Persistent virus infection - PMR to blame?

Hi Judit and welcome - now why you are apologising for your English I can't imagine! I assume it is your 3rd language - and if I could write what you have just written in my second language with as few mistakes I'd be rejoicing! I've also seen a lot worse from so-called native speakers (I do correct English professionally, BTW, so I see lots). And I hope we aren't racist - we even let people from the US and Australia comment so we can't be :lol: :roll: :wink: ! Just don't ask us to reply if you post in Hungarian!

Is it a virus that is causing your sore throat? Before I was diagnosed with PMR I had had a sore throat and tickly cough with very sticky phlegm around my vocal cords for several years along with the more classical PMR symptoms of stiffness and joint pain. It is also mentioned in some text books as being a symptom. The sore throat and phlegm was bad enough to stop me singing in the choir I belonged to - quite a wrench after nearly 50 years of singing (I started very young). I can't sing at all now.

It improved a lot after starting to take prednisolone but has returned to some extent as I have reduced the dose. Other people have mentioned that symptoms of PMR that they haven't had before have surfaced at various stages, either during reductions or if they have had PMR, got off steroids and been in remission for a few years and then it has come back. Is this maybe a possibility?

Traditionally, the way to tell if an infection was viral or bacterial in origin was said to be that bacterial infections came with yellowish-green, gunky exudate (phlegm) whereas viral ones generally didn't. So if you had that sort of horrid stuff they would give you antibiotics. More recently, unless there is any evidence of infected areas on your throat or tonsils (for example) they tend to put it down to a virus and don't prescribe antibiotics as they will only kill bacteria - and even then only if it is the correct antibiotic. If there is very bad phlegm that looks infected the doctor should take a sample and send it to the lab for culture to see if it will grow bacterial colonies and, if so, what antibiotic will kill it. It has now been realised that even if you are coughing up lots of green sputum, it is still probably viral in origin and should improve in a week or so even without any treatment other than TLC (tender loving care). Giving antibiotics to everyone with a bad cold has contributed to the problems we now have with these \"super bugs\" that are resistant to most antibiotics - and if they get worse, we will be in a really bad situation with nothing to kill them. If you have had antibiotics in the past when you didn't need them it also means they might be less effective in a case when you do need them.

My GP in the UK did take a swab from my throat and nothing was found, I've had antibiotics for other things since and it made no difference. But the sticky mucus and tickly cough are still there now I am on a lower dose of pred. We did think it might be from my sinuses as I used to have trouble with them but maybe not. At the dose of pred you are on your immune system shouldn't be too badly affected - I actually have fewer infections now than before steroids! Were your symptoms better at a slightly higher dose of pred? If so, go up a bit again - if it is a bit of inflammation from the PMR that's causing it it might help. You'll have seen all the recent discussions about how difficult it can be to get down below 3 to 5 mg a day and why.

It didn't occur to the doctor that the upset stomach might have been something you ate and coincidence? And the dizziness could be an inner-ear problem - such as Meniere's syndrome? I think I might go and ask another doctor for an opinion! But the throat/cough thing could well be the PMR raising its head again.

I hope your escape to Spain is providing you with the lack of cold you want - I am in Italy all winter, but not for warmth, I'm here for the skiing! Just need

Eileen, I've just read your reply here and bells are ringing loud and clear.

I have been plagued with the croaks for years now. Same as you, sticky phelgm around my voice box. It has tended to come and go over the years but just now is as bad as it's ever been. Like you I had to give up singing (the family were grateful) and very often I have no voice at all until I'm able to clear it a little.

I have complained about it endlessly.......was told a) it was the steroid inhalers I was using (I'm asthmatic) and b) it was the oral steroids causing the problem. In either case the unspoken comment was that there was nothing they could do and just to put up with it.

So how come it is worse now when I am down to one inhaler instead of three? If there is one thing coming here to live at the seaside has done for me it's to help considerably with the respiratory problems. Add to that the Pred dose being only 3.5 now ........something isn't quite right it wouild seem.

I started a slow reduction to 3mg on Wednesday, but I'm now wondering if perhaps I should delay it to the new year. Given that so many find problems at this point in the reduction.............I don't want another winter like the last one, really I don't - and that patience is a virtue is something that Pred has taught me.

The only thing that I find helpful is Sterimar, the saline nasal douche. It does seem to help things a little when it is really bad; at the point where I am totally clogged up it does affect my sinuses and my ears, but I know there is no infection there.

Are we compiling the PMR handbook between all of us? In all these years it never occurred to me that it might be the PMR itself!

