Another update

[Janann25]

I wrote at the beginning of the week about my visit to A&E, my first visit to a rheumatologist and my double vision. Well, the temporary patch fitted to my lens is really helping with short to medium vision but I definitely won't be driving for a while - a quick telephone call to the optician this morning confirmed that it may be several weeks before the brain "re-trains" the muscles! In the meantime, I woke at 3am yesterday to really bad palpitations which continued on and off for a couple of hours. So, a quick phone call to my surgery to ask for a telephone appointment with a doctor (no chance of actually seeing him) resulted in a conversation with him where he decided it wasn't necessary to see me but prescribed a beta-blocker to help regulate the heart. A friend collected the tablets but, unfortunately, I found out from the enclosed leaflet that beta-blockers are not compatible with verapamil, which I already take!! So, I decided to err on the side of caution and didn't take it. As it happened, I didn't get a reoccurrence of my 3am problems today so I'm hoping it was the big increase in Pred which caused it. One thing which really hits me is the overwhelming exhaustion - I have to sit down and rest after doing something as simple as make the bed!

Little did I think three months ago when the GP casually told me that I had something called PMR that it would be such a massive life changing event. 😟

Jan

[DorsetLady PMRGCAuk volunteer]

Hi Jan,

Think you're like lots, once you get a diagnosis you're apt to think the worst is over. And it is in many ways, but some doctors aren't very good in telling you the whole story! Maybe some don't know, but I think some others would rather not!

As you know, or maybe not, the Pred doesn't cure the PMR , all it does is control the inflammation that the PMR causes within your blood vessel walls.

The PMR is still in your body, and it stays for a long time - years, until it burns itself, goes into remission or whatever (not sure anybody really knows) - and it makes you fatigued. Plus a lot of people find that the Pred also gives you fatiguey and muscle weakness, so you're being attacked on both sides! That's why us 'oldies' are always telling people to pace themselves. It's easier said than done, we all know that, but it's the only way to get through - particularly early on.

Doctor really should have checked your other tablets and beta blocker - good job someone's awake! Hopefully you can do without them!

Take care.

[Janann25 in reply to DorsetLady]

Hi

I hate to say this but I'm already realising that many doctors don't tell us much because they don't actually know a lot! They probably don't realise that, as a result of all the information which you and others have given me on this forum, I'm actually helping to train them! And yes, I'm determined not to take a beta-blocker. I actually said to him at the time that they don't suit me but he didn't take any notice..........

Jan

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

No, they have a habit of doing that as well.....🤦🏻‍♀️

[Debue in reply to Janann25]

New to the group- What are beta-blockers?

[DorsetLady PMRGCAuk volunteer in reply to Debue]

Medication to slow your heartbeat down. Usually given for angina, palpitations etc, but also for anxiety attacks.

[Debue in reply to DorsetLady]

Tnx...good morning

[Debue in reply to DorsetLady]

Oh my what a change if lifestyle. I just had my biopsy done yesterday . I woke up this morning, at 3:43am, to pressure on my left side and blood spit out of my mouth. Is that normal? Additionally, burning sinuses. Any ideas preds peeps? just want to say, I love this group-glad i found you guys.

[Hidden]

I have had several nights disturbed by palpitations since being on pred. My fitbit tells me my heartbeat is at peak rate of above 130 even during sleep. Obviously I am training in my sleep!

[Janann25 in reply to Hidden]

Yes, my Fitbit does the same- says I'm in cardio mode even when I'm asleep - makes me wonder what my dreams are about!!!

[Debue in reply to Janann25]

Fitbits?

[Hidden in reply to Debue]

It's a device you wear that counts steps heart rate sleep etc and you use your smartphone to access all the data. Not medical but just for fun

[Debue in reply to Hidden]

Oh interesting...need to get that . What are my steps to squire fitbits

[Hidden in reply to Debue]

There are lots of different brands out there. I think shops like pc world currys argos etc have selection so you can look at them and decide what suits and how much you want to spend. You can see online too

[Debue in reply to Hidden]

Thank you...will look into these suggestions

[Hidden in reply to Debue]

Presumed uk based but if not available online

[piglette]

Dear Janann, palpitations are a common side effect of pred according to my rheumatologist. He seemed quite upset that I wasn't getting them, although I have enough other side effects.

[PMRpro Ambassador]

Er - did your doctor KNOW you are on verapamil? It is used for tachycardia...

[Janann25 in reply to PMRpro]

Oh yes, he sometimes signs my repeat prescriptions.!!

[Janann25 in reply to PMRpro]

And yes, I know in an ideal world I should change my doctor but we have a system where appointments can only be made on the same day so it's just the luck of the draw!

