Is there a beginner's guide to the symptom cycle?

[Brizzleben]

Hello fellow club members, and my thanks and appreciation to everyone who has contributed to this forum, especially those who took the time to reply to my post the other morning. I've been reading widely and what I've learned is helping me understand what I'm going through and where I might be heading.

I'm curious to know what thinking there is about the underlying condition.

As many have reported, I have notices the symptoms following a clear cycle; pain and stiffness at their worst in the morning, gradually improving during the afternoon and then at night a pounding whooshing noise in my ears, especially on one side, and at various times, heavy night sweats.

The sweats started a few weeks into the PMR and are intriguing in that I noticed that quite often their intensity was in inverse proportion to the pain I felt next morning: more sweat, less pain.

What is the thinking about what's going on? I've read comments about the body dumping unwanted material into the bloodstream at night (if I've understood it right) and that's exactly how the sweats felt.

Thank you.

Ben

[DorsetLady PMRGCAuk volunteer]

Hi Brizzleben

Not a medical explanation, sure PMRpro will be along shortly with that, but my understanding

“..... the body dumping unwanted material into the bloodstream at night...”..

I guess you’re referring to cytokines which are released around 4am every day, and because your immune system doesn’t react to them in the normal way it allows the inflammation to build up within your blood vessels and causes you pain and fatigue. That’s why first thing in the morning you feel worse, then if you take the Pred around 8am it takes a pr least a couple of hours to start working on that inflammation so by late morning/early afternoon you feel better.

Can’t say I ever had the whooshing pounding in ears , but I think that may well be a side effect of Pred, sure someone will confirm. Sweating is quite normal with PMR.

[Brizzleben in reply to DorsetLady]

Thank you, DorsetLady. Yes, your explanation accords with what PMRpro says below: it is the Cytokines. The Prednisone is doing wonders and I have no pain at all. I guess that's what you get on such a high dose. And last night I actually slept properly for the first time since starting so I'm very lucky. And not a drop of sweat.

Thank you again for your response.

[funnylee]

Hi Brizzleben,

Before I was diagnosed with PMR I had fever like symptoms and night sweats, but they disappeared once I was on the preds. Still slightly stiff in the mornings, but it improves during the course of the day.

Funny you should mention your ear noise, I had a weird turn last year where I wend very dizzy and lost my balence for a couple of hours (including a lot of noise in my ears). I obviously had this checked out and it was attributed to 'labarynthitis', but I'm not convinced. Fortunately it hasn't returned, though I still have tinnitus, but I can't help thinking it's PMR/GCA related.

[CT-5012 in reply to funnylee]

I had labarynthitis a few years ago lasted for a week not a couple of hours. The problem is caused by the difference of the messages between what your eyes are telling you and what the balance bit of your ears are telling you. In labarynthitis if you close your eyes the dizzyness goes away and no problem with balance. Much the same as being seasick so my GP told me, never been seasick I said his reply was “well now you should be a bit more sympathetic to those of us who are” no I didn’t laugh. 🤢😂

[Brizzleben in reply to CT-5012]

Thank you CT.

[yogabonnie in reply to funnylee]

I had the ear thing... in the end it was ear CRYSTALS. look up Eply Maneuver. It worked!! I've had sudden vertigo 3 times since in the last 5 years and every time this works!! Worth a try for Vertigo! webmd.com/brain/home-remedi...

[Brizzleben in reply to yogabonnie]

Thank you yogabonnie. I've added EPLY to the long list of things I should look into! Hopefully I won't be motivated by the return of the whoosh, which seems to have subsided.

Thanks again.

[Brizzleben in reply to funnylee]

Thank you, funny lee. Like you, my sweats have disappeared since starting on the Pred. I haven't noticed the whooshing so much either. Thank you again for your reply and I hope all goes well with you today.

[SheffieldJane]

No sooner do I get a pattern of predictable symptoms than it seems to change. I think your self explanation for the “sweats” sounds like a healthy interpretation. I no longer get that symptom or the ear whooshing. I feel that it was actually Pred related. I feel rotten when I first wake up, in a non specific way, but come round after I have taken Pred. I have an energy dip in the afternoon and nap if I can. I am pretty much finished for the day between 9 and 10pm. I would benefit from going out more but the cold weather and slippy underfoot is stopping me. I think these diseases have a fairly unique way of expressing themselves in individuals with some commonality. I like the idea of those sweats being a healing thing - shedding inflammation. They are nothing to do with external temperatures. It didn’t happen to me in 40 degrees Australia. May it all pass quickly.

[Brizzleben in reply to SheffieldJane]

Thankyou, Sheffieldjane. Yes, the stories here vary so widely. I'm feeling my way with the energy levels. I was definitely one of the grey bunnies WITHOUT the Duracall batteries on Monday but then I discovered two days later that I'd omitted 20mg out of my 50mg Prednisone dose on Sunday so that won't have been helped. And I thought I was so organised with my regime too!

[SheffieldJane in reply to Brizzleben]

Hi Brizzleben, does that mean you split your dose for GCA? I understood that this was not recommended for GCA, from advice on here.

If not then it just remains to say that we all cock up the dose at least once. When I did, I took extra a few hours late and had a very good day indeed. 💪🏻

[Brizzleben in reply to SheffieldJane]

No I didn’t split it as such. I just popped one Sunday tablet and left the other one in the packet. I must have attention span of a ...what was I saying?

