Dry Mouth

Water, water and more water! That's all I know. 

Could that be thrush which I understand can also be a pred side effect.  Lots of probiotic foods may help prevent recurrence after you've been treated.

It feels like I've burnt my tongue.. It's painful to eat or drink anything but ice water. Could it be that if prednisone changes the condition of you skin, that it also affects mucus membrane?

I will up my intake of probiotic foods, thank you for the suggestion.

It sounds like you have something that I have which is unrelated to PMR or prednisone. It's called burning tongue syndrome. I recommend you go see your dentist.

http://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/home/ovc-20179959

I occasionally get soreness on the tip of my tongue - which is almost always followed by what appears to be a sort of cold sore developing on and around my lips. If I catch it quickly enough with acyclovir cream it doesn't develop. I also get sore areas on the side of my tongue - as if it is swollen and my teeth are catching it.

Hello Eileen

I was interested to read that you say that Dry Eye can occur whikst on Pred. I am suffering with persistent watering of the right eye which has happened since starting on steroids. The eye specialist has not connected the two. I am using eye drops to combat the watering but they do not have much effect. It is causing me a problem when watching the tele and also reading road signs so I do not drive. Hopefully when the day comes when I can cease taking the steroids things will resolve themselves.

Gill

Mine started with PMR rather than with pred - it was still a pain!

What sort of eye drops? I used to use a liposomal spray which you spray onto the outside of your closed lids and I found that quite helpful. The watering is the eye's attempt to protect the surface because the proper viscous tears are lacking - and usually you need pretty thick artificial tears to provide the same protection.

I'm very much of the opinion that if something starts to happen soon after starting a new procedure or medication - blame that until proven otherwise! Quite why some doctors struggle so much with joined up thinking is a mystery to me!

I am using Hypromellose eye drops. I agree with you about doctors! Especially when it comes to treating PMR. Mine seems to think that reducing the dose of Pred is some sort of standard procedure depending on the ESR reading. I have great difficulty in reducing the dose without pain - something that other people seem to have a problem with. I spoke to a locum doctor last week and he said that you can reduce in 'chunks'when on a large dose  but you then reduce 1mg a month when you reach 5mg. I reduced from 15mg to 10mg overnight and it nearly crucified me! (On Dr's orders).

Thank you for your response

Gill

Good grief - you CANNOT reduce in chunks in PMR! You can reduce 5mg at a time from the doses of 40mg+ used for GCA but if you do that in PMR it is asking for trouble.

If you haven't seen this:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

you will find loads of reading for you - and your doctors. As a start, off the doctors the "Bristol paper" where a top rheumatologist and his group expalin their approach to managing PMR for the benefit of GPs. They do 15/12.5/10 - and keep the patient at 10mg for a year. Then they reduce 1mg at a time.

The experiences of hundreds of patients over 7+ years on 3 different dedicated PMR/GCA forums has shown that even that can be a bit difficult for many patients, especially after having had a flare due to reducing too far or too fast. So we developed the "Dead Slow and Nearly Stop" reduction approach which you will find described in the responses to that thread, just scroll down past the reading list. It is all explained, how it came to be and the reasoning behind it. It is in use in a clinical study now in the north of England - but there are a lot of patients on the 3 forums who have used it or something very similar to get to lower doses than ever before, without flares in most cases. Some have even got off pred altogether.

Your agony dropping from 15 to 10 was most likely steroid withdrawal rheumatism, something you don't get in normal use of tapers with pred because you weren't on them long enough. I dropped from 15 to 10 after 2 weeks - no bother. I reduced from 10 to 5 after a further 2 weeks, I was still fine. But having stopped and a flare setting in - it took me a few years to get to 5mg again.

PMR is not like other illnesses where pred is used - it is a chronic illness and, if you were going to compare it to rheumatoid arthritis, your GP cannot use pred as he may do there where you use the pred for a flare until the DMARD usually used in RA is adjusted or changed and takes over managing the RA again. In PMR pred is your DMARD, it is managing the symptoms to allow a reasonable quality of life until the cause of the PMR, an underlying autoimmune disorder that is making your immune system attack your body and cause inflammation, dies out and goes into remission. Nothing else does it - and until that happens you will need enough pred. For 75% of patients it takes between 2 and 4 to 6 years - not months, years.