Before I go, I want to say Hi to Judit and my compliments all round, if I could speak one other language as well as you speak and write English I would be very proud of myself!

Regards

Nefret

Hi Eileen,

and thank you so much for taking your time on a Sunday sending me your thoughts and advices about what to do. I have always enjoyed reading your posts over the past period, you seem to have huge educational experience in this mysterious disease called PMR.

I didn't mention in my presentation that I don't have yellowish or green phlegm at all, the little I have is transparent/white. And the throat is also OK, not sore, it's mainly a so called reflex I have making me \"try\" to cough, but it's not much either. Maybe that is the reason the doctor says it's not bacterial and he doesn't want to prescribe antibiotics. The

When this virus thing began end October, I was on 3,75 since a month or so and in November started reducing to 3,1 very slowly, I have still a week left before I take 3,1 every day. This is the same regime as I used to go from 4,4 to 3,75 some months before that. These careful reductions seem to work for me, the ESR is fine and I don't have the pain back. So that's why I didn't think about the possibility that the low dosage could be the cause of this virus problem I have had for such a long time.

You mention that dizziness could be the Meniere's syndrome, and the pills I got from the doctor is just for those who suffer from that illness. But \"my\" doctor described it in a much lower dose to me, probably because it's not Meniere I suffer from. I have just googled on that disease, and the symptoms don't reallly correspond mines: I have no problems with the ears, not that I can notice, anyway. So this is my biggest concern just now, to find out where this dizziness come from and what to do about it...

I am very glad I joined this wonderful site at last, it's good to know to have people around who know a lot about PMR and other different symptoms connected to it, nice to feel sympathy and understanding.

Yes, you can call it lack of cold here in Spain, just now it's cloudy but it will be 19-22 degrees during the coming week - quite OK with me, I don't like snow, nor minus degrees...

Thanks again for your kind reply,

have a nice day and keep enjoying skiing!

Best regards from the East coast of Spain,

Judit :winkeye:

Don't understand why my name can't be shown anymore, it says \"guest\".

If I put in \"Judit\", the post can't be sent, saying \"this name is already occupied\" or something like that...

Eileen and Nefret, thank you very much for your compliment for my English, very kind of you! I try my best!

/ Judit

Judit - have you got logged out even though you ticked the \"log me in automatically box\"? This has happened to a few people recently and they find it quite infuriating. There is a row of tick boxes at the top above the \"reply to this experience about PMR\" - one is log in/log out. If that doesn't work you can bring it to the attention of the moderators - but I can't remember how you do that other than putting a complaint in as a post, there is a proper way!

I didn't make it clear - my plegm is also clear or white most of the time and there is very little of it. Occasionally, however, it becomes yellow or even green if I have a cold which is what sent me to the doctor when he took a swab. My throat only becomes sore if I have a cold or if I am in a situation where I have to talk a lot (some of my friends would say that's always :oops: :roll: :lol: ) and singing did it whilst I was still singing. But the plegm is always there and is worse sometimes than others - it can sometimes be really difficult to get rid off to be able to talk properly at all as Nefret says. Orange juice and some wines will really \"catch\" at the back of my throat and make me choke and start the cough off, sometimes I just start coughing for no reason.

Did I get the impression that your \"extra\" symptoms coincided with the journey down from the north in the autumn? Two things occur to me - either you overdid it and the PMR has flared a little bit or the change in climate may be having an effect. At the moment the only thing that stops my throat and nose feeling really quite \"bunged up\" at night (to use a slang English expression) is to have the door to the balcony open - which my husband is not keen on at -10C or worse overnight but having the electric roller blinds down does make it bearable! I cannot sleep in a warm room at all because of it. BTW - I only suggested Meniere's as an example - there are several things that can cause dizziness like that.

Nefret - you can tell them that someone else with PMR has the identical effect and that I have NEVER had an inhaler so it isn't due to that. Medics - why can't they just say \"I don't know\" - I'd have so much more respect for them :roll: .

No skiing this weekend - I'm too old to ski without seeing where my feet are going! Snow all week, fog yesterday and diffuse light that makes eveything look flat today - plus the world and his wife up there, it's Sunday! Next week - more snow it seems! However - better than not enough, the sun will come out eventually. I have all season, until the week after Easter :lol: And Judit - I don't know what Spanish TV is like but Italian TV is awful (you can see Berlusconi's influence). There is a limit to the amount of sport I can watch (only do winter sport) on German TV and the weather is not nice!

