PMRGCAuk

Temporal Arteritis

I am an active 63 year old male who has been ignoring the increasing pain in my temples and lethargy for several months as i continue with my daily bike riding, swimming, walking and exercise routines.

Growing tired of the pain, i looked into what i have and discovered i fit the symptoms of Temporal Arteritis and put myself on Prednisone. I really don't care which form nor feel the need to go to a doctor for confirmation. The drug has eliminated the pain, which is all i care about.

My question is this, has my habit of bike riding 30+ miles in Florida summer heat (95+) contributed to this condition, should I stop or just continue my lifestyle without a worry?

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I'm rather concerned about your decision to self-diagnose via Dr Google and then NOT speak to a medical professional before putting yourself on such a strong drug which I can only assume you have accessed via the internet. Unless you are a doctor yourself and have written your own prescription - which I'd have thought was unethical.

It is unlikely your exercise has contributed to the inflammation if you DO have GCA. However, whether you will be able to continue with the regime remains to be seen. Some can, some can't.

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Thank you for your concern, but my past experiences with medical professionals have been so negative, that if one said i had something, I would assume I didn't.

Nothing else matches my symptoms, and 20 mg of Prednisone ended the pain in a few hours. I don't seem much advantage of subjecting myself to their "care" for confirmation.

My only concern is if my habit of pushing through it, is doing me harm or not or if it is the cause.

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You will find out if it does. GCA usually comes with systemic symptoms - a bit like flu in many ways. And sometimes it involves PMR and if you develop that you will find your exercise hard work - it makes muscles intolerant of acute exercise and pacing is essential to cope with it.

But how do you intend going from here? It is not a good idea to remain on 20mg indefinitely for all sorts of reasons.

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I have never had a problem dealing with pain or lethargy, I suffered from Kidney stones without pain killers except to sleep.

I don't care it it hurts, I keep going, but the question is am I doing myself damage.

From what I read 40mg is the correct dosage to start off with, am I wrong?

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As PMRPro says Prednisone is not a drug to be played around with particularly by a non medical professional. You really need blood tests and if you have Temporal Arteritis you should be talking to an expert as it can cause blindness. Dealing with pain and lethargy is not part of the PMR/GCA package and you could possibly be doing yourself damage.

There are some things you can self medicate and suffer the pain but in my opinion PMR/GCA is not one of them.

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Maybe medical care is better in other places, but in Florida it means waiting a week to see a GP, then two weeks to see a specialist, then a week to take a test and another two to see the specialist again, each time sitting for 2 hours in their waiting room, before getting an answer.

The answer being to take the same drug I am now taking.

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Not unless an expert has ruled out other options. GCA is not the only cause of the symptoms. And pred is NOT sweeties to be popped liked paracetamol to relieve pain. I can only repeat my opinion that you are being very irresponsible. It may only be PMR where the starting dose is 15-20mg - and you say it has relieved all your symptoms. That would be unusual for GCA.

And no, there is no guarantee that you would be told to take the same drug that you are now taking - I'm not sure if it is illegally. I've always been under the impression that in the USA it is a POM.

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It is still a good idea to have someone keep an eye on you. Steroids have many side effects, and you are looking at years rather than months if you have PMR to be on them. A full blood count would be advisable to check other things.

I sense you want to be independent, and managing this on your own. I also sense maybe you have had for yourself or others, not adequate or disappointing health care in the past. Could I be right?

I am in the Uk, and I can say for various conditions I have had excellent care, except the wait for hip surgery for hip replacements, but ex care following it.

Anyway Mitchgam, I just hope you continue to improve, but if you go it alone, read carefully about the tapering you have to do before stopping prednisolone

Best wishes

I

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Healthcare in the United States is not so much about caring, but about doctors limiting their liability and maximizing their profits.

Once you understand and accept their point of view, it is easier to deal with them. I just don't have the patience nor time in this case to wait a few weeks, in pain, risking blindness, to get an official diagnosis.

I happen to have a supply of Prednisone that I use to treat another condition (DH), that I also self diagnosed and then went to a doctor for confirmation, afterwards. I understand its risks, do not like taking it, but as in either case, there is no other option but to take it, I do.

My only concern and the reason I wrote on this forum was about the issue of exercise.

Does anybody know if excessive exercise is either a cause or a bad thing with this condition.

