What inflammation level can be serious?

Thanks for replying. The levels have been up and down like a yo-yo but I haven't kept records. I know it was 86 in Feb 2012 when I was first diagnosed, then dropped quickly to 13 by the 16th Feb when I was taking 15mg, and was zero on 1st March 2012 but didn't stay there for long, maybe 2 months,  I was being checked by my GP (not the hospital) and each time it went up again she increased the steroids then reduced them as the levels improved. There hasn't been a settled pattern to the CRP results. The only constant is that after the initial diagnosis and starting on the steroids I've felt perfectly all right, so I think the experts are a bit baffled. I'm not big (5ft 2ins and 9st) and don't smoke, have no history of heart disease or cancer in my family. I have been having occasional hospital check-ups for the past year but I'm beginning to doubt the usefulness of staying on the tablets if I could manage just as well without them.

It's helpful to be able to hear other people's opinions, so thank you for that.

Hi Marilyn, I can certainly appreciate your confusion re. what's happening with your CRP levels and then the docs response to it. My CRP levels, like yours, were all over the place. After diagnoses of PMR the reading was 96 which dropped quickly to 13 after 20mg Pred. and since then (18months.apx.) are up and down. Just before Christmas, because of the second consecutive elevation, the Rheumatologist decided to order a CT scan just in case there was "something else going on". Of course this freaked me out a bit, despite her assurance that she was sure I was fine -but that she was just being thorough. Result was normal. She says that she will ignore CRP levels for a while. And my most recent reading was 17. Like you, I feel no different, either way. Eileen makes the point that some people may have naturally (above 5) elevated CRP to begin with and she also mentioned some study which showed this, based on a study of a huge sample of patients. Unfortunately for myself, and perhaps yourself, I don't know my "baseline" level. Finally, my doc did not adjust my Pred. dose with regard to what CRP reading was, she just asked about pain. Hope this helps. Best wishes.

 

Your experience sounds very much like mine. I was hoping to stay on 3 mg and even to reduce slowly to 2mg but it is difficult to stick to my own instincts if the consultant advises otherwise. However, I will wait and see what he recommends next month.

It is reassuring to hear of other people's experiences, so thanks for taking the time to reply.

kind regards

Marilyn

Thanks Constance.

Thanks Christina. My GP and then later my rheum did raise the preds when the levels increased, then reduced them as the levels reduced. It's only recently that I've begun to wonder whether the inflammation matters because I feel just the same when I'm taking  3mg as I did when I was taking 12mg, despite what the CRP results are saying.

Marilyn, do you have an ESR blood test as well alongside the CRP test?  If you are feeling so well, then it would go against the grain with me to increase the steroid dose because of PMR when you don't have any symptoms at all.  Providing everything else has been ruled out, I would be inclinded not to increase the dose at this stage, but perhaps remain on your present dose for a little longer rather than just continue to zero Pred.  Perhaps it is just normal for you to have a raised CRP, and after all few of us know what our CRP was prior to succumbing to PMR when well.  My hubby has an abnormality with his blood which points to an infection although he is perfectly fit.  It has been queried a couple of times over the years but he was referred to a consultant and it was decided it is normal for him.

i do have ESR blood test but other than knowing that it was 99 three years ago I don't know what it is now. It seems to be the CRP that is the deciding factor. I think because I had a zero result for a couple of months the rheum is of the opinion that it could and should be zero again. He may be right, but it's a long time coming! I appreciate all the replies I'm getting.

best wishes

Marilyn

CRP is c-reactive protein and is one of the proteins that contributes to the increase in ESR (the rate the red blood cells settle to the bottom of a tube).

Both ESR and CRP are very non-specific tests - but try telling THAT to your average doctor! They indicate the presence of inflammation. But not where it is - and for 1 in 5 of us it doesn't even show that.

I'm quite happy not knowing what my CRP is. Initial diagnosis of PMR was followed by blood test and there was "oh yes, there's indication of inflammation so it probably is PMR" but it hasn't been any part of discussions since.

Maybe in Australia the blood cells settle faster because we are down under .....

The bit about long term damage seems to differentiate between mortality and morbidity in the research. My interest is in quality of life but the medical trials don't seem to discuss it.

"at what point does any long term damage reduce my quality of life" is quite a different question to "at what point does any long term damage become recognised as a medical condition requiring intervention (read medical system cost)". Person centric or medical system centric. Individual or statistic with economic consequences.

I'm fortunate that I've been able to choose non average doctors. One day I may digress into what I think a good doctor does differently.

Hi Julian,

I live in Canada. I have been suffering with sore arms an shoulders and stiff hips since Dec. 2014. I have been working with a naturopatha and an acupuncturist. I have been doing green organic blender drinks, lots of turmeric drinks and hot showers to control my pain. My worst complaint is waking up every hour every night for the last 50 days.

i go to my GP on Tues for the first time. I really don't want to take predniston but am disappointed that all my efforts so far have not helped yet.

Have you been diagnosed? How are you dealing with your symptoms?

good question Pam, I hope you don't mind if I ramble ...

diagnosis was April 2014.

I was traveling in a motorhome (RV) through Asia on the way home to Aus. Symptoms appeared in Nepal in November 2013. Not much opportunity to stop, and not much chance of effective medical help from doctors not used to obscure symptoms such as I had. I'd noticed some stiffness prior but starting to clean and polish the truck must have triggered something.

Turning over in bed was the stuff of screams. Putting on a t-shirt was an interesting challenge. Changing gear while driving was awkward and painful. Getting in and out of the vehicle was a challenge.

