Recent diagnosis

[Brensy]

Hi all so glad to have found this site, but not glad to know all you lovely people suffering with PMR, hope you don't mind me telling u a bit about my PMR journey. I started to feel generally unwell September 2015, I had an earlier diagnosis of osteo arthritis from about 10 years ago and assumed my aches and pains and reduced mobility was due to that and working a lot of extra hours. Then the fatigue kicked in. I struggled on for 3 months then hit a brick wall and ended up off work for the next five months! In Jan this year I was diagnosed with PMR and started on the Pred, this has been reduced to 15 daily but every time I reduce it further I have a flare up so am struggling to get under 15, then to top it all I have been diagnosed with steroid induced diabetes, and due to being very symptomatic I am on gliclazide. Both Pred and gliclazide cause weight gain so I am really struggling at the moment. I am back at work but it is very difficult as I really struggle sleeping, and the fatigue just doesn't go away. My mobility is really poor, I am using a stick for support, but find I can't stand or walkfor more than a couple of minutes before the pain kicks in. If I do the pain gets worse and my legs start to shake and I feel I am going to fall over! The pain is worse in my hips thighs and lower back and to add into the mix I have also started with osteo arthritis in my hips!!! In May last year I had a bad fall and as well as severe bruising an injuries to my knees and ankle I popped a couple of ribs, I would be interested to know if any of you guys were diagnosed after a similar incident? My doc say s there is no proof that a fall can cause PMR but I have seen a few comments on another website who feel this is the case. So sorry for the long post, looking forward to communicating with you all

[SheffieldJane]

Hi Welcome Brensy!

I was diagnosed with PMR in March 2016 but I suspect it has been brewing away for several years. I put it down to arthritic pain and depression. My history includes a broken shoulder, a period of relentless family stress and a severe flu type virus 22 months ago. I was diagnosed after an attack of vomiting on a flight to see my daughter in Australia and then being hardly able to walk with extreme weakness thereafter. Pred. Kicked in almost immediately making me feel like a new woman. The depression lifted and I care for my toddler grandson at least twice a week while his parents work. I still need to conserve energy in order to fulfil that commitment, having what amounts to a " duvet day" the day before. I cannot imagine holding down paid employment with this condition, as it is. I am reducing Pred and now take 16 mgs, the pains creep back accordingly. I'm pretty worried about side effects such as the diabetes you describe, the moon face, the weight gain, the hair loss, the hump back thing. I've developed high blood pressure and have been prescribed Atenolol which seems to add stomach pain to the mix. I take Tramodol for pain which can make me feel sick. What I am grateful for is the lifting of the depression that I thought was here to stay. Without it I feel absurdly optimistic with no evidence at all. Forgive the out pouring, something in your post struck a cord.

I think all kinds of stressors trigger this thing we have, including physical injury. It does force you to stop and take stock. Go well!

[PMRpro Ambassador]

The fall won't have been the direct cause - but the stress of the trauma could have been enough to finally tip your immune system over the edge.

How are you reducing your dose? Is it in large or small steps? What happens? Is the flare immediate or after a few days?

I would doubt the entire story with your walking and pain is the PMR - I had similar symptoms due to low back problems making the muscles go into spasm and they caused sacroiliacitis and sciatica. Sorting the muscle problems sorted the other problems.

Are you under a specialist or just a GP?

[Celtic PMRGCAuk volunteer]

Hello Brensy and welcome! Interestingly, my PMR started a short while after a tumble off a train that had an unusually steep drop to the platform which I wasn't familiar with. I didn't hit the ground but bounced towards the fence and landed against my friend who had stumbled off before me. Obviously, I have no absolute evidence that the tumble caused PMR but I did already have a problem with a slippage of my spine (spondylolisthesis) so perhaps I was more vulnerable.

You haven't said what steroid dose you were started on and how you have reduced to 15mg. It might just be that you have been reducing in too large chunks or too soon before getting the inflammation properly under control each time. Also, it would be helpful to hear whether your pain responded dramatically to your initial starting dose whatever that was.

Another possibility is that you are overdoing things, and it certainly sounds as though that might be the case. I could never have worked in the early days following diagnosis, although I do appreciate that for some it is a necessity. Many people have found that they have had to have a lengthy period of sick leave to really get on top of the inflammation. The steroids are good at doing this but it is important to remember that they are not curing anything, and we have to do our bit to ensure that we are well rested whilst allowing the steroids to do the best possible job. You may find that you will need to have an even longer break from work.

