breathing (tightness) excess nasal mucus

Yes I do have other many other medical conditions some I listed in Medical History .. basically my liver and pancreas are the only undamaged organs .. one added plus is I'm not diabetic .. the mucus is mostly in the throat but I do have sinus problems also .. the PMR was just diagnosed this Fall after a very painful Spring and Summer (after I came off 20mg of prednisone since Last October to relieve my beathing) this has been my Winter dose for the last 4 years during the Summer I can manage without steroids (lungs are scarred from the massive invasive antibiotic resistant infection I had in 1999) when I came off the steroids last Spring I had a lot of pain and difficulty breathing when I went back on pain went away and breathing was easier pain came back when I went off steroids again but breathing was easier as it was warm to hot at that time .. PMR diagnosis was made then .. I think the PMR really effects my breathing in cold damp air .. and your vascular explanation could be right .. does steroids relieve this condition also .. my question is does anyone else have this symptom too .. I don't want to be on the steroids but I'd like to be able to walk talk breath and laugh to do them all at the same time ..

Eileen, After 6 years PMR and getting down 1o 1.5mg I am having another flare up. Mainly neck, arm & shouldder pain and fatigue,

I have increased the pred to 5mg hoping this will ease the pain, do you think I have increased enough? I Cannot get an appointment with GP until 11th Feb!!!!!

Thank you

Only you can tell if you have increased enough. the trouble is that when you allow flares in, it seems to become increasingly difficult to manage the inflammation. If the symptoms aren't resolving, it probably isn't enough. Some doctors say dose at which the flare appeared plus 5mg - so 7mg might be better.

Maybe next time it would be worth hanging in at 2.5mg for much much longer before even attempting reducing further. Someone else on a forum today said their rheumy has said to do that - OK, they haven't had PMR for 6 years but even so, it isn't often you find a rheumy saying, stay there! I HAVE had PMR for much more than 6 years, 11 years in total with 6 years on pred. I'm at 5mg and if that's where I have to stick that is fine.

A month for a GP appointment? No wonder people go to A&E is there!

Yes, pred is the mainstay for GCA too. It often requires a higher dose to relieve the symptoms and clear out the existing inflammation - and that seems to be the crux. If you don't attack it aggressively to start with then you never get it under control.

I wasn't suggesting the possibility of Wegeners as "another" condition but possibly that it is not in fact PMR - because it sounds like PMR with extras. There is no definitive test for PMR, it is a presumptive diagnosis of exclusion, once everything else is ruled out.

Thank you Eileen, I will go to 7mg, I suppose I knew 5mg wasn't enough but I feel a bit dispirited, this lousy illness is never going to go. I've been there before and I know we just have to get on with it.

I could have gone to the surgery & "sit and wait" for about 2 hrs with all the patients with coughs & colds but I refused. This is the latest any appointments are like gold dust. I think they call it progress!!!!!!!!!

Ah - that's different! That is all that we have the option of - no appointments at all. It works very well actually - since they are used to it, people tend to go to the doctor when they need it rather than just because you have a cold - after all, the doc can't do much about a cold! My only complaint is that I have to have my blood clotting level checked every month and until now it was just a quick trip to the local hospital phlebotomy department, if you picked your time right there was no queue and INRs were fast tracked as soon as you were booked in and it took 15 min max usually. Our GP practice is twice as far to drive and you have to go and wait your turn - not impressed. Apparently that is progress too...

After the PMR was first mentioned I had to wait 5 months for an appointment with my Rumatologhist .. getting frequent blood level is just part of my life since 1999 that and frequent stays in the hospital .. up until the Fall of 2015 my arteries and valves in my heart were in very good shape (my heart muscle is damaged and I have a pacemaker difibrulator) I now have 2 leaky valves as a result of my parathyroids going bad in 2015 and filling my kidneys up with calcium and shutting down .. I'm now at end stage 4 kidney failure (up until then I had been doing okay keping my the levels between 3 and srart stage 4) with all my health issues I have had since 1999 and the new ones that have development in the last 2 years .. severe gout being another one which my RA now suspects was also PMR related .. I have to stay right on top of things cuz when one goes off it throws my whole system in alert even my liver ensign go into a full scream (they do go back to normal levels) .. but as long as I can still laugh talk and walk and harass our bowlers (my husband and I call it our retirenent business) I'm happy .. let me tell you I've seen the WHITE LIGHT and it is a very calm beautiful peaceful feeling and at times i would welcome it again .. I'm now 74 years old (living on borrowed time) but not ready to give up .. I do refuse to just sit in my chair and do nothing and if it takes 40mg of steroids and another 20 pounds to control the symtoms so I can Talk Walk and Laugh .. I say . ADD THEM ON .. thanks for you thoughts and comments ..

