Newbie

[brightonbella]

Hi everyone. I'm facing a work tribunal as had so much time off sick. I'm only (!) 54 and want to work, but as you know the minds willing but the flesh is weak!

Has anyone else had experience of working and managing PMR?

[Angela123]

Yes I have, but I'm afraid to say I took early retirement after a year of it. I had also had Rheumatoid Arthritis for 2 years by then but that was well controlled by Methotrexate. I had a lot of time off, but I had an understanding boss who did everything possible to help me stay in work. I was allowed to go in a bit late and leave early, but I had a lot of travelling on top. In the end I realised I was pushing myself too hard and just couldn't continue. I'm 7 years older than you so it wasn't too difficult to give up work financially. You need to discuss your situation with your boss or your HR department and let them know what your difficulties are. Is your pain under control? If not, speak to your doctor. I think fatigue and adequate rest is probably your biggest hurdle. Do you have anyone to represent or support you at the tribunal? I believe you are allowed to take someone in with you by law. Get some advice from Citizens Advice Bureau if you can before the event, and good luck. Angela.

[brightonbella in reply to Angela123]

Thank you so much Angela.

I work in a school helping 4-6 year olds with literacy skills. I have to be really upbeat and talk non-stop! Which is why I have only been in a few days this school year; feeling exhausted, jaw pain etc

I don't feel I can fight for a job when I can't guarantee my attendance on the other hand can't afford to retire so would have to try to claim benefits ?

[PMRpro Ambassador in reply to brightonbella]

You mention jaw pain - have you told your doctor that? Jaw pain that comes on when chewing or talking and goes when you stop only to return again when you restart the activity is a sign of GCA rather than "merely" PMR. GCA is covered by disability legislation. It may not be a useful fact in terms of the unreliability factor but it should make a difference in terms of losing your job and the benefits you might be entitled to.

[brightonbella in reply to PMRpro]

Hi.

I have told GP who sent me to maxio facial consultant who gave me jaw exercises and now waiting for MRI scan.

I begged the useless Rheumatologist to examine me for GCA last week as have headaches and visual disturbance; he said caused by my long term use of steroids. My GP also said I would know if GCA as headaches would be unbearable

[PMRpro Ambassador in reply to brightonbella]

Not another lot of numpties who believe all cases of GCA present with headache! Plenty of us on pred for years who don't have headaches. Headache, jaw ache and visual disturbances when you have PMR says query GCA until proven otherwise.

This link emedicine.medscape.com/arti...

says

"The onset of giant cell arteritis (GCA) may be either abrupt or insidious. GCA may begin with constitutional manifestations such as anorexia, fever, malaise, myalgia, night sweat, and weight loss. These prodromal symptoms may occur for a few days and may even stretch out to weeks.

The most commonly reported symptoms in patients with GCA are as follows:

- Headache (initial symptom in 33%, present in 72%)

- Neck, torso, shoulder, and pelvic girdle pain that is consistent with polymyalgia rheumatica (PMR; initial in 25%, present in 58%)

- Fatigue and malaise (initial in 20%, present in 56%)

- Jaw claudication (initial in 4%, present in 40%)

- Fever (initial in 11%, present in 35%)

The headache of GCA has no pathognomonic features, but typically—and most importantly—the headache is either new, in a patient without a history of headaches, or of a new type, in a patient with a history of chronic headache. The headache is usually localized to the temporal or occipital area. Less often, the pain may be predominantly occipital or occipitonuchal; occasionally it is diffuse.

The headache is usually throbbing and continuous. Other descriptions of the pain include dull, boring, and burning. Focal tenderness on direct palpation is typically present. The patient may note scalp tenderness with hair combing, or with wearing a hat or eyeglasses.

Patients with mild GCA may complain only of generalized muscle aches and pains and unusual fatigue. These may be mistaken for symptoms of PMR.

Jaw claudication is noted as fatigue or discomfort of the jaw muscles during chewing of firm foods such as meat or prolonged speaking. Jaw claudication is almost pathognomonic of temporal arteritis, and it is a result of ischemia of the maxillary artery supplying the masseter muscles.

