I am new here

I am new here and was recently diagnosed with polymyalgia rhuematica as well as giant cell artritis. I am on 50 mg of prednisone and it seems to help a lot but I still have alot of pain while at work. I have a job where I stand for 7.5 hours and lift up to 60 pounds. I know this is bad for me and have done all I can short of quitting to make it easier on myself. I am going to ask my doctor to write a note for me so I can be excused from lifting. If that is not good enough then I will be having to leave somehow. Financially it will be impossible to just leave a job. I also have CLL which is monitored. I was diagnosed with that in 1995. Anyone have any insights on what I can expect from this disease. I may also have RA. The pain is unreal at times.

Thanks

Hello Snaggler and welcome although I'm sorry to hear of your diagnosis with both PMR and GCA.

I was diagnosed with both, and remembering how I felt in the early days I know I could never have worked, and I feel so sorry for those of you who have to do so. Is it not possible for your Dr to sign you off sick at least l whilst your body adapts to the steroids and gets the inflammation under control? Several sufferers over on the other forum (link to that site on the home page of this one) have, in fact, been signed off work for a considerable time in the early days of their illness - hopefully, the same will apply in Canada. It must be so very difficult with the weights you have to lift and this will not give your body a chance to recover, in spite of the steroids. Many of us find that particularly as we try to reduce the dose, we have to really give ourselves lots of TLC whilst the body adapts to each reduction.

I'm sure others will be along soon with similar advice and I do hope that you will be able to find a solution and soon. Do take care.

MrsO(Shirley)

Hi there Snaggier!

I have a brother living in Victoria, so you are doubly welcome! Sorry that you have had to find us but hopeful that we might be able to help.

I also have both conditions and while I did work for several years, mine was office based and I could take a break whenever needed. In fact, they took me on knowing I was ill and under treatment and I was treated very, very well by them.

I also had a doctor quite happy to sign me off at times for the more unusual things - like beginning new meds when there is a possibility of nasty side effects occurring. But not by any stretch of the imagination could I have coped with a very physical job.

One of the difficulties with PMR/GCA is that it is a very individual disease; we can all tell how it affects ourselves, but it differs so from person to person that your journey with it is likely to be all your own work and the steroids themselves can sometimes add to the confusing array of symptoms.

The best suggestion is usually to 'listen to what your body is telling you'

make the most of the better days without overdoing things and rest when needed - I found the fatigue which could sweep over me without warning one of the more difficult problems to contend with.

I'm sure there will be others along soon to give their welcomes and support. Do take a look at the other forum - most of us hang out there and there are often a few laughs to lighten the mood.

Nefret (Catie)

I'm sure others will be along soon with more

Hi Snaggler and a warm welcome from me too - although I'm sure you'd really rather not have to have got to know us, albeit virtually!

You have been unlucky to have both GCA and PMR symptoms as that does seem to be an exception rather than a rule. I know MrsK always says she feels glad she \"only\" had GCA without the physical discomfort of the PMR symptoms. I, on the other hand, am heartily grateful that although there is probably something more than simple PMR going on, I do not have anything that suggests my vision is at risk.

What to expect? As the others said, difficult to say really as we are all fairly different. With PMR usually the stiffness and muscle and joint pains subside fairly quickly once you are on the steroids - it is typical for them to respond by about 75% to 15 to 20 mg/day within a week or two at the most and since you are on a much higher dose that should definitely apply if it is PMR. The GCA is a bit more resistant sometimes and getting that inflammation under control is a bit fiddlier.

You say you may have RA as well - is your doctor sure about the PMR? It can easily be confused with LORA (late onset RA) although there is usually less muscular involvement and 1 in 6 patients or thereabouts who initially are diagnosed with PMR have the diagnosis revised at a later point. It isn't know whether the PMR morphs into LORA or whether it is simply a mistaken diagnosis in the first place.

You don't say how old you are - but you have my sympathy for still needing to work. I was lucky, not only am I a translator which means no physical exertion at work, but I am also freelance and my husband earned well enough for me not to have to worry about how much I worked. I could never have coped with getting up and getting to work every day, especially if I'd had to travel by public transport. I had PMR for about 5 years undiagnosed and in the early days was working part-time as a medical technician with my husband on a research project. When I finished I knew that looking for another job would be very difficult as I really found it quite difficult in some respects. Working for my husband gave me a lot of leeway and patients were usually booked for afternoons when things were much easier!

