help please

I will have to learn how to do things privately but im not a private petson so doesn't matter.

I know what you mean once i got moving yesterday my husband and i did a home show and this morning i paid for it.

Many thanks

No - nothing to do with whether you don't mind or not - the site simply doesn't allow it! No personal details, no website links - the computer finds them unless they have been approved in advance which is how I put in links. 

To message someone click on the grey envelope under their avatar by their name and then you will write a post which only the person you are sending it to will be able to see.

I feel like a classic case all the symptoms to a tee except the toe but I'm also exhibiting all the classic prednisone side effects.

I already am getting headaches, blurred vision, faint, jitters as well as I've gained weight oh yah ad well as some rage. Told my husband to keep me in check.

Someone mentioned high altitude well this started just after one of our suba diving trips to Trinadad and Tobago. All i can say is water was my saviour all summer.

Blurred vision, this needs seeing to asap, like an emergency.  This is one of the symptoms of GCA and that amount of pred you are on will not hold it.

Don't want to worrry you but GCA is not to be messed around with at any stage. Off to the equivalent of the A&E in the UK and tell them everything  - no holding back.

For a few years before and in the early stages of PMR my toe joints hurt so much I couldn't wear shoes at all! I wore Birkenstocks summer and winter.

Keep an eye on the headaches and blurred vision - they are also symptoms of GCA, PMR's big brother, and PMR can also be a symptom of GCA developing. Any other visual symptoms and straight to the doctor, ER if it is night or weekend because GCA can lead to loss of vision that is permanent.

Weight gain can be helped by REALLY cutting carbohydrate intake - to sort of Atkins levels if you can manage but the more the better. NO processed rubbish at all - makes for much healthier eating ;-)

You remembered right Eileen, Ragnar was Captain Bob and we were shipmates on the big ship which we named 'polywhotsit and gianthingy'.

Hi everyone

In reading all the info i to am worried about GCA. To tell you the truth i knew more about PMR vs. My Dr and it turning into GCA. he has a patient with GCA and didn't know it could have been from PMR Undiagnosed or slow treatment. I should be greatful he even knew pmr here in canada. I will get on him Monday for that Rumi referal. He referred its just gettimg in.

Thanks for the support.

Im glad to hear someone ele in sandels. It October and im in mine still lol

Hi Eileen,

It would be wonderful if you came to Vancouver!!  We'd love to give you a tour of our beautiful city and any part of BC that you'd like to see. If you come, keep in touch and be sure not to make the same mistake I did in Italy and leave out part of your itinerary😳.  I can't believe we we so close to meeting each other and missed it. I'm still sad about that one.

Hugs,

Diana🌸

In sandals still as well.👍👍  When we retired we had to start going to warmer places because I really don't like shoes. 

Shoes were worn when the cold rains came and left at the first sign they stopped.

https://patient.info/health/giant-cell-arteritis-leaflet

https://patient.info/health/polymyalgia-rheumatica-leaflet

Follow those two links to a different part of this site you can read and download.  Tell your Doctor about this site, it is used my all medical people in the UK.

Also google pmr gca northeast and then under Useful Medical Information you can download the British Society of Rheumatologists Diagnosis and Treatment of both PMR and GCA.   Your Doctor might just be interested in them  - worth a try.

I have to say I'm fortunate to have a home in Toronto by the lake and north of the city on georgian bay. My son went to school in B.C and my relatives originally come from the west. My mom just moved by us at age 89 and I have to laugh these days she is way better than I. Can I ask you if you applied to CPP Disability. I will be making application this week through work for long term disability but holding my breath. I have heard our carrier turning down people with cancer and PMR is so misunderstood. Even my hueband and god love him he is awesome cannot comprehend.

That is exactly why we made a DVD called 'You are Not Alone'.  Family and Friends watched it and they then understood.   Auto-immune illnesses are complicated and even those who get them are bewildered.

As Mrs. Mac says, please keep us posted on your trip to Canada Eileen.  I would love to meet you and travel to Vancouver and Victoria Island quite often.  As a matter of fact, I'm heading there for 3 weeks at the end of the month.  I'll do anything to escape the sonw that's soon to arrive in the Territories.  

Make that "snow"....

My husband spent most of his life in Toronto and I visited with him briefly when he was at a conference. Unfortunately we didn't make it out of the city.

My Ex-mother-in-law was from your area and, although I never made it there I have seen many family photos and it is lovely.  

