown12]

Keep notes - until you are stong enough and have the required evidence to write to the legal department at the hospital. Bypass PALS - the legal lot are the middle level, the CEO may get you further but keep them in reserve.

[SusyTe]

I am so sorry you are having such an awful time. I too am 57 and it is no age to feel the way you do. I can highly recommend Dr Rod Hughes (as mentioned by PMRpro) - he is my rheumy and is wonderful. He works privately in the BMI Runnymede and also for the NHS out of St Peter’s - next door to one another in Chertsey. I have seen him both as a private patient (really worth it if funds allow) and as an NHS patient (more difficult to get an appt). He is worth travelling to see and I am sure he would listen and help you. I do hope you can see him asap. X

[1Unknown12 in reply to SusyTe]

Hi. Just to say thank you for the extra information on Dr Hughes. I will be contacting him at the Runnymede BMI in the next week and see if I can employ him to undertake a medical review. At least then I should know where I am.

I am reluctant to upset the Royal Surrey to much, as they are my local and you never know when you might need them.

Thanks again. Have a good weekend

Andrew

[SusyTe in reply to 1Unknown12]

Hi Andrew. That is good to hear - I do hope Dr Hughes can help you. He is a good man and a great rheumatologist. I look forward to hearing some positive news - I really feel for you.

One thing - since having PMR I always take Hubby in with me at these appointments - sometimes all the information can be overwhelming, especially when you are feeling so ill. It helps to have someone else there to listen and remember exactly what was said and advised.

I have used the Royal Surrey as well as St Peter’s and the Runnymede. They don’t seem to mind. The main thing is to get you feeling better. Good luck!

With all best wishes, Susy

[nuigini in reply to 1Unknown12]

Best of luck in getting help soonest. I'm a PMR'er but always on the look out for GCA. Your pain and symptoms are very worrying given the potential danger of GCA affecting your vision.

[1Unknown12 in reply to nuigini]

Thank you for your post. It's hard to know what to think at present. At least the advice given has focused the course of action.

Take care of yourself.

[sassykitty]

When I first was diagnosed with PMR the rheumatologist started me on the Pred. I kept getting worse physically and mentally. He kept upping my dosage until I was at the point of suicide. Consulted a psychiatrist and found out I was having "steroid psychosis". He immediately stopped my pred, no tapering and never to take steroids again.

Personally, I would get a second rheumy opinion. My second and current rheumy has saved my life. My life with PMR is not perfect although I can deal with it,

[1Unknown12 in reply to sassykitty]

Crumbs, that sounds terrible. I do hope that you are on the winning side now. I am fully aware steroids can be very nasty but your experience takes it to a different level. I hope that the health unlocked community were there for you. I'LL send you a belated hug in support over the web.

For me If I can get some of the symptoms under control I will be fairly happy. It's the not knowing ,contradictions of advice accompanied by the conditions unpredictability which has hindered me in coming to terms with what ever going on.

Take care of yourself

Andrew

[Celebrant]

I can so relate to what you are going through. My symptoms are relatively the same with an extra dose through the hips and legs, Now the docs have added facset joints build up to the mix. The fatique is quite amazing and with the pot mixed as it is you rather believe that the doctors are wrong and you must have something else. One is convinced something has been missed and the doctors are convinced you are whining and are imagining your symptoms. Literally this PMR. Rheumatoid and osteo combination is a Pain in the A--. So failing all else I send you a big hug and suggest light marijuana edibles to sleep at night.

[1Unknown12 in reply to Celebrant]

Hi,

I just looked at your previous posts. Sorry, something made me curious. Silly disease to say the least, pain in the a--- as well as you say, I'll quote you on both counts. Did you ever get pain free? I cannot help but think the prednisolone has a lot to do with my problems, or at least some.

Take care

[Celebrant in reply to 1Unknown12]

I truly think that statins were the major cause of my problems.

[1Unknown12 in reply to Celebrant]

Thank you for taking the time to reply. Take care.