Polymyalgia - diagnosed in June 2016

Bones, joints and muscles
1

I live in Australia and his disease is not well known here. I think I have had it for 26 years undiagnosed and this year by June I could not longer do more than walk a few steps and required assistance to do everything else.

I was taken into a small country hospital and a german Dr diagnosed the condition and started me on 50mg of Pred. Great relief but side effects are causing a few problems.

I am trying to get the Pred dosage down and my doctor has given me free rein as he has never seen a case of the disease, nor any of the other 5 doctors in the practice.

When diagnosed my feet were also sore and painful and both hands, but right hand was so badly swollen that I could not bend any joints at all.

In the 90's it was deemed that I had a back problem but they could not see the damage that would cause the pain so it was passed off that I was "putting it on". One doctor though, did prescribe Voltaren and I think that may have helped.

I can now walk around and look after myself and have back used of my hands. But joints are still sore and muscles hurt most of the day till I lay flat in bed.

I am down to 17.5mg of Pred, but if l do any activity such as vacuuming or gardening and mowing the lawn, or shopping, I find l am very sore for the next couple of days.

I am 74 and live on my own, and at Christmas time was very active. The disease has always affected me in Australian winters but never as bad as this year.

As no one seems to know much about this over here, can someone tell me, is Voltaren an alternative drug?

Am I trying to get the dosage down too fast?

What is normal?

My CRP and ESR levels have dropped dramatically on Pred.

SIide effects of tunnel vision (no I do not have GCA) bloating, heart palpitations, indigestion are some of the side effects.

Help!!!!

 

2

Hi Robin. Welcome to the club. It's incredible that you have suffered undiagnosed for so many years.

We do have some members from Australia. One in particular I'm thinking about, who is very knowledgeable about PMR and the Australian medical side (FlipDover) is currently away on holiday, but I'm sure she will respond when she's back.

50mg pred is a very high starting dose for PMR . It's usually no more than 20mg depending on severity of symptoms, but it could be that your doctor wanted to cover all eventualities due to his lack of knowledge of PMR. GCA starting dose is usually between 40-60mg pred.

Pred is the only drug prescribed for PMR.

We all suffer side effects to some extent depending on how high the dose is, some more than others, and especially at the beginning, as your body gets used to the drug. It will get better as you taper down.

You've found a really knowledgeable and friendly site here, so stick with us. Wishing you all the best.

Susanne

3

Hello

15mg of Pred is the usual starting dose. Once the ESR reading decreases it is advisable to reduce the dose slowly - ie by 10% every 4 weeks  depending on the level of your ESR reading. Over time the steroids do weaken the muscles and have many other side effects - so that is why doctors like to reduce the dose as soon as possible. It effects people in many different ways.

You will derive some comfort from this website as you will learn that others are suffering as well as yourself! 

I am amazed that you have put up with this desease for so long - it is extremely painful and disabling.

Good luck from a fellow sufferer in England.

 

4

Here is a reading list for your GP and his practice:

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

I can't give you the individual links here as they'll go for moderation automatically - so they are all gathered there. Some are aimed at patients, one or two at doctors.

There is also a new pocket book for doctors from Oxford press, the Oxford Rheumatology library:

Polymyalgia Rheumatica and Giant Cell Arteritis (Oxford Rheumatology Library) Paperback – by Bhaskar Dasgupta (Editor), Christian Dejaco (Editor)

Voltaren is not an alternative drug for PMR, only pred manages the symptoms successfully. And that is the crux - it only manages the symptoms and the actual cause of the symptoms we call PMR is an  underlying autoimmune disorder which continues until it burns out - which if you've had the symptoms for 26 years sounds unlikely for you! I've had it 12 years, about a quarter of us do have it for a long long time! So having got the symptoms under control you also have to adjust your lifestyle a bit because your muscles remain intolerant of acute exercise. Hence the soreness after overdoing it.

The normal starting dose is 15-20mg, up to 25mg if required, never above 30mg. Then you reduce the dose to find the lowest dose that gives the same result as that starting dose. So now you are at that stage - and in the replies section to the thread I gave you the link for there is a very successful slow reduction programme. You are not cured - so don't try to get off pred asap, the symptoms will return.

Come back and ask any questions - anytime.

5

I wish I knew something to say that would be helpful, but I don't.

I hope you feel better soon  sad

 

6

Hello Robyn,

I am in NSW Australia, welcome to this web site, I am sure you will find it encouraging and very helpful.

