I have a real dilemma - infections

Hello Eileen, thank you for answering my inquiry and please know that I value your input highly.  I do take probiotics routinely as I know they are important and helpful so I will continue.  I cannot eat yogurt due to being tested for food allergies and having yogurt, milk, and whey products showing sensitivity.  I love plain yogurt but have been avoiding it since that blood testdone by an naturopath not allopathic doctor.  Not sure that the test is altogether accurate, but thought it best at this time to eliminate the foods that were suspect. Otherwise I would eat it everyday.I do not believe that acyclovir is available without an Rx here in the states.  But my doctor would give me a prescription I am sure, so I can investigate that. 

I am sorry that I did not state in my inquiry that I did use the 'no more that 10%' reduction that you have posted here when I went from 15 to 12.5 mg of prednisone .  I left all of that out hoping to be brief and not too wordy  I should have said that I tried to follow the 10% rule. However, I may have done the reduction too quickly.  The thrush and the now the cold sore outbreaks threw me off a bit since I have not noticed  anyone else here mentioning similar outbreaks. But surely I can't be the only one.

Yes,I understand that if I am not taking enough to get the pain relief benefit, then there is no advantage to taking it. So it seems there is a trade off between pain and/or infections (side effects). You see, I don't think that 15 mg is considered a high dose when it comes to taking prednisone.  So the fact that it affected my immune system enough to allow infections, one after the other, is worrisome to me. As you know there is the other herpes virus that causes shingles - that is what I want to avoid altogether.  Hence my concern about lowered immune function.

At this point I surmise that I should possibly increase my dose in order to alleviate some of the returned pain and reduce inflammation.  I did notice that at 13.5 mg I still had the pain control benefit.  That was my first reduction dosage.  I don't want to assume that I should increase, but that is what others have had to do. That means that I could increase by 1 mg. 

I apologize for not being more specific with details when I posted my question to the board and to all of you.  I am taking your comment about 'whether the susceptibility to other infections is worse than the PMR without pred.' very seriously.  I don't know the answer right now.  I have never had thrush before.  It is not pleasant and caused me to have a total loss of taste, a hoarse voice and cough (must have spread to throat my doctor said) and complete loss of appetite.  Be that as it may, I don't want to have it linger or return after the nystatin treatment.  

Getting pain relief from the pred. probably also means that the inflammation is tamped down.  Right?  And isn't that also the goal of taking enough prednisone?  Some have gone on to develop GCA I have read, and perhaps that is from not enough inflammation control?  Thank you for any other comments you have for me. Hoping this post has not been too long, but felt I needed to give more details. 

 Regards from Arizona, Mary Jane

     

  

 

 

I won't comment much on naturopathic food allergy testing except to say I am of the opinion they prey on fears and have no scientific basis. By omitting all dairy you are risking nutritional deficiencies.

Herpes simplex (cold sores) and herpes zoster (shingles) are not the same virus, they are just members of the same biological family. You can only develop shingles if you have already had chicken pox at some earlier point, The virus remains in the body, dormant in nerve endings, and may reactivate at some point and lead to shingles. It is already there and it isn't comething you can catch. There is little or no evidence that being on pred makes you any more liable to develop shingles. 

One or two people have developed thrush but it isn't something that has been discussed, maybe GPs have mentioned it and people are less bothered, I don't know to be honest. I'm sure a pharmacy can advise on appropriate mouthwashes to help. I had a mild attack of thrush in the early days of PMR - and it was nothing to do with pred.

I see acyclovir may be a problem in the USA - one plus for Europe, it is OTC and cheap!

Using the slow reduction to go from 15 to 12.5 should take a couple of months at least - and a stop at each stage is a good idea to make sure your symptoms are still reasonably controlled. It all depends on the activity of the underlying autoimmune disorder, if it is active you will need more pred.

I don't know whether not being on enough pred makes you more likely to develop GCA. The PMR doses are not enough to control GCA - so I don't see how they would prevent GCA either. The opinions there are mixed. If you have PMR and then later are diagnosed with GCA it is more likely that the PMR was the presenting symptom of GCA which was already there. It is very difficult to decide which is first - definitely a chicken and egg situation.

I'm sorry - it all sounds very wooly but PMR and GCA are not exact sciences, medicine is not an exact science.  Each of us experiences them differently, our response to pred is different to some extent. I have not been bothered greatly by infections in the last 10 years - instead I have developed some more physical problems including an achilles problem due to the effect of medrol plus a particular antibiotic and atrial fibrillation which is almost certainly due to the autoimmune part of PMR. The a/f is there, it isn't going to go away, I have to manage it in the same way I manage PMR.

Maybe others can comment better on the thrush problem?

I did not take enough time to taper down slowly. I thought that the UK protocol allowed me to go directly to 12.5, but I thought I was being more cautious, so I went by 10% reduction, but too fast anyway.  I was trying to combine two different protocols at the same time. 

Thank you for the PMR/GCA connection information.  I did think that not treating PMR properly would lead to GCA.  I now understand that the opinions are mixed regarding that. I needed to know that.

It seems that you have had a long journey with PMR...you must have a very brave spirit - fiesty if you will.

