Widespread aching and stiffness in the morning! Really that's the best definition the American College of rheumatology sites.

[Tj2017]

Dear GCA and PMR friends,

I have been astounded the last few days as I have surfed the web to better understand my disease and wrap my brain around it. The lack of information and/or misleading information is startling.

The American College of Rhuematolog defines PMR as "widespread aching and stiffness ... especially in the morning". That certainly was my experience of my early symptoms - I was thinking I was getting old and out of shape. Don't we all experience some stiffness in the morning when our body gets moving?

Yet my symptoms quickly escalated to severe stiffness and pain, inability to get out of bed without some help moving my legs and practically crawling to the bathroom in near tears. I was unable to perform, and still am, even on prednisone, basic household tasks. After reading many of your posts and looking at some websites, it is no wonder why some rheumatologist (and GP) minimize our complaints and think we are whining. They aren't getting the total picture.

The ACR website refers to PMR as an inflammatory disease. It is not obvious to the web surfer that PMR is an autoimmune and vascular disease, both which should be treated along with the inflammation. Another quote "once the stiffness goes away, you (the patient) can resume all normal activities, including exercise." Well I tried that and unfortunately ended up with sore muscle pain and chronic fatigue for 3 days. Which meant 3 down days. I now know my muscles have been deprived much needed nutrients, just like any other cardio/vascular patient and the muscles are intolerant of less than gentle exercise.

The ACR site also implies that once your taking steroids, you are pretty much symptom free and back to normal. I'd like to hear some of your experiences in regards to how symptom free you are feeling when on a steady dose. I find that I get about 75 percent relief and the symptoms of both PMR and GCA start flaring in the afternoon. I than take my smaller dose after lunch which helps. I take 40 mg in the am and 20 mg in the afternoon. (In fairness to the ACR website, it does mention the return of symptoms when tapering.)

Other misleading medical websites did includes comments such as, "it is very rare to have PMR when your ESR is not elevated," "PMR usually lasts a year, 2 at the most," "GCA does not reoccur."

Once again a heart felt thanks for this community, the administrators and resident posting experts. You are providing a much needed bridge to bring patients together to help us all heal without feeling like we are totally lost in this disease which needs much research and education. (I can only imagine what our family members read...just enough to help them not be afraid for their loved ones. My sister was totally shocked when I told her it was a vascular and autoimmune disease.)

Knowing the misinformation that is out there in the web, I encourage everyone to not be afraid to advocate for yourself, don't minimize your symptoms and print out the valuable links provided by the community members to send or bring along with your visits. Other than my GP, who later apologized after the rheumatologist and surgeon findings, I've been lucky to have the support of Stanford Medicine Has published some recent papers on PMR. I've not read them as they charge a fee.

Finally, my heart goes to those who are still suffering as Kate Gilbert mentions towards the end of her book I can't imagine their suffering when inexpensive steroids could ease their pain.

Sorry for the long post. When I worked, it's been over six months now, I worked in the Medical Device and Pharma industry specifically as a Regulatory and Quality Consultant . Special reports and executive summaries are in my sweet spot.

Thanks for reading! I hope you are having an "up" day!

TJ

[Jackoh]

So agree with your comments, it is often an uphill struggle to re- educate GPs, some Rheumatologists, family and friends. A struggle often we could do without!!!

Jackie

[Tj2017 in reply to Jackoh]

Jackie,

You are so right. We need time to absorb all the info ourselves.

Thanks

TJ

[DorsetLady PMRGCAuk volunteer]

Hi TJ,

Welcome to real world, warts and all!

It all sounds easy-peasy doesn't it? Obviously the people that write this guff have never suffered from either PMR or GCA themselves.

Yes, the Pred may reduce the inflammation, but you still have the underlying GCA or PMR, Pred does nothing to treat that. Unfortunately you need to live with that until it decides to go into remission of its own accord, which as you know varies from 2yrs minimum to whatever - usually between 4-6yrs (mine was about 4.5yrs) but sometimes never!

75% improvement is about the norm I think, some are luckier and get more, but certainly life doesn't return to normal.

As you're on 60mg, why are you splitting your dose? It's not usually recommended for GCA patients, it's thought the full dose is required in one go, certainly in the first six months, which is sometimes how long it takes for the Pred to really get a grip of the inflammation.