I didn't apply for CPP disability because I was fortunate to be able to cut my hours in the earlier months and then retired a bit early.  My husband had retired already and I had just turned 63 when the PMR hit. I'd go armed with as much info as you can about PMR and hopefully you have a doctor that will advocate for you. Do you have extended through work?  Just a thought, not that insurance companies are any easier to deal with than the gov't😕.

Good luck!!🌸

Hi Jean,

I was just mentioning you to Anhaga (who is actually another Jean).  I hope you are doing well.

How's the PMR doing?  Are you heading to Panama This year?  We're in Merida till the end of March so will miss you again on the Island.   Like so many crazy "small world" stories, maybe we'll meet in the sun👍😊.

We missed seeing Eileen in a little place called Lazise on Lake Garda in Italy because I hadn't given her the dates we were going to be there. My very big bad!!

Do you still have my email? If so you could send me an update.

Diana🌸

I'll  send you an email.

 

Well Eileen, 4 in one day  - go Canada   but keep in touch with us over that pond.

USA is doing well too. 

Thanks to Patient.co.uk  - you are a brilliant load of people - thank your parents for having you. 

Both my husband and I are widowed we were so lucky to meet 8 years ago. He was retired and I just returned back from taking a year off with everything. We love to scuba dive so we take many trips south each year and thank god with PMR I'm good in the water. We are off to St. Martin in January.

I must order the video and book because I still don't think he gets it. He sees me walking and thinks I'm fine.

you are right about the headaches and they are daily. I too am worried about GCA but wonder if it's the stress of sit and wait for rumi and possible battles with insurance. I wanted to retire this year was off during all this with burnout and stresss and truly believe it is a contributor to PMR. am I cazy to think so?

I to hate shoes and am always barefoot even in the winter in the house. Now I feel best barefoot.

Can't thank you enough. I will download all this info and send it in with my paperwork as well as my doctor. As I said I should be greatful he diagnosed it but he dropped the ball in not properly prescribing. I had a long chat with him about that and told him to never let another patient suffer. He has only seen 3 cases in his career and we're a big city. I know he wanted the rumi to verify but they don't understand the pain.

again thank you and if in this part of Canada you must get hold of me. I hate Toronto but our countryside north were our other house is on Georgian Bay is beautiful. Toronto do have some benefits.

Many thanks

You are all so awesome we'll never leave💕

Mariane,  many, many of us feel it was stress that triggered the PMR.  I expect it does for most diseases. I guess we are at least lucky to have something that will eventually go into remission.  It's knowing that day will come that keeps us going.q

It is important that your husband "gets" what you're going through.  I have to say I am very lucky that Don is so understanding but there are days that I know he is frustrated because of the changes we've had to make to our retirement plans and some days it seems like he forgets I have PMR.  We all need to have patience and be understanding. It isn't only us that is having this thing to deal with.  

Be good to yourself and spend lots of time at the lake.

hugs,🌸

Thanks everyone

we are just moving up our retirement schedule early.

we are fortunate to have 2 homes so we will be downsizing early. We are lucky to be talented in doing our own remodeling, from electrical to plumbing. We started this weekend in tearing out the walk in closet and master en suite. This is our last major project in the Toronto house then we sell before the market flopps.

I'm looking forward to the project and doing the tile work but I will truly have to pace myself now.

He has gone to see our grandson play footbal while I stay home for a break busy this morning running around getting materials.

things are for a reason, I couldn't get some of the materials in the car and this Armenian couple loaded my stuff in their van and went out of there way and came home with me. I did this 2 nights previous for a lost young women and took her to the train station.

I truly believe there is a reason for everthing. God bless you all.

Pain in the joint of my left big toe was one of my first symptoms. Of course, i didn't realize what was going on, and I was beginning to wonder if I had gout. Then pain in my left calf muscle (which continues off and on to a lesser extent, even now, a year later), then off and on pain in the left side of my neck and down into my shoulder and muscles in my left upper arm, then severe burning, bilateral groin pain, then right shoulder & upper arm pain that spread to my left shoulder & arm, then both upper thighs....I was sure i was going crazy with all the pain moving around, and the fatigue, especially in the mornings was debilitating. I too, was a very active 57 yr old when all this started. It's changed my life and I've had to learn that I can't go 90 miles per hour all the time and my sporting lifestyle came to a crashing halt. I've gradually been able to do more, but I still can't do any intense physical activity or I pay for it for days afterward. It's interesting how many of us that get diagnosed in our 50's lead very athletic lifestyles. Makes you wonder if there's some correlation.

