Pre PMR not so much as a paracetemol. Now on loads of meds for PMR (pred June '17 15mgs now 6.5mgs), persistent UTI (Nitrofuatoin since May '19), Racing heart beat (Bisoprolol 5 mgs), Blood thinner (Apixaban 2 x5mgs), Atorvastatin (40 mgs not yet started).
Have had swelling on throat for a long time. Put it down to PMR / pred face etc. Initially had severe head sweats (shower like!) on pred. These symptoms have come on with a vengeance again these past 5-6 weeks, along with a couple of new symptoms.
The new symptoms are the feeling of walking into a cobweb around nose and mouth really irritating and itchy; pronouned indentations in skin in a line on inside arm starting halfway from elbow to wrist and I have noticed the same indentations on top of my feet leading to joint of big toe. The indentations on wrists and feet are bilateral. I have also noticed that my hands when viewed from top look very flat (no knuckles) and looking at palms if palms are very slightly stretched, palms and fingers up to first line go very white, up the next line in fingers pale and tips remain normal colour. Anyone else had any of these symptoms who could shed some light?
I have long thought the Nitrofuatoin was causing swelling to neck and last week spoke to nurse at surgery. This med has been changed now to Cefalexin 250 (half tab at night) though thought I would give myself a couple of days to test a theory whilst swopping over meds, so took neither last night. Having had a bad bout of cobwebs and neck swelling this morning I took piriteze allergy tablet and this evening neck swelling and cobwebs much subdued, though bouts of severe head sweats still present. Since I stopped antibiotics and took piriteze I don't know which is responsible, if any, for decrease in symptoms.
As for headsweats I thought I had 'outgrown' these. These are more frequent some days than others, but when I say it is like standing in a shower I do not exaggerate! I know just before it about to happen as my scalp gets itchy and it feels like hundreds of ants / headline have been released on my head, then the heavens open!
So are we thinking allergy, hayfever, or another ailment / syndrome (or perhaps all three) to add to the ever increasing list?
(P.S. Am beginning to feel like a hypochondriac!)
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Marilyn1959
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I can only sympathise. We are absolutely riddled with weird symptoms and it is hard not to brood upon them. All your theories are probably right, in normal circumstances,I guess the doctors would do an Endoscopy on the swelling in your throat. Personally this would concern me most. I was thinking how interested a Homeopath would be in your complex allergy type symptoms. That is just the kind of case history they like to take. I was so keen on it in the 80’s. It has been pretty warm which has probably triggered a return of the head sweats. Of course it is hay fever season too now and I guess we don’t have much to fight back with. Sorry Marilyn, not much help I know just a hug.
Hi Jane. Did you nap this afternoon too or just suffering with insomnia? Thank you for your virtual hug which is gratefully received.
Yes, neck swelling worrying me too. Especially since one day off antibiotic I now have a relatively normal neck, providing I don't put my chin on my chest!
I will test theory about the Nitrofuratoin again tonight and see what happens in the morning. I will also try to with hold from taking piriteze tomorrow if neck swelling is still reduced to see if it remains so. I suppose what has led me to thinking it is possibly the Nitrofuatoin is that the pill always gets stuck in my throat when I take it and also swelling in body generally (put down to pred initially) reduces if I don't take it, particularly in legs and feet. This response is almost immediate too. I did mention this to GP previously, (in the days when you had a face to face appointment), suggesting this medication was actually resulting in water retention type body swelling symptoms and infrequent peeing, but she convinced me to persevere with it. Hopefully I won't end up with raging UTI as a result of my experiment and I can get down to the bottom of it.
I have also developed an allergy to plasters which is something new too!
However, have to say, in current circumstances, we have much to be grateful for!
I have definitely experienced a swollen neck and a proneness to choking I tend to put it all down to Pred ( it’s mostly all I take). I had that urine retention thing too. On a high dose Pred it is much more normal weirdly.