[Hidden]

I had terrible night sweats before pred which returned after a brief sojourn. I have had pain issues for years and suspect the the reason there is less stiffness after a sweaty night is that you move round move in partial wakefulness. If I completely so No out all night my brain feels better but my body takes more work. I had palpatation on a night which if I was paid on side I could hear in the down ear. Like SJane indicates we all seem to have commonalities but we are in a personal debate with out immune system.

[Brizzleben in reply to Hidden]

I like that "a personal debate with our immune system". If only it could talk, it might make things a lot easier than trying to work out what it means from a pile of sweaty night clothes.

[northwesterner]

I tried to get up one day last week and was so dizzy that I just about fell over. I saw my doctor that same day and she said it was vertigo. I had never had that before but I have been experiencing alot of new medical issues since being diagnosed with PNMGCA. I learned about the Eply maneuver and will do that if it happens again. I feel for you. Hang in there.

[northwesterner in reply to northwesterner]

PMRGCA... my finger don’t spell right at times either

[PMRpro Ambassador in reply to northwesterner]

You can edit you know - click on the little box with the downward pointing arrow where it says More

[PMRpro Ambassador in reply to northwesterner]

I'm so impressed by some doctor's diagnostic skills!!!! Not...

Vertigo isn't the disease - it is a symptom and there are several causes:

nhsinform.scot/illnesses-an...

[PMRpro Ambassador]

No - not unwanted material being dumped. The cytokines are part of normal physiology and are essential to the proper functioning of the body in all sorts of situations for cell signalling. Inflammation is not always bad - it is needed for healing or example. Cytokines modulate or alter the immune response in the body. In the case of autoimmune disease something messes up the way they work - and the immune system gets the wrong message so starts attacking the cells in the body by mistake. That leads to cells being damaged - inflammation, swelling and pain. Damaged cells release stuff into the blood stream as they break down - just as happens in a viral or bacterial infection.

Most stuff on the internet is about night sweats in the usual suspects - menopausal women, cancer and so on - but this isn't bad:

wickedsheets.com/night-swea...

The primary reason for the symptoms being worst in the morning is because the daily batch of cytokines is shed in the body at about 4.30am and then they get to work. Many people will comment that if they wake and get up to the bathroom at 3.30am they are OK, at 5am they are not but stiff and sore. Taking pred at 2am prevents that happening, the cytokines are mopped up as soon as they appear. For me, having sweats as opposed to just gentle glows is a sign of a flare or that I have reduced my pred dose too far.

But even without pred, for many people the symptoms do improve during the day as they get the blood flow going with movement - somehow that helps flush the baddies out it seems. I would get up and struggle into a swimsuit at about 8.30am and got to the gym where there was a daily aquafit class in a warm pool. I showered there - the warmth of the shower alone helped, 15 mins in the steam room or sauna helped more. The movement of the class meant I was almost back to normal in terms of movement and could also manage a Pilates or Iyengha yoga class later. There was always pain though. That was how I kept going for the 5 years it was beyond the wit of man (sorry guys, my GP was male) to work out what it was.

I would suspect that MAYBE, just maybe, you have a degree of large vessel vasculitis (LVV, which affects large arteries, mainly in the trunk) which may even be verging on GCA (more confined to arteries in the head), affecting the blood flow to the ears at times. Heavy night sweats are typical of GCA, more so than PMR, and PMR can be a symptom of GCA. Although it may be just coincidence and you are simply more aware of the pulse at night. However, I think I would like an expert's opinion if it were me.

[Brizzleben in reply to PMRpro]

Thank you, PMRpro. Very interesting.

I have GCA and am a week into Prednisone so the sweats have been stopped in their tracks, along with the pain. Do you think the medication treat the LVV by default or is it something to be looked into along side the GCA?

Thank you again for taking time for the earlier reply

[DorsetLady PMRGCAuk volunteer in reply to Brizzleben]

GCA is one of the LVV family, but it also manifests itself in the smaller vessels in the head (which seems to be the more common). But with a GCA diagnosis it is recommended that you have regular chest X-rays just to make sure your Aorta isn’t affected.

[Brizzleben in reply to DorsetLady]

Thank you DL 😊.

[PMRpro Ambassador in reply to Brizzleben]

Don't know how much of this you can understand but the image on the left in Fig 1 shows the relationship between PMR, LVV and GCA. The reason they describe the chest and abdomen arteritis as LVV is because you can only see there is inflammation with the imaging that is used - to identify giant cells as the cause you would have to do a biopsy which isn't an option unless cardiac surgery is being carried out. There are various sorts of LVV, some respond better to other chemotherapy drugs - but they also have other symptoms besides the ones you know in association with GCA.

academic.oup.com/rheumatolo...

The x-ray DL mentions is really to see if an aortic aneurysm is developing as a result of the GCA rather than there being inflammation (which doesn't show on an ordinary x-ray) and it is something that should be checked for even well after GCA has gone into remission.

[jinasc]

Living with PMR & GCA - co-written by PMRpro.

pmr-gca-northeast.org.uk/in...

[Brizzleben in reply to jinasc]

Great. Thank you jinasc