PMR & GCA Remission?

[Theresah]

Can I ask if anyone has heard of PMR & GCA going away on it's own without treatment?

If not, how long could you be in remission for?

[PMRpro Ambassador]

First of all, there is no "treatment" for PMR - the pred doesn't treat it, it allows you to manage the symptoms to allow a reasonable quality of life until it does burn itself out. It is unlikely that using pred makes any difference to how long the underlying autoimmune disorder that is the cause of the symptoms we call PMR will last. The pred isn't acting on the mechanism of that disorder in any way - like antibiotics killing off a bacterial infection for example.

I have heard of people for whom it has burnt out in a few years or they have used diet to manage it to their satisfaction and claimed it has gone away. The medical literature often says it burns out in a couple of years - maybe it does. I haven't come across many for whom that has happened - maybe half a dozen at most on the forums and all had been taking pred but were able to reduce fairly steadily to zero with not too many problems.

All I can say is I first had the symptoms of PMR over 10 years ago and had it fairly mildly for over 5 years, managing it to keep mobile with aqua aerobics, Pilates and yoga together with frequent visits to an osteopath and Bowen therapist. It cost a fortune and I was never pain-free, just acceptably mobile as long as I could use my car. That wasn't out of choice - my blood values are "normal" and I was "too young" to be considered for PMR. Then it flared big-time and after 6 months of severe pain I was tried on pred - instant miracle in 6 hours. Since then I have had 2 major flares, as bad as the first time, but am now down to 5mg pred and feel well and am active. There are still things I can't do but in general life is good.

So mine hasn't gone away in well over 10 years - and it was probably going on even before that. I suppose it may have faded a bit while I was on pred but it did flare twice so it probably wasn't fully in remission.

I know 2 ladies on another forum who have had PMR twice, for each the second episode has been totally different from the first. They had about 3 or 4 years between the first burning out and the return of the symptoms. They used pred on both occasions but their experiences were different. Both have now been off pred for a year or two after their second episodes burnt out. Both suspect overdoing it led to the relapse and are determined to avoid another go.

So no real way of knowing how long it will last or when it will come back. A majority of patients have one episode and don't get another, maybe a quarter have it twice.

[DorsetLady PMRGCAuk volunteer]

Hi theresah,

Is this a hypothetical question, or do you have,or know someone with symptoms?

Either way, PMRPro has answered, but, if it's not hypothetical then you could be walking a dangerous line, especially with GCA.

I think had PMR which morphoned into GCA, although it could have been GCA from the outset, job to tell! Anyway to cut long story short it was undiagnosed for 18 months. Diagnosis was finally confirmed when I presented myself in local A&E department having already lost the sight in one eye, which from 1st symptom. I.e. slight blurriness to complete loss of vision was 4 days! I then had to wait 2 weeks on 80mgs per day of Pred to find out if the sight in my other eye had been preserved.

Therefore, I do NOT recommend anyone to consider that GCA goes away on its own without treatment. Nuff said.

[raymck in reply to DorsetLady]

I confirm that too as I lost sight in one eye within 3 days and hospitalised for next 4! Biopsy was positive GCA and 80 mg per day infusion saved the other eye luckily. GCA doesn't go away and 18 months of pred to zero is no fun either. Still lots of pain even post pred but just take painkillers and am thankful for what is left!

[cassey1879 in reply to DorsetLady]

I agree

[Celtic PMRGCAuk volunteer]

Theresah, well if anyone does exist who has had both PMR and GCA which have gone into remission without treatment, we are probably unlikely to hear from them as they won't have felt the need to join a forum. Having said that, anyone with untreated GCA that affects the temporal arteries is at great risk of loss of sight, as well as being at risk of stroke and various other serious conditions due to uncontrolled inflammation coursing through their bodies. Some years ago, I did hear of one person who recovered from PMR without treatment but she apparently spent more than a year in bed. In fact, I, myself, spent four months in bed, undiagnosed and in agony, attending hospital rheumatology appointments by ambulance and wheelchair. The only medication I took was small doses of Ibuprofen and Paracetamol just to get me off the bed and to the hospital, although they really had very little effect on my pain. Very very gradually the pain started easing and towards the end of 12 months I felt completely better and was enjoying normal life again. However, that experience was very short-lived, when a different package of symptoms arrived and four weeks later I was diagnosed with both PMR and GCA. So, from my experience, the answer to your question is that, yes, PMR can go into remission without the necessary treatment to control the inflammation, but at what cost to your muscles from lack of mobility, and to the rest of your body.