Basically I adjusted how I went about things. I found ways of minimising the effect. Obvious things like using one arm to lift the other. I always looked a long way ahead when driving but would take more time for gear changes. Sight seeing trips were made shorter. Use local transport where we used to walk. Keep as active as I could without exhausting myself so I would sleep. Little things like passing my passport to immigration at a border - make them reach for it, not me. In the dim past I'd learned a few relaxation techniques which I resurrected. Memories from pain management, tricks like bundling it up and throwing it out the window can sound silly but provided some relief. We were used to walking up steep hills to see what was at the top, we still tried but were restricted, in time and height. Sounds silly, but shorter strides meant I could walk further as I wasn't straining against the stiffness at the top of my thighs. Most frustrating as we'd been looking forward to some trekking in Nepal. Totally drained on return but the sleep was welcome.

We free camped most of the trip but had headed for a campground in Pokhara. We have a hot shower on board but its a bit restricted. Like you, the bliss of the limitless campground hot shower provided a lot of relief. And a sense of achievement when I could wash my hair!

Ali was traveling with me. We tried Ali driving but not having a steering wheel to hang on to made things worse for me. Instead of stretching for things Ali would reach. The truck was already reasonably ergonomic (back operation 25 years ago taught me a bit about design). Drawers instead of cupboards that had to be reached in to etc. Just stirring a pot on the cooker and drying dishes became a problem (who would pass up an opportunity to stop) so some tasks passed solely to Ali.

We thought long and hard about driving into India then back to Nepal and decided yes. The alternative was to sit in Nepal and wait for the planned date to enter Myanmar. We changed our pattern from driving every day and sight seeing to travel one day and sight see the next. And added days off.

A near disaster was the beginnings of an electrical fire which needed the battery disconnecting. Scary moment while I wondered if I could actually do that or would have to watch the truck burn. Concentrating through the pain for the couple of minutes required to disconnect was a well remembered challenge. Amazing what we can do when we have to. I'd worked out I was stable, not getting worse, but not getting better, whatever it was. So I also new that at least for a short time the pain wasn't causing damage. Mind over matter I guess.

I've had some previous practice at managing chronic pain. I guess I was comfortable at the thought of managing more.

I'm also very independent. I've learned to ask for help.

Mentally we are both quite robust and objective. In an already stressful life it was just one more thing added to the mix that had to be worked with. We discussed and juggled and adjusted to what we could and couldn't do. Discussed abandoning the truck and flying home but decided since it was stable and manageable, albeit with some distress, we would continue. Hard on Ali so frequent conversations about what was happening to me which in turn helped.

I tried a doctor in Kuala Lumpur. He missed the bi-lateral bit and diagnosed one frozen shoulder. Provided non-steroidal anti-inflammatories which took the edge off the pain and helped sufficiently to go back for more. Allowed me to pack the truck up for container shipping over a couple of days in hotel car park - lots of willing help from hotel staff

We returned to Aus in April 2014. My daughter understood what sort of GP I would need (a thoughtful holistic one, not a mechanical pill pusher, strangely, probably female!) and organised an appointment for the day after we landed (we flew, truck sailed). Diagnosis was within 10 minutes of thinking and great care taken with the initial high pred dose and reduction over a few days with holidays in between. Within two days went from having to think about whether I really had to crawl up stairs in daughter's house to running up three at a time (not bad, I'm 65). Blood test had elevated CRP and ESR which helped confirm.

Ali and I were both a bit relieved that we had a diagnosis that seemed to fit.

Since then most of my problems have been with the pred side effects. The effect on my mind. The floaty detached feeling, the mood swings, frustrated and angry, short term memory effected, loss of concentration, etc. Though I enjoyed some of the pred highs. Tiredness still reduced what I could do in a day so found a pace that suited.

I'm down to 6mg currently. Side effects have subsided. Did get to 5mg but swollen leg with hint of shingles, 25mg for a couple of days then back to 6mg.

After all the above ramble its really rock and a hard place. Pain or pred. While I managed pre-diagnosis I can't say I enjoyed it and the pain really was excruciating and debilitating. I'd probably reached my limit by the time we got back to Aus. It wasn't sustainable for much longer. But then the challenge became managing the effects of the pred along with the tiredness. Out of the frying pan into the fire.

The thought of long term damage has really been secondary for me. It arose from trying to minimise the pred.

While it occurred to me to stop the pred and go back to managing my life with pain, for me a more predictable easier to manage place, I decided to remain with the pred.

Really I'm lucky. It was only 6 months of pred brain that I've had to manage my way round. Warning Ali that "I feel like an unexploded bomb" helped me not explode.

I retired about 10 years ago. A friend offered me some work on my return which I took on. Longer than I expected. Without the pred I wouldn't have considered it.

I'm currently not as active as I was before symptoms, but fairly active, and energy levels are on the rise. Not sure if its the probiotic yoghurt we now make or air temperatures that have dropped below 30 deg C but a bit of a step change in the last week or so. I'm hoping its permanent.

"Maybe in Australia the blood cells settle faster because we are down under ....."

or maybe they float to the top?

A study is being considered looking at QOL. A paper was published recently which has looked carefully at impact of PMR on patients on the basis of face-to-face interviews. They have cone to some very good conclusions.

Quite the story! My pain is not so debilitating. I walk every day. I meditate - and can relate to gathering up and getting rid of the pain. I use several similar visualizations. I have just bought a Migun mat - uses infrared heat. I can lay on it or lay it over my arms. i've only tried it for 2 nights (and days). i am careful about what I eat. My niece is a naturopath and has given me naltrexone 3mg - a more natural anti-inflammatory and pain reliever. (Acts similar to prednisone but without the side effects and takes longer to bring relief.) This is definitely the most challenging situation I have had to deal with in my life. The thought of permanent damage, or condition worsening instead of getting better is stressful. Waking up every hour at night I know is not healthy - but so far my mood is even and each evening I have hope that tonight will be different. Thank you for sharing. Pam