So stand up to your GP if he tries to get you to do that again. Because it doesn't work. The dose you are looking for, the lowest dose that manages the symptoms as well as the starting dose of 15mg did, will most likely be somewhere between 10 and 5mg at present - go down in 5mg steps and you will overshoot and bang, there will be a flare. Which will send you back to the beginning to get it under control and that may turn out to be harder second time around. So you will have taken more pred and had far more pain than if you had just chugged on down the dose, reducing 1mg at a time over a few weeks each time. 

Thanks to everyone who replied to my Dry Mouth problem, In reply to Eileen  i don't think i have dry eyes. So how can Sjogren's syndrome be diagnosed if the symptoms are the same as PMR. I have never drunk much so no change there. it is my second day without Omeprazole it seems a bit better but could be my imagination. I have been on Natecal for 2yrs since having PMR, so think i will ask for Vit D to be included in my next blood test.

You don't normally have the dryness with PMR but Sjogrens can actually be far worse than PMR in the long term. Most autoimmune disorders are accompanied by joint and muscle pain of some sort - no wonder it is complicated!

If you haven't got dry but watering, gritty, uncomfortable eyes you possibly don't have Sjogrens - which can be diagnosed by antibodies in the blood and doing a biopsy of salivary glands. Sicca syndrome is similar but doesn't have the antibodies.

However, since reduction in salivary flow is a proven side effect of omeprazole, you have done the first step which is to try stopping it. Stopping using omeprazole does result in recovery - but the paper didn't say over what period this happens. 

It is important to drink enough - particularly as we age, if we don't have renal problems. 

I have very dry mouth.....drink tons of fluids....mainly tea.   Like you have very dry eyes, Blepharitis, is what the eye clinic calls it.....very sore/gritty, and like you right eye waters!.....they advised me to clean my eyes, morning/night with baby shampoo!...Hope  this helps.....all things I have tried in past from doctor have not helped.....Good luck...

Hello Eileen

I am most grateful for your lengthy informative reply. 

I am having a lfare at present I think! I reduced from 10mg to 7.5mg five weeks ago but experienced some pain so went back to the GP He put me back to 10mg. After three days I felt no more pain for just one day.

Since then I have been racked with pain in my legs. Back to the GP again yesterday - apparently my ESR reading is normal at 11 The Doc said that she does disregards that and treats the symptoms (as you said). I have a choice to go on either 12.5mg for a week and 'see how it goes' or take 15mg for 4 weeks. I have opted for 15mg as I am in so much pain and it is making life a misery. Is it because I have had PMR for 3 years that it is makes it more difficult to lower the dose?

Would be grateful for your comments!

Best wishes

Gill

What is making it difficult to reduce is that you are yoyoing - and trying to reduce in far too big steps at one time. The downward steps must be small - or your body rebels.

If you were OK for a few days at 10mg and you say the pain is in your legs - do you mean it isn't a real reurn of what was typical of PMR for you? Did you do anything in those 3 days - too much housework or other activity? Could you have wrenched your back? If the 15mg doesn't sort it fairly quickly I would ask about possibly a physio appointment - to assess if it could be piriformis syndrome or myofascial pain syndrome rather than the PMR itself. If that were the case it would be better treated separately in a more targeted way.

Sometimes our pain isn't straight PMR - and that is something that needs to be identified and dealt with in the best way for what it is - sometimes even steroid injections to get the steroid where it is most needed. Often then the reduction in the oral pred for the PMR is easier. 

I used to have the dry gritty eyes (long before PMR) and on reading about the baby shampoo thing thought I'd just make sure my eyelids along the lashes got well soaped when I washed my face with Pears soap, and lo and behold the problem cleared up!  I think the eye discomforts I get now are probably pred or PMR related and just use preservative free drops.

Thanks for that......I am really feeling low today, hate it when everything hurts at once!  Have lots of low back/leg pain, and terrible fatigue....have uppped my dose a week ago, to no avail...(from 10mg to 12mg) pain is unbearable....I started at 15 mg 5 years ago and feel I`m getting no-where.  Having mild massage and acupunture as well.  Had blood tests last week, not diabetic, but have high cholesterol (7!) Have appointment in 3 weeks time to see doctor....but what can she do?.....Sorry to run on, but would appreciate any advice....thank you

Hello Linda

my sympathy with you as I am also suffering pain in the legs when standing longer than i minute. Keep sitting down. Have just been 'upped' from 10mg to 15mg (very disappointed). It seems that everyone is different. There is more than one solution to lowering the dose - and only you know how you feel when the dose is reduced. Trial and error. You are not alone in this struggle!

