New/No Diagnosis

[vtkim]

Hi All,

I'm new to the site & have found it very helpful to read a lot of the posts.

I'm 54 years old & live in Vermont.

Just over a month ago I woke up one morning with severe pain & stiffness in both my shoulders. I had just returned from a trip & had carried a heavy backpack so I attributed it to that.

Over the next 2 weeks the pain vacillated back & forth between almost unbearable to OK. I finally decided that it must be something more than pulled muscles so I went to the local walk in clinic. After a lot of questions & moving my arms, the doctor said it was possibly PMR and gave me a 6 day course of Prednisone. Unfortunately, he did not draw blood so I have no idea what my sed rate was at that time.

I had lost my primary doctor & hadn't found a new one yet so here I was with this (sort of) diagnosis & starting with a doctor who knew nothing about me.

I finished the Prednisone on a Sunday & was not scheduled to see the new MD until Friday, By Wednesday I could feel the pain creeping back. Imagine my surprise when I woke up on Thursday feeling BETTER, same with Friday.

Then Saturday came & I crashed. My knee swelled up like a grapefruit & I couldn't bear weight that leg. Forget picking my arms up! By Sunday I couldn't take it anymore so the on call doctor called in a new RX for Prednisone.

I had had blood drawn on Saturday (6 days off the Prednisone) which showed a sed rate of 15 but my white count was 17,000. So my new primary is still not sure what diagnosis is because the labs could be skewed by the Prednisone.

Unfortunately I can't get into rheumatology for another 5 weeks so i'm on Prednisone to keep me comfortable until then.

It's been a frustrating month but I get the feeling this journey is just beginning.

I've read that some people have normal sed rates & still have PMR.

Anyone have experience with that?

Thanks for listening.

[Polywotsit PMRGCAuk team member]

Hi there.

Welcome to the site. As this is a UK-based community you need to be aware that some of our experiences will be different because of the differences in the health system. We call prednisone prednisolone, by the way! We would be surprised here if a doc put a patient onto pred without doing blood tests. Essentially the tests are to rule out other inflammatory illnesses such as rheumatoid arthritis. When all these come through negative, then it's time to see whether the symptoms respond to the steroids. The starting dose is generally 15mg a day (it used to be 20mg a day but it seems perhaps most people do just as well on 15.

My sed rates were never very elevated, so I was diagnosed as having 'atypical' PMR, but apart from that all the symptoms were classic. PMR is a shifty illness though that 'mimics' other illnesses.. Has your doctor given you advice about painkillers?

[vtkim]

Hi Kate,

No, my doctor hasn't really told me much of anything except that he's not sure what is wrong with me. He prescribed the Prednisone to keep me comfortable until I can see the rheumatologist.

I know there is "atypical PMR" and that normal labs don't mean that it's not PMR. The only abnormal lab I had was the high white blood cell count.

The strange thing is that 6 hours after my normal sed rate I was totally incapacitated and in horrible pain.

Are you taking painkillers?

Thanks for your quick response & the website!!

[spotshouse]

Mine is "atypical" in that I do not have elevated sed rates. Other than that my doctor calls my symptoms "classic". Yay, I have some class somehow! I take painkillers occasionally, but I can't take NSAIDs.

[vtkim]

I'm sure you have lots of class!!! So your diagnosis is based on symptoms only? Are you taking prednisone? What type of painkillers?

I took lots of NSAIDs before seeing the doctor thinking I had pulled muscles in my shoulders. Unfortunately they didn't seem to help at all!!

[spotshouse in reply to vtkim]

I don't take prednisone. I made a blog post about it. The painkillers I use are hydrocodone. (That's generic vicodin) I don't take it often, but sometimes need it.

[mingie]

Approximately 2 years ago I wakened to find I could not lift my arms because of the pain in my shoulders (what I call my 'wings'). Had two visits for massage which didn't help. When I visited the doctor she said it might be PMR but she would not diagnose it as that. The pain continued for a short time and then again this year the same pains returned. I visited a physiotherapist on two occasions (which did help a little) and after different tests she said it could be PMR so, having had this suggested twice, I made an appointment to the see my GP. Over a period of about 4 weeks I had 13 lots of blood taken (for both haemochromotisis and PMR) and had 8 x-rays and an MRI scan. It was only then discovered that I don't have PMR (see my previous submission).I thank God for that because the pain is horrendous. Mind you, I still have pain but hoping to hear word soon on what's next. Incidentally, I'm 73 years young.

[Hidden]

I developed the symptoms of pmr 15 months ago. The g.p. I saw thought I was cartaily suffering from pmr. She gave me 30mg of pred. It knocked the symptoms out in 3 hours. My own G.P. who did not seem to have any understanding of pmr said he thought it was a wrench injury. He told me to take ibuprofen instead. When I saw an experienced consultant 7 weeks later, he said I had the classic symptoms of pmr and put me on 30mg of pred again. This was 15 months ago. My own g.p. had the good grace to apologise for his mistake. Unfortunately, I am now coming down for the 2nd time. I feel angry at times, but I look at the history of this illness. It seems to me that it was looked upon as being a disease of elderly women and warrented very little research. My blood tests have always been negative. I have been seen by two specialists now who have said that this is not unusual. I am so grateful that more research is being done concerning pmr.

[snis]

poor you..I have R A too ...it's ongoing pain....I have been on methotrexate for 4 years which helped me as I could not walk and my shoulder pain was horrendous ..my knees still swell up like grapefruits !!!after 4 years I took myself off the methotrexate..I did ok ...until last year major stress ....I have taken one lot of methotrexate and have been so nauseated again ..no drink ..no sunbathing ..allowed with it .we cant win with this disease eh ..