Unfortunately, having osteoarthritis can muddy the waters and cause confusion over what is what, but it sounds as though you have much more than osteoarthritis going on.

I assume that you have had X-rays, scans carried out since your fall to rule out anything other than PMR, such as injury, being the culprit?

Diabetes is unfortunately a fairly common side effect for those on steroids, and some people are more vulnerable to this than others. I am sure you will have been advised to reduce the amount of refined carbs you eat, as with any foods that are known to turn to sugar in our bodies. Such foods can increase steroid-induced weight gain so should be avoided where possible.

I hope some of this helps but you might find it far more helpful to read Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. It is available on Amazon or direct from the Charity, PMRGCAuk: pmrgcauk.com, with all royalties from sales being donated to the Charity.

[Brensy]

Thanks all for your replies, so quickly!!! I started off on 40 mg Pred which is a lot lower than some I have seen! And you are right the arthritis and PMR symptoms are very similar as are the side effects of the steroids and the symptoms of diabetes, I developed the hump in my neck about three years ago but no one related it to anything specific just said it was a fatty lump. Have seen since about buffalo hump! Charming!!! The book you recommend is brilliant. I am following a much healthier diet but struggling to lose weight due to the Pred and gliclazide. Hopefully this will settle down soon. And I should feel the benefit of the better earring regime soon. The bit that gets me depressed is not being able to get a good level of physical activity but I do try, short walks with my dog etc. It's not just the pain it's the weird feeling in my hips legs and thighs like they are going to give way hence the walking stick. I have brilliant support from my son and work have been good, they have put me on a fixed shift pattern and have offered a lot of support nevertheless it is a stressful job and I don't think that stress helps the condition at all. So grateful for your support and replies, thanks xxx

[DorsetLady PMRGCAuk volunteer in reply to Brensy]

Hi,

You are so right, stress is last thing you need with either GCA or PMR, unfortunately there are very few people who don't have stress of some sort. I'm sure the stress I had as a career brought on, or at least 'encouraged' GCA.

The knack, if you can achieve it, is to manage the stress. Not always easy, especially if you hold down a full time job, but you have to try in whichever way is best for you.

Take care.

[Brensy]

Thanks Dorset lady! Trying to manage the stress work wise by going on fixed shifts, now I have diabetes as well so the variable shifts just wouldn't work, I have also stopped staying late to get things sorted and work have been fine to be truthful so onwards and upwards hopefully! But u are right there is no such thing as a stress free life, best wishes and I hope u are currently well!!!

[Hidden]

Hi Brensy,

40 mg of prednisolone is a very high starting dose for PMR and unfortunately will mask a lot of other auto immune disorders that can present with Polymyalgic symptoms. The fact that you can't reduce below 15 mg makes me question if your diagnosis is correct.

Have you seen a Rheumatologist? It sounds to me as if you shouldn't just be managed by your GP.

[PMRpro Ambassador]

Yes - having seen your replies now i agree with Keyes - that was a very high dose for PMR and if you are struggling to reduce at 15mg then it is possible there is something else going on and you need a rheumatologist not just a GP. PMR is just a symptom of an underlying disorder - and there are several that need to be ruled out which are not in the scope of a GP practice.

[Brensy]

To be honest I have had my doubts about the PMR diagnosis and have only been under the care of my gp I haven't been referred to rheumotology. I had been on 15 Pred for several weeks and had a significant drop in ESR so reduced on advice from docs to 13 then the following months esr had nearly tripled so went back on 15 bit of a yo yo! Up to now I have had MRI, colonoscopy, CAT scan and x Ray's, the x Ray's should deterioration in my hips due to the OA. There was inflammation in my bowel but the tests ruled out any bowel disease luckily. Look forward to speaking to you all soon and good luck x

[PMRpro Ambassador in reply to Brensy]

It's beyond the average GP to do a difficult differential diagnosis if it is an autoimmune disorder that is involved. However good they may think they are...

[CloudGazer6 in reply to PMRpro]

They also are usually the first to say that they don't have access to the same range of blood tests and other investigations available to Rheumatology teams at specialist vasculitis centres.

[PMRpro Ambassador in reply to CloudGazer6]

Absolutely - their usual get-out...

[CloudGazer6 in reply to PMRpro]

I was being sympathetic to the GPs, actually!

[PMRpro Ambassador in reply to CloudGazer6]

Fair enough - you're right of course. But at the same time, when/if that is the case they should be more willing to call on the other resources that are available to them.