Nonspecific symptoms of cough and sore throat occur in 17% and 11% of patients, respectively, but are rarely the presenting complaints. Amaurosis fugax occurs in 10% overall (initially in 2%), and some degree of permanent visual loss occurs in 8% (initial symptom in 3%)."

I have a reference somewhere with a paper on these presenting features on another computer - but that says enough to show that GCA headache DOESN'T have to be the headache from hell - although it might be. A quarter of GCA patients never have headache bad enough to complain of.

How long have you been on pred? What are the visual disturbances like? Where do you live (order of magnitude)? Have you seen an optician?

[brightonbella in reply to PMRpro]

Thank you so much Pro.

That description fits my symptoms.

2013 started to feel really tired and caught every bug going. Coughing a lot. Seen chest specialist . No idea what's wrong.

Hips, jaw and neck got more and more painful. Had fever.

After repeated visits to GP she diagnosed PMR started me on 20 Pred March 2013.felt amazing. Down to 17.5 psychotic ! Down to 15 ok.

During autumn got down to 5 and felt dreadful, no energy.

Rang your wonderful helpline and was advised to start again.spoke to GP and went back on 15 3 weeks ago. Inflammation reduced headaches visual disturbance worse.

Saw dreadful Dr at Brighton hospital who wantse to reduce steroids again asap as been "on them a long time" 12 months!

I had cataracts removed in 2012.

Prior to that I went to Moorfields as had 'snow vision'. Consultant said the only people other than me who have yellow version are usa marines who served in Vietnam!!! No course of treatment.

I use fake tears since cataract op.

[brightonbella in reply to PMRpro]

Saw optician recently

[PMRpro Ambassador in reply to brightonbella]

How recently and did they examine the back of your eyes? An eye-test alone isn't enough, they must examine the optic nerve for AION signs and that usually needs eye drops to dilate the pupil.

I'm really not sure what to suggest - experience suggests that the SE corner of the UK is particularly bad for ability to diagnose GCA - as runrig says she went to the dark north to get a diagnosis. There is a good group in Chertsey (support group and doctor) but that's hardly next door to you though I would travel there to see that rheumy.

Has anyone in the Brighton area got any ideas? Have you another GP in the practice you could try before trying A&E?

[brightonbella in reply to PMRpro]

My usual GP is back from maternity so will go back to her; she made PMR diagnosis. Useless rheumatologist said he'd send me to an otha

[PMRpro Ambassador in reply to brightonbella]

An eye specialist? Why didn't he then? Yes - hotfoot it to your apparently more sensible GP.

[brightonbella in reply to PMRpro]

Forgot to mention sweating from head that is so bad have to wear a towel turban. I am post menopausal according to gynaecologist.

[Runrig01]

Hi Brightonbella, I have had PMR for over 3 years, I am now 49 years old. I worked with this for 14 months before being diagnosed and given Pred. I work full time in a busy ward doing 3 x 12.5hr shifts. Do you have an occupational Heath nurse? I found OH to be very helpful, I work a maximum of 2 long days in a row, then have at least 1 rest day. Like you my boss is very supportive, once on steroids I found the pain manageable, but still find the fatigue and sometimes stiffness difficult. I'm concerned of your mention of jaw pain as that is not a symptom of PMR but can be a sign of GCA which needs much higher doses of Pred, I could not picture my life without work, I even worked with a broken ankle pacing the ward all day. Perhaps you could agree to reduce your hours, working less days or less hours in a day. You need to focus on what you can do at work and not on what you can't, remaining positive is half the battle. Good luck, I agree it is a good idea to take someone with you to your tribunal ?x

[Runrig01]

If you are having jaw pain, headaches and visual disturbances I would be hot footing it to A&E. Patients have been diagnosed with GCA without the headaches. I have battled with Rheumys for 22 months with GCA type symptoms and been dismissed due to age and normal bloods. I seen a top specialist in Leeds last week who informed me despite normal bloods and age, I definately have a vasculitis and most probably GCA. I am currently waiting on MRA next week. I had a biopsy 10 months after starting steroids which was negative. I know I'm now in good hands and can see light at the end if what has been a very long tunnel. I would not wish my last 2 years on anyone, please get checked out, you have nothing to lose and everything to gain. Take care x

[brightonbella]

Thank you so much.

