Hi all
Just wondering if anybody can help. For a while now (started pre-pred) I have been making weird noises in my sleep. It is not normal snoring but appears to come from my throat. It does not make much difference which position I sleep in (even sitting up). My partner says it is like sleeping with someone playing the trumpet.... badly! The thing is, my throat has felt increasingly strange (very dry, horrid taste, slightly swollen) since the pmr and It has just occurred to me to wonder if there is some connection? I have tried a few things such as, ice cold water, hot tea, no drink, nose clip...all to no avail. Any serious suggestions would be extremely welcome.
I know I used to make nightime noises in the first years of PMR - not now, thank goodness. I think it is when the PMR is a bit more than "just" PMR and is also affecting the larger arteries in the chest. The neck muscles are affected so they lead to a form of snoring. I had a permanent sore throat (not that my doctor took any notice of that complaint) and a tickly cough all the time.
In retrospect I realise that all the things I noted then are actually listed on the GCA symptoms list - no one asked at the time when I saw a rheumy. I have discussed this with a few rreumatologists since and all have agreed that I probably have a sort of intermediate form of GCA, it hasn't reached the head arteries but is affecting the chest and upper arm arteries. A dose of 15mg cleared most of them and they haven't come back. It took quite a while for some to disappear and the "snoring" was probably one of the last.
There is another possibility and that is silent reflux - stomach acid being regurgitated overnight and irritating the throat. That is something your GP should react to even if mine didn't. If you are on omeprazole or something else for stomach protection that shouldn't apply - provided the dose is high enough and you take a dose at night: you should take omeprazole and friends to be most active at the times you have most problems, so an hour before a meal or an hour before bed.
Hi Eileen
Thankyou so much. I thought you would all think i was mad! It is such a relief to feel this may be a temporary affliction. I do suffer with acid reflux so I have Omeprazole on hand. I will try taking this regularly, at night. Your comments about intermediate GCA are very interesting too as I have a very swollen neck that I put down to pred. My doc has repeatedly checked me for Thyroid problems and the tests are, thankfully, negative. When I was first diagnosed, I suffered terrible chest pain. This was the first thing to go when I started on 15mgs of pred. However the pain in my arms has never completely gone. My doc cannot understand this and has now referred me to a rheumatologist (still waiting for appointment). Is their any official info I can read about intermediate GCA that I could arm myself with for my appointment? Thanks again. Debbie
I would bet that the dose isn't quite enough to deal with the level of inflammation in the brachial artery and you still have some claudication there - is it when you use your arms? Holding a phone, ironing, cleaning windows were absolutely impossible pre-pred and I still get sore biceps if I overdo using my arms - that's on the way down to 3mg and the reason I am not entirely sure the PMR has gone totally.
I'm getting fed up with doctors who "can't understand why I still have pain" - pred is a miracle, it isn't a 100% prevention for most patients. We all have some left over pain if we try to do more than we should. Some can do more than others but I don't believe ANYONE is truly pain-free.
No there isn't really anything about it - though the researchers are beginning to see that patients have inflammation in the right places but it doesn't extend into the head. It's partly due to the position - you obviously can't biopsy the aorta or brachial artery. Now they have ultrasound availablein research centres they can see there is inflammation there and when patients who are a conundrum are sent for PET/CT scans (that's CT with special contrast stuff) they come back with positive results. And suddenly they are seeing there are younger patients who "can't possibly have PMR, it must be something else" who DO have inflammation in the typical places. Trouble is PET/CT is expensive and not available everywhere so isn't going to be a diagnostic tool in the UK. They can't even get the ultrasound diagnostics set up.
Look for "GCA symptoms" - you'll find chest pain, sore throat, cough and so on. There is probably a fair bit on the PMR/GCA northeast support site about symptoms overall.
Where is your arm pain? If it is tendonitis or bursitis it may not go on lower oral doses of pred. Mine did but it took months and I still have some pain in my left arm on occasions - at present probably from carrying cases and stuff when on holiday in the UK a couple of months ago together with far too much typing! Or it is referred from the trigger point in your shoulders that is implicated in myofascial pain syndrome - a good physio or sports massage would help that.
Hi
I am currently on 13.5mgs reducing on the slow reduction plan to 12.5mgs. Do you think I should stop trying to reduce? The pain is in the tops of my arms and is definitely worse after certain activities i.e washing up, making the bed and faffing overmuch with my hair which is in awful condition (blaming the pred for that to) at the moment.Also have to keep stopping as I am typing this, to rest my arms for a few secs. I don't think its Tendonitis as I have had that in the past and this is different. I do get headaches (less severe since I started the pred) and eye probs intermittantly but no jaw ache. My esr is currently 12 but fluctuates. Has been as high as 35 and as low as 10 over the 8 months since I was diagnosed. Will google GCA symptoms now and see what I can come up with! Debbie
My answer would be to stop doing those activities!!! ;-) No - seriously, if it is still as bad as that I think lower might not be that good an idea yet - how long have you been on pred now? I assume you started at 15mg. I didn't think it was tendonitis either - the biceps definitely aren't but where is your pain? If your ESR has been down to 10 that is what you should aim for all the time and when it goes back up it is suggesting something is going on - it could be as banal as a cold of course but still.
And yes - pred induces a permanent bad hair day. Mine wasn't too bad on prednisolone but when I was switched to Medrol it was like a birds nest, frizzy and didn't grow for months. When I was switched to a form of prednisone it has all gone back to normal - my teens and twenties normal that is apart from colour, I have rampant curls again!
dear debbie, have you thought about sleep apnoea.
Richard
Like Richard I thought of sleep apnea right away from your description. It may not even be connected and could be a coincidence. You can just develop apnea.