(asking a doctor is worthless as all they do is say it is not "usual" for a 60+ male to be in the physical shape or have the BP and pulse I do.)

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Mitch with regard to the exercise, being in your 60s and in good shape is not unusual so I don’t know why a doctor would say that. My husband and I are in our 60s. He’s a cyclist and covers about 250 K a week. I’m a runner. He’s in great shape and I have PMR. So, no, you haven’t caused it. My rheumatologist ‘s view is that I should keep running so long as it’s comfortable and I don’t push myself too hard. I’ve found that I’m not able for the distance or speed I was doing before. I stop and walk whenever I have to. If you do have GCA or PMR, your illness and the pred will curtail your activities. You really need a proper diagnosis though. It could be something else and self medicating is just complicating matters. I wish you all the best and hope you get sorted soon.

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I live in Miami and even a former GP once told me to eat more fat and cut down on activity (I never went back to him).

Pain as i see it is in the mind. I refused to take pain killers when I had Kidney Stones, and blocked it out, which is why i need to know what is best, not to just push through things.

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Oh dear Mitchgam! I do understand this antipathy towards doctors, I really do. The way to counteract it is to do as you have done and arm yourself with plenty of knowledge. However, as GCA has massive life altering consequences and the recommended starting dose is 3 times what you take ( because it is a dangerous disease) and As Prednisalone is a dangerous drug you require a well equipped doctor to monitor your condition.

Essentially Prednisone is dealing with the inflammation and therefore a lot of the pain of an autoimmune disease. In no way is it curing you. So what you are doing essentially, is forcing a sick body through a punishing regime that is suited to a fit body.

Will there be consequences?

Of course there will.

It is common sense.

When you come out of denial ( understandable denial). I sincerely hope you find a decent doctor ( you may have to travel outside of your state to find one.) To take care of the aspects of this disease that cannot be done alone, no ifs, no buts.

With all best wishes!

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Hi there,

The one common thread I see on these posts over the past couple years is stress may have more to do with this thing showing up or getting worse than other factors. There are people who never exercise and all other degrees. I find I was under a GREAT deal of stress for 2 years prior.

I am in the U.S. and had to go in with the diagnosis in hand to be heard, however, because I had not taken any steroids yet the sed rate and crp confirmed my suspicion. To get the care I felt comfortable with I joined a concierge practice and pay more every month for now. I also researched rheumatologist and found one who had written papers on GCA (aka TA).

You can continue your exercise but like PMRpro says the disease may not give you that choice if you truly have GCA.

One trick available in the U.S. is ordering your own lab tests. I occasionally want to know what my sed rate is without travelling 20 miles etc etc etc. I use Walk in Lab. Order on line, sed rate is about $20.00. Go to a drawing center and the results get sent back electronically.

I wish you the best, it's good to have a low stress doc in case there are any complications. I understand, my GP retired and I am on a wait list for the one I want. In the meantime I am stuck with a goofy doc from California who is sure I can meditate my cares away, hahahaaaa

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Hi Mitch. As mentioned above - if it transpires you have GCA then it is best to get a clinical diagnosis as your eyesight may be at risk. Also - your aorta may have been weakened in various places resulting in aneurysms. Depending how advanced they are, excessive exercise can risk rupture and potential death. It may not be GCA, but the consequences can be very serious and it would seem that a proper clinical diagnosis is the most sensible thing to do.

This is worst case scenario of course - you may have a totally different condition for all I know. But my sincere advice is get yourself checked up properly asap to put your mind at rest. Good luck.

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Hi mitchgam,

Simple answers to your questions.

Did your exercise regime contribute - probably not!

Should you continue or stop - probably modify it! If you have GCA it will force you to.

Your comment about pain is not the full story, you may eradicate the pain, but if you still have the underlying illness it may still damage your Aorta and/or lead to blindness, both of which you already been advised.

20mg will not necessarily protect you from either, so from someone who lost the sight in one eye, I urge you to seek medical advice, and not continue with your cavalier attitude.

If you think your waiting time is long, then don’t ever come to the UK!

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Hi mitchgam

The others have given you their warnings, which I agree with - especially regarding confirmation of your self-diagnosis and self-medication, monitoring your bloods, eyes and other aspects of your health. Are you taking calcium and vitamin D for your bones, for example?