Enjoy whatever climate you're in this week everyone,

EileenH

Hi Judit - a persistant cough was the first symptom I had of PMR (although I didn't know it at the time!). A completely non PMR question for you Judit. Where do you stay in Spain 8) ? I have a house near Alicante and there are lots of people from Sweden staying in campsites around our way. Just curious. Hope you are enjoying warmer weather than us and welcome to this site. Its brilliant.

Lizzie Ellen

Judit - I'm back again! I'm not mad - I promise - but I don't like reading novels and that sort of thing and actually enjoy doing library research and reading medical textbooks to pass the time! If it helps understand me I'll tell you that I, my husband and both our daughters and their partners have been/are currently involved in the healthcare field.

One of this afternoon's references I found is a book called \"Vasculitis\" by Ball and Bridges and chapter 24 is about GCA and PMR. The other main one is \"Diagnostic dilemmas in PMR\" by Brookes and McGee. In both there is mention of the upper respiratory tract symptoms. Another comment referring to GCA is that there may be symptoms involving the ear in about 50% of cases - pain, poor hearing and vertigo amongst others.

Vasculitis can affect almost any blood vessel in the body and the symptoms you experience will depend which vessels are affected. Most of the vasculitis's have a doctor's name given to them - the doctor who discovered or described them first. However, some doctors believe that they are part of a continuum - i.e. they run from one end of a spectrum to the other, so in some cases the symptoms may overlap and this is where the diagnostic dilemma may turn up. Not everyone presents the same with almost any disease and it is confusing for all involved - especially non-specialists, but even the specialists don't always get it right, they are human after all.

On the American Autoimmune Related Diseases Association website there is a section describing some of the vasculitis's including PMR and under the PMR bit it says that all patients with PMR should be warned to report any new symptoms that might suggest the development of GCA - GCA and PMR are very closely associated and about 15% of patients with PMR will show signs of it at some time. The symptoms of GCA do not necessarily develop suddenly, they may not include visual signs (double vision, loss of vision, blurring) but, as I said earlier, one is vertigo and other ear problems. I don't want to scare you, but I do feel that you should go back to the doctor - or to another one - give him these references if he is interested in seeing the originals. The fact you are taking steroids doesn't mean you can't develop GCA, it needs much higher doses than you are on at present to treat it. It's a shot in the dark to some extent - but we have said before, it is better to go once too often to the doctor than to lose your sight which is a risk with GCA. GCA is a medical emergency and should be treated as such. Of course - I realise tomorrow is a holiday in Spain and to be honest, as you've had it for months another day probably won't make much difference! It is a different blood vessel that is involved here so your sight shouldn't be at risk anyway. But vertigo is not nice and it's something you don't want to have for a long time and this is something that does need to be considered.

With the book reference you can't read the entire chapter free online - and the book costs about 300 dollars! But the important bits are there and it should be in a medical library. The other reference, all of it can be read. But they do show how both the things here - the respiratory tract symptoms and the balance/ear thing (it's your inner ear that does balance) are relevant to PMR. To be honest, I'm beginning to wonder how, when I don't have access to a medical library, I can google a few words and get to original medical texts that tell me more about PMR than any doctor I have met yet in my PMR journey has been able or willing to tell me!

Right - must be glass of wine time, and it's nearly \"watch the skiing on Eurosport\" time (it's in the US and Canada this week),

Good luck with the next steps,

EileenH

Hello Judit and welcome to our very active forum which I hope you will find helpful and even, at times, fun! And, wow, I'm impressed with your command of our language!

With regard to the dizziness, I assume that the Dr did check your blood pressure as such dizziness or light-headedness can be a symptom of high blood pressure.

For the \"reflex\" feeling in your throat, have your tried inhaling steam, perhaps with some menthol in the water? I have a problem with my sinuses which causes phlegm to get stuck between the nose and the throat area and I do get relief and clearance from inhaling.

You ask how the Dr knows whether you are suffering from a viral or bacterial infection. I find that the Drs are very keen to put most things down to a viral infection without bothering to take swabs or other tests for confirmation. I had such an experience about 12 years ago when I got very ill with dreadful head pain, dislike of bright lights and numerous other symptoms. A visiting Dr did carry out a load of urgent blood and urine tests and after discussing the symptoms with another Dr at the practice decided that I had something called \"Temporal Arteritis\"(!!!) and prescribed 8 steroid tablets daily. I baulked at taking any pills at all let alone 8 straight off and arranged a private consutation by which time the incredible head pain was now allowing me to have a few hours sleep without longing for the next timed dose of paracetamol to arrive. When I saw the consultant he took further blood tests and immediately diagnosed that I had been suffering from either viral or bacterial meningitis. If it was bacterial, he put it down to a recent visit to the dental hygienist following which I got a very sore throat which the GP diagnosed as a virus. Apparently, if the GP had treated the throat with antibiotics I would not have gone on to get meningitis, the bacterial having got into my blood stream.

