PMR more than once?

[Janll]

I've been diagnosed with PMR for the second time in 13 years. Who else has suffered more than once? I would really like to hear from you.

Jan

[steppers]

I have been diagnosed with PMR three times now. The first time I was in 2009 and I was on Prednisolone for 15 months. Four years later it came back again and I was put on Prednisolone for 15 months again. Two months after being off Prednisolone it was back again and my GP insisted that I start on 20mg again. This time we are trying a slower taper of 21 months and I am half way through this now.

[Janll in reply to steppers]

Were your symptoms the same each time?

[steppers in reply to Janll]

They were very similar, but less severe. Although as the second and third time, I recognised what was happening, so I knew there was a treatment available. Therefore I wasn't terrified, as I was the first time.

[podo]

I was first diagnosed in 2003, finally got off the Pred in 2006 & then had a recurrence about 1.5 years later. Since then I have had four other similar events. A consultant that I saw recently describes my condition as "Refractory Polymyalgia" which means "obstinate or stubborn". Apparently this condition affect about 5% of PMR sufferers, so welcome to an exclusive minor set of the "club that no one wanted to join"!!

With any luck yours may finally clear but at least if you can get to a low Pred dose (5mg or less) then you should probably accept this as your lot. I'm currently on 5mg but hoping to reduce this a bit - but VERY slowly, aiming for 4mg by the end of this year.

Best wishes.

[PMRpro Ambassador in reply to podo]

Has he made any other comments about refractory pred? I decided some time ago that is what i have (after nearly 13 years and 8 years of pred what else can you call it!). I don't have a rheumy - my GP is rheumy-trained but I educate her about developments in the field since her English isn't up to reading the majority of the publications - but the Head of Medicine at the local hospital is my specialist go-to as GCA is his hobby and when I see him we talk about PMR/GCA and he prints off the latest stuff in the journals! We actually now have one of the top PMR/GCA people in the world as the Regional Head of Rheumatolgy so I imagine I may meet him sometime.

[podo in reply to PMRpro]

Hi PMRpro, that was my consultation with Dr Hughes at Chertsey, I had a very good session with him & he agreed that my PMR probably had some GCA involvement initially but as that was 14 years ago probaly not significant now. He advised me to stay at 5mg (current dose) or maybe try to get to 2.5mg. I'm going to try this but VERY slowly. May not reach that level for a further couple of years or so! Meanwhile am researching Cortisol production to see how well my Adrenals are working. May ask my GP for a Synacthen test, what do you think? My long term aim is to get off Pred altogether but if I can't then at least the lowest possible dose.

[PMRpro Ambassador in reply to podo]

5mg isn't bad really though I see what you mean. How do you FEEL at 5mg? I got there and felt good, 4mg was OK but alternating 4 and 3 was not! The fatigue was horrible - though I don't think there was much in the way of PMR involved.

My personal feeling is that if you can continue downwards using something like DSNS and feel OK then the adrenals are doing something and it will take a fair while off pred altogether (at least a year) before you feel really well. On the other hand, if you repeatedly hit the fatigue wall at a point below 5mg then a synacthen test may be worth it - because then you at least know whether keeping trying is worth the effort. If the adrenals can't produce the cortisol in the first place then all the stimulation in the world won't help.

[podo in reply to PMRpro]

I feel well at 5mg but then I always feel fine whilst on Pred (except for fatigue) until another flare occurs. At 78 maybe I'm expecting too much. If my GP won't fund a Synacthen test then I gather there is a DIY test using saliva that can be done by post. Have you heard of this?

[PMRpro Ambassador in reply to podo]

No - that is "just" cortisol. The synacthen test requires an injection of ACTH and measuring the cortisol levels before and after it so you need a doctor to order it. The ACTH should stimulate the adrenal glands to produce an amount of cortisol and if that doesn't happen - they probably are unable to do so. They may produce less than normal if the patient is still on pred but they should still produce some. If they are able to produce some it is a sign it is worth still trying to reduce - if they don't then you have to accept they probably won't recover even if all the other bits are in place and functioning (pituitary, hypothalamus etc etc) and you may need a slightly higher dose of pred eventually.

[podo in reply to PMRpro]

Thanks for that, am seeing my GP Tuesday so will see what he says.