The doctor should prescribe statins to lower your cholesterol - I was tested and found to have raised levels (6.8) about 2 years ago. Within a year they had dropped to 4. (Well below the normal 4.8)

Hope this helps

Gill

Linda:  Has your doctor considered it may NOT be PMR? PMR is not the disease - it is the symptoms of an underlying disorder and there are several. Not all of them respond best to pred - the PMR we discuss here does, there is little option, but if you have one of the other things that can present in a very similar way, then sometimes another approach is better. 

Two things that can cause low back and leg pain alongside PMR, and are commonly found with it, are piriformis syndrome and myofascial pain syndrome. The symptoms are easy to ascribe to PMR - but they do respond better to individual treatment. Examinations to see if they are a possible problem should be done and if they are the culprit/s then sorting them out will often result in needing alower dose of oral pred. And they can contribute to sacroiliacitis - which is truly excruciating! I ended up in hospital because of the combination of myofascial pain syndrome exacerbating sacroiliacitis - which wasn't all bad as it was officially diagnosed in the pain clinic and sorted out!

Where exactly is the pain and does anything make it worse/better? Is it worse or better in bed for example? 

In the meantime, have you tried using a warm hot water bottle over the painful area? If that doesn't work - have you tried ice? Both carefully wrapped to keep away from direct contact with the skin I hasten to add! 

See my response to Linda - perhaps applies to you too?

I won't get far into the statins argument - except to say that during my hospitalisation for the back problems I was put on statins and within a week was almost in a wheelchair. The cardiologist is perfectly happy about me not taking them - I haven't yet had a "cardiovascular event" and there is no credible evidence that they prevent one in a woman who has not yet had one. If you have already had such an event it is a different matter. But having too low a cholesterol level is a risk factor for several diseases and there is a fair bit of evidence that they do contribute to dementia amongst other things.

Thank you for your reply....I have often wondered if I truly have PMR myself....my physio has said it is the sacroiliacit (if that makes sense!)  area that the problem is.......and this radiates down my legs....(it`s not sciatica)  I expect it would be the rheumie to define exactly what is wrong?.....

The pain is in the very lowest of my spine....worse when sitting if I`m not totally level....have to get up and walk about every 30mins to ease it a bit (dosen`t ever go away)  Better in bed, but wake every couple of hours....to turn over, and have something between knees to ease a bit (if that makes sense) will sleep better tonight because I`ve had acupunture....and gentle massage....but it dosen`t last I`m afraid....have got heat blanket that wraps round, it certainly helps.....but it`s mostly tailbone....so would need to be in the hot seat? Have told physio about myofascial pain syndrome.....but not piriformis syndrome.....so will do that....don`t know how else I can explain it.....but thanks anyway.

I`m sorry to keep posting on here, but just can`t believe how much this pain has erupted.....it`s been a few weeks now, so have had enough, I do like to get some answers as most of us do....so I can work towards at least some release....but hasten to add, don`t think the pred is now doing that.....Thank you...

Thanks for your reply....you are right no-one only us know what the pain is like and how much it affects out lives....and yes the dosage of pred is a struggle....

​My doctor ha been loathe to prescribe me statins when my cholesterol was 5.5 because she thinks I have enough muscle pain now....and some statins do cause this...I have had fibromyalgia for 20 years and don`t tolerate medication well at all......

My husband years ago when he had a back problem developed raised cholesterol, and that was because he was immobile, when he was active again it dropped.......so there`s my excuse, I`m certainly not active....like you keep sitting down!

Good luck......Linda

 

Don't apologise for posting - that's what the forum is for, to bounce ideas around.

Sounds as if your physio is thinking along similar lines to me - and no, a rheumie really won't be a lot of help! I got a load of rubbish from an orthopaedic specialist too, he reckoned it was "wear and tear" and I'd have to live with it! I couldn't walk for more than 10 mins and I wasn't 60 then! The anaesthetist at the pain clinic identified the hard muscles all over my back - and the hospital physiotherapist could feel them too. They sorted it out - now, no pain!

SO - can the physio suggest a way of working on the problem? Or reccomend someone - myofascial release therapy is one label. I also previously had got a lot out of Bowen therapy - you pay but if 3 sessions don't do anything there is probably no point continuing. A friend could barely get to the bathroom with a zimmer frame - one session of Bowen and she forgot the walking stick/cane she'd needed to get in to the room! I'd been at her to try it for months - and she still posts to say she wishes she'd given in sooner!

