Dangers of treatment for mild symptoms

[Donaloge]

Hello all.

My PET scan showed evidence of PMR and my rheumatologist wants me to go onto steroids although I have very little pain or stiffness at present. This is to guard against GCA.

If I understood her correctly the options include local injections and Depo Medrone. The rheumatologist also mentioned the possibility of using a sparing agent with the steroids.

So I am faced with the prospect of a “cure” that may be worse than the disease as I am experiencing it at present.

I am particularly worried about the likelihood of my cataracts getting worse. This is particularly worrisome because I have a lazy eye. If I needed surgery to correct the cataract in the other eye and it went wrong. I could find myself with limited vision in the other eye.

I am also puzzled about how if would be known that I was responding to the treatment as my bloods are normal. Possibly another PET scan.

I would much appreciate hearing from anyone who has been in a similar position or who has any thoughts about my position.

John

[DorsetLady PMRGCAuk volunteer]

Hi John,

There isn't a "cure".. just management of disease, and even though you don't have much in the way of symptoms at the moment, if you don't take Pred the inflammation is likely to build up so you do end up with pain. and maybe damage to other organs. And you certainly do not want GCA., a completely kettle of fish altogether.

As for cataracts and lazy eye, both can be operated on, if you lose sight with GCA there is no operation than can help...

In my case (due to no diagnosis so no steroids) it was lucky it was only one eye...and caught in time to save the other. However that was not certain until I'd spent two very long weeks on 80mg pred per day... going to bed every night wondering if I would be totally blind the following day...not an experience I would want anybody to go through.

Bloods aren't always raised, in fact many on here don't have so-called abnormal readings, so symptoms are the key in diagnosis as treating.

So please think carefully about accepting the treatment offered - and don’t necessarily believe all the bad press about Pred.

[Donaloge in reply to DorsetLady]

Hi DorsetLady,

Thank you for your thoughtful and helpful advice, which I shall probably take. However. I do not believe that there is any surgery that will correct a lazy eye in an adult.

Best wishes,

John

[DorsetLady PMRGCAuk volunteer in reply to Donaloge]

Lazy eye -maybe no op, but I was trying to impress the fact that if sight is lost through GCA there is no remedy…

Been there, got the T-shirt.

[Donaloge in reply to DorsetLady]

Point taken!

[Jane424 in reply to DorsetLady]

John, Good luck. Would just like to add to the lazy eye, which I, my mother, my 3 kids and cousins have. Yes, there is an op as Dorset Lady says, but it needs to be done young so that sight isn't lost. I can't think of an op as an adult would help. Hope all goes well..

[Donaloge in reply to Jane424]

Thanks Jane. That's what I thought about lazy eye surgery.

John

[jinasc]

You cannot take a chance with your sight, once its gone, its gone forever.

as a Patient wrote:

The Enigmatic "Prednisolone".

Try not to dislike it, this drug is our "friend"

It is here to help us our health to defend.

When your sight is at stake

You take.

[Donaloge in reply to jinasc]

Thank you for your advice, which is helpful. I shall almost certainly follow my doctor's advice.

John

[PMRpro Ambassador]

Relief of symptoms is the primary criterion - I have also never had markers that are out of normal range.

It is said by experts that unmanaged PMR is 7 times more likely to progress to GCA - and then you have a very stark choice: high dose pred (far higher than ever needed for "just" PMR) or risk total loss of vision - about a 50/50 chance in the days before pred was available.

The normal option is oral pred - not depot medrone which can work well but is rarely used or local steroid injections which are next to useless for a systemic condition so really not sure why they got a mention and certainly are unlikely to protect from GCA. You may find you need a very low dose of pred - under 5mg if your symptoms are so mild.

OTOH, I lived with unmanaged PMR for 5 years before going on to pred. My symptoms certainly weren't mild but they didn't recognise the symptoms, even the rheumatologists. However - whether it is coincidence or not, my journey since pred has been long and complex and that seems to happen a lot in such cases where diagnosis and management are delayed.

It is difficult to say how much inflammation is present - although if it showed on PET it is there - and it does have some adverse effect on body tissues when left alone. Your symptoms must be significant though to qualify you for a PET scan - or were there other reasons for doing one?

[Donaloge in reply to PMRpro]

Thank you for your advice, which is helpful. I shall almost certainly follow the recommendations of my doctor.

The reason for the PET was that I seem to be highly atypical and a diagnosis was difficult. My symptoms fitted with PMR more than anything else but were not a good fit.

The rheumatologist did not want to put me on steroids, with the risks from that, particularly in respect of my cataracts, without greater certainty that doing so was justified.

