Any Ideas of What is going on with me?

[Trevgrrl]

This is a curious question for me: why does my SED rate go high when I try to reduce pred. from 25 and yet my symptoms seem to be more arthritis than PMR. Does osteoarthritis cause inflammation like PMR? Do I have PMR hiding inside the arthritis? I have been on high pred dose so long that I have gained so much weight and beginning diabetes, yet when I try to reduce I immediately become more inflammed so my SED rate suggests.

[DorsetLady PMRGCAuk volunteer]

Hi,

Have a look at this link, it explains what is inflammatory arthritis and what isn’t.

OA isn’t, so your SED rate must be caused by inflammation caused either by PMR, another type of arthritis...... or by all manner of things!

versusarthritis.org/about-a...

[HeronNS in reply to DorsetLady]

Actually, I'm sure I've read recently that it is now thought that osteoarthritis does have an inflammatory component. From my own experience I'd say this must be so. Every once in a while a finger joint may hurt and become tender and this is the time when the joint starts to get enlarged. I believe while this is happening it's inflamed. Then it settles down and, lucky me, I'm left with yet another knobbly joint, which may be a bit stiff and need to be flexed a lot, but it doesn't hurt the same way.

If it were purely wear and tear I think everyone past a certain age would have it, and not everyone does. And some people develop it at a relatively young age, probably triggered by some sort of injury or even illness as I think the arthritis in my neck started. No doctor has ever suggested it is any other kind of arthritis and it behaves like you'd expect OA to behave.

Now whether it shows up in sed rate, that I don't know. But maybe I should consider whether it is the OA which has meant my various inflammation tests over the past few years have always been somewhat above the optimum, and not just PMR.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

My GP many moons ago informed me that everyone over the age of 50 has osteoarthritis in some measure. For some it’s painful, for others it’s not!

My OA has never caused my joints to react as you explain - I always thought that was a sign of RA.

Most things I’ve read confirm what link to Versus Arthritis site states.

Would be interested if you come across the article you read.

[HeronNS in reply to DorsetLady]

I don't have RA. I've a cousin who does and I have no symptoms anywhere near what she's had over the years. She's had an ankle replaced! My x-rays show typical osteoarthritic changes in the spine, my fingers have herberden's nodes - these are what happen when the finger joints get painful, and it's usually just one joint at a time, and not all the time. My hands have been working on this for over thirty years! When they were x-raying my knees after my tibial plateau fracture they told me there was some OA starting in the knees and unfortunately it was likely to progress faster in the leg which had been broken. My cousin's symptoms were much more acute and much faster acting.

[HeronNS in reply to HeronNS]

Well here's something:

ncbi.nlm.nih.gov/pubmed/231...

med.stanford.edu/news/all-n...

[PMRpro Ambassador in reply to HeronNS]

Interesting - and I wonder if in fact using sufficient pred to keep synovitis suppressed would help avoid OA progression. I was told 15 years ago I had OA in my knees. It was actually due to PMR and last year an x-ray showed I had NO OA to be identified. Long before PMR itself manifested I had a joint problem in both big toes and in my right index finger, much less in the left, that has left the knobbles said to be OA. On enough pred it remains where it is,

[HeronNS in reply to PMRpro]

As I've often posted, my initial dose of pred got rid of all my aches and pains, including all the issues around my longstanding OA. If pred were not such a double-edged sword I'd stay on it at a higher dose forever! I'm thinking that the withdrawal difficulties I experience really are as much OA as PMR, possibly more OA at this stage. Sigh. 🙄

[PMRpro Ambassador in reply to HeronNS]

It would depend what dose I needed. Anything below about 5mg probably has far fewer adverse effects than NSAIDs - which I can't take anyway without adding at least a PPI.

[HeronNS in reply to PMRpro]

I'd say the OA came back somewhere around 9 mg, really can't remember. That was certainly when I had to slow down my taper, and at some point around then I think the hip pain came back. It was only the beginning when everything was so good so I'd certainly have to take more pred than is good. I do not take anything for the OA, except glucosamine. Never have, Not since early days anyway. My doctor had told me to take coated aspirin, but somehow I found out that nsaids interfere with cartilage regeneration so I stopped taking anything. I don't even know how I found out. It must have been in a newspaper or magazine because this is so long ago it was before the Internet provided us with far more information than we would ever need!

[PMRpro Ambassador]

I have to say that I would suspect it isn't PMR at all. BUT, is that increase in sed rate accompanied by an increase in symptoms? Raised sed rate with NO symptoms should not result in the increase of pred.

And for the weight problem - have you tried cutting carbs drastically? It has helped many of us lose weight even on pred,

[Blearyeyed]

So , are you getting such severe feelings of inflammation just after you reduce that you go back to the GP and have your ESR done and it is then high?

Do you have figures that allow you to compare what your ESR is before you taper and then the result for the rise afterwards , so that you can see it is definitely happening as part of reducing your dose and is PMR inflammation increasing?

Do you have Arthritis as well as OA?

