Negative : Today I had a phone consultation with... - PMRGCAuk

PMRGCAuk

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Negative

Bauldy
Bauldy

Today I had a phone consultation with specialist who told me my biopsy was a high negative and they would be reducing my steroids at pace 60mg 40mg 20mg and stop the chances of having gca outwiegh the affects of steroids which I’m happy about, the down side is they have been referred to a neurologist as they have picked up sign off vascular embolism/aneurysm , so I’m none the wiser happy not to have gca and be of steroids or might or might not have a aneurysm?

I know they picked a swelling in my arteries but believed this was to do with gca.

Should be glad they are going to get to the bottom of it all.

34 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

Bit confused -

I know they picked a swelling in my arteries but believed this was to do with gca.

So how come they are reducing steroids if they mention GCA?

piglette
piglette in reply to DorsetLady

I am beginning to despair of the medical profession. I had a phone appointment with a heart consultant today and he had not even looked at my test results. I asked about the heart monitor I had worn for 48 hours and he had not seen it. I suppose he did then look it up and phoned me back. The NHS seems to be disappearing into the murky depths.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to piglette

On a slightly different subject.... the local shopkeeper in village where my son lives has been having issues with one knee for a long, has a couple of minor procedures on it with little effect, and consequent the strain on other knee has exacerbated OA and become so bad that now requires replacement.

He saw surgeon last week who told him he have both replaced at same time....when he expressed concern (who wouldn’t) he was told in no uncertain terms both would be done together or he’d go to bottom of list!

It might make sense to get the waiting lists down, but I’m blessed (polite word!) I’d want both knees done at same time...one at a time is bad enough.

PMRpro
PMRproAmbassador in reply to DorsetLady

I do know of people who got both done at the same time - but in places where you get rehab as an inpatient ...I think I might investigate the validity of a threat like that.

piglette
piglette in reply to DorsetLady

I do know a friend had both hips done at the same time and that is bad enough. It does seem that the NHS are trying everything to clear the backlog in every way possible, but to intimidate people like that is unforgivable. What happened to the Hypocratic Oath?

PMRpro
PMRproAmbassador in reply to piglette

Became a hypocritic one perhaps?

piglette
piglette in reply to PMRpro

🥳🥳🥳

Bauldy
Bauldy in reply to DorsetLady

Had the same both together, don’t recall it been both or don’t more best if I do .

That’s not on. Just because they do a lot of knee replacements it doesn’t mean it’s as simple as having your tonsils out! I gather there’s a long period of adjustment afterwards which can be painful. The Consultant sounds old style. ☹️

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Thelmarina

It is a painful initially - but having been there I would be more worried about the stability aspect of 2 recently operated knees. Maybe the consultant is being pressurised from above as well to get through the procedures.

I’m sure he is. But there can be complications with one knee - depending on age and vulnerabilities- let alone two. The tone was wrong irrespective of pressure - it’s up to your brother whether or not he prefers to have one done and takes his chances on two down the line. Perhaps the consultant was having a rotten day! 💕

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Thelmarina

No relation, my son’s neighbour.

Sorry! Phone went!

I am one of those people PMR pro refers to who had both knees replaced at the same time . I was a healthy 65 at the time ( now 83 ) and spent 5 weeks in rehab where there was a warm water exercise pool. It was also MY choice so I approached it very positively and I think this is key. It was very tough, certainly, but it was over. It would have been very different had I been bullied into it as the person Dorset lady refers to was. I cannot imagine the surgeon referred to has the authority to make that threat.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to readingbooks

Doubt he would be offered that level of rehab in the UK under the NHS in normal circumstances, let alone during these Covid times. I’m sure if he were, he would accept.

it was followed up by 3 months of rehab at the same centre and door to door transport for the price of a bus ticket all under our health service. No doubt this has been affected by Covid, but my main point is that you need a high level of support if both knees are done at the same time. I wish him well.

PMRpro
PMRproAmbassador in reply to readingbooks

Which is how it should be - but in your dreams in the UK!!! At least here you don't get sent home after a few days - and normally the rehab is very good. Covid rather put the mockers on it!

bussell
bussell in reply to piglette

Well at least you spoke to him. I had telephone outpatient appt with a geriatric/osteoporosis consultant today at 3.20pm. Arranged for someone to pick up grandchild from school etc so I could sit by the phone. Still waiting.....

piglette
piglette in reply to bussell

I have been waiting since last September, with a cancellation in the middle.

bussell
bussell in reply to piglette

What can one say.... i am so sorry

piglette
piglette in reply to bussell

I am sorry about your lack of success too. My original appointment was delayed for 2 months. There are over 4 million people waiting!!

