Coping

Hi everyone, I'm wondering about certain aspects of these diseases and would appreciate advice, feedback, information, if you can. Does anyone have a CNA, certified nurse's assistant or aid, come in to help with some daily tasks?

I am dealing with the fatigue and it is better, now, dealing with it, than originally (originally it was unexpected, at first , unexplained and as overwhelming as the disease itself). I still have it, but I think it is less.

If I have to deal with it for the rest of my life, there are coping mechanisms (some discovered here, on this good post), I am alive and I have my vision. I believe I will make it past the four years, it was my understanding, was the 'morbidity' on this disease.

I believe an aid would help. Does anyone work with one ? especially on those days -- headache, body ache, fatigue. Problems with limbs moving. And no one to shop for me or go to the pharmacy. I have found a pharmacy that delivers, which is really good.

I will be changing to a long term care health policy -- because of healthcare changes in our country, in a month or two. Through that plan, I believe I can have an aid come to my apartment. I think I can now, also, due to the potential severity of GCA, my thigh and some of the blood markers. We have an association, VNA, Visiting Nurse Association and I think I may be able to arrange one. I have had one come to my apartment previously, but it was too many hours, the shopping was done, dinner was cooked and I wanted to work on my non-profit work. One aid was very nice and that was fine, we spoke a lot about the African country she came from (I have previously worked at the United Nations and had some familiarity with her country, so that was good). The other was a teenager and she used the extra time to text her friends, talk to her boyfriend and -- -- come on, I'm easy to get along with -- but -- come on. I also work on nursing abuse -- so -- - -- That wasn't abusive and I am too young and strong for that -- but -- -- wasn't too happy about that.

I think I will try again with an aid.

I am having hip replacement surgery in about two months and will be eligible for an aid, then. Possibly if the GCA is still an issue, will continue with one, for awhile at least.

Is anyone else involved with a nurse's aid in the home ?

Also, has anyone returned to work, either full time or part time? With this fatigue I am having a hard time visualizing that, -- or else there will be flare ups due to -- not effectively dealing with the fatigue. Part time might work, possibly two part time jobs. Has anyone returned to work or tried to?

We have a terrible economic situation over here, now, and jobs that once were there, aren't --- and competition is more than it ever was. Many of the Wall Street people laid off have gone into jobs such as paralegalism, because it is still a professional position. Very interesting and new competition. I am somewhat ok, because of my experience, but -- in the past paralegals weren't competing with MBA's in Finance, for jobs. I have done temp work at other positions, since being diagnosed and it was fine. In temp work, you can limit how much you work, which with GCA is good. Have not worked in several months, however. Have done a good amount of volunteer work for the disabled, a non-profit I work with on a paralegal basis for no pay, and I have articles published and paid for in ABLE, New York, a newspaper for disabled people.

Wondering if anyone has returned to work? And how is it going with the GCA, the PMR and prednisone dosages? and the employer going along with some of the side effects of these? Would you let me know? Thanks.

wishing everyone health

best, Whittlesey

47 Replies

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  • I have worked all through my PMR - but I'm a freelance translator and work from home. I know someone who has returned to work post-GCA as border control staff, including working 12 hour shifts and nights though nights are restricted because of her medical history. Others have continued to work with GCA including nursing and physiotherapy. I also know of a landscape gardener who continues to work with PMR - I don't know how!

    Most people in the UK with GCA in the past have tended to be of retirement age, it has been 60 for women until relatively recently. In the UK GCA is covered by disability legislation which helps and most employers work well with Occupational Health and the unions to accommodate people. It is pretty unlikely anyone in the UK would get carers/assistance paid for, you have to be pretty "off your legs" and you are charged anyway for much of it. If you can't afford help it is unlikely anyone else would pay!

    It is something that will vary greatly from country to country - and the situation in the UK will be VERY different from the USA. You certainly don't get an aid after a hip replacement - except a walking aid frame! You don't usually get to go home until you can walk and manage stairs if you cannot have a toilet on each level. You are expected to find family or friends and only occasionally would you get to spend time in a residential home. In Germany you usually spend 3 weeks or more in a rehab facility to go with the hip replacement - covered by your health cover. By the time that's finished you should be able to cope alone.

  • Thanks, PMRPro. It is amazing and amirable that you are working. I'm very glad to hear it. Would say, I don't know if I could do it. When I was diagnosed with GCA, the headaches were so overwhelming, I cut my work schedule way down. I was holding weekly telephone conferences with 5 - 25 people, depending, -- on a human rights' issue. They often got pretty heated, and I was often the moderator. Before the diagnosis, when I got off the phone, (5 hours after the beginning of the call) I would have a terrific headache, which I treated with migraine treatments and often a beer.

    After the diagnosis, I cut them down to once a month and then after some of the hospitalizations, our group is "off of them" for time being. My health is more important. We have an occasional one if a particular issue comes up and I try to get someone else to moderate. No apologies for health priority and an intention to stay alive the next 15 years or so.

    I still do a fair amount of non-profit work from home. I don't know if I can handle a 40 hour work week, yet. Just don't know. But I will still be working.

    Very admirable what you are doing. Glad to know this.

    On the "aid", because of my hip and the GCA, I could have an aid, now. But I don't want more hassles in my life and the first experience, after the "aid" things were done, there were a lot of extra hours and I felt I could have been putting them to good use. With the second aid, I had learned about this, a little, and after the "aid" work was done, I rested. She was fine with that.

    May try that again.

    Yes -- hip surgery in the U.S., you stay in the hospital for 5 days at the most, no more than that, -- then home, or a rehab facility for a month. You are entitled to have an aid for at least 4 weeks, when you come home. Will be doing that, because that is some difficult recovery, from what I understand. Not looking forward to it, but I will have more mobility, when it's through. And I won't be able to carry groceries home.

    Thanks on the work information. Really good information and commendations. Thanks.

  • Hi. I also have GCA, and RA to go with it. I am interested in what you say about having hip replacements - I need two, and am on morphine to cope with the pain. But surgeons here are most reluctant to operate if one is still on fairly high dose prednisolone - I have been told I can't have the op till they drop to 10mg. No matter how slowly I try I cannot get below 15mg. So my question is, what dose are you on?

    This very afternoon I had a visit from a lady from Health and Social care, finding out what I need in the way of aids around the house - shower stool, kitchen perching stool, etc. No free helper, though!