I am interested in what has led to your question.

[Slach_na in reply to Celtic]

I was interested in your response Celtic re untreated GCA and PMR. Largely because I have normal blood levels, can't tolerate pred. I also have a mixture of eye problems and have been told GCA can't be diagnosed, even through a biopsy. I also have severe arthritis which makes diagnosing the cause of stiff hips, shoulders, neck, etc, difficult if not impossible.

Your answer makes me think again about the management of PMR, which I will do this morning in the warm swimming pool that keeps me going!

[Celtic PMRGCAuk volunteer in reply to Slach_na]

Slach_na, approaching a quarter of patients diagnosed with PMR/GCA never have raised markers of inflammation in their blood. In such cases if a Dr suspects PMR, then s/he may put the patient on a trial dose of Pred. If within a few days the patient experiences around a 70% improvement in their symptoms/pain, then that is usually taken as proof of diagnosis.

In the case of suspected GCA, it isn't true that "GCA can't be diagnosed, even through a biopsy". There are a couple of centres across the UK who are using special scans in the diagnosis of GCA, but biopsy remains the standard test if GCA affecting the temporal arteries is suspected, although it is true to say that sometimes the large cells they are looking for can escape the tiny portion of artery biopsied. However, if GCA affecting the temporal arteries is suspected, treatment should not be delayed whilst awaiting the biopsy - it is vital to initiate immediate treatment with high dose steroids to protect the eyesight, with the biopsy being carried out as soon as possible following the start of treatment.

There are a multitude of causes for various eye problems and you haven't specified what your particular eye problems are, but the bottom line is that if the "mixture of eye problems" is in any way connected to GCA, then treatment becomes urgent and essential to protect your eyesight.

[Slach_na in reply to Celtic]

Thank you Celtic. I am struggling with a number of symptoms which I will discuss again with my GP. I have a cataract causing blurred vision which can't be treated because of uveitis (inflammation of the iris) so I have four weeks of steroid drops for that. The endless possibilities and mixed messages I am getting from Drs do make it hard to know what to do. I have had chronic pain for many years. The new symptoms now are strain when talking, (I had severe pain when swallowing a month ago, together with a headache from hell, and was put on 15 pred for one week, which cured the symptoms which now return in a milder form) neck pain and very stiff hips (I have been given steroid injections this week for bursitis) and an increase in back and shoulder pain. I try to walk and swim as much as possible but cant cope without strong painkillers, which may muddy the waters re diagnosis.

I find this all confusing and wish I knew who I could trust.

[Celtic PMRGCAuk volunteer in reply to Slach_na]

Many of us have found that painkillers, however strong, can do little for PMR, if, in fact, it is PMR that you have. If all your symptoms improved greatly during that week on 15mg then the answer would have been to keep you on that dose for another few weeks and then try to slowly taper it to find a maintenance dose that kept the symptoms at bay.

If you haven''t already been tested for Vit D deficiency, then that is another avenue that you should explore, asking your GP for the appropriate blood test. Many of us have been found to be deficient and have needed a course of high dose Vit D supplementation to restore our levels to normal. Severe deficiency can lead to pain in similar areas to those of PMR.

If you aren't already under a rheumatologist, then you should ask your GP to refer you for an opinion.

[Slach_na in reply to Celtic]

Thank you very much Celtic for your comments and advice.

[30048 in reply to Slach_na]

Slach. I am a amateur but I have had GCA for three years and counting and your not talking and severe head ache sure sound like my GCA beginning. Why only 15 mg for a week? I think I would get different doctors.

