I'm new here... this much I know, PMR under 50 is... - PMRGCAuk

PMRGCAuk
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I'm new here... this much I know, PMR under 50 is not the norm but NOT impossible!

ExtraTuff
ExtraTuff

I don't know how I found this group but I'm so glad I did. I live in a small town in South Central Alaska with very few support groups of any kind let alone one for PMR patients. I read someone's post several nights ago and was too tired to comment. They talked about being under 50 and docs not treating them for PMR. I went through hell the first 18 months, my general doc suspected it but the other specialists wouldn't believe it because of my age and my c-reactive protein numbers wouldn't go down on Prednisone for a long time. Finally I got into a rheumy (the waiting lists are long here like other parts of the world) he said I was an 'outlier' but not the only one. I am so grateful for finding him!

Other 'outlier' symptoms and problems have emerged that I can probably go into, in time, in this group. But for now I just want to say THANK YOU to all of you that contribute and help to support each other on this rocky road we travel. Like most of us I would guess, I have really bad days and not as bad days. I need to keep fighting to keep my head above water because I have a wonderful husband and amazing 12 year old twin girls that don't deserve to suffer my ups and downs. Maybe I can lay a little burden down here and I hope to carry some of others when I can.

As W.H. Auden said...“We are all here on earth to help others: what on earth the others are here for, I don't know.”

I'm tapering Prednisone again, any advice is welcome.

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Dear ExtraTuff! Firstly, I love your name, it's perfect! And secondly, welcome to the group! You are absolutely in the RIGHT place to listen, learn and lay your burden down.

You will find the experts here knowledgable and very eager to share! And if it's a "shoulder" you need, you'll have more of those than you'l know what to with. So please, feel free to bring us your burdens, lay them down and you'll find the weight lifted.

I hope your time here with us is short and easy!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

Most on here would agree with your comments, but the difficulty seems to be finding doctors that agree!

Usual recommendation re tapering is not more than 10% of existing dose, and preferable done on a monthly basis (although some docs like every 2 weeks) provided no return of symptoms. As you get to lower doses sometimes a slower taper is required (i.e. taking a few weeks to get from old to new dose rather than overnight).

Have a look at this - might give a bit more info -

healthunlocked.com/pmrgcauk...

Hello and welcome Extra Tuff! I love the Auden quote, it ought to be our mission statement. I am glad that you finally have a diagnosis and a good wise doctor and I’m very glad you found us. Fire away with your comments and questions. I have always fancied visiting Alaska.

I share your guilt about being the bad tempered party pooper in our family. My two daughters and their families live in Australia. My husband and youngest son live here with me. We have had contributors in your age group before.

PMRpro
PMRproAmbassador

Welcome - and do please try to get your rheumy to publish articles of some sort, even a letter to the BMJ (British Medical Journal) would be a blessing!

You don't say how old you are nor much about your symptoms, off and on pred, nor your dose at present, whether it works well and how much you are trying to taper by. Sorry to sound intrusive but they are all factors that are important to give a half sensible answer.

ExtraTuff
ExtraTuff in reply to PMRpro

No intrusion, thank you! I finished my profile with some of the details. But for the record I just turned 51, I had the onset of symptoms in March of 2016 after knee arthroscopy surgery (my 5th one of them, bad knees from gymnastics as a youth) I have had a rollercoaster of Prednisone doses over the years and one taper that resulted in a relapse last August. My rheumy had me taper again in March, but of instead of his suggestion I am doing the 'Dead Slow' method I found on this site. I'm down to 1mg but not sure how long that will last. I just had cortisone shots in my hip yesterday for bursitis. They saw a lot of arthritis on the ultrasound so I don't know how much it will help. We'll see, I think some symptoms may be returning but I don't know yet.

PMRpro
PMRproAmbassador in reply to ExtraTuff

Yes - similar to me. It started in the middle of the year before my 52nd birthday but it was 5 years before I found someone who agreed with my suspicion (after 5 years and a busy few months scouring the internet) that I had PMR. I'd had one rheumy tell me my knee pain was OA (14 years later there is still no sign of OA in that knee) and the other (much later) wanted it to be anything but PMR, it seemed beneath his job grade to agree to that!

The Dead Slow approach was developed due to the immense difficulty I had reducing at all and is based on a taper a gentleman in Sweden had worked out to get to zero from 5mg without flaring.

The hip bursitis has never really gone away for me and it was a major component of the PMR in those first 5 years. I had injections a few months ago. The right is fine I think - the left is making itself felt again. Oh joy!

Welcome and here is another link to read and download..............just when you feel like it and remember you are not alone, there is a whole spectrum of humans and 99.9% are lovely caring people. That we would not know unless we had the 0.1%.

Those Vikings did get around.....................

pmr-gca-northeast.org.uk

As PMRpro and Dorset Lady have said little bit more info, like when diagnosed, how much pred then and now etc. Don't have to put it all on here, just in your profile. Sometimes there are things we don't want out in the big wide world and the private messaging is a bonus.

Hope your individual tunnel is a short one, but there is light at the end however long.

ExtraTuff
ExtraTuff in reply to jinasc

Thank you so much.

I took a little time to finish my profile and thank you for the info on messaging. I look forward to learning more and having a good place for questions and a little venting.

Hi I'm fairly new and live in rural New Zealand so ditto with support groups etc. I have had so much info and support here in the last month, even though I'm on the other side of the world, I feel part of an amazing community. Well done for finding it.

Welcome to the club I didn’t want to join either. I have PMR and GCA tapering pred down very slowly, had one flare don’t want another. We can relate to the mood swings as can our families. 😱 Lots of good advice and support here and sometimes humour too. All good wishes.