[mickt]

Hi I had to be ill health retired in march last year,im not typical pmr ,gca,type 1 diabetes ,addisons disease and sticky blood hughes syndrome,and vitiligo so that's 6 chronic illnesses.I empathise with all on fatigue stiffness ,the devils drug pred.I had amourosis fugax as pmr pro has said its quite rare I had flares with double vision and needed 2 courses of 6 of cyclophosphamide.I take my hat off to runrig who still works its great that she can.I like her was only 50 soz you were 49 and took a while to dx.If you have oh use them,as pmrpro said gca is covered under disability equality act of 2010,your employer has to try and make reasonable adjustments to help keep you in work.In my case I was a shift worker heavy manual job,employer tried to find me office work but none available so pensioned off with top award ,I am lucky that I had pension .Pmr/gca is hitting people of a younger age who are still in the workforce.Good luck and better health to all.!!!

[Hidden]

Brightonbella,

I can only echo the excellent advice already given to you by others. Runrig and myself have been keeping each other sane over the past year whilst we searched for answers to our symptoms and sympathetic, knowledgable Dr's.

Your health and career is far too precious to let anyone mess around with. If you are getting no where with your current Rheumy then ask for a second opinion, hopefully from someone with a more open mind.

I hope you manage to get everything sorted out.

PS PMRpro, I had to giggle at your use of the word " numpties ", indeed they are and unfortunately an increasing number of Rheumy's fall into that category!

[PMRpro Ambassador in reply to Hidden]

Don't they just! "You have to have headache with GCA", "PMR isn't painful", "PMR lasts 2 years and if it is longer by definition it isn't PMR"! ...

[allotment-lover]

I had GCA and never had a headache at all. I did get visual disturbance two days running, plus jaw pain, rang 111 who sent me to A&E to be seen within the hour. I was started on steroids right away and told I was lucky and could have lost my sight, so don't delay doing something about it! Good luck

[brightonbella]

Thank you for kind thoughts.

I moved to house with nice size gardens and was looking forward to becoming a gardener but have only managed a few pots and garden is a disgrace. I'm right next to allotments and was hoping someone would give me advice on low maintenance garden.

[Rjw2014]

I have GCA confirmed by biopsey and hVe only ever had fleeting stabbing pains in my head and around my eyes, along with scalp tenderness and most of the other vague symptoms. However I have a good rheumatologist and have had good care from ophthalmology, who were the folk who did the original diagnosis.

[brightonbella in reply to Rjw2014]

Having good Drs seems to be the key . I'm not happy with people I've seen over past year.

3 different Rheums the good the bad and the ugly!

1 useless gyear

I good maxio facial;1 in a big hurry no idea who I was.

Trauma and orthopaedic rubbish.

At least the dermatologist was good!!

Thanks for motivating me Rjw

[Mischevious]

Hi Brightonbella, can I add my experiences to the other advice that has been posted. I also think that your problem sounds like GCA. Mine started with a general fatigue, feeling of pressure in the temple area which was unpleasant but not unbearable, painful jaw and scalp tenderness. The tenderness was not when I was brushing my hair, I do not have enough for it to need to be brushed! The problem for me showed in the shower, water falling on my head was most unpleasant. Fortunately my GP was well switched on to the possibilities and sent me to hospital where GCA was diagnosed. I spent a week in hospital followed by a further nine weeks off work, returning when my symptoms were under control. I do not remember exactly, but think that I was still taking 40 mg of Prednisolone each day, having started at 60 mg. Like you, I teach, although adults, not children so talk all day and did not have any great problem doing so when I returned to work although I did get very tired at first. The key for me has been the very slow reduction of Prednisolone, I have not needed any since September.

I hope this helps, work certainly is possible once the medication does its job. I had to see an Occupational Health Doctor before I returned to work, he said that he saw no reason why I should not regain my previous ability. It is not likely to be quick, I was diagnosed three years ago, but at least you can have hope that you will get over the problem.

[brightonbella in reply to Mischevious]

So glad to find so many lovely people willing to give their time, spent the last year completely confused!

Motivational post Mischevious, thank you.