It is true that everything happens for a reason even if we don't find out why until much later down the road.

I sounds like you have quite a project ahead of you.  Please take it very easy because if you end up having a flare you'll need to up the pred and  it will take longer to decrease the next time.  Been there, done that! 

Jean has been in touch and we're working on a way to connect all us Canadians somehow.  Should be an interesting project since I don't have a clue to go about it.  You're never too old to learn they say. Guess we'll be finding out😬.

take good care of yourself.

Hugs, Diana🌸

I am learning quickly to adjust but I hate being a side liner. Lol

Just anxious to get to the rumi, how long did it take you to get in?

Both my husband and oldest son are IT guru's.  Son James has been running an IT company for years.  I'm sure I can get one of them to assist at some point.  Even if it's something as simple as a group email.  I'm travelling for the next two weeks with both these guys and will have a chat about our options.  

We're off to visit hubby's 83 year old Mom recently diagnosed with GCA in London Ontario.  GG we call her, for Great Grandma has had a host of medical issues for many years, nearly all related to osteoporosis, deterioration of the spine and other bones.  GG has been heavily medicated for years, particularly pain meds.  I haven't been impressed with how GG has been diagnosed and treated in terms of CGA; however, I will keep my mouth shut as my mind boggles at the number of issues that have to be considered in such a complex and delicate health condition.

Three months, and at that point I was in a flare because my GP had me reduce my dose too quickly.  He put me back to 20mg and had me reduce much slower. At that point I had just found the Patient forum I think so from that point I kind of managed myself with visits to him every 3 mths to get prescriptions renewed and talk about how things were going. I referred him to the website so I think he understood I had a pretty good idea of what to do and that I also had great support from people that were either going through or had been through this.

He's not really happy that I'm at 8mg and that I have been on pred for 2 1/2 yrs plus and has suggested that I take a steroid sparer to see if I could get my dose down easier but I don't want to take more drugs (already on BP meds, statin and drops for glaucoma as well as the pred). Also, from what I've heard it's unlikely they will make a difference in the end.  I told him that if I didn't get down to 5mg by the end of March I might take another look.  Think I'll make it. That's 6 months to decrease 3 mg so that should be doable.

I think if you read as much as you can on this forum and the Patient UK NE site you will learn a lot, maybe even more than your rheumy knows😉

Hugs, Diana🌸

That's funny, my Mum was also GG.  

Sorry to hear your GG is having more troubles.  It does seem that medicating seniors is the answer for many in the medical profession.  They should be able to tell if she has GCA from an MRI or temporal artery biopsy.  Best wishes to all of you.

Sounds like you have a couple of the perfect minds to pick while you're away. I'm sure between them they'll have a few suggestions👏👏.

Remember to take it easy as much as you can while you're away. You don't want to annoy our master PMR.

Hugs,🌸

You all do email and the forum so it shouldn't be too difficult and you can arrange group Skype sessions. It is the non-internet people for whom it is more difficult because to have a local support group depends on finding others locally and someone to arrange the meeting. Though just meeting in one house/cafe for coffee is a way to start, it doesn't have to be a full-blown group with speakers straight away. Some groups only meet every 6 months or so.

It'll only work to get lower if the cause of the PMR isn't active! Bless him, he wouldn't do well being my GP - I was still on 8mg after the best part of 5 years of pred and heading for 10 years of PMR - and it had never gone away in the meantime!

The wiki entry about polymyalgia rheumatica says that patients are told to eat a healthy diet, exercise and look after themselves in the sense of not overdoing things  - and that this contributes to the disease going away faster. One lady decided to turn into a "Precious Princess" and did get off pred at last - several months later it is back but she hasn't had an easy year for a few reasons.

I had been on 4mg for 11 weeks and I was trying to go to 3.5mg when I had my lasr flare. I am not in a hurry but would like to get to 5mg or 4 where I was very comfortable before. From there I'd be happy to stay for as long as it takes or forever if that's the way it is to be. I didn't know about the adrenal testing then but I'm going to have one when I get to 7.5mg and then I'll have a baseline for down the road.

Hope you weather remains sunny. We call it an Indian Summer although I suppose that is no longer politically correct