[Tj2017 in reply to DorsetLady]

Hi DorsetLady,

Thanks for reading my post. I am not sure I am fully accepting of the real world yet. The steroids could be making me slightly oppositional if not opinionated. I am trying. It is just frightening as our other lifelong diseases.

My dose was split because I was experiencing GCA symptoms in the afternoons. I was on 80 mg yet we opted to try 60. It is better yet the last two days have been over 90 degrees and my body on steroids did not like that at all. My rheumatologist has already warned me I will probably be longer than 2 years. Too much inflammation. I, like many of us, probably has had the disease for over a year or more before diagnosis.

Thanks for your feedback. 75 percent is like a miracle. Not complaining, just working it out in my head in case I don't get disability. I am not sure what I will do. Need to work another 15 years.

And yes, people who write these websites should check out the patient forums I go to Facebook PMR page and wish I could wave a magic wand to help those who are suffering so much. Truthful education is highly needed Do you know if there is a good forum in the US? I've been so impressed with how this site works, especially this community

Best,

TJ

[PMRpro Ambassador in reply to Tj2017]

Tell me about it!!!

"The steroids could be making me slightly oppositional if not opinionated." - blame the PMR! Iwas far worse in that sense pre-pred!

And no, sorry, no US forum, you are all here or on the patient.info one. There was an attempt to get one going on the other side of the pond but a forum does need a critical mass to take off and it didn't seem to happen. Mainly I suspect because there weren't any old hands with the relevant background. There WAS a small one 9 years ago but it got hacked/infected and disappeared. Some of the people on it came and joined the original forums here - this HU one is the youngest. The other two both had server problems a few years ago and the communities lost contact during the year or so the problems started and it took to sort them. patient.info is now very active again, the other one is just beginning to wake up.

[Hindags in reply to PMRpro]

Thanks for the history lesson. I was wondering about the different forums. I started out on Patient.com but have become more at home on HU.

[HeronNS in reply to Hindags]

I like this forum too, but I find Patient much easier to navigate and to keep track of the various threads. I know I miss most of what gets posted here.

[piglette in reply to HeronNS]

Heron, if you press Following at the bottom of the first post on any thread, you will be told about any additions. That means you should not miss anything.

[HeronNS in reply to piglette]

But much easier to miss the original posting here than on Patient where the notifications tell me about all new posts in groups I follow.

[piglette in reply to HeronNS]

I thought HU did too??

[HeronNS in reply to piglette]

It's different. I get overwhelmed with email notifications, and in fact have turned them off for Patient. Patient provides us with notifications in a handy box right on the page, both new posts and replies to anything you've followed, and it's very easy to know when you've read everything new.

[DorsetLady PMRGCAuk volunteer in reply to Tj2017]

Hi again,

I think for many people, especially those on the lower end of the age spectrum find it difficult to accept there is no end date for GCA/PMR.

We are programmed to have things in neat chunks, with a pre-determined end (except life itself of course) - we know how long we need to be at school, or university, how long a mortgage or loan will take to pay off, if we break a leg how long it will take to mend etc, etc.

With our illnesses there is no official end date, and sometimes many medical people don't help by blithely saying "oh about 2 years " . I think they're frightened of saying I don't know , but could be this..." That way patients wouldn't have unreasonable expectations and be disappointed when the 2 years comes and they still have the illness.

I was diagnosed by ophthalmologist, because of eye problem, and he said -"could be on Pred for 2 years, probably much longer, and maybe for life".

I had no illusions, so I didn't keep thinking I must reduce, or I'm doing something wrong. Took me 4&half years. And yes I had it 18months prior to diagnosis - so 6 years in total - not unusual!

It is frightening to start with, but it's not terminal, and unlike lots of other diseases it's liveable with once you get the Pred levels correct. You do have adjust your lifestyle, certainly early doors, but that's what all life does!

I understand your concern as you are still working, but GCA is recognised as disability, certainly in U.K., so I'm sure you will get assistance, the problems is that it's misunderstood, so you may have to fight more than you would like.

As PMRpro says, many US members on here as there doesn't seem to be equivalent forum for you, but sure you would get responses from your countrymen/women if you asked specific question re working. There are quite a few of working age I know.