  • Hi Venezia1, Sorry about the "no helper". I was offered one, with my hip situation and GCA. Because of experiences, that weren't that great, I said "not at this time". I can change to having one though. Very sorry about that. I have the aids, for the bathtub, toilet and bars in the bathroom and a wide bathroom that will allow a wheelchair. I have a wheelchair, but I don't use it too much.

    Yes, understood on the prednisone and the operation on the hips. My doctor said the same thing. Currently, I have gotten the dose of medrol (methylprednisolone) down to 4 grams a day. I started at 60mgs per day and they refused to do the hip operation at that level of medrol. Now they will do it. I need clearances from the heart doctor, rheumatologist and internist, first. I am in the process of getting them.

    For two to three months, I took weekly injections of methetextrate, which helped lower the medrol and keep it lowered. It apparently doesn't work for everyone, but for me it did. I had reactions to the methetextrate, but I knew it was helping keep the medrol down, so I dealt with them. Felt sick, faint, like I had no energy on the first day, second day better, third almost regular. I tapered that down and got off of it. Long term use of methetextrate isn't good either, I understand.

    That possibly might help you get the prednisone down to a lower level. I think 10 mg is the level, here, too at which they will operate. Here, if you have GCA/PMR they insist on clearance from a heart doctor. It's not really a problem. possibly the methetextrate can help get the prednisone down. ? I also take an 83mg aspirin every day, which I think helps to keep the amount of medrol I need, lowered.

    Good luck, and hope the dose is lowered soon, so you can get the operation and feel better.

    thanks for the "aid" information. all my best, Whittlesey

  • I think you may need to "interview" a few surgeons! Different surgeons have different attitudes. There are people who cannot reduce the pred dose to 10mg because of why they need it. If you are in a lot of pain some of us think that that increases our need for pred and a few ladies have had hip or knee replacements and found they can reduce afterwards.

    When you say you can't get below 15mg however slowly you go - what do you mean? There are things that can happen alongside PMR-type pain that improve on higher pred doses but which can be dealt with in other more targeted ways.

  • Hi again - I have been on 25mg Methotrexate for a while - it doesn't seem to have any noticeable effect on anything! But fortunately I'm not aware of any particular side effects either. I started on 80mg of prednisolone, and have been tapering for over 18 months, but every time I get below 15mg the GCA symptoms return, and I'm told to put it back up again. It's so frustrating.

    I don't think there are concerns about the heart - the risk appears to be of infection because one's own defences are not working. I take 75mg aspirin as well.

    Again fortunately, I had been retired for three years before getting RA, and GCA arrived two years ago, so there's been no problem with work. I have a very small part-time job which I can do whenever I want, so when I'm having a bad week I don't do it! I can't imagine how people can continue to work full time with these conditions.

    Good luck with everything.

  • Hi Venezia1, thanks for the information on working. It sounds good and I'm glad it's working for you. Yes, I too, will be 62 in June and I can retire if I want to. I may. I believe GCA is recognized as a disabling condition in the U.S., also, so I could stay on disability. not sure what to do on this.

    Sorry about the higher doses of methotextrate not working to get the predisone lower. Some people do ok with the biologics -- one is TOC which gets the IL6, I believe which is one of the parts of the inflammatory parts of the cell. If the inflammation is reduced in IL6, usually the inflammation is lowered. I think with TOC, methotextrate is used, and not prednisone, I believe. They are doing trials of this, in the U.S. may be a good answer. and of course the doctors would have to agree that a hip operation is safe. With the reducing of pred, you should soon get to 10. wish you all the best on this. I know how hard it is. You have much courage and strength.

    luck. all my best, Whittlesey

  • Hi PMRpro - I have tried several times to reduce from 15mg, using a variety of methods. The last time, I followed your 1mg x 1day a week etc plan, and everything seemed to be fine until I got to 1mg x 6 days, when the GCA symptoms of sore scalp, visual disturbance, pain in temple and jaw claudication returned, so my GP told me to go back to 15mg x 7.I was loath to do this, but obviously don't want to lose my sight, so complied.

    My consultant suggested that she could find a sirgeon who would operate at 15mg if I wanted, but I am worried about the risks. Now she is suggesting I try Azathioprine as it mat make it easier to reduce. Any thoughts on that?

  • venezia1, I'm not clear about your method of reducing, do you mean you are substituting 1mg each time the reduction day comes round instead of simply not 1mg less of the current dose?

    It's probably just the way it is written, but that is how it comes across.

  • Yes - I agree with polkadotcom - you should only go from 15 mg every day to 14mg every day in about a month to 6 weeks. It sounds as if you went from 15 to 1 - If so, no wonder your symptoms came back.

  • No, I mean I followed the regime suggested by PMRpro - 6 days old dose, one day new dose, 5 days old dose, 2 days new dose etc. It was when I got to 1day ole dose, 6 days new dose that the symptoms came back.

    While I'm "talking" to you - I had a strange experience recently when I was in hospital for some tests. The opthalmologist I saw was discussing steroids with me, when he said, "Basically it's a bad situation, because without them you go blind, with them they'll kill you." I was so shocked I didn't really respond, but afterwards I wish I'd asked him exactly how they will kill me?

  • Venezia, I'm not surprised you felt "shocked". He obviously knows nothing about steroids and therefore should not be making such statements - not are they just protecting the eyesight of those of us with GCA and, keeping those of us with PMR out of wheelchairs, they can be lifesavers in many situations. He needs educating.

  • Thanks for reply, Celtic. Maybe I had been complaining about the side effects and he over-reacted, but it was still a starnge thing to say to a patient he'd only just met!

  • Oh, that's fine then - but it is very interesting to have someone confirm it is that sensitive!

    Dear god - I do wish they'd not dramatise things like that! There are side effects to pred, there are side effects to ALL medications. Aspirin and ibuprofen can kill you too - one lady took ibuprofen as her GP told her to and in 3 days she was in hospital with what is called a coffee-ground gastric bleed. That can kill you but I bet he wouldn't say that about an OTC painkiller!