Linda, I hope you are feeling better today.  I see from other posts that you've got some really good advice from others here.  

I don't think statins are a good idea in most cases. 

Do you take Vitamin K2?  There are some studies which show that not only is it good for your bones but it may also lower serum cholesterol as well.  You can google it.

Thank you for that.....

?There have been trials recently on TV with Turmeric for inflammation, pills and powder....there were negative results, but, all their cholesterol lowered!...like a lot of "cures" they are accidently found.....so more tumeric methinks....

I am having trouble on here now since having large video adverts, taking me ages to type....anyone else??  Can`t get rid of them!

adblock

Yup - adblock, an add-on for google and things. Google it...

I too am now getting many large video adverts on this forum site.

Does adblock work for iPads?  

Not that I know anything about iPads but when I googled adblock for ipads it appears to...

Thank you Eileen....the font of wisdom....when are you going to run for goverment??  we need stright talkers with sensible honest answers....you!

Oh no - I'd be accused of scaremongering! 

 

It already scares me about  a certain person with a certain hairstyle that might be in charge of a certain large country in a few days time!......Aren`t I naughty...

?On a more seroius note....from what you have told me lately of your experiences in the past with pain etc....I have deduced that it is Sacroiliacitis that I possibly have.....and I`ve looked up online too, my problem is worse when sitting and then getting up from the chair....the pain radiates across lower back/hips/pelvis and down both legs......what treatment did you have for that, if you don`t mind me asking.....Thank you..

It got really bad - I got out of bed to go to the bathroom one morning and after I got back into bed I couldn't move! My husband was going for a blood test at the hospital so I took a big dose of ibuprofen and crawled to the car to go with him. They took one look at me and put me on a trolley! I must have looked bad!  They admitted me for their standard approach here; high dose intravenous steroids and painkiller in the morning, infusion of valium at night as a muscle relaxant. The improvement even after the first was noticeable. The next day I could move without pain - but the night time valium infusion triggered a massive atrial fibrillation episode, it is a known but very rare reaction. They thought it was the steroid so I didn't get another but did get another valium one - and the same happened. So that was the end of that and they sent me to the pain clinic for the alternative approach - they hadn't wanted to try that first as it takes time and I was in so much pain.

Over a course of a few months, every couple of weeks I had local injections of muscle relaxant and steroids all over my back as well as a technique called needling. She diagnosed it as myofascial pain syndrome - the back muscles were all spasmed and hard as a result. MPS forms trigger points that can be felt as hard knots of spasmed muscle fibres in bigger muscles and she did the shots into the trigger points to disperse them. She also did manual mobilisation of the trigger points - using fingers and thumbs.By the time she'd finished all the muscles were soft and the sacroiliac pain was gone too.

The muscles kept tightening which we couldn't understand - until I had a crooked upper left wisdom tooth removed! It had been affecting my bite and putting strain on my back muscles. I've been OK for nearly 4 years now - really good for well over 2.

It's difficult to get that sort of comprehensive management easily - but the manual mobilisation can be done by any good physio or sports massage therapist. It isn't unusual to have steroid injections in the sacroiliac area - so it may be possible to find a doctor who will do it. I also in the past had found Bowen therapy kept the situation stable - I've had back problems for years and it was quite bad in the first 5 years with PMR and no pred, Bowen really did keep me upright and moving!

Thanks Eileen, my physio has been doing the manual mobilisation in the "hard areas" and says they are improving, and with me being able to cope more with it......but like you say, I think I need more than that....so will go to doctor (have been waiting to see the one I always do, who actually listens, but a 4 week wait!)  Have seen the sacro injestions done online, maybe that will be offered....

?I have been in the last year or so grinding my teeth badly which gave me headaches/jaw pain (worried at first it was GCA!) Dentist had a brace made for me....problem solved (almost) just slight grinding has started again, even with brace in, because of pain I think when turning in sleep!...

I know all this costs money to get answers and relief, but this pain is just so awful and debilitating isn`t it....I worry if I`m able to go out, what sort of chair I will sit in.....crazy isn`t it!

?Glad you got your back problem solved, i wouldn`t wish it  on anyone.....well, the odd one or two come to mind!  Thanks again...

 

The first time I had the problem - over 25 years ago - it was done with the same approach you are having by the local sports masseur. All paid for by German health insurance then, 2 sessions a week for months - it was slow, but wonderful! Unfortunately it wasn't quite entirely sorted when we had to return to the UK - and of course there I was looked at as if I had 2 heads! It slowly built up again but never quite as bad until 4 years ago.

