Confused .com !!!

Thank you Eileen for your comforting response .

she has prescribed more pred for another month , but has recommended that I 'play ' with the dose dependent on my symptoms . She suggested a gradual reduction if possible as is concerned regarding the side effects . Suggested trying to increase pain killers .... Anti -inflamitories if possible .

Bizarrely all joints are now moving nicely but ache and hurt like mad if exerted !! No stiffness at all only deep pain left is now in my lower back and the nape of my neck .

spoke to a lovely Bowen therapist today following a few e-mails over the weekend , and hope that she will work wonders on my achy bits .

As for the lethargy ...... So so tired 

hot sweats .... No dripping beds for 5 days  

daily furnace eruptions appear to also have lessened ... (Don't want to speak to soon as when I thought they had gone last week they then reappeared !)

I am from Coventry (England )

my thoughts re oestroporodisis : not that I'm am expert !!! Is that I wouldn't have imagined its presentation with such a combination of symptoms that increase and take over the whole body in the way that I have experienced.

not sure whether my thoughts are correct but I am feeling very bemused right now x

I do find their concern about the side-effects of pred very touching! Less interest seems to be shown to the side-effects of PMR. 

The osteoporosis fear is it is one of the side effects of pred. Maybe - I have yet to be totally convinced. I, and others, have been on pred for 5 years or more and have no osteoporosis, onlly about ahlaf of people do. At least you're getting a dexascan - some people have to fight for them! Unless they do a dexa at the outset they cannot know if it was the pred or whether you were osteoporitic anyway...

Yep you are right , I am under going more scans to see what's going on ,so do feel that currently I am being thoroughly assessed . 

Despite the awful time ..... I do need to remind myself having read lots of other people's stories , I feel very fortunate to be accessing such investigations considering the short length of time from the onset of symptoms compared to others . 

For that I must remain very grateful .

with thanks 

Helene 

Hi Eileen, I'd like to know if many people taking prednisone for PMR have had problems with their teeth.  I've been taking prednisone for 1.5 years and am at 9mg now but have had 3 dental issues in the last 6 months.  Today I'm seeing my dentist for two teeth, one in my upper jaw and another in my lower jaw that are very sensitive!  I've never had so many dental issues in such a short time.  I'd switch medications if there were good alternatives.  Any feedback would be dearly appreciated.

I had sensitive teeth which was probably the PMR because I had problems before pred - I had PMR for 5 years before being given pred. I also had sensitive teeth whilst on pred but it has gone entirely now and I am still on pred. I used Sensodyne Pronamel and it really did help. It was eating/drinking cold things that was worst for me - I gave up cleaning my teeth with cold water altogether! A lot of people say similar things - but I'm really not sure you can say 100% that it is pred.

 

MrsO had crumbling teeth when on pred, hadn't happened before and hasn't happened since she came off pred. But other than saying that I'll leave it to her to say more.

Hi Eileen, thanks for writing back. How do I contact MrsO to ask if she'll share her experience.  I felt this discomfort in my lower jaw in one of my teeth, (not sure which one), building up the last 2 weeks and then a few days ago I couldn't eat on my right side of my mouth because of the pain, even wondered if a tooth had broken.  Yesterday I realized it was 2 teeth, one in the upper and one in the lower jaw on that side that were given me trouble.  I'm seeing my dentist this morning but my concern is where this is all heading and if there's a way to prevent more serious issues yet. It is hard to believe I'm in this situation!

I'm sure she'll see your post later. I take it you aren't taking alendronic acid?

It is possible that the PMR has messed up your upper back and neck muscles and you have a changed bite - ask your dentist. I had a "wrong" bite that gave me awful neck problems - it works the other way round too.

Hi Eileen, thanks again for replying so soon.  I did just see my dentist and am going back later today for a cleaning as my gums in the lower jaw are irritated, something my dentist says prednisone can cause.  He did x-rays which showed no decay and thinks getting my teeth cleaned around the gums 3 or 4 times a year would be helpful.  He asked 2 colleagues in his office if they'd had other patients on prednisone have issues with their teeth and they said no, other than gums getting irritated as well.  When I see the hygienist later today I'll ask my dentist about whether my bite has been affected by the PMR's affect on the neck and shoulders; thanks for that thought!  Can you tell me what alendronic acid is and what it does?

Alendronic acid (otherwise known by its brand name of Fosamax) is a drug that increases bone density and is often handed out alongside pred as pred can reduce bone density. It has some interesting potential side effects - including causing problems with healing of the jaw bone after extractions and some dentists won't touch patients who are on it "just in case". I've not taken it, I have no bone density problems, calcium and vit D have done the job.

I've also been told there are a high percentage of hip fractures for those that have been on it.  My doctors have pushed hard for me to take it but I've resisted which always leaves me wondering if I've made a very bad decision.  Have you heard many others feeling about taking it?

I think it is a bit OTT to say there is a high percentage of hip fractures in users - using it for more than 5 years certainly increases the risk and it can happen earlier. The FDA have put out warning that it shouldn't be used for more than 5 years without a pause in the dosing. I have nothing against it being used in patients who need it - but that means used properly (calcium and vit D checked and put right if low) and for patients who have had a dexascan to show they need it. Not handed out like sweeties "just in case". You can hand me the correct dose of  calcium and vit D like sweeties, less can go wrong with them.

What is far more to the point is to have a dexascan done to see if you NEED it. My bone density was fine after 3 months of pred, I had another scan after 3 years of pred and it was still the same having only taken vit D and calcium supplements. Suppose I must be due another soon. 

Sorry, late to this discussion, but, as Eileen has said, I did have an unusual amount of dental problems during the years I was on steroids for PMR/GCA.  Of course, at the time I couldn't confidently blame either the disease inflammation or the treatment, but after some three years in remission without further dental problems, and with few problems in the years prior to PMR/GCA, it does seem to point to the cause being connected to the illness/treatment.  For a few weeks prior to my GCA/PMR diagnosis, I suffered the classic GCA symptom of jaw pain when chewing and I also found myself unable to talk without biting the inside of my cheek.  My mouth got so sore that I visited the dentist to see if something in my mouth was causing this problem but all he could see was the bite marks inside each cheek.  Then the problems started with  teeth either breaking or existing crowns falling off, so I gained several new crowns in the space of a couple of years.  I was advised to switch my toothpaste to Sensodyne Pronamel which I use to this day, and I'm crossing fingers that I won't be needing any more expensive dental treatment in the near future.  Certainly at my latest dental appointment, no treatment was needed but I am fastidious about cleaning and flossing.

Hi MrsO, thanks for sharing this experience.  It sure makes one cautious about taking prednisone which I'm on.  I feel it is causing an unusual number of problems, today however my dentist put my problem down to a buildup of plaque and said to brush my teeth more often and take better care brushing and flossing which I'll do.  Inspite of this reassurance I feel very vulnerable with my teeth being on prednisone.  Many thanks.

Leonard, if you drink fruit juices, then it will help if you stop those.  Don't clean your teeth too soon after eating any acid fruit, including apples.  You have probably been prescribed the usual calcium plus Vit D supplement alongside your steroids, but also ensure you have plenty of calcium in your diet.  Unfortunately those treating me omitted to prescribe the calcium supplement and it is quite possible that this may have contributed to the problems with my teeth.  Never miss or rush cleaning your teeth and be sure to floss at least once a day.  Do also switch to Sensodyne Pronamel toothpaste for added protection.