[piglette in reply to Tj2017]

Hi tj2017, I was reading an article this week in a medical journal on bereavement. They were not actually talking about someone dying but the problem people have when they get a chronic illness and the bereavement they have when they lose their good health or way of life they have known in the past. It is good to know that such a loss is recognised by the medical profession.

[Ladybird25 in reply to piglette]

I agree with you Piglette. When I was doing my nursing degree one of the modules was "Bereavement and Loss", and it covered long term health conditions and loss of way of life/function, as well as conditions like strokes and MS. No wonder many of us go through a process of grieving for a lifestyle that we may never achieve again. A patient told me about the three As: Adapt, Adjust and Accept. You can do all, one, two or none of them and achieve new goals. I've had patients say to me that they're glad certain things have happened to them as they've been given new opportunities that they wouldn't have experienced otherwise.

[Tj2017 in reply to piglette]

Hi Claire and Piglete,

Thank you for your posts. I definitely can identify and I think maybe even say I am "future tripping." Thinking of all the worst scenarios that could happen and the possibility (truth) I will never be the same again. I am pretty sure my mom had undiagnosed PMR in her mid fifties. She was very limited in mobility for the next 10 years. She was a smoker and a drinker and the docs blamed her pain from those unfortunate habits. I am sure they made it significantly worse. If they had only tried prednisone, she might have gotten some relief.

I like the "adapt, adjust and accept" process and will definitely be putting that into action.

I hope you day is wonderful.

Best,

TJ

[Patience47 in reply to Tj2017]

TJ, your post was spot on, and I too am astonished by all the misinformation put out there by so-called experts. Thank you so much for your post.

Edward

[PMRpro Ambassador]

I forgot this when I replied the first time:

healthunlocked.com/pmrgcauk...

ALL GPs and rheumatologists should be forced to read this!

[Tj2017 in reply to PMRpro]

PMRPro,

Great article. I will be sure to print this out for my GP and the rheumatologist. Enlarged print maybe!

Thanks for you post.

TJ

[HeronNS in reply to PMRpro]

This is a fantastic article. I'm glad the author made it freely available. I went to some trouble to read it at our medical school library and they printed off a copy for me, and I read it over and over, it was so reassuring to know how typical, actually, my experience had been to that point. Although we are "all different" in one respect I think we are very much the same, and this bit of research certainly shines a spotlight on it.

[Suzanne457]

Thank you TJ for this very important and useful post. You are SO right with every point. I have thought also a lot about how little accurate info there is available on the web or anywhere else ( except here on this Forum) where we can learn more about these diseases PMR / GCA. Thank you again for taking the time to post this . I personally will be printing your post out to use when necessary to help inform specific " others " correctly. You have been "spot on" ( love this English term) with your observations !

Suzanne

[Tj2017]

Thank you Suzanne. It is wonderful to have this community to keep us stronger. Have a great day!

Terrie

[Suzanne457 in reply to Tj2017]

Thank you Terrie.... you have a wonderful day also !!

Suzanne

[BirmLiz]

Hi Tj,

When my PMR hit fully I hit the web. Nowhere could I find anything that matched my symptoms and I thought I was facing a weird illness that was so unusual that it wasn't mentioned on any medical website (I had a sister in law who had a rare form of MS that started with similar symptoms). I had a 14 week wait until I could see a rheumatologist and in that time had fully decided that I couldn't face life in a wheelchair. My son had just started University and my daughter had just bought her own house. I decided that if it was bad news I couldn't ruin my children's lives and was going to shuffle off this mortal coil by my own hand. If there had been accurate information on any medical website, I wouldn't have gone through this turmoil.

On a lighter note it was my hairdresser who diagnosed me a week before my first visit to the hospital. She watched me struggle to get to my seat and asked a few questions like 'Do your shoulders ache? Do you struggle to get out of the car?' and the like. She then said her husband had PMR and she reckoned that so did I. When I looked again on the net, I decided that at a stretch, it could be PMR and I wouldn't be disabled for the rest of my life.

Because of the attitude of the medical profession I have been polite but determined in my dealings with them. When they sent an appointment through for a nuclear imaging scan I read the pamphlet and rang and cancelled it. I told the rheumatologist that it was a torture too far considering what PMR had already put me through and as it couldn't give a reliable diagnosis, I wasn't going to endure it.

