ERS/CRP normal but pain bad? | Arthritis Information

Hello there,
Oh boy, am I confused again! I had elevated CRP and ESR last month and then was tested again last Friday. Both tests were in the "normal" range. Why was I feeling so much pain and stiffness if my CRP and SED rates were normal?

After the results of the "normal" test, my rheumy went ahead and increased my prednisone dose to 15 mg. I'm feeling so much better.

How could my results be normal and still be in pain? I feel like I don't understand this disease at all. Do I really have it?

Any ideas?

Thanks everyone...
Jannie
Montanawomen

Jannie

Scroll down to ?polymylagia and read the contents.

You will find that ESR and CRP are just markers. 20% of people can have PMR without ever having raised ERS or CRP. After all the other tests for other illnesses are done, the final is a dose of steroids about 15 or 20mg, no more and the re-action to the dose.

The proof is in the pudding, your Rheumy increased the dose and voila, you feel so much better.

You can go to www.pmr-gca-northeast.co.uk and under useful information read the BSR guidelines to diagnosis.
Jannie, you are not alone. I'm one of the 20% that has no signs of any inflammation showing on blood work. I think this is one reason I suffered so long because the specialists were counting too much on these numbers. It wasn't until I started googling my symptoms that I found PMR and started pushing the subject.

It was finally after I took information into my Pain Management doctor that he agreed to start me on prednisone but I ended up having to find a rheumatologist to handle the PMR because the PM doctor hadn't a clue what to do with me. It is sad though because I wonder how many of the PM doctors patients may have PMR and all they are doing is throwing more narcotics their way and injecting them in various places on their bodies to no avail like they were with me.

So don't dwell too much on the numbers but more on the symptoms. My rheumy tried to taper me too fast on the prednisone and that didn't go well at all (I posted about my problems). Good Luck and I'm glad your feeling better.

Thank you so much for your replies. My test numbers do seem to go up and down and sometimes they have no relation to the amount of pain I feel. I am doing much better. I do have to remember not to over do even with the increase in prednisone. As other folks have said here, prednisone is not a cure!

I played in the lake the other day with my friend's grandkids, swam and kayaked. It was wonderful! But the next day, I was pretty sore and tired. Took a walk anyway. It's good to be back in life...

I love this forum and the help you all give.

Gentle Hugs,

JannieRussellcat - are you still seeing your pain management specialist? It might be worth taking the guidelines from the UK support site for pmr-gca to show him - they are compiled by doctors for doctors and if they do apply to many of their pain management clientel it can only be a good thing for the doc. If they have the confidence to deal with PMR themselves and then gain a good reputation with treatment of these symptoms it's a win-win situation. After all, in the UK there are many general practitioners who care for their patients.

MrsEI did take information into my PM doc when I first suspected what was really going on. He put me on prenisone 30mg for 3 days, 20 for 2 days then down to 10 until the next visit. It was like he dangled a carrot in front of my nose only to pull it away. I felt good until I got back down to 10mg and it just wasn't enough. Next visit I was at 15mg again and doing alright but I also visited the rheumy in the meantime and she kept me at 15mg. Well, next visit to the PM doctor and they wanted me down to 10mg again. I told them that a rheumy would be handling the PMR and they were ok with this. I think they can't see past my osteoarthritis and DDD. Also, they won't make enough money off of prescribing me only steroids.

While I was on the narcotics pain meds I had to visit them every 30 days because you can't get refills for these meds in the US. I've weaned myself off of them since the start of the prednisone and plan on asking for Ultram (tramadol generic) for my osteoarthritis pain. This is a non narcotic pain med so I won't have to pay the PM doc every month just to write me a script.

I did try though, Mrs. E. They just aren't very open minded and I think they don't appreciate it when a patient knows more about a condition than they do. Maybe others here could give more insight into this but I don't think the US is quite up on the whole PMR thing as the UK.

[QUOTE=russellcat] (snip)

Hi Russell,

Some Dr's can be like that while others appreciate the input. I'm thankful that my Dr. (rheumy) takes input. In fact, once I told him that I had quite a bit of muscle pain one day and instead of taking 5 mg after dinner, I took 7.5 mg after dinner. I felt better the next day. I asked him if doing that upset the apple cart in hopes of reducing. He said, no... you did just what I would have suggested. Then added, "you're a smart guy, you know what you need".

There are all kinds of Dr.s... some better than others.

Gosh, I'm visiting my Mother-in-law in Young Harris, GA and she has a laptop computer. It's taking me three times longer to type this message. I hate the 'touch-pad' mouse thing.