What happens if Prednisone isn't taken for PMR?

[kp60]

I'm at what seems like a familiar dilemma for Autoimmune conditions: Diagnostic overlap, and treatment plans. For me the crossroads now is: diagnosis (PMR vs RA or both) and treatment plan (Prednisone, and or Plaquenil or?)

I had PMR, and was on Prednisone (started at 60 m down to 0 ) for 1 1/2 years. Aches and pains pretty much gone at that time, and CRP and ESR within normal limits until a few months ago, 4 months after stopping prednisone, when mild symptoms started to resurface. Naproxen took care of pain, except for my little right finger!

Hurt like hell so went to Rheumatologist who repeated blood tests (CRP 14 and ESR 23- both out of range. He said it signified inflammation. All other blood tests normal.). He also took an ultrasound of the painful hand and said "classic RA".

He prescribed Prednisone for a possible PMR flare, and Plaquenil for Seronegative RA.

My questions are: 1) can RA raise inflammatory blood tests too - maybe the blood tests can mean RA, and not PMR? 2) If I have PMR will it burn out on its own regardless of whether or not I take Prednisone? Prednisone was so bad for my body that I don't want to go back on it if it doesn't cause damage to my body if I don't. Since Aleve helps tremendously I'm considering using that for pain instead of Prednisone.

I also need to determine whether or not to start Plaquenil for RA but that's a different conversation.

Thank God for this forum!

[DorsetLady PMRGCAuk volunteer]

60mg is a mighty high dose for PMR…was GCA suspected?

The fact that about 4 months after taking last Pred your symptoms have resumed, sounds very much like it never went away, and now the inflammation has built up again.

A small dose of Pred may well get it back under control - something like 5mg - certainly nothing like the original dose which was definitely overkill for PMR. … no wonder you had issues with it.

PMR will go into remission, but you don’t know how long that will take, nor how much damage the uncontrolled inflammation will do to your body.

CRP and ESR levels are caused by any inflammation - they don’t distinguish what is causing it… so could be either PMR or RA or both. Was your rheumatoid factor tested?

[kp60 in reply to DorsetLady]

Thank you! Hi. No the 60 mg was prescribed by my Primary, but only for 2 weeks, and then started downward - I don't think she knew any better. Yes my rheumatoid factor has been tested several times, and always negative. In fact, MANY autoimmune blood tests all came back negative. I guess that's why he diagnosed Seronegative RA?

But NSAIDs reduce inflammation too? Wonder which is worse for the body - NSAIDs or Prednisone. I asked my RHeumatologist and he said "ask god". !?!

[DorsetLady PMRGCAuk volunteer in reply to kp60]

Last comment very useful!

NSAIDs v Pred? Both can affect stomach -but would say used long term, NSAIDs have more serious side effects…

[darkred in reply to kp60]

NSAIDs are very hard on kidneys. Damage will depend on dosage, times a day taken and duration of treatment (weeks? months? years?). NSAIDs can also be hard on stomach. The rare times I've taken Aleve, I take only half a pill at a time and usually require a cimetidine with it. Not everyone has such a sensitive stomach. I'm still trying to cope with prednisone-induced stomach pain, though taken with food. I hope you have better luck.

[PMRpro Ambassador]

"CRP and ESR within normal limits until a few months ago, 4 months after stopping prednisone, when mild symptoms started to resurface"

What you are describing is absolutely typical of PMR that isn't entirely burned out and in remission. 1mg is enough to keep the small amount of inflammation being created each day under control. At zero pred it builds up slowly until eventually you feel it - like a dripping tap will eventually fill a bucket and overflow.

However - it is also possible that your "PMR" was what is called a polymyalgic onset of EORA/LORA, elderly or late onset RA. It is impossible to tell the difference in the early stages and only when the RA manifests its own specific signs can they see which it is. CRP and ESR are just markers that show there is inflammation somewher, not what is causing it or where it is.

I assume the rheumy saw swelling and/or erosion of the joints in your hands which makes him think RA - and that is absolutely typical:

uptodate.com/contents/diagn....

says "In general, the patient will notice joint pain and swelling that predominantly affects the small joints of the hands and feet (particularly the metacarpophalangeal [MCP], metatarsophalangeal [MTP], and/or proximal interphalangeal [PIP] joints). "

The fact Naproxen deals with the pain suggest it is more likely to be RA - it almost never helps PMR. As to which is better longterm - what works! Pred is used in RA to quickly get control of acute symptoms and isn't usually used over longer periods. You will have had lots of adverse effects having been given such a high dose to start, even if it wasn't for long. I think the chances are that if it IS PMR, you will get away with a pretty low dose, well under 5mg. On the other hand, if Naproxen is working, you do have a choice. It is possible to have both but in both cases it is a case of managing symptoms - no cure as such for either.

Plaquenil is often regarded as the DMARD with the fewest adverse effects though you do need to have your eyes checked before and annually at least. Don't let anyone fob you off on that matter.

