PMR and Alcohol

Actually, I became ill after about 5 "drinks," spinning world, but no vomiting. And Yes, I was hung over, but the hangover was nothing compared to the elation of PMR pain reduction. My point in this posting is to see if any others had the suspicion that there was an anti-inflammatory affect of relative high doses of alcohol, outside of the direct effects of inebriation. I have recalled this significant event to 2 rheumatologists, one being the chair of the rheumatology department at Mayo Clinic Jax, FL who was the first to confirm PMR probability. All just look at me with vacant looks, like alcohol would certainly make me feel better. It dosen't, it usually  makes me feel worse, with other conditions (osteo). I think that if true, and it could be replicated, then there may be a path for a treatment other than prednisone, If they can isolate the mechanism. But as some of you might agree, I have significant  FEAR of being without my prednisone. I never understood the attraction of substance addiction, until this. I feel like a prednisone addict, and were it not available legally, I would aquire it any way I could. As mentioned in Bio, I'm down to 5 mg a day, after 1 year. I do think the experience was a little humorous, but I have fear of pain around my humerus.  (joke) thanks all...

If you feel fear then the fear is real - no one can tell you otherwise.

However, I reckon you aren't an 'addict' in the normal sense of the word, it's more likely an emotional dependance. As someone who's had alcohol dependance I can tell you that alcohol is an emotional AND physical dependance.

This fear you have - is it related to not having the pred daily or not having the pred at all? Is it related to the side effects of withdrawal and/or the return of PMR?

I've got a little fear about being without pred (am still on 6 mgs, after nearly 4 years)!  However, I often wonder if it would be worth an 'experiment' to come off it and see what happens.  Flares like mad I suppose.😕

flipdover (is that from the white cliffs?)

It is fear of the return to the total condition: pain, stiffness, fatigue, the PMR package. There have been a few very painful events in my life, as most people have had,  that threated almost every aspect of my existence. For me, one of those times was the 8 weeks I was untreated with PMR. 

I have read that we "forget" some pain, as perhaps the pain of childbirth.

I have not been able to forget the PMR experience, perhaps because the remenants of it still linger. From readings here, it appears that PMR is a managed disease, with requisit life changes. Not as my first rheumatologist said " prednisone cures PMR. " 

There is an article in the Daily Mail to day about GCA - where it is pointed out that doctors ignore recommendations from experts.

Your rheumatologist is a prime example because he, of all people, should know that there is no CURE for PMR, although it can be MANAGED very successfully using prednisolone - providing you allow the patient to remain at the lowest dose that manages the symptoms not force them to stop it. But let's face it - with totally ignorant attitudes like that from a qualified rheumatologist there isn't a lot of hope is there!

You don't forget PMR no - but the five and a half years I had untreated and left to get on with it is the reason for the hours I spend at my computer for the benefit of others. If I can educate the patients - maybe there will be fewer such ignorant rheumatologists.

And do I know I have probably contributed to saving the sight of at least a few people by telling them to go straight to a doctor or A&E - where they were diagnosed as having GCA and given high dose pred immediately.

I don't have to wait for heaven for my rewards...

thank you for the reference to  the Daily Mail.  How were you notified so quickly about that relevant article? Just read it.

I see the enormous effort you make here, and I, as others, really appreciate it and thank you!

Normally I would find it myself since I skim through the paper online but it has been flagged up by various people - not least the PMRCAUK charity on its own forums. 

I flagged up the fact that the charity was looking for people with GCA whose diagnoses had been messed up for the paper to do a series (I think) of articles to highlight the problem a few months ago. Not everyone who has gone blind, even partially, is emotionally able to talk to a journalist about such a life-changing experience when it was due to ignorance on the part of the doctor they are supposed to have trust in.

That GP will never miss one again for lack of knowledge - lodger on here has a senior partner in her practice who also saw a patient with GCA who went blind in her early days as a doctor and now makes sure  her GCA patients are very well looked after. 

Eileen, am I to understand that folks with GCA  which results in blindness have NOT been diagnosed and treated for PMR?

It has been quoted that 1 in 5 that have PMR have GCA.

Is incidence of blindness less in those who are on low dose pred? Is incidence of blindness less in PMR diagnosed, since they may be aware of the dangers and report more rapidly to A&E? Does low dose prednisone lower incidence of GCA and resulting blindness?

 Sorry to barrage you with these questions, but  I trust your deductions and information.