[Slach_na in reply to 30048]

Thanks. A rheumatologist might be a good start!

[jinasc]

The short answer is NO. PMR & GCA come when they want and go when they want.

However, if you have been diagnosed with PMR you will have been told to keep a watchful eye for the symptoms of GCA.

PMR whether treated or untreated can lead to GCA and if that is left untreated you will lose your sight either totally or partially and once its gone its gone.

The answer to your second question is 'How long is a piece of string?'

[mega]

I had GCA about 9 years ago which was undiagnosed at the time. My GP and others at the Practice had absolutely no idea what was wrong with me although my blood showed sky high levels of inflammation and I felt dreadful. My GP sent me to the oncology dept at the hospital and I had scans, tests for various diseases and a bone marrow biopsy, which all proved negative. After some months, maybe 5/6 I began to feel a bit better and within another 2 months was completely back to normal. GP and Oncologist happy but still mystified. I have since read that if it doesn't clear-up within a year then it's likely to take four or five years.

4.5 years ago I had another episode, with even more symptoms - dizziness, permanently bright red 'whites' of the eyes, actual fainting at times and could only sleep sitting up and even then, as you know, very disturbed. etc.etc. My doctor (a lovely woman) went through all the same procedures, as did the oncologist - the same man who'd treated me earlier and again, a sympathetic and involved Consultant. My GP, told me I was a complete mystery, unique! She said she'd never had a patient before who she had been unable to diagnose eventually, although there had been one lady a few years ago... I replied that it could have been me she was describing and I was right, it was! Anyway, on one visit to the oncologist he said "of course, we mustn't forget the possibility that it could be Temporal Arteritis". Forget? I'd never heard of it and with all his verbal qualifications, didn't have much faith either. Nevertheless, I was persuaded between them to go onto Pred. starting at 40mgs. It was like a magic potion. That was just over 4 years ago and no matter how slowly I go (half a tablet drop, introduced very gradually every 8/10 weeks latterly) I cannot get below 5mgs.

I loathe the affects long-term use has had on my skin, hair, fat-deposits etc but, although I had problems with my eyes, I shall be forever grateful that I have not lost sight in either eye and also that I have not had the pain of PMR to contend with.

So, Theresah, yes you can certainly have GCA twice but I'm pretty sure it's not very common. I have never been 'in remission' I'm afraid.

I wish you well.

Mega

[peanuckle]

I was diagnosed in 2011 and in treatment (pred) for 2 yrs. Had been in remission for over 2 years and then had a flare up 3 mths. ago. This flare up is more painful and more severe. Back on pred and making good progress. Hope to be off pred by end of summer. I now understand this is a lifetime thing and you have to take good care of yourself.

[Whittlesey in reply to peanuckle]

Agreed, Peanuckle.

best of luck to you

[Whittlesey]

Hi Theresa, unfortunately , no. I haven' t heard of that. Both are pretty serious diseases. The sooner you begin treatment, the sooner they begin to be dealt with and hopefully don't overtake your life.

They are both serious.

May be best to treat them as such.

In the U.S. the hunt for decent well informed doctors can be a long one, but remember you are a person w a serious and you need informed treatment that works for you, no matter how many "tries" at effective treatment occur.

All my best to you

Best wishes for feeling better

Whittlesey, NYC

[lilythecat]

I was diagnosed with PMR two years ago (March 2014). Doc immediately offered steroids and calcium tabs. I said I would go away and think about it - decided not to accept her offer - and yes I was in pain and at times found movement very difficult, especially after resting. 2 years on it has gone and I am so relieved that I am not left with all the after effects of long term steroid use. I excluded all meat, dairy and eggs from my diet and used only extra virgin olive oil and I ate oily fish - still on this diet and I love it! Tried acupuncture and Chinese herbs, - not much help really and left a hole in my bank balance.

Please just take a while before you take the steroids if you can - it does go on its own.

The steroids don't make it go away and give you a lot more things to worry about. Doctors are just trained to think "chemicals".