Are blackouts normal with PMR?

[LBM1953]

Hi All. Managed to persuade my GP to up my dose from 15 to 20 mg, which I have started this morning. This a.m. is the worst yet. Pain at 10 and first time it has got to my left hand and has made it virtually redundant. So enough with the pain but I was shuffling around the kitchen making a cup of tea half an hour ago and suddenly went very dizzy to the extent hat I nearly blacked out. Managed to get myself into my home office chair where it carried on for a few minutes and caused my to sweat, shiver and yawn uncontrollably, all at the same time. Has anyone a similar experience. Regards (in agony) LBM 1953.

[PMRpro Ambassador]

Please do NOT accept that as fine, please at least call 111 but preferably 999 (since it is Saturday!)

Neither PMR nor 20mg should lead to that and all the other options MUST be ruled out. Immediately

[jinasc]

Just to re-inforce what PMRpro has told you to do.....do it now preferably 999 as it is Saturday and you can wait too long for an answer, then all the questions and passing on to another level..............get cracking with your fingers now 999.

[SheffieldJane]

This just doesn’t sound like early PMR to me, losing the use of one hand and almost collapsing with shivering, yawning and extreme dizziness. In addition to this you haven’t experienced any relief from Prednisalone. 3 weeks seems an awfully long time to wait for any impact to be felt. Our response to Pred is a diagnostic tool. I think that you need a second opinion. If your symptoms are mainly muscular, skeletal then perhaps a Rheumatologist or even a Neurologist should run tests for you. Let us know how you are getting on.

[MrsNails]

Hi LBM1953

This is NOT usual with PMR or Steroids but Please, Please Dial 111 & ask for advice as it is Saturday - you really need Reviewing & Urgently, if you cannot get through to 111 dial 999

Do you live alone? If so please inform a family member, friend or neighbour.

Please keep us informed.

MrsN

[Kendrew]

Must agree with all the comments. This is not typical and requires urgent medical advice and possible intervention. As suggested, you need to call 111 at the very least.

[LBM1953]

I am getting relief with the Pred, it just takes time for it to kick in. I am currently talking to 111. Will give feedback....

[LBM1953]

Hi All. Just got off the phone with 111. They have obviously "triaged" me and will phone me back withing the next two hours or maybe sooner. In the meantime if I have another "episode" then I am to phone 999. Hey ho. What a (PMR) life!! 😀

[Kendrew in reply to LBM1953]

It's important to identify the reason for the sudden onset of those symptoms so I'm pleased that you're 'in the system' now. Please let us know how you get on. Thinking about you.

[MrsNails]

If you do have another episode then please ring 999 & update us as the day proceeds. Kindest Regards

MrsN

[DorsetLady PMRGCAuk volunteer]

Ditto to everyone comments, but personally I would be thinking about A&E - under your own steam if necessary.

[LBM1953]

Just spoken to 111 nurse. Very long conversation and analysis but the upshot is that as I have no other symptoms (I assume stroke or heart) then she didn't suggest I go to A&E. She said that I should inform my GP, and phone 999 if it happens again. Regards. LBM1953

[DorsetLady PMRGCAuk volunteer in reply to LBM1953]

Sorry not really good enough...and agree with Kendrew - needs checking. Better be checked and it be a false alarm than miss a heart attack.

[123mossie in reply to LBM1953]

No, you need to be seen, there's a few red flags there that nurse has skipped across. It could be vasovagal but.. but... Don't hold back, better too much attention than not enough!

[Songbird69]

111 can take forever. I hope they have called you back by now. If not, 999 is your best option, whether you have another episode or not. Best to get yourself thoroughly checked out. 🤗

[Kendrew]

I'm an ex nurse (from a long time ago) so I really don't wish to come across as alarmist but pain and temporary loss of use of your left hand/ arm plus sweating, and near loss of consciousness are all strong indicators of something occurring that shouldn't be, and it could be linked to your heart and circulation. At the very least I would have expected you to be called in for an ECG and blood tests. I know that if it was a family member of mine, I'd have definitely pushed for them to be seen. Please ring them again if you have the slightest indication that any of those symptoms are reoccurring. Other's will be along if my advice seems over cautious, and will advise you otherwise. Please take care.

[LBM1953]

Many thanks for everyone's concern. Left hand is back to normal now so I'm fairly sure that was PMR as I took my steroids at 9.30 a.m. Wife is back home now so she is keeping an eye on me. Looking forward to watching Ladies Final Roland Garos, (what a great game last night)!!! Regards. LBM 1953

[piglette in reply to LBM1953]

Totally unbelievable game last night. I wanted Nadal to win!

[Oumaof2 in reply to piglette]

Me too... Not impressed with today"s No 1's cynical win... I really wanted Stefanos to do it... He acquitted himself brilliantly...

[piglette in reply to Oumaof2]

Totally agree

[GOOD_GRIEF]

It is never normal to experience a loss of consciousness or a near loss of consciousness. I'd be heading for A&E and reporting symptoms of a possible TIA or mild stroke.

This is an emergency, not a "wait and see" situation.

[Nagswoman in reply to GOOD_GRIEF]

Agree. I thought TIA.