I'm sorry that last paragraph turned into a bit of an essay but just wanted to get over the fact that in answer to your question, following my experience, no, the Drs can't just know that you are suffering from a virus or a bacterial infection without further tests.

Do hope some of this may help and good luck.

MrsO

Hello again, and thank you very much for your responses, I have had a nice evening reading them all. What an active forum this is, so much support, so many helpful replies in a couple of hours - unbelievable!

Lizzie Ellen,

to answer your question - we are just now in Benicassim, north of Valencia. There is a very good campsite here, we really love it and come back year after year. There are lots of people here, mostly from England and Germany, but even from Netherlands and France. Later on we go more south (to Andalucia) and probably even to Portugal in Feb/March. It's a good thing travelling by motor home, you are free to visit so many places, stop where you want to, etc.

Mrs O,

thank you for your reply, I will definitely ask the doctor to check my blood pressure next time - because he didn't do it before! You know, this is small town with a little \"Centro Medico\" with only 2 or 3 doctors and plenty of patients, so you don't have more than 5-6 minutes for a consultation - it's nothing! And, of the same reason, they don't have time to find out whether it is viral or bacterial infection, they just guess... Besides, they don't speak English here, so I try to explain everything in Spanish - not so easy. Have a basic knowledge, but it's not always enough.

Eileen,

you are just amazing, doing a real \"detective job\" to find out things. I understand you, it is very interesting and necessary - otherwise you don't get much information when consulting a GP or even a specialist. To some extent I do the same, sitting by the computer and searching at Google after explanation to things the doctors can't answer (and/or don't have time for that).

Still, in this case I really hope the info you found about a possible connection between vertigo/upper respiratory tract symptoms and GCA doesn't concern me! I don't have headache, nor jaw pain, and have fine blood test results. Of course, everything is possible, and I will absolutely discuss it with this doctor, have an appointment with him next Monday the 13th. (The coming week is quite hopeless here in Spain, holiday both Monday and Wednesday, so there is not much left of the week).

I will let you know how this saga continues further on, and keep my fingers crossed to be better soon. I just read that these \"anti-vertigo\" tablets I got latest, have effect first after 2 weeks and I've only taken them in 6 days - so there is still a hope...

Once again, many thanks to all of you, I wish you all the best, no pain, not too cold weather, a nice cup of tea or a glass of wine (I can't take any now with my tablets, but sooner or later........)

Best wishes to you,

Judit :lol:

Judit - I'll just remind you again as I'm sure you have already read it here. The blood levels for the ESR and CRP are only guides - they can be normal in as many as 20% of patients with PMR and GCA and this does give rise to confusion amongst doctors too as they seem convinced that these blood tests are diagnostic - they're not! The cough, vertigo and tinnitus are all less mentioned signs of GCA (which is a more generalised inflammation of the arteries) though less often for the specific version of temporal arteritis which is the real baddie for visual loss. I really don't think you are about to go blind - but a higher dose of steroid might also help the vertigo as it has appeared as you have reduced your dose. I wouldn't try to reduce any further for the moment - whatever is causing the vertigo will also be causing you some stress and that's not the time to try reducing!

Do let us know how it goes. We have out next dose of snow already!

EileenH

Hello again Eileen,

just wanted to update you - very gladly - that I feel much better now, don't ask my why :roll:. By the way, the dizziness (or vertigo) was NOT vertigo according to my doctor, he tested me on a few things like sudden movements, turning my head rapidly, standing with the eyes closed, etc. and all that went without any problem or discomfort. So he called it imbalance of unknown origin and wanted me to try these tablets I mentioned before.

A possible reason to my health problems could be that, on our way from Sweden to Spain, we spent 3 weeks in Budapest (Hungary) to visit my family and during that period my mother, who had been very ill for some time, died. Even if I was kind of prepared for that, it was a shock for me, didn't know I was going \"home\" for a funeral. Maybe this could be a contributing reason why I got all those strange and persistent symptoms, who knows.... However, finger crossed I'm on the road to recovery from this, as it looks like today, there is a good possibility.

How is it with you and your PMR? I understand you are skiing quite often, and that is good sign! Not everyone would be able to exercise in that way without muscle pains as a result (not me, anyway).