    Some of the pred side effects can be quite severe and, if you had to take 60mg every day for years, it certainly wouldn't do you any good. It is thought that the effects of pred are, to some extent, similar to aging so that you age faster. Some of the things we notice are things that happen as we get old - bleeding easily, delicate thinned skin, osteoporosis and so on. I don't bleed easily except because I'm on warfarin, my skin is still quite solid but I have age spots, my bone density hasn't changed in nearly 5 years on pred - blah blah. Almost everyone gets some side effects, some get few, some get more. Some are more serious than others. But that is why we are meant to be monitored - to identify raised blood pressure, signs of diabetes, check for raised eye pressures, have a dexascan or any of the other side effects that can be dealt with in exactly the same way they are for millions of other people. We're just a bit more likely to need it.

    I have a heart condition, atrial fibrillation, but it wasn't caused by pred, it was almost certainly caused by the autoimmune disorder underlying the PMR that wasn't treated at all for years. Had I been on pred sooner it might not have been so bad.

    What a twerp! GCA is associated with increased MORBIDITY - that means developing other illnesses due to the vasculitis. There is NOT an increased MORTALITY - that means dying! I quote from a study: "Our population-based cohort study did not demonstrate any increased mortality risk for patients diagnosed with biopsy-proven GCA. The risk of death from infection early in the disease may be increased."

  • Hi Whittlesey I have just read your post about making it beyond the four years morbidity for GCA and since I also have GCA/PMR I was fascinated by what you meant???

  • Hi Classicmike, when I was first diagnosed with GCA in 2012, I was having bad problems with 80 mgs of prednisone a day and the neuro surgeon who did the biopsy would not return my calls. --

    I had a routine visit with my ear, nose and throat ENT, doctor and told him what was happening. He got pretty angry that my neuro surgeon wasn't getting back to me. I told him I was trying to reduce the prednisone myself because it was making me so sick, weak, muscularly weak, couldn't walk far, lots of things.

    He said, "no, don't do that ! You're not getting good treatment at Mt. Sinai. You have to see someone else! Do you know you can lose your vision? --- Do you know the morbidity on this, GCA, is four years, especially if you lose your vision ? ? "

    Well, no, I didn't know these things. I found other doctors, (am still seeing him) which was quite a process (many were associated with Mt. Sinai, NYC) and began to deal with the prednisone (including keeping my eyesight) and its effects on my life.

    Yes, apparently the morbidity for GCA is currently four years, especially if you lose your eyesight. My mother passed away four years after her initial diagnosis of GCA, with a heart attack. However, she was 70 when she was diagnosed. Many who are diagnosed are in their 70's, 80's.

    We are young for this. That is one reason I want to get and keep the pred down, it can cause complications which can lead to more serious diseases -- no downward spiralling, because they haven't done the research, some doctors, don't take it particularly seriously, and consider this an "old person's" disease, -- -- no disrespect meant to elderly people, which we aren't.

    wishing you health, and continuance, best, Whittlesey

  • Hi Classicmike, am copying you on a response I sent to MJJ in Colorado:

    Hi MJJ7960, Looked in my Merriam-Webster's Medical Dictionary, which I brought a couple of years ago, when I was first diagnosed with DJD and meralgia paresthetica in my thigh.

    Morbidity is defined as:

    a diseased state or symptom; the incidence of the disease; the rate of sickness

    Mortality is defined as:

    the proportion of deaths to the population (most pertinent)

    This doctor could well have meant mortality.

    The terms: "Mortality in patients with GCA",

    produced this link from the NIH, U.S. which is a credible source:

    ncbi.nlm.nih.gov/pubmed/218...

    from the text:

    ". . .There were 225 cases of biopsy-proven GCA (163 women and 62 men). The mean age at diagnosis of GCA was 78.2 years. The mean followup period was 66.2 months (SD 47.1 mo). During the followup period, there were 71 deaths in the GCA group (50 women, 21 men). The standardized mortality ratio was 0.99 (95% CI 0.77-1.25). The relative survival for different followup periods demonstrates that patients with GCA experienced similar mortality to the general population (age-matched and sex-matched). Death from cardiovascular causes (45%) was the most common, followed by infection (17%) and cancer (17%). Infection was a significantly more common cause of death in the first year (chi-squared, p = 0.0002).

    CONCLUSION:

    Our population-based cohort study did not demonstrate any increased mortality risk for patients diagnosed with biopsy-proven GCA. The risk of death from infection early in the disease may be increased.. . ." (above link)

    So, out of 225 cases studied, there were 71 deaths.

    Below is from medscape another very credible source in the states

    This is probably what he was referring to. He, my doctor, is a highly successful ENT doctor in NYC with a very busy uptown practice.

    ". . . Patients with GCA do have increased mortality compared with the general population. Vasculitic complications such as arterial occlusion and/or aneurysm formation, as well as treatment related adverse events, may result in increased death rates in certain cohorts, particularly during the first 5 years after diagnosis.[123] However, regular monitoring of patients and early treatment of comorbidities may have resulted in a lower severity of vasculitis-related complications in GCA populations in whom survivorship was equal to or even decreased compared with the general population.[124]. . ."

    No one wants to scare anyone. But we need to know what we are dealing with.

    GCA is a very serious disease of the arteries. And GCA, often isn't just contained, at the temporal artery point. I have it in my cartoid artery and two vertebral arteries and they dissected putting me at risk for stroke. The last time I was hospitalized and I looked at my summary of medicare medicaid bills, re: the hospitalization -- it said I was hospitalized because of a "life threatening situation". No kidding.

    We need to take care of ourselves, and get the necessary tests. CAT Scans can tell the situation with the other "large vessels" which mean arteries -- are they also inflamed ? and if so, there needs to be treatment and they need to be watched.

    I know you are in the states MJJ. Would say that we live in the most advanced medical climate there probably can be. Let's take advantage of all of the advances we can, add to them, if possible, survive this and help others to survive this and be comfortable.

    So my ENT, Dr. Lin, probably meant mortality. which doesn't make me feel any better. But I do feel better now that time has passed and I have dealt with various issues around this and have good doctors working with me and this good forum for advice, support and information.

    One doctor I spoke with during the beginning of this, -- I had asked her, "what is the life span on this?" She wouldn't say right away. Then she said, "Look, you are very young for this. Stastics don't dictate what is to be. Get over the worst part and we'll discuss the rest, then. " I took her advice. Good advice.

    best, Whittlesey NYC U.S. MJJ, you are in Colorado, U.S. ?