[Seacat30]

I have been quietly worried about you since reading this yesterday. How are you feeling today? Did 111 get back to you? I would love to hear that you have had this checked out a bit more.

[scottygirl73]

How are you today?Any more dizziness ect?As others have said don't leave this if it happens again 999,and tapk to your Dr on Monday.Please take care.x

[MrsNails]

Anything to report this morning LBM? How are you feeling today?

[Jan_Noack]

just call 999 over there.that dizziness/ almost blacking out thingy may be a stroke/TIA(mini-stroke that supposed leaves no or little damage) or some kind of seizure (there ate many kinds that don't involve lying on the ground and shaking etc of some kind. I have had vaguely similar episodes and taken myself to hospital and been ignored. I have also taken my Dad with what I thought was a stroke when just outside an emergency dept at a hospital..I got him in the door..also ignored for 4 hrs..the ambulances get preference and kept coming in..so go by ambulance. I'm not in your country. It took decades for me to get diagnosed and then it was as I could pay for an MRI/A by myself finally..so I was given one... it's not PMR and prednisone may only help if anything but reducing swelling so It's not that. Also in case it is some blockage etc..do make sure you take an aspirin..I take 300mg when dizzy (or even two tablets) or otherwise 100mg per day. ..but ask your GP (or ambulance) if this is OK. It's supposed to be why many people with similar symptoms can survive..ie taking the aspirin to aid the blood flow, and it does. prednisone also helps by reducing also swelling in blood vessels. May not be this.. but just in case until you get a diagnosis. I did had strange reactions the first two or three years on pred too.. stopped now as have the those episodes mostly... Would be good if you can get them checked out as they occur. I didn't push hard enough..but then one doesn't when one is having them I guess...

Also if you can, for peace of mind even if you have to pay for it, try to get an MRI/MRA full head and brain with time of flight(TOF) and NO gadolinium and if you are lucky enough arterial spin labelling (ASL) (can't get in Oz) or get a good neurologist if possible.. but then you never get into the specialist when it's happening! I think the UK is far superior healthcare, so good luck

[LBM1953]

Hi All. Took my increased 20 mg yesterday and pain still at 9+ this a.m. All generally as before when on 15 mg. Took the 20 mg again this morning but if I am still the same tomorrow I'm going to take 15 mg in the morning and 5 mg before bed. I did this once last week (off my own bat) and the morning was much better. As to yesterday. I think I know what (may have) happened. As a result of me playing with dosage times I made the mistake of leaving over thirty hours between doses. I took one dose at 2 a.m and it wasn't until 9 a.m. the next day that I took the next (which is when I had the episode). Coupled with the fact that I think my dosage is too low I may have been experiencing steroid withdrawal. I have not had a repeat of he episode today but the left hand is painful and stiff for he second day running but not nearly as bad as yesterday. I supposed we all have to learn from our mistakes and getting the dosage right is going to take some trial and error. Many Thanks for everyone's concern. LBM1953

[Heron82 in reply to LBM1953]

Numbness is not a feature of PMR neither is dizziness, you really should be heading the advice given by the experts on this forum and get yourself seen by a medical expert. Good luck.

[Exflex]

From a non medically trained point of view, but based on what I have come to understand from an experience 12 months ago. If you overdo things (as I did and ended up in hospital) it can cause a cytokine storm and if you don’t act quick enough that’s the result. At the time I was on 12+1/2 mg of Prednisolone and had been playing football in the afternoon, I felt really unwell in the evening in lots of pain all over and developed a temperature. I nearly passed out and eventually taken by ambulance where they doubled my dose to 25mg. The next day I was back to normal, but endured three days in hospital trying to decide if I had an infection.More recently (February this year) I developed a chest infection and my GP prescribed A/Bs, she also told me to double my dose of Pred from 10 to 20mg because I was again suffering from a cytokine storm. Quick action prevented hospitalisation.

[Grammy80]

Sometimes it just doesn't pay to always wait until tomorrow to see how your condition is. I certainly hope you seek the appropriate attention. You have received a lot of great advice! I hope you're stabilizing.

[Buckc12]

I have had aheart attack and PMR and have been using pred for over 6 years. Your symptoms are classic heart problem especially the left hand and sweats with dizziness. Waiting could cost your life.

[Nagswoman]

People must never forget that GCA is PMR's brother.

[LBM1953]

Hi All. Just had a consultation with a (different) GP at my surgery. She is confident that the symptoms I described was a "pre-fainting" episode. This could be for various reasons but the fact that my pain levels were at an all time high could have been a factor. I'm OK with this. On a separate note she reviewed my PMR. Yesterday morning I was still at 9+ and took the 20 mg Pred in the morning after breakfast (second dose at this level). This morning there has been an improvement (down to 7) and I am definitely more mobile than yesterday. I decided to take the full 20 mg this morning again rather than split it. I still think that an increase to 25 mg would be better but she said that if I have not seen a marked improvement by Friday on the current increased dose then we should be thinking that it may not be PMR (although she also said all my blood tests pointed that way). Methinks that if there has been a marked improvement but not where it should be that I should push for 25 mg. Once again thanks to all for all your concerns. LBM1953