I would have thought that your muscles will tell you how much exercise they can tolerate - mine do, but I have PMR, not GCA. They told me that walking up a slight incline was Everest!

I'm in the UK and can easily wait 2 or 3 weeks for a 10 minute appointment with my GP, unless it's an emergency and I'm prepared to see the 'duty doctor'. My GP referred me to a wonderful rheumy, but I had to wait 6 MONTHS - she's so good, everyone wants to see her!

I think you can tell that we all wish you well and are concerned for you. Please keep in touch and let us know how you get on.

I've read here that men seem to do better than women with these conditions, so I hope you come through it all.

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I appreciate all of your concerns and will up my dosage to the recommended 40mg, rather then play it safe with a lower dosage. Since no matter which from of this i have, nor what a blood test shows, the ONLY treatment is to take Prednisone, I don't see a downside in taking it.

I have nothing against the medical profession, I just don't find them helpful. other then to for medication and to refer you to other doctors or tests, that they don't correctly evaluate. In my experience, they are wrong more then they are right.

I will at some point see a doctor, if only to find out how long and what is the criteria for discontinuing Prednisone usage (I do know how to taper down off of it when necessary).

But, back to my original question, forgetting the idea of my body "telling me" when to stop, as one doesn't ride 50+ miles in the Florida summer, by listening to what ones body says to do, you push though it.

The question being does it do me any harm to do so?

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It might - but there is no way to say in advance. If you have PMR which affects the muscles and can be part of GCA you may suffer severe DOMS. When I say severe I mean severe - and since your muscles can't repair themselves as they normally do in training it may last a long time. There are people where it takes months to go away though that is unusual.

However - don't underestimate what the fatigue of autoimmune disease can do. This isn't ordinary fatigue - and when it hits you almost cetainly WILL know about it. This is a whole new ball game for most people and since I know you don't really believe what we are saying you will have to find out for yourself.

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Actually it was the DOMS and PMR (ad you formally call them) that i have been pushing though that first made me realize something was wrong, before the temporal vein pain. I just assumed it was part of aging, and ignored it, although i did feel that the length of my rides and number of laps dropping, as well as their speed, even if I don't monitor either.

Thank you for confirming my diagnosis.

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Others have dealt with the key issues of the illness and pred very comprehensively already. Let me try and answer your specific question. I've raced on a bike for over 50yrs. Up until PMR made it impractical I held many local age-related STRAVA KOMs. I was also a recreational bodybuilder, personal trainer and coach (upto Olympic level) So, I have some insight into the issue. 1) I am clear that my (well managed) training didn't lead directly to PMR. 2)I stopped riding when I couldn't even get my leg over the saddle. Didn't realise what was going on at that stage except I had crippling inflammation. 3)A swift diagnosis and classic pred progression restored everyday function. 4)Understanding that, for what ever reason, my body is self -sabotaging by creating inflammation etc in over response to stressors, I am no -way gonna prejudice my path to recovery by loading it with muscle stressing exercise. It is nothing like DOMS (I'm so used to recognising it). It isn't about pushing thro it (I'm a racing cyclist - that's what it's about). So, I've lost muscle and fitness - it'll come back. Don't worry about the temperature you were riding through. With hydrating and dressing properly (ie iso hydration tabs etc) it wouldn't have been the cause. So, do what we bikes do -a) refix priorities ie focus on daily stress reduction and illness management b)exhaust all professional resources (including the good people here) to ensure a proper protocol for illness management c)in due course when you are clear it has well abated you could consider gentlely loosening the legs on the turbo trainer in an air conditioned room. We've all had setbacks in our cycling careers and have learnt about managing recovery. Hope this helps.

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That's me, a recreational lifter, very healthy for my age, 68, one of my goals each year was to stay in good enough shape to bench 225, sorta silly I know but at least something to aim for,,,have reached or exceeded that every year till now.....PMR...I'm afraid of even trying the bar much less any weight...I feel like I'm really falling out of shape but I still keep moving as much as possible...probably too much on good days?..IM starting to use creatine, just read that it is very helpful for seniors in retaining muscle function and brain function..we will see..I know one thing this PMR sucks!!

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I am newish to this 'pain in the neck' disease, but it strike me that you are far to interested in ' showing off' than listening to the people who are giving you good advice. If you don't want to hear the answer don't ask the question!!