  • Whittlesey, I echo Classicmike's question about what your doctor could have possibly meant by saying "morbidity on this, GCA, is four years." Was he actually talking about "mortality" rather than "morbidity"?

    I have not done a good literature search on this subject, so I may be off base.But the research I have seen on GCA and mortality is mixed. I cannot find any credible reference to the "mortality of CGA being 4 years." The research just does not talk about this disease this way. Maybe the likelihood of mortality is increased within the first 4-5 years (per some studies, and "not" per others), but there's a lot of evidence that with appropriate treatment and monitoring of both GCA and related comorbidities (other disease patients have in addition to GCA), folks can expect survival rates equal to the general population.

    My caution is that misinformation might result in unnecessary anxiety for folks dealing with these diseases.

  • Hi MJJ7960, Looked in my Merriam-Webster's Medical Dictionary, which I brought a couple of years ago, when I was first diagnosed with DJD and meralgia paresthetica in my thigh.

    Morbidity is defined as:

    a diseased state or symptom; the incidence of the disease; the rate of sickness

    Mortality is defined as:

    the proportion of deaths to the population (most pertinent)

    This doctor could well have meant mortality.

    The terms: "Mortality in patients with GCA",

    produced this link from the NIH, U.S. which is a credible source:

    ncbi.nlm.nih.gov/pubmed/218...

    from the text:

    ". . .There were 225 cases of biopsy-proven GCA (163 women and 62 men). The mean age at diagnosis of GCA was 78.2 years. The mean followup period was 66.2 months (SD 47.1 mo). During the followup period, there were 71 deaths in the GCA group (50 women, 21 men). The standardized mortality ratio was 0.99 (95% CI 0.77-1.25). The relative survival for different followup periods demonstrates that patients with GCA experienced similar mortality to the general population (age-matched and sex-matched). Death from cardiovascular causes (45%) was the most common, followed by infection (17%) and cancer (17%). Infection was a significantly more common cause of death in the first year (chi-squared, p = 0.0002).

    CONCLUSION:

    Our population-based cohort study did not demonstrate any increased mortality risk for patients diagnosed with biopsy-proven GCA. The risk of death from infection early in the disease may be increased.. . ." (above link)

    So, out of 225 cases studied, there were 71 deaths.

    Below is from medscape another very credible source in the states

    This is probably what he was referring to. He, my doctor, is a highly successful ENT doctor in NYC with a very busy uptown practice.

    ". . . Patients with GCA do have increased mortality compared with the general population. Vasculitic complications such as arterial occlusion and/or aneurysm formation, as well as treatment related adverse events, may result in increased death rates in certain cohorts, particularly during the first 5 years after diagnosis.[123] However, regular monitoring of patients and early treatment of comorbidities may have resulted in a lower severity of vasculitis-related complications in GCA populations in whom survivorship was equal to or even decreased compared with the general population.[124]. . ."

    No one wants to scare anyone. But we need to know what we are dealing with.

    GCA is a very serious disease of the arteries. And GCA, often isn't just contained, at the temporal artery point. I have it in my cartoid artery and two vertebral arteries and they dissected putting me at risk for stroke. The last time I was hospitalized and I looked at my summary of medicare medicaid bills, re: the hospitalization -- it said I was hospitalized because of a "life threatening situation". No kidding.

    We need to take care of ourselves, and get the necessary tests. CAT Scans can tell the situation with the other "large vessels" which mean arteries -- are they also inflamed ? and if so, there needs to be treatment and they need to be watched.

    I know you are in the states MJJ. Would say that we live in the most advanced medical climate there probably can be. Let's take advantage of all of the advances we can, add to them, if possible, survive this and help others to survive this and be comfortable.

    So my ENT, Dr. Lin, probably meant mortality. which doesn't make me feel any better. But I do feel better now that time has passed and I have dealt with various issues around this and have good doctors working with me and this good forum for advice, support and information.

    One doctor I spoke with during the beginning of this, -- I had asked her, "what is the life span on this?" She wouldn't say right away. Then she said, "Look, you are very young for this. Stastics don't dictate what is to be. Get over the worst part and we'll discuss the rest, then. " I took her advice. Good advice.

    best, Whittlesey NYC U.S. MJJ, you are in Colorado, U.S. ?

  • See my reply to Whittlesey about morbidity and mortality.

  • Hi MJJ , would add this:

    link:

    medscape.com/viewarticle/74...

    ". . .The pathophysiology of PMR and GCA is still poorly understood. Current concepts suggest a common immunologic disorder underlying both diseases, but which factors determine the clinical disease expression remains obscure and is the subject of future research.

    From the clinical perspective, it can be anticipated that the new classification criteria for PMR will facilitate future prospective trials on treatment and outcome of the disease. The ACR/EULAR Diagnosis and Classification of Vasculitis Study (DCVAS), currently underway worldwide, is aimed at the implementation of new diagnostic and classification criteria for primary vasculitis including GCA.[125] More attention should be focused on large vessel disease in patients with and without evidence of temporal arteritis. Optimal strategies for detection and prevention of late complications of GCA, such as development of aortic aneurysms and arterial stenosis, are an important issue to be addressed by future studies. There have not been any studies evaluating the relationship between GCA and other large vessel vasculitides, such as Takayasu arteritis.. . ." (link above)

    and

    ". . .New corticosteroid-sparing and even corticosteroid-replacing immunosuppressive drugs will be developed to reduce corticosteroid-related morbidities in PMR and GCA, and improve treatment outcomes. Tocilizumab and other biologicals may be promising new approaches for the near future.[127,128] For GCA, modulating the NOTCH signaling cascade to deplete T cells from the vascular infiltrates has already been proposed as a promising novel immunosuppressive strategy; however, this approach has not yet been examined in clinical studies.[129]

    Corticosteroids are still the first-line immunosuppressive therapy in patients with PMR and GCA. In GCA, adjunctive methotrexate may be useful in reducing the cumulative corticosteroid dose. Acetyl salicylic acid is recommended for patients with GCA, as they are at an increased risk for developing cardiovascular and cerebrovascular events. At present, there is no evidence of benefit for biologicals in the treatment of PMR and GCA.. . ." (link above)

    So, they are looking for replacements of cortosteroids -- they aren't there, yet. But they are working on it.

