I have Sjorgrens Syndrome, PMR and recently diagnosed with Bronchotrachea Malacia. I would dearly love to know if anyone out there has this disease. I can find no support and GPS don't appear to be interested. Seemingly content with their ignorance.
I take Pred for auto immune disease and have done for years. At present it is 6mg but tends to yo yo depending on how much pain I'm in.
Would love some company on line.
Hallo Smithann welcome to the forum.
I have no personal knowledge of SS, just PMR. Also thought BTM affected babies and children. Obviously not!
When you say you are yoyoing your pred dose.....what do you mean? Trying to reduce, failing and returning to previous dose? Or altering your dose frequently depending how you feel?
Thanks for response. I mean that I sometimes get chest infections which means that Steroid dose will be raised and then I gradually reduce down to 5mg which is about my limit. I did try reducing to zero last summer but it was a disaster.
I don't visit GP or Consultant any more often than really necessary. I find that they are rarely able to apply a sufficiently flexible attitude regarding medication and diagnosis.
Bronchotrachea Malacia is not that uncommon in babies and small children but is rare in adults. I have had it for a long time and it seems to be getting worse. But I've been being treated for COPD for many years. This in spite of all tests for COPD being negative. In the end I decided to go privately for a diagnosis.
This winter I have been so down and fed up with the symptoms that I decided to try and find others who were sufferers also.
I concur with you re ‘avoiding’ Drs! Surgeries are nasty horrid places to pick up infections, and rarely worth the risk for the crazy advice which can be offered!
Sorry I have nothing to offer re SS, although there is a specific forum for that.
Can’t offer anything re BTM either! Much use am I 
except obviously you’ll be more prone to infections due to pred, and that risk is probably doubled for you. Is it the expiration of breath that is problematic? I wonder if a physio could help?
For PMR you’re in the right place. Knowledge and empathy rolled into one. You’ll feel better by comparing notes and having a good whinge if you need to. We all do it now and again. Helps to get it off your chest, so to speak. Plus the bonus of a few laughs along the way.
Many thanks. It's great to share experiences whatever the problem. And I've learned a lot about PMR that I never knew through reading it on here.
Sjorgrens has been a part of my life for so long I just think it'seems a normal part of life now.
See a Consultant once per year who is very lovely but I do wonder why I bother going. Never says anything helpful. But I get a blood test done. And usually a bruised arm afterwards. Hey ho. Not to worry.
I often get some bruising from blood tests, but the bruise post cannula/CT scan a couple of weeks ago was something to behold!
I had a very abashed nurse in A&E the other night - she went to put a cannula in my lovely left arm vein and hit a valve! I had a surprisingly tiny bruise. Nor did the back of my right hand bruise either - I was quite surprised.
I think they used my cephalic vein just above my wrist. Strange choice I thought at the time, but the blood-suckers do like my veins, very prominent, so maybe a chance to practice the cephalic?
I’ve never heard of anyone hitting a valve?? Can they tell? Did it hurt?
No. Nor have I. Don't know whether it would have hurt or not.
I see it used quite a bit. Prominent veins can be a false friend - they have a habit of trying to run away!!!!
I used to be a phlebotomist when I worked in the labs - and it has happened to me! You put the needle in and the valve blocks the lumen of the needle so sometimes blood doesn't flow well or even at all. If they try to carry on it can hurt - it's more a strange sort of feeling though.
The drs surgery generally and via door handles, trollies at the supermarket and pens and doors in the chemists. Three/6 of my least favourite germ places! My dad had COPD and Every time he travelled by plane to my brothers he came back full of cold and then chest infection. If you are doing the 7,6, 5 etc reduction with antibiotics it must be very hard. Do you go up to 12mg pred or stick around single figures when you get infections? I am currently on 10/9mg and mycophenolate for PMR and seem to be getting infections. Latest seems to be gum abcess.
I have learned a lot on the forum and had good laugh and a few tears when you hear of others bad experiences. 🌻
No I'm not bothered about the germs in the surgery or anywhere else. It's the profession generally that try my patience.
I have to say that on the whole, I manage my own Steroid dose. How much etc. I think I know me better than anyone so I try to ensure I have enough to keep me going.
Yes COPD I'm sure is very trying. I've not had it but I think if you've got respiratory disease you are prone to chest infections.
That's when the prednisolone goes up. And it works. But then you reduce again and it's all trial and error.
Hi Smithann. I'm sorry to hear that. I have Ss with sle and am hypothyroid. I havent seen my local gp for over a year now...no point as he doesn't seem to understand or try to help. At one point a few years ago he said that "sometimes it is just better to forget what is wrong and get on with it?" He provides my monthly medication on a repeat...and if I have a problem, or am worried about anything...I pay to go and see a specialist...and they copy him in. Not very helpful at all. I am more or less monitoring myself. I do think that part of the GP job ought to be to monitor people with chronic disease. Just to check in on how they're feeling. It seems thT either no funds or a lack of interest sometimes precludes this. I hope you're feeling ok today. Xx
I completely agree with you. They are very busy and grossly led and underfunded but in my view give an on the whole less than excellent service very often. Shouldn't have to pay to get help and support. We already pay through the NHS. If it's not enough then something needs to give.
Contrary to what many people believe, the contributions we call NI in the UK are not specifically for the NHS, they also include contributions to your pension, unemployment benefit and sick pay. Most NHS costs are paid out of general taxation.
In the rest of Europe we pay about 10 times the level of NI simply for healthcare cover and pension entitlement. The reality is - is you pay peanuts, you can only afford monkeys...
Hello -- I have had PMR for 4+ years now -- presently on 7mg Pred. I also have Sjogrens syndrome-- not as severe as some-- but eyes are the biggest problem. Right now I have either got flu or something very similar. Now on Day 7 of feeling like death. I have not upped my Preds, and am trying to manage with chicken soup and paracetamol. Roll on spring and some sunshine. It would also help if some huge issues that have been affecting my family (and out of our control)- thank you Bracknell Forest Borough Council -- would get resolved. Then I might have a bit of a run of stress free living. Ah me! What would that be like?
As an ex Local Councillor I would always advise contacting your Councillor if you have problems with the Council. Especially at this time of the year with Elections coming up in May.
Thank you for that tip. J.
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Getting dressed to go out.