Wish you all the best,

Judit :lol:

I'm so sorry to hear about your mother - but that probably does answer the question! You have had a very stressful experience and even at the low dose you are on you should probably have put the dose up a little bit to be able to deal better with it - any form of stress means you need a bit more cortisone to be made by your adrenal glands and - since ours are not really at full function - you have to help.

Glad you're feeling better, do enjoy the rest of the winter and keep in touch now you have come out of hiding!

all the best, EileenH

Eileen, just one more question:

if/when I need to put up the dose a little bit due to stress (and not due to more pain), how much would I need to go up, and for how long time should I stay on the higher dose before reducing back to the same level I was coming from?

Thanks for some ideas about this \"non-stimulating\" necessity!

Best regards,

Judit

Judit - a good question! The doctors don't seem to agree about it either. To some extent it depends what is going on - if you have an infection, then often just 1 or 2 mg a day more until the infection is gone may be enough. Even just taking it really easy might do. As an example, in July I had to go back up from 13.5mg/2 days to 17mg/2 days to deal with the symptoms, I just added a mg per day until I felt comfortable. I suspected I had a urinary tract infection but the doctor didn't agree so I put it down to the extremely hot weather and maybe just an ordinary flare of the PMR (plus I fell off my bicycle!). In November I was in the UK and my doctor there sent a urine sample to the laboratory - I did have an infection and was given antibiotics! I have just dropped from 17.5 to 17mg/2 days and it seems OK - every time over the summer it didn't work, after 2 or 3 days the pain was back in wrists and feet so I couldn't even move around at home.

If you need dental treatment it seems the current recommendations say you don't need a boost of steroid unless you are very nervous. On the other hand, if you need an operation, it is up to the anaesthetist to decide, sometimes if it is a minor thing, you'll be OK with just being monitored, something bigger they would give you an injection - usually just one.

If you have a real return of the PMR, some doctors add 5mg a day to see if that is enough, others say go back to the original dose of 15 or 20 mg/day. Then, once the symptoms have improved, you can start on the tapering of the dose again. The real trick is to try and stop the symptoms getting a real hold again as that means putting your dose up a lot and starting all over again. And it does seem that it can be more difficult the second time around.

You must never forget that the steroids haven't cured the disease, they have just reduced the inflammation to a degree where you can live a normal life. If you try to be heroic and say you want to take a lower dose of steroids, perhaps even stop taking them altogether, I will put up with the discomfort and pain, you are not actually doing yourself any favours. If it gets really bad again, you could end up having to take MORE steroids overall than if you had just carried on with a low dose for a long time. Another factor in the equation which is rarely mentioned is that if your body is in a state of inflammation for whatever reason, you are at an increased risk of developing cancer in the long term because of the effect the inflammation on the cells.

One of the tricks in PMR is to learn to listen to your body - we are all different in the way our PMR acts and in how we respond to the steroids. If you have 1mg tablets you can adjust your dose very finely, with a pill cutter by 0.5mg a day. I still had pain at 17mg/2 days, at 17.5mg/2 days I was much, much better. There are things you can avoid in terms of stress, others you can't. If I have a really bad day I sometimes take just one dose of an extra 5mg and then continue with my usual dose. Rick (from the US) also did that when he was expecting a really busy few days - his rheumatologist said it was exactly what he would have suggested.

So - I don't know if that helps. You obviously have a fair amount of freedom about taking your steroids (as I do) as you are away from your rheumatologist/GP for a long time. I'd say to experiment as I do until you are comfortable - but don't give into the temptation to go higher than you need just because you have so much energy!

good luck,

EileenH

Thank you very much Eileen for the explanation, I really appreciate it!

As an exemple I can say: just now I'am down to 3,1mg from 3,75mg, after a slow tapering for over a month. If I - due to e.g. this virus infection - would put up the dose to let's say 4,4 (2 steps up, meaning not to 3,75 but to the next above that, 4,4), and would stay on that dose in about 10 days, how do I go back to 3,1 again? Can I go directly first to 3,75, stay there for some days and then further down to 3,1? Or should I take it more slowly?

I understand this is very individual, but I mean: how is it generally? - When you put up the dose for just a short while, shouldn't it be easier for the body to go back to a dose it recently had been on? Maybe this is a silly question....

Yes, I have all freedom to do as I want to with my steroids, but not only because I'm away from home, even my GP in Sweden says I can do as I want to, since I am the one who knows my body best. She always says that the most important is how I feel (rather than the actual ESR/CRP figures), and adjust the dose after that.

Most often it's easy to do so, sometimes it's not, like now....

/ Judit :?