[kp60 in reply to PMRpro]

Thank you! This helps inform my decision and I need to focus on managing the symptoms rather than a diagnosis. Like Pottawattamie said for treatment might be worth being guided by identifying the IL6 cytokine and addressing that.

I acknowledge that inflammation, regardless of what causes it is bad. But if I don't take Prednisone for this flare, will it make the PMR worse, if that's what it is? I'm still a little confused as to if there's any huge downside other than pain, to letting the PMR burn out on its own.

[kp60 in reply to kp60]

I guess bottom line does Prednisone prevent the PMR inflammation from building up again, or is it incidental to that process? I "think" it does help it..

[PMRpro Ambassador in reply to kp60]

Pred stops the inflammation building up in your body, yes, But only in the same way a mop mops up the overflowing bucket. It doesn't have any effect on the underlying mechanism that produces the iuflammation. If you don't take pred and it IS PMR, then the inflammation will just build ap, causing increasingly severe symptoms for msot people. But pred will help the symptoms whether it is PMR or RA.

The problem is that there are several different mechanisms causing the immune system to create the inflammation in inflammatory arthritides. Pred works on almost all of them to suppress the symptoms. The other drugs used tend to be more specific and may not work on the version you have and so they start at the top of a list and work down it. The biologic drugs are very specific, only working on one thing, There are a few of each type and they don't all necessarily work for a particular individual so even if they do testing to identify which inflammatory substance is causing the problem, a particular drug may still not work for you.

[kp60]

Very helpful experiential information! I am totally confused by all of the various diagnoses of arthritis. I can see why focusing on stoppint the primary inflamation pathway is most worthwhile in terms of treatment! Thank you for sharing your history!

[kp60]

Ugh. Thank you - so informative,,,,but kind of depressing🥺

[Raewynne]

I know how you feel.It took me 4 years to come off prednisolone for my autoimmune condition. I wasn't told it could relapse .It did.2 years later.I was very upset having to be on high dosages again.100mg to start.Side effects have been devastating but I am alive .Recovering and hoping it doesn't happen again.

I wish there was another drug or more research was done to prevent the side effects Unfortunately I feel we are guinea pigs with it and they have been prescribing it for years!

[perceptual63 in reply to Raewynne]

100mg to start? 😳

That's not a typo, is it?

[PMR_sufferer1 in reply to Raewynne]

Can you confirm.the 100mg statement did you have GCA or PMR or other ?

[PMRpro Ambassador in reply to PMR_sufferer1]

If you look at her profile you will see she was diagnosed with GCA and started on at least 90mg, according to her first few posts.

[DorsetLady PMRGCAuk volunteer in reply to PMR_sufferer1]

GCA looking at previous posts-started at 80mg a year or so later had a flare and according to post took 92mg.

[MissMinto]

I started with RA 25 years ago and then about five years in developed PMR and all hell broke loose. It quickly became apparent that I’m one of those people who cannot tolerate long term oral steroids - they turned me into a suicidal, psychopathic maniac and by all accounts I was vile to live with.

My rheumatologist at the time took the ‘firefighting’ stance and switched to giving me steroid shots in the butt - I managed on 3 a year over a 3-year period and they totally brought the inflammation under control and made it easier to see which symptoms were from RA and which from PMR. It also meant that tapering happened naturally as each shot wore off, until I didn’t need them anymore.

However, steroids aren’t called ‘the devil’s Tic Tacs’ for nothing and the downside was osteopenia revealed by DEXA scan but as I had also gone through menopause at the same time that probably hadn’t helped. Now everything is managed by Rituximab and Zolendronic Acid infusions and weekly methotrexate injections. If I had another PMR flare I’d got for another steroid shot without missing a beat.

[PMRpro Ambassador in reply to MissMinto]

Osteopenia isn't a pathological state, it happens naturally with aging and virtually all of us on the forum would be classed as osteopeneic. I had a score of -1.3 before pred - after 11 years of pred it was still only -1.6, still not worthy of intervention with bisphosphonates. Pred doesn't always result in loss of bone density.

[sassykitty]

My rheumy has had me on Plaquenil for many, many years. It has really helped my PMR. I cannot take Pred due to steriod psychosis. Hope this helps.

[PMRpro Ambassador]

Berg has something of a reputation as a quack. His ideas may be reasonable alongside pred, but not as a replacement for it, If it does work, I suppose you would get off pred wouldn't you? But his aim in life is to make a lot of money from his supplements business.

[PMR_sufferer1]

The main source of carbs we eat are pasta ' rice ' bread and potat[ certainly not veg. Its to do wuth speef of digestion start to finish being as.short as possible.These specific carbs are coverted to sugars in your gut and land on your belly hence weight gain.

Pre PMR and PredI lost

1 1/2 stone in 8 weeks just by cutting these carbs out.