I have a real dilemma - infections

Hello Whisper,  Thank you for the thought.  It is a valid question and I have considered what else may be adding to the problem.  I am on as much of an anti inflammatory diet that I can manage (now have few food options due to some food allergies) plus I do not eat wheat, dairy or sugars.  I know that everyone here is suffering too and I wish none of were.  I appreciate you answering me.  I am open to do what I can to get better - all comments are welcome.  Mary Jane

I had a nasty outbreak of thrush at the beginning of it all. Was recommended olive leaf extract - it's a bit expensive but if you can get hold of it (from good natural health stores) it works wonders. Thrush completely gone within a few days

Christina,  that is very interesting that you said not to reduce when you have an infection and that our doctor told you that.  I thought that the infection was caused by the lowered immune system that the pred. creates.  What do I know?  And I don't have a good rheumy- I have been to two and they both seem to think that because my Sed rate and CRP are normal I must be imagining this pain or that I have something else.  But so far all other tests are in normal range and so I question other diagnoses at this point becasue I have all the classic areas of pain that describe PMR to a Tee. And I am still awaiting the results of more tests that a hematologist ordered.  I understand that it is hard to diagnose these types of diseases and negative tests do not always mean you don't have a certain disease.  Quite the puzzle. 

Your PMR protocol is what I read on a UK paper that was suggested to me here by Eileen.  I even took a copy of it to both rhuemys and they just said 'how interesing' but didn't take the copy with them when they left. 

Perhaps I didn't stay on the 15 mg long enough - only 4 weeks - but as I said, the thrush, etc. made me think it was too much for my system .  My thrush is getting cleared with the nystatin, but my pain is back. 

I mentioned to Eileen just a minute ago, that at 13.5 mg I was still mostly pain free (I have never achieved total pain free status).  So I wonder if just bumping it up to 13.5 is enough because I am still gun shy of the 15 mg. and I hope I don't sound stupid for being gunshy. 

 I know you don't have the answer and I don't expect anyone to know , just for your opinion - everyone is so different.  I do think that many folks who have posted here have had to experiment and try different doses from time to time, so since I am at the beginning I do expect I will have to do the same.

I like your list of vitamins and I do take some vitamine c, magnesium at night, calcium,  vit D, but no iron or complex. i don't want to start too many new things. Thanks for sharing your list. 

But now I know that others have had infectiions. And I too have always dealt with cold sores, but I hadn't had one in at least a year.  I empathize with you and that you get them so often - they are nasty all by themselves.

 I really wish I understood why we should not lower the prednisone during an infecton?  It makes no sense to me but then I wouldn't expect it to since I just learned about PMR about 3 months ago.

Okay, I just want to add this bit of info to my reply here.  Beside the infections occuring when I was on 15 mg I also experienced terrible forgetfulness (almost no short term memory),  strange spacy 'out of this normal world' feelings, and extreme very exhausted.  These are probably all possible side effects of pred. as I have read about them;  but the oral thrush was the last straw. 

 Thank you for listening.  I am still whining aren't I? I didn't mean to vent my troubles when I come to this site, I really want to gather knowledge, but I guess that at times it means I have to state my situation and what I am experiencing to get the right info.   Thanks for your added information.   Mary Jane

 

 

I will definately check out olive leaf extract.  I have heard of it, but do not know much about it.  God to hear it helped with thrush.  Thanks for sharing.  Mary Jane

Good morning Mary jane, it is good to try and understand all there is possible to know about our condition. When you read some of the clinical recommendations handed out to some of us not only by drs but by so called specialists we need to have information in our PMR box that is at the front of our brains to question things suggested by clinicians when what they recommend simply sounds wrong.

normally our bodies make its own corsisteriods (spelt wrong), it is made in our adrenal glands and more or less of the cortesteriods are made in responce to the amount of stress is placed on our bodies at any one time. When our immune system went bonkers by responding to a illness that didn't really exist our adrenal glands couldn't respond correctly to the amount of stress our bodies were being placed under. Currently, because we are all on a fake cortesteriod, and it's a higher dose than our bodies ordinarily make, our adrenal glands have temporarily shut down and are not releasing any cortesteriods at all, unless you are on a dose of say 7.5 which is the amount our adrenal glands create daily under normal circumstances, then they will hopefully start back up again and begin producing a bit more here and there as and when our body needs it. The amounts of prednisone, which is the fake cortisteriods, that we take should directly correspond the amount our bodies need to control the amount of inflamation our bodies currently have. And that's why we reduce the medication because this condition will eventually burn itself out in most cases. So it's a balancing act to reduce the medication inline with how the condition is burning itself out. The problem lies in the fact that the condition affects us all individually and so in one person it will burn out within say 2 years whilst in another person it may burn out in say 5 years. That's why drs like to do blood tests to check our level of inflamation, ESR/CRP levels as if they are within normal range it indicates that whatever inflamation there is is currently under control so let's try another medication reduction. Of course this doesn't always work as not all sufferers display raised ESR/CRP levels anyway, and of course the bloods don't reveal that if you lower the preds, the new lowered amount may not be enough to control the current level of inflamation and what happens there is you get a flare up, whereby, the preds are not sufficiently high enough to cover the level of inflamation. So in that case you have to up the dose again to the level before reduction and stay on that dose abit longer whist the dose not only controls the flare but until the condition has burnt out abit more so that we can try reduction again. I had a flare up in October last, had to go back up to 10 and I've only just 3 weeks back started to reduce again by only .5, I'll stay on that level of medication for about 6 weeks then attempt to reduce to 9. 