Bauldy
Bauldy in reply to DorsetLady

I went to my my doctors on the 1st April, I was having double vision / dizziness my blood pressure was low and my heart rate was low, he sent me to hospital and they run test ,scans , ct scans , X-rays, nuecular scans ,blood tests,eye tests. The doctor came said they suspected gca put me on steroids they had picked up a swelling on my temporal artery an embolism behind the eye , some furing of the arteries and a viral infection in my bloods.

Had a phone call yesterday from numerology department telling me I was going for a in-depth ct scan , had a phone call today from consultant tell me to reduce steroids as I had a high negative for gca and I would be a rapid reducing of my steroids, but that I was now under the neurological because they suspect a aneurysmi/ swelling off the artery.

This is where I am happy to be of the steroids and none the wiser .

PMRpro
PMRproAmbassador

Where have they spotted a possible aneurysm?

Bauldy
Bauldy in reply to PMRpro

I thought it was behind my right eye with swell in my left Temple artery,but to be honest I’m lost. I’m glad to be off the steroids, I feel ok blood pressure ok hr ok , tired moody and mentally drained .

Can I just say I spent 2 weeks in hospital and the care was unbelievable I had every test going and I was acceptant of their diagnosis,they have continued to investigate which is good, it’s my ability to understand what’s going on that’s the problem , they know what there doing, it’s just me doesn’t understand .

SheffieldJane
SheffieldJane in reply to Bauldy

I am glad that your care was great and thorough. Please let us know what happens. In my ignorance I thought that description of what they found was GCA/LVV and would need a high steroid dose to safeguard the eyesight. Wishing you well with the aneurism and the neurologist. You still need to taper down slowly and carefully (Pred). Because of your Adrenal system. It will have become reliant on Pred.

Bauldy
Bauldy in reply to SheffieldJane

So did I think that! I was tested and scanned put on a course steroids reducing over a period of time whilst been monitored and had a biopsy.I wasn’t happy on steroids but acceptant and but will be glad to come off them.I hope what neurology have found is just minor I wait and see.

Thanks

I know it's a bit more difficult with covid restrictions, but can you get a family member to go to apointments with you, or if you have phone consultation put it on speaker phone so they can hear too? I suggest this because it's sometimes simply impossible to remember everything one is told, let alone have time to digest and understand it, and having someone else to hear the conversation really helps because they can concentrate on what the doctor is saying, and help you look it up afterwards, if necessary, so you can understand better what they meant. This morning, for example, my husband had a phone consult. I didn't listen in , but from previous experience I knew he wouldn't remember everything, or would rapidly begin to mix things up, so as soon as he hung up I asked what had been said. So now I know too and can keep him on course!

Bauldy
Bauldy in reply to HeronNS

Your husband sounds just like me my wife has always accompanied me,I have all the discharge notes, my gp was informed though my medical records I was treated for gca, and through reading on this forum I was getting a understanding of gca. I should of asked more questions yesterday but was caught of guard.

Hi, I’m sorry to hear about your embolism/aneurism, however, I was tested via ultra scan for GCA several times I was told it was negative, they still kept me on pred high dose, after being on tapering I got double vision and had another scan, this time it showed I did indeed have GCA, this happened 2 or 3 times since.Just because you got a negative result doesn’t mean you haven’t got GCA.

Just a thought.

X

That’s what I was originally told, I was been treated for gca and the biopsy might be negative but they may still carry on with steroids. There must be a reason they want me to stop maybe the side affects outweigh the benefits for me.I will ask at my next appointment this time I will have pen and paper ready to log answers.

At what stage did you have the biopsy? If you were on a dose of steroids for more than a few days it seems likely to be negative. They wanted to do a biopsy on me several months after starting pred - I refused. Please be very careful eyesight is so precious.

Bauldy
Bauldy in reply to Pippah45

Only 5 days on 60mg steroids and then biopsy.

I had a repeat Transcranial Doppler and a USCarotid Duplex about a month ago and it showed thickened temporal arteries consistent with chronic GCA according to my neurologist. I am on Actemra ( don’t know the long named or it). I was diagnosed about a year and a half and was on prednisone for 14 months. Hope you get an answer soon.

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