I went to the doctor on Tuesday and described all my symptoms. He seemed to think it was PMR he wanted to draw labs before he ordered the prednisone to see what my baseline was. Well my labs were completely normal. So I got a message from him that since my imflatory markers were normal and my age that that ruled out PMR. I sent him back a message asking if we could try the prednisone anyway. He said that it wouldn't do any good. He would order labs to rule out RA and order x-rays of my hips and shoulders. The xrays are normal except for some "degenerative changes" and calcification in the right shoulder. I haven't seen anything about the lab reseults yet. He said a rheumatologist won't even look at me till labs and xrays are done. The closest rhematologist is 3 hours away. I usually don't have a problem with my doctor and I differing on what treatment I should try for something. All I know is I am miserable.
Did you mention to your doctor that around 20% of people find that their inflammation markers do not rise and stay normal? You may be one of them. Could you push a bit more for just a week's supply of pred as a trial say 15mg a day? I am not sure PMR checks the age of people, as people in their 40s do get it!
I didn't think that I needed to because he even said that he had seen paintents sometimes with their markers sky high and then some as being "almost non existant". I think the big hang up is the combination of my age, being under 50, and the lack of imflatory marker. I see him again on Nov. 15th. I'm hoping by then I can find an article or something about something similar to my situation. If anyone knows of places that I might look let me know.
Small consolation I know but it may be a good thing that you are having everything else checked. Often someone is given pred very quickly, and maybe it works well, but there are other issues so they have to be seen by a rheumatologist or other specialist and then have the added complication that pred is now possibly masking other things. I really really hope that it doesn't take long to have all these things checked out, and that the right treatment, whether it's pred or not, works quickly once you get it. Hang in there! P.S., if you show any of the signs of GCA, especially vision changes, please get thee to an emergency department as your sight could be at risk. Giant Cell Arteritis is a medical emergency as serious as a heart attack or stroke.
I forgot to mention that in the message that my dr sent me telling me it could not be PMR he suggested that it could possibly be a fibromyalgia flare. When I explained the pain to him I told him that it was different from my fibro pain and that my fibro pain was under control.
If I have signs of GCA I will go to the ER. It is a rural hospital. Hopefully they won't blow it off as a migraine. I have been to the local ER before for migraines beforr snd one of my main symptoms is that I lose vision in my right eye. How can I tell if it is GCA related? Is there more than the vision loss to look for?
I am one of the sero-negative PMR people, and it took 8 weeks to persuade my physician that I had PMR. I think that 20-30 % is a more likely ratio of PMR sufferers who are sero-negative. I happen to have a sister symptoms called RS3PE (Remitting Seronegative Symmetrical Synovitis With Pitting Edema). I had it first when I was 52.
Sero-negative is in the title!
These are complex conditions, not fully understood. Many physicians , including rheumatologists, here in the US, are poorly informed about normal inflammatory markers in PMR patients.
One of the diagnostic confirmation tools used is a low dose pred (around 15 mg/day) for a week, and those with PMR/RS3PE will often have miraculous results within 12 to 24 hours of first dose.
Good luck,
Dan
Strongly suggest you google Seronegative PMR and RS3PE to find the articles you can use to help your self diagnosis.
I was 48 when all my pains began, it gradualy got worse that I felt crippled. My GP was reluctant to diagnose me with PMR because of my age and my blood tests were normal, however, he did agree to let me try preds. Well, within 2 days I was a new woman, I could run up the stairs etc. My GP then referred me to the hospital for further tests. They made me come off the preds slowly to see what happened, sure enough the pains returned with a vengeance so they have now been able to formerly diagnose me with PMR. Ask your doc if you can try preds for a week,if it doesn't help then its not PMR, such a simple way of finding out, I don't understand why Docs have to be so awkward. I always say at the age of 48, I am not stupid, I have common sense and know not to abuse the drugs, I am not a silly teenager! Good luck
So frustrating! I would tell him the truth. Go back and tell him how miserable you are and ask him if it would do you any harm to have a short term course to test your response and see it it helped. He's doing the right thing by you in ordering the tests but PMG is unpredictable and hard to diagnose. My GP put me on pred before the tests! Rheumatologist came six months later. Good luck and let us know how you get on.
Has your Doctor suggested any pain relief at all?
One thing I do know is the levels can go up and down as in my case. If your in pain go back and ask for the test again, and talk about a suitable pain relief as you shouldn't have to suffer.
I'm not surprised and he is wrong! Like Dan I am seronegative, have mild RS3PE and definitely PMR which bordered on GCA so is probably large vessel vasculitis - it took 5 years to get to try pred which had a miracle effect in under 6 hours!! Initially though my ESR hovered around 16-18 which no doctor is likely to pick up as being high - but my personal normal is more like 4-7, so 18 is pretty raised for me. So what ARE your figures?
Is there any chance of seeing a different doctor? I know it is difficult in rural areas. How does HE know it will do no good? At least if he TRIED it he could then say "I told you so..." if it didn't work and a week won't do any harm...
If you can't find stuff with google tell me and I'll find some for you but it is a pain trying to post links at the moment.
I already take percocet 4 times a day for arthritis and gabapentin 3 a day, duloxetine 1 time a day for fibromyalgia. But none of these take care of the pain that I have now.
My ESR is 19, CRP 0.30. The waiting list to get into another doctor is about 6 months. Plus I have a good relationship with him on all my other multiple health problems. I am going to push for a trial week of steroids when I see him. I'll keep looking on google and let you know if I don't find anyhing.
If it is PMR - there are no painkillers that work. Just pred which attacks the cause of the pain - but not the underlying cause of the illness.
Go for it and stand your ground. You are only asking for a week's worth of tablets and you may have a favorable result before that. If it does not work at least then your doctor can discount PMR. It is fantastic that you have a good relationship with your doctor, some people have real fights it seems and trying to find a second opinion in a rural area can be difficult, I know!
Just to say that it took me over a week with a daily dosage of 25mgs to get pain relief. Rapidly dropped to 20, made my way slowly to 15. Some people get relief in 24 hours with a dosage of 15mgs. Basically get your GP to give you the amount you may need for a proper trial.
exactly right
I know there are different ways of measuring CRP but I think yours is actually an elevated reading no matter which system is used.
I CRP of .3 or some people say 3 is fine for CRP isn't it? An ESR of 19 is fine too.
I think where I am the level for a good CRP is down around 10. Mine finally got to something like 9 after about 2 years whereupon my doctor said I didn't need to see her again for any tests for a year! They only allow testing either ESR or CRP, not both. We switched about halfway through those couple of years. I think I should suggest that she give me two forms at the end of the year, one with CRP and the other tests on it and another, which I'll have done a couple of weeks later, for ESR. I think it makes sense to see how far I've come (or not) since the beginning.