I nap at least once every day these days, I can’t keep my eyes open, my nights are like a marathon of waking, reading, sleeping ( not much more than an hour at a time after 1 am). I am very puffy all over. A bit depressing. 😕
I empathise! I have found to my cost that not everything is down to pred, particularly the palpitations and racing heart. So be sure that all is investigated Jane. Hope your sleep pattern improves soon Xxx
I get the cobweb on the face feeling (only very occasionally now, it was worse). I have had a return of neck sweats, mainly very early mornings, recently - but have improved them by opening the door to the balcony overnight and reducing the room temperature a lot. But nothing of the degree you describe.
Hayfever has been bad for OH - that could match with the things I have noticed. It is weird - and I do wish it would go away!
I am in good company then! The cobweb thing is new and VERY weird. I must look like I have developed a 'tic' trying to brush off something that isn't there. The expletives are also tic like but are a mere frustrated response and are therefore voluntary!!🙈🙈🙈
Hi, atorvastatin I am on, I take mine just before I go bed, used to take it earlier but found I couldn’t sleep !! I dropped mine myself from 40mg to 20mg after reading up on them. Sounds like you have severe hay fever !! No what you mean about ants in your head !!!! Ahhhhhhh I now wear a cap on my head and the itching is not as bad ! Try one and see, sorry not up on other symptoms x
Thanks Margaret. I didn't take antibiotics for two nights and swelling in neck has completely gone down. So I think this is / was an allergic reaction. The cobwebs feeling has greatly reduced too, without piriteze today. Time will tell whether this is / was an allergic reaction.
Thanks for tip re Atorvastatin. I think a cap might make me sweat more. Had three bouts today! Fortunately we have air con in lounge so I dive under there and blast myself with cold air. It is so bad at the moment I am grateful I am in lockdown. Highly embarrassing. Hope it is just a phase.
Sorry can’t offer any suggestions Marilyn except to say that the Nitrofautoin didn’t suit me at all ( don’t know if I’ve spelt it right) It was while I was taking pred and lefludomide so it might have been reacting to both of those drugs. I had bad hallucinations and was very sick so I have refused to take it again. I do take D mannose every night as a precaution against UTIs. If I sense one coming on I up the fluids and the D mannose ( powder form) and that seems to work for me.
I get it from Amazon Marilyn. I buy the tubs of D Mannose powder so that I can increase the dose if I need to ( sometimes I’ve had it three or four times a day to flush out infection)I also bought myself on line, same place, some testing of urine sticks so I can see if there is an infection lurking and when it goes.
I hate that cobweb thing. I know what you mean. The nitrofurantoin made my eyes yellow so have to stay away from it! I hope you find answers to your swollrn neck issues. No end to the "extras" sometimes. Let us know how it goes.
Hi Powerwalk. Swollen neck seems resolved by abstaining from taking Nitrofuantoin. So definitely an allergic reaction to it methinks. Do you know what causes your 'cobwebs'?
Oh good re the neck! The cobwebs, i honestly dont know, i got it years sgo and read somewhere that it can be a hormone thing, so probably peri menopause, menopause thing. So thats what makes me think its something to do with the pred, maybe adrenal hormone related. It seems to be a common enough thing though very annoying and weird. Obviously if it got bad u could get it checked out. These things, like yesterday all my hands and face had prickly feelings all over. Probably never know why. Just to keep the weirdo things coming!!
My story seems very similar - now currently in hands of NHS home care team. given Nitrofurantoin 3 days ago for UTI ( I self catheterise at present). After 2 tablets and brown urine I had bad experience during night - light headed / fainting/ heart racing. Have stopped the antibiotic and care team checking heart. Blood test shows high CRP of 34 which is very worrying for me - was down to 4mg daily Pred. Now waiting for advice from rheum and GP re other blood test results.
Like you I feel there is too much going on health wise when I am normally feeling fit and coping.
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Thank you for your virtual hug which is gratefully received.
My body wants more pred!
Don't know if its the tapering down off Pred or flu symptoms. 
Pred reduction and jelly legs, dizzy spells and neck and shoulder spasms - is there a connection?
PMR OR OTHER !