I like you was started on 50mg of Predn. now down to 8mgs I have been on it for 18 mths.  I also had back pain for quite a few years before being diagnosed, maybe back pain can be a precurser to this disease, who knows.  My Dr does not know very much about PMR as well, and I prompt him quite a lot, with the info. I have discovered on this site, and he accepts that and takes a lot of the info. and works with it.  He did tell me to drop 1mg pred per week, which I ignored, thank goodness and I am dropping 1 mg per month with the go slow reduction plan which is very good.  I will write some more to you later on as I am running late for an apt. at the moment.   Sorry to hear you have been suffering for soooooo long.   I to have suffered from palpitations, but under control now with lower Predn.

take care,   Track

Where are you living in Australia?

7

How awful for you to have sufferd so long, but I am glad you are finally getting some relief.  I am concerned to read about the "tunnel" vision.  Have you been getting the pressure in your eyes checked as glaucoma can be induced by the steroids and cause loss of peripheral vision if not treated.   

 

8

Hi, I am also in Australia : Cairns I have had PMR and GCA since April, now on 35 mg of Pred and will be reducing soon. I also will go with the Go Slow Reduction :  Nice to say say Hi

9

Hi, I also live in Australia Cairns: My Dr does not have a great idea about PMR or GCA : It was suggested to me not to take the  Voltaren, as it does cause some of your side effects like indigestion, not good for kidney's etc. But of course we are all different.

I am on 35mg of Pred now and hope to start reducing soon on the slow method : Great information on this site :

If at any time you wish to talk, just email me: Cheers 

10

Hi Robin! I have to say you are far stronger than I ever hope to be to put up with the stiffness, aches & pain that characterize PMR for all these years! Bless your heart! According to my doctor and all the things I've read about it, a very slow taper off the prednisone gives you the best chance of a good recovery. I've been following that protocol with some success. That means that I've had a couple of flares requiring me to increase the dose but I'm slowly working my way back down. You might talk to your doctor about a very slow reduction (ie .5 mg every 4-6 weeks or more) to see if that alleviates some of your other issues. Wishing  you all the best!

11

Hello Robin,

I am back, answered you earlier on this morning.   I also have suffered this winter, we have had a very cold winter in Lake Macquarie, which is North of Sydney about 140 klms.  Now we are into Spring and some warmer days I have felt much better on those warmer days.

My Dr. told me to take Panamax 500mg which I can buy at the Chemist (no script) for 100 tablets for $2.90.  to help with the pain in between taking my am tablet and my pm tablets of Predn.  I found these tablets very helpful, and I am now down to taking only 1/2 tablet in morning and 1/2 in evening.  You must not take more than 6 per day as they can irritate your stomach, at my worst I was on 6 per day and did not have any problem with that amount.

I developed a MOON face while on high Predn. which is now almost back to normal, also Glaucoma in eyes and I am on Glaucoma drops now, though my Opthamologist said I MIGHT come down off them if can get inflammation under control.  I also developed high blood pressure, which has now returned to normal and I am happy to say I am now off the blood pressure tablets.  Indigestion was bad, but now improved, I had slight weight gain, that has returned to normal.  My ESR levels are now very low, they were 98% not to long ago.  I am feeling much better with pain now, only get slight tingles in arms and legs when my evening dose of Predn. is due.  

Unfortunately my full blood count has picked up some other problems, they are not too sure if Predn. causing this or not, I am visiting   a Haemotologist soon to work this out, otherwise I am feeling quite good now after 18 months being on Predn.

Keep in touch Robin, take care.

12

Hi Suzanne. I started on 50mg because of my hands and feet. I was barely able to take more than 5 steps and had no use of right hand and limited use of my left hand. 3rd day dropped to 25 mg but was unable to reduce that for next 2 months. Tried to drop then to 20mg but that did not work so back to 25. but 2 weeks later I started taking it down 1 mg per week. That has worked until this week and I am pretty sore with 17.5mg. See Doctor in 2 days but think I will need to increase the dosage.

Just good to be able to talk to others who know what its like.

Because it is rare over here and hits then seems to be better in summer, a few people have said they thought I was putting on an act! It is because there are no visible signs I guess and I can be walking reasonably well and out of the blue, hobbling again. 

13

Thanks 10% every 4 weeks is a guideline that I did not have before. I have a heart condition Tachycardia and the Pred and my heart are not the happiest of bedfellows. But we are doing OK.