The best description of PMR I have read outside of this site has been Wikipedia and I think it was written by someone who has suffered it himself. It would be wonderful if people who had first hand experience of illnesses could add to medical websites.

Wishing you all more good days than bad in the future.

[Tj2017 in reply to BirmLiz]

Hi Birmliz,

A good hair dresser is like a good husband. Once you find a good one, don't let go. I am Thankful to your hairdresser and that you are part of this community. I am sorry for your frightful turmoil prediagnosis We all have seen friends suffer with horrible illness. it is easy to let our minds get too far ahead. I have a friend now who has scared herself so bad she won't go to the doctors.

I haven't read the Wikipedia description yet. I did read the Eyepedia and that was pretty good.

I hope your week has more ups than downs.

Best,

TJ

[jinasc]

Take a look at this website

pmr-gca-northeast.org.uk read as much as you can:

a) International Survey - a link to this survey run by an American since 2008

b) DVD 'You are not Alone' and 'Living with PMR & GCA' written by PMRpro and A N Other

c) links to research

d) groups.yahoo.com/neo/groups... - this is a restricted

community because it only contains hard information.

c) a pm will a request to be put in touch with a small group located in the USA - your email address will be forwarded to them.

Meantime, don't be too sad the Mayo and a couple of other R&D depts which are in ARC are working for many years with EULAR and they are making a difference.

In the past 8 years the profile of both these illnesses has been risen because 25 people met in London and decided to start a national charity in the UK.

Now, 3 charities and many support groups and this forum, Patient.co.uk and pmrandgca. myfunforum.org.uk.

We are getting there....................

[jinasc]

Oops

meant to add this link

marijke-foundation.eu/Websi...

Pure research and extremely interesting............

[Tj2017 in reply to jinasc]

Thanks Sambuca. I will definitely take a look! Thanks for your informative post. Have a great day or night?

Best

TJ

[navejasjoe]

Hi TJ,

Within a couple weeks of starting on prednisone, my wife's inflammation numbers went down to normal levels, but she was far from symptom-free. At 15mg daily she got to feeling almost symptom free. The tapering process took her down to the point where at 7.5mg she was almost back to day 1 of the PMR diagnosis. She has now been on 10mg but she is probably about 75% of normal activity. She would like to go back up to 15mg but she has seen what 10mg has done to her blood sugar and weight gain. So for now, she is content at 10mg and 75% capacity.

Joe

[HeronNS in reply to navejasjoe]

Navejasjoe, Has your wife been able to eliminate some of the stress in her life? I know I wouldn't have been able to "recover" so quickly had I still been working, and also had I still been dealing with the stresses that had afflicted me the previous year, the year I evidently came down with PMR although it took about 14 months to get diagnosed. Over the past two years I've got very good at "just saying no". It took a while but I've come to recognize my limits and I say to my family or my friends that I can't do something, I don't have the stamina.

[navejasjoe]

Hi HeronNS,

My wife came down with the PMR symptoms in January, 2016, about 3 months after her mom passed away. Then our oldest son moved in with us in December, and she was doing a lot for him, including meals. All that stress got to her, and she was finally diagnosed with PMR, May of 2016. He has since moved out.

It has become increasingly difficult for her to go upstairs. That plus the need to downsize to a smaller house will mean more stress having to move from our home of 21 years.

Joe

[Tj2017 in reply to navejasjoe]

Navejasjoe,

Thank you for your post. It is definitely a stressful time for you and your wife. My husband and I need to downsize as well after 18 years. Just thinking about it makes my head scream "too much!" So I can only imagine her pain, even with 75 percent relief and oh those awlful steps. Hopefully, downsizing will be the beginning of a more comfortable and less painful environment.

TJ

[HeronNS in reply to navejasjoe]

One of my stressors was a potential home change. We've now put that off into some indefinite future, unfortunately, but much easier on me for the time being.

I don't know how rapid your wife's taper was, but perhaps it was simply too fast?

[navejasjoe]

Hi HeronNS,

The taper was definitely too fast. 7 months after original diagnosis, the rheumy had her down to 2.5mg daily, even though her symptoms were back to ground zero shortly after going to 7.5mg.

Joe