    Thanks, MJJ. hope you are feeling better. my prednisone is down to 4mgs and I have started to take tizanidine hcl for headache pain -- I get combination headaches GCA/migraines. Have tried several treatments, just started with this. I have to take 1/4 of a 4mg pill, otherwise, I feel dizzy and very faint. apparently it causes low blood pressure in my situation. It does help the headache. and from what I have read has some inflammation suppressing capabilities -- which I am happy to hear about.

    all my best, Whittlesey

  • Hi Whittlesey, I am sorry to hear that you have had such a bad experience with medics and glad to hear thar you are now in the care of someone who is giving you some real help.

    The average age of diagnosis in the states appears much higher in the states at 78.2 years, if you add to that 4 further years of expected life to 82.2 years you are doing well as the average age in this country is far lower.

    I agree with MJJ that your Doctor was ill advised to give you this questionable news to give unessasary concern.

    My understanding was that your life expectancy is the same as the rest of the population but you are of greater risk of suffering heart related and stroke problems.

    Incidentally the average age for the onset of GCA in the UK is 72.

    GCA is not like cancer which can often be terminal it is above all an illness which has to be viewed in a positive way. Don,t take too much notice of what the Doctors tell you

  • Hi Classicmike,

    I understand and appreciate what you are saying. And I am assuming that you also have GCA, which is the more insidious and dangerous of the two -- -- PMR and GCA (which is not to downplay the pain and hardship PMR presents).

    The statistics present this:

    ". . . Patients with GCA do have increased mortality compared with the general population. Vasculitic complications such as arterial occlusion and/or aneurysm formation, as well as treatment related adverse events, may result in increased death rates in certain cohorts, particularly during the first 5 years after diagnosis.[123] However, regular monitoring of patients and early treatment of comorbidities may have resulted in a lower severity of vasculitis-related complications in GCA populations in whom survivorship was equal to or even decreased compared with the general population.[124]. . ."

    The last two sentences are very positive and present a hopeful outlook. The first sentences present the statistics. GCA is serious -- one of the "new" doctors I initially worked with was a young doctor from Thailand. She was a GCA specialist. She had seen blindness and death from GCA in Thailand. She was one of the doctors who initially insisted that I take the higher doses (which I wasn't really happy with).

    I believe you need to be a realist. If this is what we are dealing with, knowing it, can ensure that you find the appropriate treatments, the appropriate doctors and take into account, as fully as possible, what it presents in your life.

    If a trusted doctor tells me now (knowing the stats) to take an aspirin every day to prevent some of the negative outcomes of vasculitis mentioned above, I do it. There may be something better coming than aspirin, but for now I take it and sometimes two a day when my neck feels badly.

    My ENT was not trying to scare me, he was saying "hello, Lynn, -- a vegetarian diet is not going to cure this. And you can't do a -- "let's wait and see". And if you try it -- guess what -- ? "

    Well, I got his point. I went to the emergency room, was treated with high doses of medrol and then took the 60 mgs a day and tapered them down. I had not yet found this blog. I must say the method of reducing presented here to me, is the sanest, and presents one of the best ways to deal with lowering this prednisone and recovering. And probably is the medically safest, so that your adrenals pick up and begin to produce cortisol again. The U.S. hasn't gotten to that point, yet. The doctors just tell you to begin to reduce -- -- ? And the patient says --- ok -- ? How? answer -- just reduce.

    And that brings me to a problem with GCA and PMR, they are rare. Currently it seems rheumatologists deal with this mainly with very elderly people, who, I hate to say this, but may not have much longer. There are more and more in the U.S. who are getting this much younger. From your post, that is now true in England, also. And of course the stats -- don't mean you will pass away in five years. They are giving you the current situation.

    And of course we take a positive outlook and do as much as we can -- but know what it is, we are dealing with.

    I have re-read your post and see what you mean on the ages. I think my point is, GCA doesn't have to be the 'cause' at age 50 or age 70. We can live past 70.

    thanks for your post.

    all my best, health and safety, Whittlesey

  • I'm just putting in a simple statement here Whittlesey:

    "Our population-based cohort study did not demonstrate any increased mortality risk for patients diagnosed with biopsy-proven GCA. The risk of death from infection early in the disease may be increased."

    is the conclusion from this study:

    ncbi.nlm.nih.gov/pubmed/218...

    There is, however, indeed an increased 5 year MORBIDITY in GCA - that means a patient with GCA is more likely to have developed other illnesses within 5 years of their diagnosis of GCA. Some of them may lead to their death - but that is not necessarily death from the GCA.

    MORBIDITY means developing other illnesses due to the vasculitis. There is NOT an increased MORTALITY - that means dying!

    The terms are often mixed up and people use them incorrectly even when they think they are using them properly. Think how often you hear studies being quoted that tell you if you eat this, that or the other you are less likely to die at any age. I know what they mean to say - but it isn't what they said.

  • In this study the word used is "mortality"

    Those are the words used in this very credible, National Institute of Health Study on the serious disease of giant cell arteritis, GCA. I am diagnosed with it.

    From the study:

    ". . .During the followup period, there were 71 deaths in the GCA group (50 women, 21 men). The standardized mortality ratio was 0.99 (95% CI 0.77-1.25). The relative survival for different followup periods demonstrates that patients with GCA experienced similar mortality to the general population (age-matched and sex-matched). Death from cardiovascular causes (45%) was the most common, followed by infection (17%) and cancer (17%). Infection was a significantly more common cause of death in the first year (chi-squared, p = 0.0002).. . ."

    A very credible, established ear, nose and throat doctor did thorough research on it -- and the mortality shown, currently is four years.

    That is what this study says. We can not mis -represent what these studies say.

    A study on what you eat is much less serious than a well documented, well managed NIH study. GCA is very serious. Your arteries are at risk and that is no little thing.

    In this study of 225 people, 71 died during the study. That's a little over 1/3 and that is a significant amount.

    I have spoken to several doctors who have said the same thing and the word used is "mortality". They also say this is not set in stone and they are now dealing with younger people with this, who may well survive, to the end of their life cycle, whatever that may be.

    If you have heart disease and the doctor tells you if you don't change your lifestyle to a "heart healthy" lifestyle, which may be difficult -- if you don't do this, you may pass away -- most people make the changes. I have seen this and then their possibility of long term survival "raise".

    That is what we are talking about here. These are the facts. With full factual statements and awareness of what this disease presents, we are more equipped to deal with it and our survival rates should go higher.