[trish29 in reply to podo]

Hello podo, PMRpro and Janll . How interesting to see Refractory PMR in the posts and to see that podo is with Dr Hughes and has had PMR for a long time..Refractory PMR is what i have and Dr Hughes is the only Medical person to put it in writing, and i have had it over 13years now . I spent many of my early PMR years going to Epsom Hospital but never getting answers and never getting to remission but a couple of times i was on 5mg steroid for a good while until another flare occured. Eventually through my Osteopath i was put in touch with PMR/GCA Meeting Club of Chertsey and nearly a year later i was able to see Dr Hughes for the 1st time. I have never looked back with Dr Hughes but never getting free of PMR and last Friday7th April i was fitted in an extra appointmemt by him because my legs keep flaring and i can't get below 14.05 but i need to get to 12.O5mg without extra problems. My son took me to this appointment and was pleased to meet the man himself . Dr Hughes said that i have an infection Cellulitus and put me straight on to 3 weeks Antibiotics and a Depomedrone injection into my Butt to relieve the pain in my upper body, Upper arms, shoulders and base of neck ..i am now on 15.05mg steroid and see Dr Hughes again on the 4thMay,my original appointment ..i'm sorry this is a long post BUT i have seen so many Doctors ,locums since September last year and Dr Hughes himself in January this year,i have been screamimg with pain and Not been listened to. My point is to anyone suffering Please get help Don't suffer the pain. I apolagise All the time for what i have and often just wan't to hide away but usually after a rest i shake myself up and look forward to later in the day when i feel better. My only help and short term relief is with a very understanding Bowen Therapist and my lovely Osteopath who this week gave me ultrasound to the painful areas but not touching my sore legs.. Bowen Therapy on hold for a while .It's good to know that PMR /GCA is getting more research done but We as sufferers need Medications to get us through the pain..wishing you All a Peaceful and Pain free Easter trish29

[podo in reply to trish29]

Sorry to hear your story Trish but you're in good hands with Dr Hughes, all the best,

podo

[Janll in reply to podo]

I'm not sure if I feel relieved that I am not alone with reaccuring PMR or depressed. I've already done the DEPRESSED, so it's ' relieved' for me, I've decided. I don't really want a Life Time Membership to the exclusive club but until the research discovers some answers we take what we are given. Thanks podo for your helpful reply.

[BettyE]

I have had PMR twice. First time was clear in three years, second took five. Have now been ok and not taking prednisolone for ttree and a half years.

[Janll in reply to BettyE]

Good for you BettyE! 😊

[Chihuahua1]

I have had it twice so far. The first time it settled and I was off prednisolone after 6 months and was centred around the hips. The second was after about i think 18 months and was centred around my neck and shoulders. Same type of symptoms such as severe pain in the large muscles of the affected area and a feeling of brain fog, short term memory issues etc. The second time has taken longer to wean off the pred, with flare ups and readjustments all along the way. You are never guaranteed to be free of it once you have had it. There is no cure, only remission. You may go into remission and never have it flare again, which is brilliant, but you are more likely to have a flare up of the condition somewhere along the way. There is no cure because no-one knows what causes it in the first place and so all they can do is treat the symptoms and not the disease. Hope this helps.

[Janll]

Chihuahua1, I don't like what you said but I accept it, relucktantly. It certainly is making a difference at how I look at PMR in general and my current symptoms. I will still try to get better but not beat myself up if I don't get what I want, when I want. Thanks to you and all of you who have entered into commenting on my post. 🌺 Jan

[trish29]

Hello janll.. Good for you that you won't beat yourself up. That's what i tell myself everyday but it's other people that Beat me up because they expect more of me but i have been so ill lately that i have had to put my foot down .These last flares have attacked my upper body as well and at times i struggle to lift a cup so i have now let my 2 cleaning ladies take over and do more . It's not Always done to my standard but what the heck. I need to rest more and know it. My partner isn't able to do as much as he could so extra help will be helpful. I even get help now with my heavier Laundry .Give yourself lots of TLC . Best wishes trish 29

[Janll in reply to trish29]

Trish, you sound as though you are suffering much more than I am. Sorry to hear that. We can only take one day at a time and be kind to ourselves, love ourselves. If only PMR had a interesting name and then people would/might be more compassionate and understanding and even helpful. It is what it is and we are the ones who have to live in these bodies that are very fragile at times. I wish you a happy day. Easter Blessings to you! 💐 Jan

[trish29]

Yes Janll, i agree with you .I think it's because of that saying.. But You Look so Well..i have heard that so much just lately. The one thing I Can say about my being at St Peter's Hospital at Chertsey was when i first went there from Epsom Hospital the first thing i saw was the very large PMR/ GCA Poster in Rheumatology and i said to myself..I Have come Home..these people will help me. The fact that the poster points out that We are All different and have it differently gave me comfort .One of the GPs at my Practice told me that i'm unlucky to have the Stubborn Type of PMR. I will look out for your posts to hopefully hear of you feeling a lot better . Best wishes and Easter Blessings to You trish29