Loved your quote, made me laugh. 😂

Welcome Extra Tuff,you will always find a great deal of help and support on this forum.lt must have been dreadful for you to have suffered with PMR symptoms for all that time before it was finally diagnosed.l hope you will gradually ,with the right treatment,begin to feel better,it will take time and you will have to pace yourself and not overdo things.lt can be a long journey and l hope that your family will understand.l hope that the length of time you have waited to be diagnosed has not made things worse than they would have been.l wish you all the best.

Poor ExtraTuff. What a rotten time you've had. Nobody wants PMR but I think it is especially bad for younger folk. Having twins to look after while suffering from that doesn't bare thinking about. So glad you have an 'adorable' husband to help. Glad you've found this forum. There are some knowledgeable people here and the rest of us are just sympathetic 🤪 Good luck with the journey 💐

What a beautiful part of the world you live in but being an 'outlier' in more ways than one is challenging, lovely when you're well, isolating when PMR strikes... so glad you found this virtual village where our burdens and our bounties are shared.

One thing that 'does my head in' is trying to explain the unpredictability of PMR and its effects on energy, mood and pain levels especially when we look all bonny and blooming on steroids - your loving family have travelled with you through all the ups and downs, what a source of comfort to you to have their love and don't feel guilty, you're still 'Mum' (or Mom!) to your daughters, they are strong together and you are a good communicator so they are not burdened with unexplained changes. Stress only adds to the PMR mix. And it will come to an end. All the very best.

Welcome

I just found this group a few weeks ago and the info has been amazing. Thanks to all for all your sharing of a very difficult problem

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ExtraTuff
ExtraTuff in reply to Hidden

Thank you! Your journey has been more than I can imagine, and you are so generous with your offering of self and ideas. I will message you soon.

Welcome, ExtraTuff! I had just had my 50th birthday when my GCA symptoms began and it took me 9 months for a diagnosis. I would still be suffering badly and likely blind if I hadn't found out about GCA on my own. I had a rheumatologist and an opthalmologist refuse to treat me based on my age, insisting that you can only have GCA if you are older than 55! I went back to my primary care doctor ready to give up when she readily diagnosed me and upped my Prednisone to 80 mg to finally rid me of my temporal and other pains I thought I would have for the rest of my life.

While I am a grandmother to 2 wonderful grandsons with a baby granddaughter on the way, I still have 4 kids at home ages 10, 13, 17, and 20. I can relate to feeling bad that our kids have to go through this with us! I feel I have been somewhat absent from their lives this past year as I spent countless hours in doctors offices, having tests, ER visits, and sleeping to avoid the conscious pain.

I'm still on 65 mg of Prednisone and waiting for my lab results to see if I can decrease. I dream about feeling normal but unfortunately, I suffer many autoimmune and other chronic diseases that prevent that. Even so, I can honestly say that the GCA symptoms we're the worst I have ever suffered! We are all troopers here. Hopefully, most are blessed with understanding family and friends. I know my own do not comprehend how GCA has affected me, they are at least trying. ☺

PMRpro
PMRproAmbassador in reply to Mombeck67

I do wonder how many people end up blind or at least very seriously ill because of ignorance on the "age limits". There are several publications in the medical literature warning against missing GCA because of the mistaken belief that only people over any given age can have it. And it is particularly bad when they get the lower limit wrong.

had

Mind you - someone said recently the doctor said people OVER a given age can't have GCA!!!!!!

ExtraTuff
ExtraTuff in reply to Mombeck67

I got shivers reading your post, I can only imagine almost losing sight and 4 children at home. I believe kids understand better than we know, they don't always know what to say or do. I realized yesterday that I had not explained the whole ordeal to them very well, it was hard, I cried, but I think they now can understand more of my emotional ups and downs.

The stubborn doctors make me crazy. When talking to my daughters I reminded them of incident with a cat we have named Blossom. There are things in Alaska that locals like to make blanket statements about, one is that there are no ticks here. Well one day, 2 years after we had gotten her from a shelter she had a big tick on her. It was inexplicable, but there is was for all to see.

I so hope you see improvements on the lab results, it took so long for my c-reactive protein level to go down, it was another thing the doctors would say didn't make sense, so frustrating!

We are all troopers here, thank you for your story.

Mombeck67
Mombeck67 in reply to ExtraTuff

Good news! My inflammation is staying down so I reduced today. I'm trying to stick with the recommended 10 percent reductions in Prednisone monthly, as long as my inflammation stays down. I hope your inflammation comes down nicely, also. My hope for all of us is to reach that point that we can come off of Prednisone or at least get down to a tiny dose. It seems the trick is to take it very slow. 😉

ExtraTuff
ExtraTuff in reply to Mombeck67

That is great news!! I found this forum a while back when looking for another option for tapering. My first one didn’t go well. Here a a link:

healthunlocked.com/pmrgcauk...

I have been using it for months, I did 2 things, printed out the post for my Reumy and TOLD him I was going to try this way, and second bought a small calender and wrote the schedule down. It’s impossible to remember for me anyway. So rather than the goal of no prednisones by April I will be down to almost none in July, and so far so good. Other pains are rearing their head but I can separate the two mostly. Oh, I also started on Mobic once a day -last month. It’s a good long acting anti inflammatory, everyone is different of course. This was another thing I asked my rheumy for, he didn’t offer the idea.

This forum has been soooo empowering for me, can you tell!?

Here’s wishing us the best, as you said.

PMRpro
PMRproAmbassador in reply to ExtraTuff

Careful with Mobic and pred at the same time - they can both cause stomach irritation. If you start getting any stomach problems speak to your doctor.

And don't set yourself a fixed goal for being off pred - you aren't heading for zero necessarily, you are looking for the lowest dose that manages the symptoms. That isn't the same thing at all and if you get stuck you will be disappointed.

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