  • Hi Whittlesey,

    I may be missing something or misunderstanding but it says that patients with GCA experienced similar mortality to the general population. So basically there is no extra risk from having GCA. The cause of death may be different in the GCA group from the general population but not number of years lived.

    I hope you don't think I am being too critical but posting " chunks " of studies isn't helpful as they can be taken out of context.

  • Hi Keyes,

    As a parlegal, I try not to take out of context, but to spare the reader having to read the entire study which is technical. As a paralegal, this is one function we assist attorneys with.

    I posted the link, which has the study in its entirety. This can be accessed at any time and if you feel a statement is out of context, I would definitely advise accessing the link, especially if you have GCA. It is a very valid study done by the National Institute of Health, U.S. which is the one of highest public levels for these studies in the U.S.

    I think there are three key facts stated here, in this study (link posted) which are valid and useful for us, as GCA (a very rare disease) sufferers:

    1. One third of the participants died of a heart attack during the study.

    2. GCA can contribute to co-morbidities. These co-morbidities can lead to mortality sooner than might be expected.

    3. A co-morbidity of a heart attack is serious. GCA and treatment is part of these-co-morbidities.

    One may well and effectively glean, from this, that GCA may lead to a heart attack, which can be fatal. This is the essential fact from these statistics and study that my ENT doctor was referring to. From the studies, he was not incorrect.

    My ear, nose and throat ENT doctor, is a highly seasoned, working doctor, in uptown NYC, which, where, if you don't "have what it takes" you don't last very long. He gave me information -- that I was not to put a pill of prednisone in my purse and continue along to a temp job. And then come home and work on our non-profit agency and maybe grab a McDonald's hamburger with fries for dinner, so I didn't have to cook. Can't deal with it that way.

    GCA is a serious disease and it needs to be taken seriously. And herbals may not present a remedy in this situation.

    He said to me, during an appointment, "I have studied the stats on this, and there can be a 4 year morbidity on this, are you aware of that?" That was his statement to me. He specialized in ENT, so that means 8 years of competitive medical college, here. He not only graduated but he is working with, probably the most demanding, professional patients in the world, in Manhattan. He has been in practice for several years. That is how He put the stats together in his clinical mind.

    I am repeating here, what he said to me.

    You can come up with this statistical outcome if you read the link. It doesn't mean that it is definitive, but you can follow his logic and come up with it. I didn't come up with it, nor state it as my logical conclusion. An ENT doctor in a busy practice in uptown Manhattan did. I am repeating his statement to me.

    We are all adults here, and we know that if the information isn't in the quote (which was selected to give pertinent points) you can read the entire link -- merely by clicking on it. On this post, everyone is over 21.

    I am not trying to frighten anyone. I have the disease. I have at least three arteries which are dissecting, opening up, due to this disease (and this is the diagnosis of very educating, practicing physicians, that the arterial dissection is due to the GCA and the GCA may now be systemic, which is not good, to say the least.). I am at high risk for a stroke and a heart attack. I have been hospitalized three times due to these risks. Medicare paid the bill without contesting it, stating that the ER hospitalization was necessary due to potential life threatening situation.

    I would like to know how to stop this disease or find a way to survive with this. Maybe heal the arteries. Knowing the stats is an assist in doing this.

    Currently they don't know how to stop this disease. They are using prednisone, which many consider -- not the best -- due to the side effects. They are working on biologics which may be "an answer". The etiology, even with the current studies, remains unknown.

    What they are saying is to take the prednisone, try to lower it and "live with it" until the research presents something better.

    GCA is nothing to fool around with. That is what my ENT doctor said to me. I now agree with him.

    No-one is trying scare anyone and no one is misrepresenting what is in these studies.

    I am seasoned paralegal and court case outcomes, often hinge on studies such as these. And from the information there, in the study and link presented, approximately 1/3 of those studied, died of heart attacks during the study. 1/3, by any measure, is a significant amount. GCA is considered responsible in co-morbidities.

  • With respect Whittlesey you haven't answered my point. The study says that age and sex matched mortality was the same for the GCA and control group. The GCA group may have been more at risk of mortality due to a cardiovascular event but overall mortality was no different.

    When looking at medical studies the mantra is association isn't causation.

    I am not calling into question your qualifications just your interpretation of this study.

    An ENT surgeon is not the medical professional that I would listen to when wanting to know about GCA.

  • I was not one of the researchers in the study. So I can't really make conclusions. I can present the information and draw very good inferences to the point of conclusions, from it. A well trained and aware doctor, clearly can. 1/3 died of heart attacks. That is a fact the study presents.

    The original statement is interpretative, but it was interpreted by a highly qualified doctor, (I have met rheumatologists with specialties in GCA who were actually less qualified than this man) who had seen other patients with GCA and some had passed away. And in all medical studies (this comes from both doctors and lawyers, doctors are often very involved with lawyers. I have met them), causation, is major.

    Point is, GCA seems causatively (as far as this study goes) associated with heart attacks. Here and now. This is a point we need to bear in mind as GCA is treated. By taking TOC you may help to lower you heart attack risk, keeping it lower than by continuing to prednisone. This is the kind of information we need for effective overcoming of GCA. I understand TOC has major downsides including infection and auto immune difficulties. A good doctor can look at all of this and decide if TOC presents a lower risk to the patient than prednisone. This study and its conclusions can clearly help with that.

    i.e. If a patient presents with some threat of heart risk, and now has GCA, the doctor may decide that TOC presents a less overall risk. He will talk it over with the patient, give his professional sense of this and the two of them will make a decision as to how this patient will live the longest with two very serious diseases.

  • Your statement " The GCA group may have been more at risk of mortality due to a cardiovascular event but overall mortality was no different. " is the issue.

    GCA may increase this risk, they seem to conclude, from this study, to be co-morbidities, meaning GCA may cause or help to cause it. We need to be aware of this and take it into account.

  • Hi PMRPro I am really grateful to you for correcting this ill advised statement of increased risk of mortality in GCA especially from someone who does,nt have the disease themselves, unlike myself.