I have learned other important things from most of the replies to my post.  At this point I want to learn all I can because my doctors do not know what your doctors and most of you know - I pretty much am on my own.  Your answers are filling in the blanks, so I thank everyone.

It very much depends on the person - I am not alone in having had FEWER infections while on pred. It is probably worse at the higher doses and it is up to us to be careful about our actions, avoiding crowded places which is by far and away the best protection against flu - especially in a year where the most common flu virus isn't covered by the flu jab! I had proper genuine influenza, not the severe cold most people describe as flu, long before I went onto pred. I did have PMR though.

In developing PMR our immune system is already in a mess - maybe that has as much to do with catching things as the pred?

Yes, I agree.  I have been taking prednisone since last March started at 15 then briefly went to 20 & am now at 7.5 & really have not been ill at all. The steriods have done wonders for my other arthritic aches & pains.  I wonder if sometimes we attribute too many things to PMR & prednisone.

Barbara,  thank you for sharing that with me.  I truly haven't seen the topic of infections while on prednisone mentioned before in the posts I have read.  It has probably been mentioned, but as there are a multitude of informational questions and answers here, I missed that info. 

Again,  I appreicate you input and will put your experience into my information-gathering  basket.  So much to learn as a newbie on pred. and so many new side effects (from the prednisone?).  ) 

Oh I think so Mary, yes! After 5 years each of PMR without and with pred I am very aware that things happen without pred too. It is very easy to blame pred - the human brain forgets things very quickly. I had a couple of years after my second child was born when I had mouth ulcer after mouth ulcer - I was totally run down. The autoimmune part of PMR can cause all sorts of things, and the pred doesn't make any difference to that. It just manages the inflammation, pain and stiffness. The fatigue and other parts of the autoimmune disorder remain.

I agree also. As I said I suffer terribly from cold sores, and I always have. At least 1 a month, again that's the frequency I always suffered from them. Colds, if anyone at work was going to catch a cold it would be me, again always real colds from hell and always lasted a long time. I would say that I've always been susceptible to infections and whilst on preds the frequency has not been  noticeably more frequent. Christina 

I have to admit pred & I had a rought first mouth. (H/T to Eileen for advise during that first month.)  I think I had every single side effect that was possible or thought so at the time.  At any rate, and I mean this is the best way, I think with auto immune disorders it is best to keep things as simple as possible & take as few meds as necessary.  Often the more we take the more our real symptoms are disguised.

Eileen, Yes, my immune system was a in a mess, for a long time.  But I seldom get colds, and never had thrush despite taking several different types of antibiotics over the years.  I always took yogurt and probiotics with the antibiotic treatment or after it.   That is why is I am linking these new infections to the pred. but who knows?   I have not been posting much these last few weeks because I didn't want to be a bother (time to let other people get the needed attention of all the good information).  But I am still not settled on exactly what I should be doing or not doing.  Still learning.  My doctors are really no help.  The rhuemy told me to go directly to 12.5 and to get off the prednisone as soon as possible.  Isn't that laughable?  I go back on the 24th - I need to ask her so what do I do for the pain and inflammation if she wants me off the pred. She presented no alternatives on my first visit. So , I feel I am on my own and would rather hear what everyone here has to say, since you all have experience with the disease (walk a mile in my shoes counts!)  Thank you for your input and help.  I value it like a lifeline. 

 

If your rheumy insists on getting off pred as soon as possible I can only suggest you find a different doctor. Or discuss with your PCP whether they are happy to monitor you while reducing more slowly. We all want to be of pred asap - it doesn't work that way though.

Yes, it may be the pred making you more likely to develop infections - but it could equally be the underlying autoimmune disorder that causes the PMR symptoms. Whichever it is, you will have to find the way that manages them best for you. I know it sounds pathetic - but we've all had that journey: trial and error! The trial and error of slow reductions we can advise on from experience, the other bits probably need to be a bit more tailormade!

Yes, I was quite lucky in that I didn't get handed the suitcase full of medications to start with so it was easier to work out what was maybe pred and what wasn't. And I definitely knew what was the PMR! The added extras didn't come until very late in the journey and - believe me - that was horrendous. I do know what it is like to have to adjust to a massive change in how you feel with drugs but was perhaps lucky in that pred was actually fairly easy.

I never want to go back to the beginning of either episode - even if it means sticking on a low dose of pred for life!

That is too bad.  I can not imagine a rheumatologist saying such a thing.  From all I have learned from this site & from my own gp & rhuemy this just sounds like bad advise.

It seems like it you don't get the right info regarding pred & PMR in the first place & wind up with more flares the journey becomes increasing difficult.  No, I would stay on a small dose of pred forever rather than have another flare & the depression & fatigue that went along with it.

I am sorry you have come down with the flu Barbara.  This is flu season and even people who are not on pred. do catch it.  I am under the impression that pred. weakens our immune system and therefore causes us to be more susceptible to infections of all types. I am willing to learn more about that reality.  I hope you soon feel better again. Regards, Mary Jane

Eileen, I don't think that I fully realized that the autoimmune part of PMR can cause all sort of things.  I thought it basically caused pain and stiffness .  I did remember that fatigue is part of an autoimmune disorder, but not sure what other parts or symptoms of the autimmune disorder are. So I needed that cleared up too.