pmr and chest pain

[Dianeka]

Hi! I was trying to keep my prednisone as low as possible and was taking only 5mg. I started to take it at night instead of the morning since I was so stiff each morning. I started having a constant dull ache mid chest and on the right side of the back of my chest for two days. I increased the dose to 7.5 mg and am now taking it at noon. The chest pain is gone. I'm still a bit stiff but will see how things go before possibly increasing the dose. It took at least a year for my doctor to diagnose my pmr and I started on prednisone only last April. I don't know if anyone else has had this experience. I complained to my doctor about the symptoms and she didn't seem to take me seriously. I couldn't get another doctor(Ontario)because they won't take you if you already have a doctor. I'm on synthroid for hypothyroidism and, also, I was so ill with what I now know is pmr that I was afraid to fire my doctor and be without one. I missed my Fla vacation because I couldn't even get into the car without help and hadn't left the house by myself in over 2 months .At wits end and very scared I asked my husband to come in the room with me this time so maybe my doctor would take me seriously. The nurse saw my husband lift me to a standing position from the chair in the waiting room and watched me shuffle to the doctor's room. I told the nurse that I didn't think my doctor realized how ill I was. She then came in the room with my husband and me and typed all my symptoms on my doctors laptop. Later when my doctor came in, saw my husband lift me out of the chair so I could show her how badly I walked she offered me a diagnosis. She offered me prescriptions for pain and anxiety as well as a psychiatrist who would come to my home. I refused all and told her it wasn't in my head and that there was something seriously wrong with me physically. She then told me we didn't have a good patient/doctor trust and that I could no longer be her patient. When I left, the nurse helped me on the stair lift with my purse strap around my neck so I could go down the stairs of the building. I told her what the doctor said. She was shocked. By the time we got home there was a message on my phone to go for blood work. I assume the nurse talked to my doctor and she had a change of heart. I was called back to her office and diagnosed with pmr since my sed rate was elevated. In hindsight, at the beginning when my doctor wasn't helping me I should have just gone to the hospital and asked for help. I missed my vacation and thought I might die because of my doctor helping me.

I hope other people don't go through what I did.

[DorsetLady PMRGCAuk volunteer]

Hi Dianeka,

Welcome, but unfortunately your story is not uncommon. Some many of us have been in a really bad place before diagnosis, but now you're here and hopefully we with help you through it.

Although you may want to keep your Pred as low as possible, you need to ensure you are taking enough. No point in struggling through on a low dose, when a rise of just 1mg or 2mg will make so much better. Your PMR will last as long as it's wants to, so it's not a race to get to zero, if you need a certain dose, you need that dose - no good trying to undercut it!

Good luck.

[Dianeka in reply to DorsetLady]

Thanks DorsetLady, I agree that it's a good idea to take the right dose of prednisone. It's a scary drug but when I took so little that it gave me chest pain I realized that pmr can affect your heart. I felt terrible and realized how badly I need enough prednisone.

Cheers! and take care

Diane

[DorsetLady PMRGCAuk volunteer in reply to Dianeka]

Hi Diane,

Its not only a good idea, it's essential!

It might be scary, but most powerful drugs are. Unfortunately the medical profession seems scared of it as well, yet will dish out other drugs like sweeties!

Plus it's not as scary as losing sight in one eye, and wondering for 2 weeks whether the other one will be okay! Got the t-shirt!

[Robinre in reply to DorsetLady]

Great, sound advice.

[PMRpro Ambassador]

There are a lot of people with similar stories - it took me 5 years to get a diagnosis and I worked out what it was myself! There are growing numbers of Canadians on the forums and many of them have had difficult journeys with GPs totally incompetent to recognise what they have.

Otherwise I can only echo what DL has already said - there is no virtue in trying to manage on too little pred. You need what you need and you need it for as long as you need it. PMR has its own rules - and there is not a lot you can do to alter them!

[Dianeka in reply to PMRpro]

Hi! PMRpro, I so agree with you!

Take care!Cheers!

Diane

[SheffieldJane]

What a shocking story Dianeka! Thank goodness for that nurse!

[Dianeka in reply to SheffieldJane]

That nurse is a godsend!....and she should be a doctor!

[Jackoh]

How awful!! What a good job the nurse was there and here's hoping that now you have your diagnosis and treatment things will be on the up for you from here on . Best wishes Jackie x