    It is difficult enough living with GCA and PMR and trying to cope on a day to day basis without this irresponsible posting. I use this site to help me cope and this posting was very upsetting. I hope the person responsible will give a thought to others when posting such glum findings. Thank you once again for putting this right

  • Hello Classicmike, I have biopsy proven GCA, giant cell arteritis, temporal arteritis. I was diagnosed in May, 2012 in Mount Sinai Hospital, New York City. I am a paralegal, and news writer. I don't make ill advised statements and I don't post irresponsibly. If you had read any of my posts, you would have read that I have biopsy proven GCA. You obviously didn't.

    A statement that I don't "have the disease" myself, is irresponsible and ill advised, and ill prepared.

    And I fully know the difficulties of living with GCA. I live with it every day and I want to know what it is and what are the newest most effective treatments.This information is helpful to everyone with the rare and very serious disease of giant cell arteritis.

    I want to successfully survive this. I believe I have done a decent job of this. I have lost eyesight and peripheral vision in my left eye. I suffer with Cushingoid symptoms and nerve damage from the high doses of prednisone I was given when my eyes discs were swollen and at risk.

    There are many studies on GCA, what it really is, and what it really presents. You should read them, so you know the field of discussion. There are ongoing studies of prednisone substitutes to overcome the debilitating side effects of prednisone, which includes Addison's disease, which is no little thing.

    Go into a nursing home and speak with some people with Addison's disease. It is not pleasant and it can make residents' lives difficult and should be avoided. I do nursing home reform work, so I have done this -- responsibly and well advised. In two weeks, I and a group of workers for disabled people are going to Albany, NY to advocate for funding for disabled people, in a very well informed and responsible manner. We have been successful.

    I am a published newswriter with a very credible, American health newspaper, as well as a paralegal for many years in New York City. I do not appreciate your statements.

  • Ok Whittlesey maybe I was a little hard on you and yes it was silly of me to not pick up that you also have GCA and for that I apologise, anyone that has this dreadful illness on top of PMR has my deepest sympathy so you certainly have mine.

    Having said that l do seek comfort from this support group and yes reassurance sometimes as well. I am feeling very down at the moment and not as positive as I have been in dealing with things over the last year. I have always been aware that GCA carries an increased risk of having either a heart attack or stroke and in my case I have had two heart operations to clear blockages in my right coronary artery (one was 95 percent blocked) and had stents fitted.

    However I have always tried to put this subject of increased risk on the back burner and reading statistics on the risk of dying in terms of a few short years really freaked me out.

    The steroids are giving me, my wife, and anyone who comes into contact with me a hard time at the moment and this was not a good time for me to read your post on that particular subject.

    Sorry you came into the firing line but we have all been there.

    I suppose what comes out of this is how hard it is sometimes to remain positive all the time with these awful illnesses.

  • I , too, have have rough days, with pain, dysfunction and fatigue from the prednisone. Events, places I need to be, but can't go that day, because of the fatigue or vision problems on that day. Would rather get to a better point, than risk the downsides of GCA and prednisone. Can be very depressing and hard. I have recently been diagnosed with at least three "major vessels" or arteries dissecting - coming apart. This vasculitis may have gone systemic. This puts me at high risk for stroke and/or heart attack, now. That is difficult to deal with.

    My 36 year old son has just had a major stroke and is partially paralyzed. I have sent him the information on GCA. We don't know if he has it or not. We don't know if, had he been tested for it, prior to the stroke, -- -- they could have avoided the stroke. We don't know. His life is now vastly changed. He had just started work with a three figure salary at an energy company in Connecticut. That is now over. And he has three children to support.

    It is very difficult for me to "commute" to see him in Connecticut, (hours from Manhattan) where he is living with his children. That is very hard to live with. That I put myself at risk, merely by traveling to Connecticut and back to see him, is difficult. He can not at this time travel.

    Yes, this disease presents very difficult times, gives us days of depression and is difficult to live with. I believe in the lord and believe he will get us through, in addition to our efforts.

  • Whittlesey - at least one of the bits you quoted is in language that NO reputable researcher would use - it is emotive and would be weeded out in respectable peer review. The study I quoted was ALSO an NIH study. There is increased MORBIDITY in GCA. Some of that increased morbidity may result in mortality. As has already been suggested - please don't just quote large amounts of a study you do not have the scientific and medical background to understand and interpret properly. Many of us work very hard on these forums to support people - your recent postings have been extremely scary and are, to a great extent, pretty unfounded. Anyone who has a vasculitis is at risk of a lot of things. That is why we should be monitored regularly. But rubbing people's noses in it is not helpful - in fact, it can be downright detrimental.

    I acknowledge that you have GCA, that you have suffered some of the more unpleasant sequelae of vasculitis and that you are seeking explanations to help you feel more in control. But please don't upset others on this forum by being quite so "in your face" about the nasty sides.

  • I quoted what a very respected and busy doctor said to me.

    That is no reason for this level of anger. I do understand these studies. I am a paralegal of ten years and many of those years were spent in medical malpractice cases. We often had to go through studies like this for their use in evidential presentation.

    I also now, work in nursing home reform and speak with doctors and physicians' assistants often on cases, and illnesses concerning specific people in nursing homes.

    Doing paralegalism in medical malpractice cases in New York City, we couldn't afford a misquote and a mis - interpretation.

    What I am saying to you is -- a doctor said this to me. I repeated what he said and one of the studies available on this aspect of GCA.

    His interpretation of the study is valid. He had a right to say what he did. He reads these kinds of studies every day, in his practice and makes decisions on what treatment he uses for his patients every day. He said what he did and I answered a question on a comment concerning what he said to me. We discuss what doctors say to us. He said this to me.

    That is not "dwelling on the negative" or presenting only one side. What is the other side? that GCA can not move to vasculitis and move to heart attacks? That would be false and a mis-interpretation of this very valid study.

    And don't forget I didn't set up a post saying "GCA diagnosis means you will die in 4 years". I made a comment in a post and someone else picked up on it and then called me "ill informed" and not a GCA sufferer. Nice. I am a GCA sufferer and I am not "ill informed".

    There are many posts on this forum with comments from doctors. Mine was one. And I have seen some posts where the doctors' interpretation of symptoms seemed contrary to what could be considered "good medicine" and have said nothing.

    What this doctor said, came from his study and is an acceptable statement considering this very serious disease.

    Nothing was shoved in anyone's face. Someone asked me a question and I answered it.

  • Not anger Whittlesey - putting the other side is what it is called.