There are alot of questions in these increases as you could not be sure if it is just a short rebound of inflammation from PMR or Arthritis that could settle after a few weeks when you body as adjusted to the change in dose.

Or , if it is a reaction to the change in dose on Arthritis activity and not PMR.

Some people have very sensitive autoinflammatory responses to even small changes in the balance of drugs in their system , that may not be an actual return of disease activity itself .

Some people can have autoimmune responses to drug changes that increase overall inflammation for a short period in drug dose changes , which if the pain does not increase alongside it over the following weeks can settle when the body gets used to the dose change.

Some people can have undiagnosed hypersensitivity and autoimmune allergy syndromes and the increase in inflammation can be a hypersensitivity response to chemical changes in the body , which again , may settle and don't require you to increase the Pred again.

If you have found this keeps happening , but that the inflammation ESR rates are not accompanied by increasing symptoms and PMR pain , it might be worth asking the GP to investigate why this is happening , and, if there are other medications that you can take alongside your Pred to reduce this response and help you taper.

They may consider suggesting taking Paracetamol in the first week of your taper , using a steroid sparers alongside the Pred to reduce these reactions , or even a low dose antihistamine depending on what might be the cause.

[gifford7]

Check out:

uptodate.com/contents/clini...

" DIFFERENTIAL DIAGNOSIS

The most challenging consideration in the differential diagnosis of polymyalgia rheumatica (PMR) is seronegative rheumatoid arthritis (RA) presenting in older adults. A variety of other disorders can usually be easily distinguished clinically from PMR [43,46,47]. Limited laboratory testing may be helpful depending on the specific clinical presentation. "

[Trevgrrl]

I've repeatedly tried to go down on the pred. Once a few years ago I was at 14.5pred and feeling ok, but then I had pneumonia and had to increase. I haven't been able to go down since. And guess what the past few weeks I have had pneumonia again. Aside from that I have tried one time to go at 23.5 pred for several weeks, experiencing pain flare ups and all round crummyiness. Tested the SED rate; it had gone up to 65 from 43. I went up on the pred to 30, sed went down again to below 30 and I felt better. That's what makes me think it is PMR. But why does it have to be such a big dose? Now I have gone up some on the pred to 25 and my legs and hips are murder trying to stand up or walk. My rheum. is deterimined it is not PMR, and sometimes I agree with her, because no matter what I am in pain.

[Blearyeyed in reply to Trevgrrl]

You current increase in ESR will because in part by the inflammation you experience from pneumonia.

People do also experience the need to increase doses often higher and for longer to get the same level of pain relief that they originally experienced on Pred with each successive relapse or Flare.

Of course when you suffer pneumonia you may also get a Flare in your PMR symptoms too.

If you are suffering from excessive stress and pain from other conditions that can also increase you ESR without it being a Flare in PMR.

I can't remember , do you suffer from any other Chronic Pain Conditions as well as the PMR and OA , like Fibromyalgia or ME/ CFS , as these can also get worse when your other issues are playing up and they don't improve with Pred but need specific pain medication .

If you have something else , you may find that it is the meds for nerve pain that need to be increased and not the Pred , even if the claim originates in the same places.

[gifford7]

Having a high ESR and normal CRP is highly unusual for PMR. From the previous link:

"Laboratory findings — The erythrocyte sedimentation rate (ESR) can be normal, mildly elevated, or even markedly elevated:

●The characteristic laboratory finding in PMR is an elevated ESR, with occasional patients having values that can exceed 100 mm/hour. In one study, for example, 20 percent of patients had ESR values over 104 mm/hour [31].

●Conversely, studies have found that approximately 5 to 20 percent of patients with PMR have ESRs less than 40 mm/hour [32-34].

Some evidence suggests that an elevated serum C-reactive protein (CRP) level is more common than a high ESR. In two reports from the same group, an elevated ESR (greater than 30 mm/hour) was noted in 92 to 94 percent of patients at the time of diagnosis of PMR, while 99 percent of such patients had an increased serum CRP level (greater than 5 mg/L) [31,35]. In one of these studies, 9 of the 10 patients with a normal ESR at time of diagnosis had an elevated CRP (median 14 mg/L, range 7 to 47 mg/L), although mean values tended to be lower in these patients than in the PMR group as a whole (19 versus 68 mg/L). In another study, only 1.5 percent of patients had an ESR and CRP within normal limits (defined as less than 20 mm/hour and 10 mg/L, respectively) at the time of diagnosis [29]."

DIAGNOSIS

"●Rapid resolution of symptoms with low-dose glucocorticoids. Symptoms are generally 50 to 70 percent better within three days in patients with PMR started on prednisone at a dose of 10 to 20 mg/day, and almost all patients respond completely within three weeks of beginning treatment. The lack of response to initial therapy strongly suggests an alternative diagnosis. Symptomatic improvement with low-dose glucocorticoid treatment can also be seen in patients with rheumatoid disease, psoriatic arthritis, and other inflammatory arthritides."