14

Was in Sydney, but moved to Perth end of 2011. My big seachange and desire after raising a family of 6 (and a few strays) and looking after hubby until he passed away. Left family from Bundy in Qld to Frankston in Vic. Probably a big mistake, but nothing ventured nothing gained.

For years I was told it was back problems, and as well they tested me for all sorts of endocrione problems, but I always came up clear and the damage to lower back seem insignificantly damaged for the amiount of pain. Even tested for MS a couple of time.

I would still not be diagnosed if I had not chanced to meet the German Doctor at the country hospital. She at least knew about the disease but no one in Perth seems to know much.

Look forward to hearing more from you.

15

I had cataract surgery both eyes 2015 and had excellent vision after them. The vision is not as bad on lower dosage but I suspect that the capsule that is holding left lens has decided to grow across the back of the lens.

Next visit to doctor and I will go back to eye specialist for check up.

Thanks for the advice

16

Hi Dea, it would be great to be able to get a support group going for people in Australia. I don't know how to do that but perhaps if a few Aussies think it worthwhile we could work something out.

17

Hi I have responded to your earlier post and know where Port is. Have a stepdaughter living there.

I am only taking the tablets in the morning. Had cataract surgery last year both eyes so I will go back to see the specialist soon.

My CRP level was 80 and ESR 50 and in August was down to 9 and 2.

The higher blood pressure is causing concern because I suffer from PSVT but so far we are managing OK.

I have been diagnosed with 3 abdominals cysts as well, oneas big as a clenched fist but they have to be removed as heart specialist is concerned about the upward pressure on my chest. Hopefully they will be removed before Christmas. Key hole surgery makes these things far easier to deal with and it will be in and out same day. Maybe that will help with the heart.

The only thing about the moon face that I could say as a positive - it took 10 years off my age as I lost facial wrinkles!  Has to be a positive in every situation. 

My last test is showing mild lymphocytosis and so will find out more about that later this week.

Do you have knowledge of this as an heriditary disease? I know it usually effects women more than men and as I have 5 daughters and 6 granddaughters I am somewhat concerned as to whether there is any way of testing them to see if they are prone to maybe get the disease.

Here from you again and thanks for your help and advice

 

18

You could start by putting a shout-out on the various forums - there are 3 based in the UK and all have had people from Australia in the past. 

Canada and the US tried to get an online one (like this) up and running for them on the grounds that the "health systems" were different but they haven't been particulalry successful I don't think, primarily because the patient expertise is here in the UK amongst the people who started it all in the first place having "met" via this forum. 

If you want to try to get a local support group going a good way to get an informal coffee meet-up on the road is to ask GPs and rheumatology departments if they will put up an ad and bring it to patients' notice. One becomes two becomes three and so on - IF you have several people living within a relatively short distance. But it does require a fair bit of committment and patience, it won't happen overnight.

19

Sorry - he's wrong. You recover from PMR when the underlying autoimmune cause of the symptoms goes into remission - all the pred does is manage the symptoms in the meantime.However slowly you reduce you won't get below the current dose required to do that - you may be lucky and it burns out relatively quickly. Or you may not.

What a very slow reduction does do though is allow you to get to a lower dose than otherwise without steroid withdrawal problems or flares - which can be so similar you don't know which it is and so go back to a higher dose without really needing to.

20

No, this isn't a hereditary disease - there is a genetic part ot it in that people with Scandinavian genes seem more likely to have it and African and Asian heritage peoples are much less likely to develop it. But hereditary in that if your parents have it you will get it - no.

There is no way of predicting who will develop it - it is an autoimmune disorder where the immune system becomes overloaded through many successive things and eventually a straw breaks the camel's back and it starts attacking your body as if it were "foreign", as it does with invading infections. This causes damage to cells and certain tissues are damaged causing inflammation. In the case of PMR and GCA it is almost certainly a vasculitis (inflamed blood vessels) in both cases. In GCA it is definitely inflammation of large blood vessels  (or vasculitis) and in PMR it is very probably of the very small blood vessels. This restricts blood flow and supply of nutrients and oxygen to the muscles and nerves and the removal of waste products. That's what makes exercise difficult - not enough oxygen etc and waste products are not being removed properly so you get sore muscles until they recover which takes far longer than usual. 

There are many different possible trigger,s on one thing, including environmental factors, chemicals, infections, stress - all affect your immune system but it isn't known what in particular may do it, there is no common factor even though a lot of people insist it was stress or the flu jab.