To be honest, if the sacroiliac joint is actually inflamed - which is what leads to the excruciating pain as the surfaces rub together - I doubt anything short of steroid shots will get rid of it entirely. The UK seems terribly unwilling to see it as a problem - "it's low back pain, tough..."

Yes, I agree.....and then what riles me the most.....wear and tear! 

Quite worrying reallly here now in UK, so many things not now being done healthwise.  I know someone who has had to pay for his hernia op, and they would n`t do the varicose veins.....told they have to bleed before they can operate.....

I got the "wear and tear" drivel from an orthopaedic specialist - obviously he could see through skin. But not a UK one, a local Italian one here. And it was entirely muscular it turned out! 

Things are about 20 years behind the UK here and long may that last! My husband already has his healthcare card for Italy as he is already an early pensioner having worked 42+ years in various bits of Europe. I didn't and so have to wait for pension age - now 67. When Article 50 is triggered is a bit crucial for me - according to what has been said it will mean exit by early 2019, just a few months too early for my 67th birthday. Not sure how we can get round that. I have suggested reopening my heavily loss-making business and sending him out to work in my name - strangely he doesn't seem impressed! However - I will then have a tiny tiny pension - but also the coveted healthcare entitlement. 

I wouldn`t believe all we read/hear about Brexit and article 50, I`ll believe it when it happens, and think it will be later than they say...that`s the old cynic in me I`m afraid.....The pension age changes have been grossly unfair for many...

?I`m intrigued as to what your heavily loss making business was

I can only hope you are right. interestingly - no-one here thinks it will happen either! We went to investigate Italian citizenship - just in case, but we suspect we'd have to improve our Italian skills! We live in a German-speaking region where we really don't have much opportunity to use it and even the locals struggle! But we are in the process of changing our current residency status to "Permanent"!

I'm not in the Donal Trump league but until I registerd to live here my translation business was well above breaing even. Then it was 2007/8 and the big crash and for a couple of years I had a LOT of business that stemmed from the banks being desperate to find out what they could do to restore customer confidence. Then no-one had any money - very little work and even my main marketing client struggled so everything else went down. It cost me more to be registered to work than I was earning so we pooled our businesses for a couple of years. Now there is absolutely nothing. I don't miss it really but I do miss the money! No, not really, it wasn't that much - but the amount we've lost in the exchange rate is significant    But we're still OK 

Having moved a lot in my life gave me an opportunity to learn about immigration and benefits... I have 3 citizenships and currently live in the 4th country.  There is hardly any benefit to citizenship over permanent resident status. You still get most of the benefits equal to a citizen, except you cannot vote or run for the office ( which is hardly a limitation at our age).

As far as exchange rate, that is more difficult issue. One can watch exchange rate and try to convert funds when the rate is better, I personally have FX trading account that I use for that. When the rate is favorable to me, I convert to local currency. When the rate is not good, I borrow money from the broker and then pay them back when the rate improves. In FX world you are interest rate for borrowing is very low, so it works.

As we say, onwards and up wards....but there`s no truer saying than, your health is your wealth......if we were millionaires in a mansion, we would probably still have to take steroids, and battle this damn PMR....but maybe have more massages!!

Haha - there isn't going to be a "better" exchange rate in the foreseeable future with Brexit! We'd done that within a short time of Brexit but one is a bit limited to what one has as income! We are quite experienced at it - we're heading for a total of 20 years living out of the UK now.

Obviously the countries you have lived in are a bit different - I have to have lived in Italy for 10 years to even apply for citizenship and apparently the application process is a bit bunged up (can't imagine why, we only have 160,000 or so refugees and migrants arriving per year). And you have to do a language test - which for us in English of German would be an absolute doddle, Italian not so much as it is barely spoken here to offer practice.

If your pension is not in euros, then there is an advantage in exchange rate if you have FX account.  If you do it thru the bank, usually spread between buy/sell exchange rate is 4-6%.  You are "charged" 1/2 of that spread.  When you calculate for a year, 2-3% of your total conversion comes to sizable amount.  

That doesn't apply at present - I get it paid directly here as another EU country, like a few million others so the rate is fairly good and no charges. The problem will arise when they finally get their act together to decide how this will proceed. We've had the carpet pulled from under our feet and no-one knows what will happen. No point worrying about it or trying to circumvent it until we know what there is to circumvent/