[piglette in reply to Janann25]

There was something on the UK news today saying that nowadays people can see a different doctor every time they go to the GP. Aso they said some people could not get an appoitment at all which I did not quite understand.

[PMRpro Ambassador in reply to piglette]

I think they meant on the day - and had to wait up to 3 weeks or more to see a named doctor. Wonderful for continuity of care! You think it might sink in that seeing the same doctor speeds things up as you have to explain less if you have a chronic problem!

Me - I have the choice of one. But I am guaranteed to see her the same day if I turn up before the end of surgery. Just like the old days! And can always call her - and if it is urgent, she'll either meet me at the surgery (about 4 miles away) or do a house call. There also a partner practice - access to all notes for both practices - who has some surgeries at complementary times.

[piglette in reply to PMRpro]

I suspected that, it is just the way it is reported.

Oh for the old days, I am not sure house calls even exist around here anymore unless you call 111.

[PMRpro Ambassador in reply to piglette]

I know Claudia will nip out and do a house call in the middle of surgery if no-one else is waiting and it is close by. Just leaves a note on the door - no other staff. And she visits her chronically really poorly patients at least once a week. She also takes all the time she needs to deal with a problem in one go - so you don't have to keep going back. If it is something she knows is beyond her skills - referral immediately. David needed an echcardiogram - he was offered a next day appointment in a hospital about 45 min drive away but we actually went the following week when I had an appointment for something else so we only drove over once. And had a very nice lunch in town

[Janann25 in reply to PMRpro]

Wow! Can I come and live near you? 😊

[piglette in reply to PMRpro]

Our doctors would find it all much too stressful! How times have changed.

[BonnyQuine in reply to Janann25]

Snap! And at mine you have to queue before 8am. And no guarantees. I hate it.

[BonnyQuine in reply to BonnyQuine]

That's the system of same-day only appointments. Strange positioning of reply.

[Amkoffee]

You struck a chord with me when you said that your GP casually mentioned that you had PMR. That's about how mine went as well. In fact the nurse called me and said oh by the way your blood test results show that you have PMR. And I'm like how do you spell that. And it wasn't until I actually got on these groups that I realized how significant it was going to be in my life

[PMRpro Ambassador in reply to Amkoffee]

I find it very worrying that they think a raised ESR/CRP means it is PMR. There are other causes - and they rarely mean that the blood results have eliminated the others.

[Janann25 in reply to PMRpro]

I'm not sure whether your reply above is in reply to my own post or whether it's in reply to Amkoffee? In my own case, the blood test was done originally because my symptoms were typical of PMR - but I didn't know it at the time because I'd never heard of PMR.

Incidentally, I had a call from my local hospital yesterday afternoon to say I'm booked for a scan followed by a biopsy this coming Wednesday. As I will have been on 40mg Pred for a week by then I'm wondering whether anything will show up but I'll still keep the appointment anyway. Ive had to work very hard to get to the rheumatologist and I don't want to upset them - the expression "keeping all the balls in the air" comes to mind!!

Jan

[PMRpro Ambassador in reply to Janann25]

It was in response to amkoffee's comment really - this forum really annoys me. Another one that "nests" responses at least puts who the response is to at the top of your post!

The biopsy is about 50/50 anyway and it is thought the likelihood of success falls 10% per week of high dose pred. The scan you mention - ultrasound? That should catch the leftover signs I think. Hopefully it is positive - not because I want you to have GCA but at least then you know for sure.

[Janann25 in reply to PMRpro]

I won't get the paperwork associated with the appointments until after the weekend so I'm not totally sure which type of scan. When I saw the rheumatologist this week, she muttered something about the possibility of a "special scan" - obviously didn't think I was intelligent enough for any further explanation! I'll let you know how it goes........

Jan

[PMRpro Ambassador in reply to Janann25]

"Is that the sort looked at in the TABUL study?" might be a handy question.

isrctn.com/ISRCTN46280267

which basically confirmed these thoughts:

rcpe.ac.uk/sites/default/fi...

[Janann25 in reply to PMRpro]

Having just read the information in the two links which you suggested, it seems to me that there's a strong indication that the biopsy is almost a waste of time - perhaps you'd let me know if I've got that right. Unfortunately, even if that is the case, I don't think I would have the courage to refuse the biopsy - I wish I was more assertive.

[PMRpro Ambassador in reply to Janann25]

In the half of patients for whom it is positive they have a 100% certain diagnosis - no-one can come along later and say they disagree with the doctor who plumped for GCA. That happens a lot - probably because of the fear of pred on the part of so many doctors. If you didn't see the patient originally - YOU DO AND CAN NOT KNOW!

For some clinical trials they need a certain diagnosis - and the biopsy remains a prime criterion there. However - once the ultrasound technique is widely available it will remove the need for an invasive test that isn't conclusive and means a waiting time which doesn't help.