One in 5 people who are diagnosed with PMR are later given a diagnosis of GCA - because PMR can be one of the symptoms of GCA. I say CAN - not everyone who develops GCA has PMR-type symptoms because GCA sometimes only affects the arteries in the head - the arteries that would lead to PMR symptoms are not involved. Sometimes people present with headache, visual symptoms, jaw pain and so on - no stiff shoulders and hips to suggest PMR. The flu-ey feeling and low grade fever are common to both as are some other things. That is one of the factors that akes the diagnosis difficult.

A similar number of people who are at first told they have PMR later have their diagnosis revised to something else. very often late onset RA - because the symptoms overlap. Symptoms also overlap with fibromyalgia but it does not respond to pred.

It is unlikely that the low dose of pred used for PMR would prevent progression to GCA if that was going to happen although there are doctors who will tell patients that - but in some cases it might. There is no real way of knowing. Some people with PMR are never warned about the possibility of GCA developing, on the forums we often tell patients they should check the symptoms they are describing with their GP or A&E (ER) as they are typical of GCA. But when they try to do so they are dismissed as panicking or exaggerating. Doctors have said all sorts of things from "you are too young" to "you're on pred, you can't get GCA".

Education, education, education - and it doesn't matter if it is the patients or the doctors.  

Dan, although GCA can occur on its own or anywhere along one's journey with PMR, in my case I suffered undiagnosed therefore untreated PMR for a year, with 4 months of that year spent in bed in agony, and travelling to rheumy appointments by ambulance and wheelchair.  I spontaneously recovered within that year but it was short-lived and even worse symptoms than previously arrived on the scene, leading to an eventual diagnosis of GCA.  The original body pain returned and PMR was also finally diagnosed.  Had PMR inflammation been diagnosed and treated the previous year rather than left to course through my body, I may not have succumbed to GCA.

Low dose Pred does not offer any protection against GCA.  But, yes, it's true to say that those of us with PMR, and especially those of us on forums such as these, are alert to the danger of GCA and the need for immediate presentation to either our GP or A&E for the necessar rapid treatment with high dose steroids.

The lady involved in today's Daily Mail article posts on another PMRGCA forum.  Articles such as these are so valuable to spread the word especially amongst those people who may have symptoms they recognise from the article but who do not have internet connection.  There was a similar article in the Mail last November which contained an extract of my experience with my battle to get a diagnosis.

Members of my support group have copied the article and are delivery it to their surgeries.  I am awaiting a call back from my local MP. 

 

Thanks so, MrsO for the info. 

I am so sorry to hear the long peroid of untreated condition. I thought my story of misdiagnosis was the execption, I see now it is the rule. And most, like you, have had a harder and longer time than me. OK. No more Dan whining! 

Thanks again for the good information.

I suppose "surgeries"  means Doctor offices in American.

Sorry, Dan, yes surgeries are Doctor's offices.  You're not "whining" at all Dan - that's what these forums are for.  Everyone's personal journey is difficult one way or the other, and we will all have days when we need to get it off our chests.  You take care.

Hello to everyone discussing the daily mail article thread. I looked up the article online and like many of you found it mind boggling the numbers affected by poor diagnosis and of course the resulting costs the NHS incurs.

most of you know my diagnosis journey and my subsequent amazement in my GP who said throughout my pre diagnosis appointments that she couldn't for the life of her know what could be wrong with me, this comment made all the worse once diagnosed when I got online, looked up PMR and low and behold I was experiencing every PMR symptom, yet she had no idea what could be wrong with me!! She must have been about my age, 52.

The article clearly proves that my GP was far from alone, although I do not have GCA. But After reading the article I scrolled down and read some comments, one comment was from a medical student who confirmed that the symptoms and treatment of both PMR and GCA are being drummed into them. I make this point because most of our gp's who are ignorant of the symptoms of this condition may be from a generation if medical students whereby GCA and PMR symptoms and subsequent treatment was never a priority. Where as my new GP who is young, and has excellent understanding of these conditions and their treatment  and of course now these current medical students are more current on these conditions, their symptoms and treatments, so hopefully all future sufferers will not have to endure our often horrendous pre diagnosis experience. Regards, christina 

I tested it with a bottle of red wine last night and the only difference is that now I have a headache! lol

A bottle??  😨😨😨

Red wine? Lodger and I both found red wine didn't mix well with pred and we had to be very picky about what we drank! I can manage some reds now - but only our very light South Tirol local ones. White all the way otherwise... 

Grauer Burgunder is my tipple (or if I dare, gin and bitter lemon)!

Yes, very partial to a Grauer Burgunder myself (Pinot Gris if you aren't German speaking). G&T for me - but you don't get diet T or bitter lemon in Italy...

yup, a bottle. I love the stuff. :-)