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Sorry, but I didn't post my question to be lectured about how or why I should see a medical professional but to find out about the effect of athletics on the diseases.

While I do respect the right of those of you who trust the medical industry with your care, I don't and really don't want to hear about why I should.

Enough people who are active wrote for me to get the information I was looking for however.

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Mitchgam, may I say that you are coming over as a just a teeny wheeny bit arrogant and that may be the reason you are getting some of the replies you have received.

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I don't think any of the replies I received were anything but well meaning, even if off point.

We are all raised to take the opinions of medical professionals as almost god like, and in my experiences, they are wrong more then right, so I don't.

But, you are right, I do tend to get a bit annoyed when I am repeatedly told to seek the very advise I started out by saying I am not going to get.

Maybe even if well meaning, people might be better to focus on either answering the question posted or not responding if they don't know the answer.

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The forum is not a place to seek medical advice. It is a place to seek advice on how to live with a disorder for which you have received a diagnosis. That is why you are being repeatedly told you need to see a doctor.

YOU may believe you have PMR - but you have no medical training nor have you had any tests of any sort. There are other causes of the symptoms you describe, including some forms of cancer, which need to be ruled out.

I will agree there are less than perfect doctors out there. They have, however, gone through a lot of training and have access to testing that is required. It IS arrogant to believe you know better than all of them.

And if you don't like what you are being told - you can do the other thing can't you?

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I never asked anyone for any medical advise on here.

All I wanted to know was if anybody who has this also engages in rigorous activity and if they felt it contributed or effected their disease's progress one way or the other, purely antidotal.

It was all of you who felt the need to offer me medical advise.

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Hi,

Glad you got the answers you wanted. I think I did try and address them in my way. But you should appreciate that many on here are not as athletic as yourself, not necessarily because they don’t want to be, but because they can’t be!

And yes, they were all well intentioned, if not necessarily what you wanted to hear. After this is a health forum, so it covers all aspects of health - not just the exercise part.

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I understand and do not expect everyone to be the same nor did I take any offense at the advise offered.

But, it was good to know that there really are others, who are also athletic and suffer from this.

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Yes there are. I don’t think it discriminates in anyway when it comes to fitness!

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Interesting to note, and while purely antidotal, with only 200,000 sufferers according to the government statistics, there seems to be a disproportionate number of athletes among them, or at least replying to my question.

I can't help but wonder about the correlational, although without any drug corporation interest, nobody will study it.

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No they won’t, especially as it affects people over 50 as well - no glory in that age group!

However stress, whether it be mental, emotional or physical certainly seems to be a contributing factor in most patients.

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Yet there seems to be LOTS of money going into various dementia research projects, so maybe it is not an age issue, just a numbers one.

From what I am reading they really don't have a clue about the causes of GA or TA or whatever the current correct acronym is and there seems to be no financial reason for them to find one.

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There is lots of money going into dementia, and understandably so, it’s a horrible condition, and is going to cost most nations millions to look after their elderly in years to come as people live longer.

GA is actually GCA -Giant Cell Arteritis, from the fact that the ‘rogue cells’ if left untreated join together and cause giant cells that can attach themselves to blood vessel walls and block the flow of blood.

TA - Temporal Arteritis is so called because it is the temporal artery that is biopsied due to the fact that it is nearest the skin. It can be seen to be enlarged and easy to operate on. However it is not always affected (mine was never enlarged) nor is it the one that causes blindness, that’s the ophthalmic artery.

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PMR/GCA isn't as rare as it might appear, just more common in older populations and that skews the figures making official figures underestimate numbers. The rate of GCA in over 50s is 0.2% - and that doesn't include the cases never recognised as GCA being the cause of headache in the elderly since it doesn't inevitably lead to blindness in all patients. Most of the figures are quite old - there is evidence that the incidence is increasing, and the incidence varies from country to country.

A relatively recent paper from the UK

ncbi.nlm.nih.gov/pmc/articl...

concludes:

"These conditions have been confirmed to be, respectively, the most common forms of vasculitis and inflammatory rheumatic disease in the UK and will become commoner as the population ages since their peak incidence occurs in individuals older than 70 years."

There is actually a fair bit of research going on. And as for the "cause" - that is covered by a lot of other research into autoimmune disorders - there is a lot of overlap.

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