i am sick with a cold, maybe bronchitis, totally miserable. Here is my question: should I go up on the pred? Currently I'm on the back half of going from 6.5 to 6, using the dsns method. I ache all over, I'm coughing, I'm weak, etc. hip and groin stiffness is pronounced, probably from sitting and laying so much rather than moving around.
if you think I should increase the pred, for how much and for how long? I won't go to urgent care as they just tell you to take over the counter meds for the cold and cough and wait it out...3 weeks is the norm, they say. Thanks!
I keep seeing posts from people controlling their own dose and am puzzled it's something I never thought of doing. Should I have? Would the GP have expected me to? What is the dsn method?
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...
Twopies - sorry to hear that you are under the weather.
I just got over having similar symptoms as you describe with a definitive diagnosis of bronchitis and tracheitis.
I did not increase my prednisone dosage during this episode. It took several weeks for the relentless cough and other generalized symptoms to resolve. Treat it symptomatically, rest, drink plenty of fluids and eventually it should resolve. Best wishes for a speedy recovery.
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'd put all the symptoms down to the cold - and be patient. If you feel any PMR symptoms niggling I'd add a mg or so but really no more and I certainly wouldn't finish off the current reduction, maybe even go back to the 6.5mg. It isn't really good to just wander up and down the doses just for a cold without having discussed it with your doctor first. Except obviously for a flare starting during a reduction.
I don't normally add anything for a cold. If it gets worse - since you mention bronchitis - you MAY need the doctor anyway for antibiotics. Don't let it get too bad - although they'll probably say "Viral" so abx are no use.
If you do feel a flare starting it's a bit difficult to decide what to add in the way of dose - if it were for more than a week you'd really have to consider a stepped drop so you don't want to go too far but it also depends on how long the lurgy lasts.
You ARE at a pred dose where your adrenal glands MAY have to up their production - so watch out for that.
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.
As pred reduces your immune response I think it would be counterproductive to increase your dose for the reasons you give. Do as advised in this thread and wait and see if your cold/flu symptoms abate as you recover.
As for controlling dosage I have to say that one of the first things my doctor told me was that I would have a great deal of say in how the tapering went In other words, she was putting control into my hands. I do not think I've abused that trust. I would never increase pred dose except to deal with increasing PMR symptoms. If I have a cold (and darn it I never used to get colds, but now I'm in the middle of my second one in as many months) I treat it as I would any cold if I didn't have PMR - fluids, rest, stay warm, take whatever otc med you've found worked in the past.
Get well soon!
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 !
Thank you. I will tough it out. My groins and thighs are stiff, but I suspect that’s from being so sedentary.
My husband and his friends had bronchitis in early December; he (hubs) went to urgent care 3 times; they recommended over the counter stuff, no antibiotics. He is fine now...took over 3 weeks. I’ll think long and hard then before going back up to 6 1/2 mg. But will if any more pmr symptoms appear.
Thank you so much. I’m just mad all over...about the cold.
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.
I mean lung issues- no royalty here.
I do increase pred when I notice increase in PMR like muscle pain, and not for any other reason. Your cold may give you similar feel, but not exactly the same. Pred probably won't help. If you decide to experiment and increase the dose anyway, as long as you keep it shorter then week or so, you can go back to original dose directly ( no tapper needed).