  • No, Whittlesey, they should NOT go and read all the studies. It is one thing to read the studies when you have a suitable background, it is another to read something that you don't understand and sounds scary and, even worse, get it not quite right. Many patients tell their doctors they do not want to know the gory details. My husband didn't when he had cancer 20 years ago. He devoted his energy to getting on with fairly hellish chemo and left me to look at the rest. He could have "read the studies" and sat there petrified and become so depressed he wouldn't have recovered. He would have understood them better than most - he was a clinical scientist.

    It is other people's prerogative to not wish to know. I would want to know, I do know - but I don't shove it into other people's faces unless they ask. Please don't make the task on this forum any more difficult than it is.

  • I hope to give a little morale boost here to those of you with GCA who might be feeling down having read the posts in this thread.

    I was diagnosed with GCA alongside PMR some 7 years ago. Soon after diagnosis I came across an article about a GCA sufferer which really "freaked" me out at the time, too, Classicmike. I very quickly decided to put it to the back of my mind and carried on with doing everything I could to help myself in my recovery, including looking at my diet, my exercise and avoiding stress wherever possible. It took a few years but both PMR and GCA finally went into remission just under two years ago. Yes, this can be a life-changing illness for a while but it is not life-threatening as with some illnesses.

    I am in touch with several others who have either recovered from GCA or who have reached very low doses of Pred and are certainly well on the way to seeing that light at the end of the tunnel.

    So please do stay positive and importantly try not to dwell on negative thoughts, knowing that you will get better.

  • Dear Celtic, you have no idea how much I needed to hear this. I went through the early stages of dealing with GCA/PMR (I had never even heard of it until I suddenly became very ill a year ago) For some time I felt why me? This is not only an illness that is very rare but very rare in men. (incidentally I would love to know how many sufferers on this site are men?)Having said that you ladies have been a great source of comfort to me indeed when I found this site it was an immense relief to know that there are many others out there who are only to glad to offer their advice but also share their own experiences and I don,t think it is an exaggeration to say that this has truly been a lifeline for me. Thank you once again for your valuable support

  • ClassicMike, I hope to give you some comfort, too. I am now 8 years into my GCA diagnosis and as far as that is concerned, still here and fully functioning. Our friend here, Whittlesey, has done what she is best at - presenting only one side of the picture. Anyone looking a little harder would also find the other side with the positives.

    I think we all go through the 'why me?' stage, but the answer to that is 'why not me?'. When I began to count the stakes, I decided I'd prefer GCA to MS, cancer of any kind, practically any kind of arthritis and losing my marbles (friends will tell you that's already happened. Some friends!).

    Yes Whittlesey has had a rough ride, but so have many of us here - and I don't find them dwelling on the bleak side. The other side is far prettier.

  • Thank you polkadotcom, again it's so reassuring to hear that your experience echo's mine and that I am not the only one, that surely is the point of this site Supporting each other. Thanks once again

  • Hello Polkadot, I don't appreciate the comment you have made. It is a characterization which has no basis in reality. Not only is it untrue, it is unkind. I have GCA, and I present what I have been told by professionals who are very good at their jobs. and what studies present. These are serious diseases. The point of these studies, the professionals who do them and the large amount of dollars poured into them is not "to make someone feel good". The point is to get results and to present the information closest to the truth that now exists. The point is to find the truth and a cure, or the best way of dealing with very serious diseases.

    Years ago, they used to give sulfa drugs when there was an infection. They no longer do that, they give penicillin if there is a bacteria present. Can you imagine, someone, today, insisting that sulfa be given for a bacterial infection, when penicillin would cure it without the dangers ? I can't. Possibly you might be ok with that. I am not.

    These studies are not a "dwelling on the bleak side", they are the realities, one who has giant cell arteritis faces. Knowing the reality and dealing with them is smarter and presents a potentially better outcome, then assuming "all is well" , continually and for many years, taking a drug that can do harm. Continually taking this drug "assuming that all is well or will be" presents an outcome that can cause harm. Most doctors agree with me on this.

    I don't appreciate your characterization. You don't know me. And to say and make an assumption like that is immature, mean spirited, and clearly not even closely representative of the facts.

  • Oh dear, it looks as though all hell broke loose here for a while. Can we get everything back into perspective please? The study in question compared a group of GCA patients with a matched group from the general population (age and sex matched). So far so good. The average age of entrants to the study was 78. 78!! And the follow-up period was 5 years. So at the end of the follow-up period, the average (mean) age was 83. And guess what? Between the ages of 78 and 83 some people died. Why am I not surprised about that? But people with GCA were no more likely to die than people without GCA. Oh and by the way, some of the cases in this study went back to 1992. That's 20 years ago, when GCA was much less well understood than it is now.

    GCA does not of itself cause heart attacks. Heart attacks may be associated with a systemic vasculitis, and GCA may also be associated with a systemic vasculitis. This is something that we have to come to terms with.

    Can we stop the scare-mongering please?

  • I agree with your points, Kate. Your last paragraph makes the points I was presenting. And I didn't even present them. In one post, I made a comment about a statement a very good doctor made to me about the seriousness of GCA. GCA is very serious. It can move to vasculitis. And this is something we need to come to terms with.

    When I was questioned by 'Classicmike' about what I was talking about, I explained what my doctor has said. That is not scare mongering -- that is --- answering a question, to the adult that asked it. The answer I gave was called "dwelling on the negative" "trying to scare people", etc. What you have said about the study, is what the study was. It presented results which are important to people with GCA because it was about people with GCA and they used GCA sufferers as the test subject. I did not say I endorsed the results and I knew that I would die and others would die in four years. Never said that, don't think that.

    I answered someone's question, who then said he didn't like getting information from people who were ill informed and didn't have GCA. This study is not misinformation, it is not an "ill formed" study, nor am I "ill informed". And I have GCA. Did not like or appreciate the characterization.

    The study was presented as an answer to a question. It is a good valid study. And I agree "it is something we have to come to terms with". This statement is not "dwelling on the negative" or scare mongering. It is a description of the disease we have.

  • THANK YOU KATE. I am new to this strange journey, with out these forums i would not have a clue as to what to do.Please let us not get to complicated. With good sound advice, about matters to do eyes& muzzy head visit to optitions this morning & told no major probs, please keep up the good work GIRLS.& ONCE AGAIN A BIG TANK U.Dave

  • You are very welcome Dave!

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