John

[PMRpro Ambassador in reply to Donaloge]

Cataracts are cataracts - and something like 70% of us develop them pred or no pred. It is also not inevitable that pred will worsen them any more than time is likely to.

jinasc, for example, had cataracts appearing when her GCA diagnosis was made and she was put on high dose steroids. Her optician immediately switched her to reactolite lenses (now called transitions) and her cataracts are in the same place now as then - she's been off pred for 12 years! I had no sign of cataracts when I started pred, albeit at PMR doses although I have struggled to get below 10mg for most of the 13 years I have been on pred, and it was only at my last eye check in December that there were any signs - I am now nearly 70.

They only have to be removed once - and most people I know are delighted with the result, many able to reduce their use of prescription glasses. Something I am looking forward to myself after 63 years of a sore/sweaty nose and ears!!!!!

Out of interest - what WERE your symptoms? If I had a pound for everyone on the forum who was told they were "atypical" I could dine out welll for years! And most of them have a set of symptoms almost all of us recignise. Unfortunately, what rheumies appear to think is "typical" is only found in textbooks - not real life!

[Donaloge in reply to PMRpro]

Thank you for these comments.

My symptoms when I first saw the rheumatologist were:

1. Pain in my right shoulder and difficulty raising my right arm above my head, when I had been sedentary for a while. My shoulder returned to normal after maybe 10 minutes of movement.

2. Pain in my left thigh when sedentary, which also went after I resumed movement.

I have never had any difficulty getting out of bed.

The Depo-Medrone in mid-March practically rid me of the symptoms but they have now returned but only to a degree that is tolerable.

I have had difficulty making a fist with my left hand once.

John

[PMRpro Ambassador in reply to Donaloge]

That IS atypical for PMR - I will grant you that! Do you know what areas the inflammation showed up in on the PET scan?

The injections do relieve the pain but over time the depot releases less and less steroid into the system - eventually it is too low to manage the inflammation. I have to say - I'm not convinced that what you have/had is systemic PMR or that maybe you have had it and it is already going into remission.

[Donaloge in reply to PMRpro]

The scan showed inflammation in my right should and left thigh. The rheumatologist was very doubtful before the scan but the result convinced her that it is PMR. However, she did say that she would consult her colleagues before we talk again.

I hate to think that I might be taking steroids unnecessarily!

John

[PMRpro Ambassador in reply to Donaloge]

One of the criteria for PMR is usually bilateral pain - and I would want to know if that inflammation is just isolated bursitis which it could well be. But she doesn't seem convinced that that is the case either.

Really diagnostic of PMR would be inflammation in the attachments around the joints - that is what probably causes the typical symptoms. PMR isn't the illness itself - it is the name given to a set of symptoms due to an underlying disease process and there are a load. You aren't presenting with anything like the usual criteria . It is possible you might in time - I had isolated problems for nearly a year before I had the overnight meltdown that a lot of patients describe. First my shoulders were stiff - I couldn't sleep with my arms above my head. Then it was increasingly hard to step up during a step aerobics class. and finally I had horrendous claudication pain in my thighs, But both sides were involved every time.

[Donaloge in reply to PMRpro]

I guess I have to trust the doctor’s judgement!

[Susan1705]

The way medics react to both the onset of GCA and a recent flare up shows how serious the disorder is and both my PMR and GCA symptoms are well under control with methotrexate 20mg a week and PMR 8mg.

[Donaloge in reply to Susan1705]

Thank you. That is helpful.

John

[NewtoGCA in reply to Susan1705]

Hi SusanCan I ask how long you’ve been on the MTX and Pred? I’m now on 20mg MTX and 30mg Pred (slow taper). Do you also take a PPI? Have you suffered with hair loss?

[Susan1705 in reply to NewtoGCA]

Hi, was diagnosed with PMR in May 2019 and on pred. Diagnosed with GCA in June 2021 and on 15 mg of methotrexate and pred tapering from 60mg to 10mg by March. PMR symptoms resurfaced post Covid and they upped my methotrexate to 20 and pred to 20, then 15 and 10. By June all symptoms were back under control and am tapering DSNS method to see how I get on. Tolerate methotrexate well, no hair loss and take folic acid 3 times a week. What is a PPI?

[NewtoGCA in reply to Susan1705]

Hi Susan. Thanks for reply. I woke up in Jan this year with shocking headache and lost sight in one eye, now permanent loss and diagnosed GCA & PMR. On reflection realise had PMR year before. On 60mg Pred since Jan but had two flares so struggled to reduce. Have other health issues & triggered more, found it hard. 2 hospital stays with GI bleeds, reaction to Alendronic Acid. Lots of gastric probs and oesophagus. PPI is Omeprazole or Lansoprazole to protect stomach lining. I’m now on gastric coated Pred & MTX injections to bypass tummy. I wondered if you take a PPI as well as I really think these do not agree with me at all!! I take Folic Acid 3 times a week as well. Terrible hair loss 😞