Pmr and cold, maybe bronchitis

I’m not savvy enough with this forum to copy the link but if you go to the very first posts at the beginning of this forum, you will see the post for the dsns method.

Many pmr patients do vary their pred doses depending on their symptoms, sometimes to relieve their symptoms and  to avoid a flare.  

Some docs agree that it’s ok to increase your dose—mine does. There are a lot of experienced people on this forum who give very helpful advice. I got pmr in August 2016, started on pred September 2016. Currently I’m on 6 1/2 to 6 mg., having to increase more than once to keep my symptoms at bay...

Here's the link:

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

Really we shouldn't adjust dose - and those of us who do have had PMR a long time and know the signs of us needing a bit more. It used to be said that the pred dose should be raised if you had an infection or are under other stress - emotional, injury or illness. Doctors disagree - nothing new there then! Nowadays when it takes so long to get to see a GP a lot of people do adjust their dose if they think they are developing a flare - for obvious reasons. I doubt your GP would expect you to and some would get seriously ticked off if you told them. Then it depends how strictly they control your pred supply - you have to have enough available to do it.

Thanks Eileen. My doctor did control the number of repeat prescriptions I got and the he knocked me off it he removed it from my repeats. So unless he agrees that I should be back on it I've no chance of getting anymore. However I ran off the Bristol paper and did a letter pointing out the problems if you're removed from steroid too quickly and also asked to be referred back to the rheumatologist.  As my children have also been in contact with him because they're so worried, I copied them into it, and my husband signed it as well and we both emailed it and posted it to him. I'm due to see him on Thursday so hopefully will get a good response though I've no idea how long I'll be waiting for an appointment with rheumatologist. Incidentally my daughter in law has another auto-immune condition and she goes regularly to see her specialist but it's in a surgery at the hospital and each consultant concerned wit her case is there so they can consult each other and decided if the steroid goes up, down or is even given as infusion and my daughter the nurse says her hospital does the same. How advanced is that ! 

Where is she? Sounds a good model!

I control my own dose with the blessing of my rheumy and my GP. Have only seen the rheumy twice in the last 2 years as he wanted to drop me down far too fast.   I just drop half mg every month which is very slow, but works for me and I have the prescription of pred on repeat.  I sometimes stay on it for 5 or 6 weeks depending on what is going on in my life and I have my bloods and BP tested every 6 weeks.  They are always normal. My GP is really nice and we get on very well. I have worked out a schedule for 2018 and hope to drop from 8.5 to 4.5 over the next year.  If I can't do it through being very steroid sensitive, then no worries.  I have a friend who tries to drop too fast and she is always going up and down which is taking much longer.

Rats. Rats rats rats.  But thanks.

This is the 3rd New Year’s Eve in a row I’ve been sick with this stuff...😥

Second year in a row for me. Last year coincided with onset of this vile didease

Vile, yep.  And you don't increase the pred either, huh?  

I have king issues but I believe my taking Vit D ~5,000iu has kept me from any colds for the last 2 years. I also stay away from crowds, do not shake hands and stay away from the sick.

Some Vit D research points to similar experiences.

No, haven't increased pred (am still on 9mg) and am taking more  paracetamol than I'd like. Plus array of mins and vits, eating the rainbow and currently resting a lot as there's little else I can do!

Bizarrely this is the first cough cold I've had since Pmr diagnosis a year ago. Prior to that I was getting every cough or cold going.

not sure if this is because I was also diagnosed with hypothyroidism and severe vit d deficiency, and so am on vit plus all other vits and mins 

I mean lung issues- no royalty here.

I'm also on VITd 500 the GP prescribed it when I went on prednis and I keep well away from anyone with an obvious virus or infection even though I'm now off the steroid, just in case. However I can't stay away from my partner who  seems to get a lot of colds.

Porgi, Vit D3 500 or 5,000 iu? Big difference. 500 was the old dose to prevent rickets; 5,000 is more in line with current research.