So that's why as patients we should not be forced to reduce quickly and in great leaps because it only puts you back a level and as in my case I am exactly at the same position as I was in October last year.

so, the reason why you should never reduce if you have any infection is because currently the cortesteriods that we are taking is only enough To cover the level of inflamation we currently have. Our bodies cannot produce more, unless you're taking about 7.5 and at that level your adrenal glands can produce a little bit more in responce to additional stress placed on the body. But above that level our cortesteriod level is static. So to attempt to reduce with an infection and with the level of cortesteriods only just being enough to cover the current level of inflamation you will surely get a flare. Also, as in my case and others too, when I am doing very nicely on a level of preds and my inflamation is being kept very well under control, if I do say begin to develop a cold or I know I'm getting a cold sore, a few of the PMR symtoms do sometimes return albeit only very, very mildly. That's your body saying, hey, I've got a lot to cope with here and I'm almost at breaking point. Always listen to your body!!

this forgetfulness etc you experienced at 15 mgs is what we call brain fog, and the exhaustion/fatigue is quite normal. Heavens our bodies currently are coping with one hell of a lot. But as the condition burns out and our medication doses get lower, we do get back slowly yo being the real us. None of us want yo be on steriods, but then of course none of us want this condition either but we have it and currently the only drug that can help us I'd prednisone, so we have to calm down and roll with the punches, so to speak. But what is important is that you have to forget about all the possible bad side effects of prednisone, and I say that because not all of us will develop them, and just remember what good it's doing. I was a cripple and in so much pain prior to prednisone and I have a good quality of life now, and now is all that matters not 10 years down the line. 

Mary Jane, for you it's about getting the current symptoms back under control, after all what's the point of taking steriods with all their possible side effects if you're not enjoying their benefits which is to be almost normal again. It's a no brainer for me. And perhaps in you case t reduce by 1 mg per month/6 weeks until you get to 10 then embark on the very, very slow, small taper there after. May I ask your age?

Eileen, you know I'm only good for baking cup cakes and knitting fluffy toys, please correct any of this if it's incorrect.

all the best, regards christina 

You shouldn't reduce the pred while you have an active infection because the infection is putting stress on your body and the one thing PMR thrives on is stress so it is likely to flare immediately when you add even more stress by asking your body to adjust to the new dose as well. The same applies to injuries or any other form of stress in the family, work and so on. 

Yes, those are some of the 80+ listed side effects of pred - but no one gets them all! You have to accept this is what saves you the pain of PMR and it wil pass as the dose goes down. You have to be patient - and do your part by resting. It isn't just that pred lowers your resistance to infection - stress of any sort will also cause you to get infection after infection. Being ill is stressful and worrying about every little thing just adds to that stress. It is winter - even where you are since these things are relative! We all tend to pick up more infections in winter so if we are stressed we are likely to have more. Our immune system in general is in a bit of a mess because of the autoimmune disorder and how that pans out varies from person to person.

But basically, taking less pred than our body is used to puts stress on your body and it doesn't know which way to turn. We have to manage PMR and its add-ons by actively trying to maintain a status quo. Yes we need to try to reduce our pred dose to find the lowest dose that controls the PMR symptoms - but reducing should kept for periods of calm.

lodger always says: clear the decks, clear all appointments from your diary that you can and don't commit to doing things that you can't cancel if need be. THEN you can think about starting a reduction, but even then it should be SLOWLY. She also has a reduction scheme, a bit faster than mine but still much slower than most rheumies use. If you want to look at hers, send her a pm.

It's basically all fine - the specialist endocrinologist might pick holes but they tend to pick holes in all non-endocrinology-specialist ideas about thei field ;-) Didn't see a single cupcake though...

The only thing I'd say is that the very very slow tapers are also a good idea from the start if you are sensitive to the dose drop. It is faster in the end to use the taper from the start and drop 1mg a month using the taper continuously than to try to drop 1mg and fail a couple of times and have to go back and start over again. I used mine starting from 15mg