Do you have no sick leave? Are there no disability discrimination regulations - in the UK it is possible to get coverage by them although that is also not easy. Nothing fits PMR for the assessments so you have to demand an expert in the field with appropriate experience etc etc. At least being in Canada you don't have the fear of losing heathcare coverage unlike in the US. A lot also depends on how open your employer is, of course, and what your job involves and your primary job seems very hard on someone with PMR and GCA. The diseases themselves are hard - being on high dose pred just adds to the problems.

If you have a read around this forum you will find lots of posts about how it has affected many of us - and even more at the links MrsO and Nefret mentioned, especially the pmr gca uk northest support site where there are articles from sufferers about their illness, their treatment and their recoveries - the bit to encourage us all!

Do keep in touch now you have found us and if you have any specific questions - is this normal? did you have this? how did you deal with this? sort of thing, don't hesitate to ask. And if you want a whinge, scream or moan - we're always ready to listen and sympathise. :wink:

all the best, :D

Eileen

Thank you all for responding to my post. I have been in pain for a long while, I just kept blowing it off and popping tylenol with codiene. I realized there was a problem when I fell at work and it did not seem to get better. I waited three months of putting it off and then finally went to a treatment center where they took x-rays of my feet and hips. The x-rays revealed arthritis but nobody could tell what kind. Then I joined the health network locally and talked to a nurse named Barb. Told her everything, my struggles, pain, job worries. Etc. Then my gp did some blood tests. Many came back positive and gave the diagnosis of Polymyalgia Rheumatica. The relentless headache did not go away and there is still a big heavy feeling over the right eye. The eye doctor could not see anything but that doesn't mean there is nothing there. The high dose of prednisone is done in the case of GCA. It has made a huge difference for me and I take maybe 4-8 pills a day for pain instead of 18-30 which has probably damaged my liver or kidneys, don't know. I am 49, birthday is in March. There is a Employment Benefits for those who are too sick to work and I might very well go on those as the lifting is a problem for me. 60 pound boxes are just too heavy. Being female they were always too heavy and with this it feels like suicide. I forgot to mention, I have a fracture in my foot that I have no idea how I got. It hurts and I need special orthotics for my shoes due to a huge nodule that has recently grown on the ball of my left foot. My grandmother had RA and my foot has recently turned into grannys foot. :shock: Again Thanks for your responses and I am so glad I found this forum.

Hi Snaggler - I've just replied to your other post on the other thread and I was right there - I had forgotten you also maybe have GCA, sorry! :oops:

There isn't a test that \"confirms\" PMR with \"positives\" whatever anyone tries to tell you - the ESR and CRP blood tests can be very high but all they do is show there is a lot of inflammation present in the body and that can be due to all sorts of things and that includes RA and other autoimmune and inflammatory arthritises. You might also be anaemic - but that can also happen in other autoimmune illnesses. If you had x-rays showing arthritic changes in your feet that suggests there is definitely more than PMR going on. If there is joint damage and there is a chance of RA then the sooner your are tried on the drugs for RA the less longterm damage will be done.

Hope for better news soon,

Eileen

Hello again Snaggler

The \"heavy\" feeling you describe around your right eye mirrors my experience when first diagnosed with GCA and that particular symptom can take a while to settle down following commencement of steroids. However, my head pain disappeared within hours of the starting dose of 40mgs Prednisolone.

With regrd to your worry over any damage that may have been caused to your liver and/or kidney by long term high dose painkillers/anti inflammatories, I'm sure the blood tests you had would have shown this up. If you're unsure then ask for an eGFR blood test to be done on your kidneys - I have only one kidney and suffer from low kidney function and this is the test that is repeated on me every 6 months.

With your other joint problems and family history, it does sound as though you need to be more thoroughly investigated for RA and treated accordingly if necessary.

Do hope things start picking up for you soon, both pain-wise and job-wise.

MrsO(Shirley)