[Amkoffee in reply to PMRpro]

I can see your point but at first my pains responded well to the prednisone. In fact I remember a horrible flare I had. I allowed it to go one for days and finally called my rheumatologist who instructed me to up my dose (duh) and the pains subsided. However I have also started getting roving pains . And my hands have started to hurt . At first it was just my right hand and I had a nerve conduction test done and basically everything is good, but I do have OA in my thumbs. And now within the last month my hands are starting to swell. In addition my white blood count is elevated which is not a surprise since I'm on prednisone but it was high before I started my prednisone . I also discovered that my liver enzymes are elevated . All this being said she has referred me to other specialists and I'm working on finding out what's wrong with me besides PMR

[PMRpro Ambassador in reply to Amkoffee]

Just because the symptoms respond to pred does not mean it is definitely PMR and not anything else - although I see it said on the forums time and time again. It differentiates from fibromyalgia (pred does nothing there) and at a low starting dose it makes PMR much more likely. But late onset RA may be almost identical to PMR at first - down to the good response to pred - and when the response is slow or needs a higher dose it should ring alarm bells gently - especially when the patient later really struggles to reduce the dose and flares a lot. And there are a couple of other options that can mimic PMR and GCA symptoms.

[Amkoffee]

What you are saying surprises me. In every forum that I go to on PMR everyone says that the it's a sure test for PMR is if the pain responses to prednisone. My inflammation markers were high and I had pain, I took the pred and the pain went away. I thought that was a sure bet I had PMR. It wasn't until I started to reduce that I started having problems.

[PMRpro Ambassador in reply to Amkoffee]

It is an old criterion - but there is now a lot of dispute amongst the experts. It is just part of the overall picture. Others quite rightly realise pred will have an effect with other things too - and there are also some who believe pred will make EVERYTHING feel better! Unfortunately - no it doesn't!

[Amkoffee]

That is true enough. When I was sick in the hospital in May I was taking 50mg and everything felt great. Even my joints with OA.

[Ankara]

I have come to this discussion late but I developed double vision treated initially by an occlusive lens. About 6 weeks ago I had a Botox injection in my 'good' eye which after a few days ago has reduced the double vision and now my vision is great. On another note have been messed around so have asked for a second opinion. Gp has put me on prozac which is doing nothing to improve things ugh..what a b.....

[Janann25 in reply to Ankara]

Thanks so much for your post with details of your own experiences. Never a dull moment with this illness is there?!!! Anyway, back to the subject in hand. Because each of my eyes was working ok separately (when I covered each eye in turn, I could see fine with the uncovered eye) the optician felt she was sure she knew what the problem was before she did any tests. And it looks - so far - as if she was right. My problem is that the muscles aren't working properly and so the brain still sees two of everything. She ordered a "sticker " which is a temporary prism and which could be put on the back of one of the lenses in my existing glasses - took a couple of days for it to be ordered but on last Tuesday it was fitted and my vision greatly improved. By today, it's back to normal but I know the optician wants to wait for a couple more weeks before I go to the expense of new glasses, just to make sure all is ok. As to the reason for it happening in the first place, well it could have been a coincidence that it happened when it did or - and the optician seemed to think it could be the case, the PMR/?GCA has damaged the muscles of the eye. Who knows?! This illness seems to have a life and will of its own! I do so hope that you start to get some satisfactory answers soon - it's bad enough for us not knowing what's happening without the "experts" not knowing either😉😉

Jan

[Doralouise77]

Very interesting comments about vision difficulties....I just saw a neuro-opthamologist this week who said everything was fine re any GCA changes, have a small cataract and just diagnosed with glaucoma...both of which I had known....but what my vision tests show and what I see are totally different....I was told both eyes are seeing the same....but to me my left is so blurry I hate to even drive and my right eye is too blurry to read....I've had two pair of glasses made based on my tests and when I get them I can't see a thing....the neuro-opthamologist said I needed only minor adjustments and even not one for distance and just a small increase for up close, ...I'm totally discouraged and upset....I can't see street signs, shopping aisles, like walking in dense fog and need a no. 4 to read.....

Thanks for listening,

Cheers

[Janann25 in reply to Doralouise77]

How awful for you - and even worse when you are told all is OK but it's obvious to you that it isn't. Have you been given the option to see another "expert"? If not, I really feel you should ask for this, you just can't go on like this. Please let me know how you get on.

Jan

[Doralouise77 in reply to Janann25]

I have already seen two opthamologists and two optometrists, the last one sending me to the neuro-opthamologist.....it's bizarre isn't it?! I will see how the next pair of glasss go....thank you for your concern,

Cheers