I am sorry to hear you have so much to cope with but you sound as though you make the most of every day. I have never met anybody who has spoken about the White Light but I experienced it my 20s as the result of a bad haemorrhage when I almost died. I saw a tunnel with this welcoming beckoning light but I knew I was not ready to go. I have never feared death since then and worked in oncology and the hospice for the majority of my 2nd career. Life is for living.

Yes that is the way I feel .. that was in 2001 .. it was such a beautiful peaceful and calm feeling .. then I heard my Daddy say "no not yet Jeanne" .. I've come close again several times since but havn't got that far .. my niece is my inspiration .. she is 15 years younger and has had sarcoidosis for the last 30 years .. she has endured so much pain and heslth issues with many many setbacks but she just gets back up and comes back fighting .. any time I feel sorry for myself I think of her and I go on fighting .. But I will say one thing .. I have no patience with self centered selfish pettiness (the mind set of many woman) .. I do speak my mind and I call a spade a spade .. as I've been known to say " hey your the "Selfish Petty Bitch" if the shoe fit's wear it" .. Ha ha ha haha

It happened to me in 1968. Like you I have some amazingly inspiring people in my life which certainly helps when I very occasionally think how will I manage to cope and I don't mean with the PMR. It's the other people in my life whom I support and have supported which I find more difficult at present because of the unpredictability of the PMR. The spirit is willing but sometimes the flesh is weak. I like when people are straightforward as I know where I stand with them. Overdid it this week and more so yesterday but had a lovely laughter filled day with friends so pain day today but can cope with that as not tired. Onwards and upwards.

That's the spirit .. after I got sick in 1999 I was ask this question .. What would you say you miss the most .. things you can no longer do .. things you did easily before your illness .. my answer was "laughing and talking" at the time I had only 40% lung capacity and about the same with heart strength .. I couldn't laugh or talk without losing my breath as I always put my all in everything I do .. hahaha .. I was a woman that went full out from the time I got up till bedtime .. the first thing I had to learn was 'to slow down and listen to my body" .. I also research all my medical problems and prescription reaction mixes .. hence this forum on PMR a new diagnosis .. keep laughing and living

I think that way too Jeanne, definitely a jam today girl - and my mother must have experienced the White light too. She had a cardiac arrest while on holiday in Germany - outside the police station and a few hundred yards from the hospital. They were there in minutes, got her stable and she spent 10 days in ICU. She came home to Scotland, had a triple bypass and had another 11 good active years. Towards the end she developed heart failure again and decided that was enough. One evening she wasn't well, her neighbour called the emergcy services and the OOH doctor arrived. He wanted her to sit in a armchair instead of the dining chair she was on - but she said she couldn't breathe if she did that. He said to her "You know you have heart failure?" and she just said yes. After about 3/4 hour she just slipped forwards into his arms and he laid her on the floor. It was  just like going to sleep. She had no fear, no agitation.

I have always thought it was a lovely way to go and you couldn't be sad - she ran a volunteer cafe at the court and it was to be closed. THAT was what she was scared of, it was her life and being too ill to do it or it not being there was her fear, not death. She had changed a lot after the cardiac arrest - but she never spoke about it unfortunately.

Which hospital/hospice Silver?

Nine wells and Roxburghe House, Eileen. Worked with some wonderful people....both colleagues and patients.

My Dad experienced it to .. he was in hospital at the time abd when he came back he told me he saw and angel .. also when my niece (I mentioned her earlier) was in recovery after a ruptured bowel .. they didn't expect her to live so I was allowed in to say goodbye .. she was on respirator and couldn't talk .. she was trying to tell me something and when I leaned down and looked in her eyes .. the weirdest thing happened .. I was looking at and into her Mother's face and eyes (my sister had passed on 2 years previously) Joe told me afterwards .. that was what she was trying to tell me "that her Mom was there with her and she was going to live"

Wow, ladies. Y'all are making me laugh and cry and smile this day. 

Jeanne, love to hear your story. Sorry for struggles, but what you've learned from those is so powerful! You too Eileen, and Silver.  

I'm starting to figure that out too. Guess life does things to get our attention and teach how to really live. 

It seems to be giving us lessons in health ways to appreciate even more what we need to appreciate. 

Just hard to remember when we try to do something and the pain rears its ugly head. Maybe I'll try some reverse psychology on it!!! Ha!

bless Yall for being here and sharing your words!!!

Small world! Husband was head of the Vascular Lab in N/W. You said oncology - when? Twenty odd years ago my friend died in Roxburghe House - and for the following few months hubby and I were regulars in the oncology lab as he also had cancer! Wonder if we met...

I was at Ninewells from 1984 and was in oncology and the hospice from about 1986. I retired from there in 2007 and finally retired from the Perth hospice in  2008. I realise we may well have met at some stage and I would probably recognise your husband from my time at Ninewells. There were many people I knew by sight but may not have known their name. It is such a small world.

Heading out to visit a friend who has had PMR for 15 years and if we're not sore laughing I'll eat my hat which, by the way, I'm not wearing!👒👒

1994 was our summer in oncology - Heather Fairlie was still there I think. His doc was Phyllis something - an absolute whitch but it worked!

You just hang in there ... research and learn as much as you can on controling your symtoms .. keep on keeping on and let positive attitude and laughter guide you thru your day .. every time you get down (and you will) bring to mind someone younger sicker and/or worse off than you .. and give thanks that you are still alive and as healty as "you" can be .. I'm lucky also that I don't feel pain the way must people do .. "no brain no pain" is what I say .. so when I feel pain above a 6 on the scale it means something is seriously wrong ..if it is a 10 (childbirth) I'd better be in the hospital .. I'm also lucky that my Cardialogist of almost 20 years knows me well and listens to me .. he is also head of Cardio and well respected at the hospital and any new Specialist I see also listen to him (I just ask them to talk to Stapleton about me and my knowledge of my body) .. Yes sometimes I want to give up but I never do .. so don't you either .. this forum has helped me also .. it has confirmed my belief that the increase in breathing tightness IS COLD DAMP WEATHER RELATED

I met Heather a few years ago in Dundee. She looked just the same. It was Phyllis Windsor or was she Quilty at that time? She is still working! Gosh. This is a test of the memory now.😳😳

Yes - she got married about that time so we knew her as both! I don't think Heather ever looked any different in all the years I knew her. 

Phyllis still working? Where? I'd love to get in contact to tell her how OH is - she told him he'd have less than 6 weeks without chemo and his AFP was 50,000 (thereabouts since it had to be diluted to estimate it) where 1 was normal, 50 was pretty bad and 500 only came with terminal prognoses. He had the lot, 9 cycles of chemo, surgery and finally radiotherapy - she really was a belt and braces and velcro person! But 21 years on he is deaf and a bit daft - but very much with us. I'd like to thank her.

I have a lot of respect for her. She's still at Ninewells... The post code is DD1 9FY / SY. If I remember correctly it's FY. I can give you the phone number. It's imprinted in my memory but if you want to write c/o Ward 32 would get her but you'll know to mark it personal etc.

Decided to check.....it's SY!

David also said it would be nice to contact her. She ought to write a paper about him!

But really - isn't it a small world!

Do you have any contact with the Scottish PMRGCA charity? One of the ladies there was a nurse in Robyn House until GCA arrived on the scene.

I am sure Phyllis would be pleased to hear from you especially when your OH has done so well. It would be great for her to know. I don't have contact with the Scottish PMR GCA charity. I only had contact with Robyn House on a visit there when it was very new although I did have contact with other hospices. I guess there will be people that your husband knows/knew at Ninewells and whom I know/knew. Many have retired and some sadly have died. If you're up this way come and see me or we can meet up somewhere central and we can 'chew the fat'. If that would get rid of mine anyone can have a chew.😳 A friend was telling me about someone she knows who lost all the weight after she came off the steroids and is now back to a size 14. I said I'd settle for that but I passed it on the way up some time ago and can't blame the steroids for that!

Size 14? Where's that? 

I've lost a lot of clothes sizes - but they seem to be making things differently now! I have old clothes that fit that are 10s or 12s - but new and expensive stuff this year that fit is more like an 18. Not impressed...

I know exactly what you mean. I have found the same. I cannot rely on the label whatever the make. Perhaps I should dig out my sewing machine which I can see from here has about a foot of paperwork on top.

Easier to just cut the label out... 

A fairly expensive (by my standards) fashion shop in the village is changing hands so there was a total sell-out before Christmas. I eventually went in - in the hope - and was lucky, a lovely pair of light-ish weight jeans and a really comfy pair of winter trousers for about half price which made them still pricey but OK. But both are size 18 according to their labels. The same as the (also expensive) jeans I'm wearing everyday which I bought at my fattest over 3 years ago - which have had a good 4in taken out of the waist/hips by my tailoress neighbour and are on the generous side now, I have to wear a belt!

This shop was never an option before I assumed - heaven knows where fat Italians buy clothes, everything stops at a UK 14 usually. It is worth paying though - the waist is on my waist, not halfway down my bum.  And they are made in Italy, not some sweatshop.

I like that one.😀 Have a friend who does that. My biggest problem is needing the waist size but the hips are like baggy jodhpurs and practically falling off me. I remember the little Michelin man who sat on the top of their vans. I could do an ad for them especially with my black down filled coat! I was at a funeral today and Phyllis Windsor was mentioned in the thanks. It wasn't even in this area. How's that for a coincidence?