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PMRGCAuk
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Famous American Sports Personality Reveals His Battle With PMR!

He did this yesterday on his national tv show. Please google "Dan Patrick". You can watch it. It is big news here as he is very well known in the tv sports world.

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Dont know if I like the idea of light Chemo

But what a way to inform people

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I’m presuming it’s Methotrexate? He doesn’t actually say, l was reading it in the Nail Salon with poor WiFi so thought l’d check it out further now l’m home!

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I did wonder if that's what it was

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It was Actemra. If you can watch him talk it is more powerful. Maybe I can post the tv link.

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Thank you for that

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Hi

Yes I did watch it Googled it

As you say very powerful

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He said Actemra.

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It is Actemra that he is being treated with now at HSS.

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Thanks for this. I have seen his face on things (i am.in the uk) Its just a shame headline is joint pain....but thank goodness they name it in the story. At least people may google it now and those who need help get it and people with a family member dx will be more understanding.

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He is considered one of the really good guys in his profession. No conceit....unlike many who are on tv.

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Excellent !!! That really spoke to me and I almost cried. Thanks for sharing.

I'm glad he talked about prednisone. He shares my viewpoint that prednisone gives you a life relatively free from the pain of PMR --- I get that!!! However, it is like any other drug-- there is a cost. For me, it was mostly lethargy where I didn't want to do much. I felt that most of what I did in life before PMR would never be possible again.

Today, I went to an aquacise class for seniors. It was fun!!! Before going, I worried that I wouldn't be able to get into the pool and out again. That was easier than I expected! I actually could still swim a couple of laps. Yes, it was exhausting but I can't wait to go again!

I am beginning to learn that being off daily prednisone is giving me my life back too.

I wouldn't call Actemra chemo though !!

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In the article l read he talks more about joint pain rather than muscle pain. I’ll see what else l can find!

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Yes, I wondered about that, too. But he also talks about feeling like the flu without nausea...which is muscle pain, no?

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Yes, I’d guess so, sometimes it’s very difficult to explain exactly how you feel, especially if you’re on the Radio telling everyone about your condition.

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True. And sometimes doesn't it feel like joint pain in the wrists and fingers, etc. For me, it often does.

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I am referring friends and family Mr. Patrick's article above. It is very hard for anyone to explain this disease, it is forever changing. He did it splendidly, could have been my story.

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I would have thought so. And the fatigue that PMR and pred can cause.

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So you were on Actemra? What was your experience?

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I still take it ... injections every two weeks. I don't know what to say other than it seems to work as well as prednisone. For some reason, I now have more energy to do things that I stopped doing. It is like I am re-inventing myself.

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Do you think your revitalisation is +Actemra

or -pred?

Or adrenals back into full production?

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+ Actemra ... yes, but too soon to tell for sure.

- Pred ... somewhat, pred worked for pain for sure...unwanted side effects seemed reasonable but never had the energy to do much ... to truly enjoy doing things.

Adrenals are NOT into full production. Endo is concerned but optimistic. I think adrenal insufficiency was what caused the lack of energy. I think it is false that prednisone covers one's cortisol needs. Prednisone actually disrupts something vital.

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Thyroid hormones. It definitely hinders TSH production. Lowers serum T4 and T3. (I did some reading when dog was diagnosed with Cushings and had super-high cortisol; she was also borderline hypothyroid, but the hope was that would lift as cortisol levels decreased. The vet seemed to be aware of these things.)

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Ok, sounds good. I'm glad for you.

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I am taking Actemra pen weekly, working my way down from Pred. So far so good. It does affect your memory....which can be scary.

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Try not to worry about that side effect, the more you worry the worse it becomes l had ‘Chemo Brain’ l HATE that description, l prefer Cognitive Impairment! It does get better once you’re off the drug, just take it in your stride & Good Luck 🍀

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I’ve been on Methotrexate twice.

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I’m a little confused (what’s new?)

He’s had PMR for 7 years (it’s good that he advertises this) but I’m not clear how long he was on pred?

I’m disappointed that he talks more about ‘bad pred’ than PMR.

Actemra isn’t going to be offered to most of us with PMR.

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I didn’t think Actemra was a ‘Chemo Drug’ low dose or otherwise? I wonder if it’s a Combination with Methotrexate for example?

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Its could be like saying i am on a "transplant anti rejection drug" rather than a dmard/ssa/ immune suppressing drug. Same drug different uses. Are mxt/actemra used for chemo...she said repeating. 😂😂

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Methotrexate is still used but not so very much these days as there are better, more effective drugs.

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I suspect it is given in the "chemo suites" at the hospital he goes to. The "chemo suites" are used for all kinds of infusions.

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Perhaps it actemra is the one he mentions as it works il6 which according to wiki says is implicated in prostate cancer and some other cancers. Maybe that how it has been explained to him?

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I am on Actemra....was advised when I started it is a chemo drug, but with other uses.

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I suspected thats what might have happened. Thanks for that. Apparently he was probably treated in a chemo suite too..

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I had the option of infusion once a month or did detail (think that's the word). Due to cost and travel distance I chose doing it myself .

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Didn't mean detail meant sub dermal, can't remember.

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I wouldn't say "bad pred" because it is better than PMR. I wouldn't say "good pred" either. I only take injections of Actemra every two weeks. I don't know if it is the answer but it seems okay. I don't want to jinx it either.

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I wouldn’t say ‘bad pred’ either. I’d prefer pred to the alternative. I did get brain fog (steroid dementia) and it was extremely annoying, better now in single figures. But we don’t all have a PA on hand to remind us what we forgot! I had to use the C21st equivalent of pen & paper for lists and appointments. I’d be lost if I mislaid my smart phone!!

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I have got to say in the months leading up to diagnosis, so pre pred, i was so foggy and forgetful than i was thinking about going to the doctors for a early onset dementia! It got a bit worse, like you say, at higher doses. I havent found pred to be "bad"....i was in much worse shape before it.

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Do you not think that the constant pain makes thinking more difficult, as that is the overriding thought in your mind, above everything else?

I think your head clears once you are on Pred as the pain is reduced.

I couldn’t stand the radio & the constant chattering, it drove me mad!.....

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Noise, chattering, inane radio music belching from shops. Urgh! Hence I stick to Radio4 where generally one person speaks at a time, with some intelligence. Maybe that’s not pred, maybe that’s just me 🤫

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I still cant cope with things like at xmas when there were 10 people talking, music on just too loud for me, 3 kids playing boisterously and 2 dogs fighting over food. That could be a combination of pmr/pred/fibro. 🤤

I used to like some loud music every so often but haven't even got anything to play it on now about from online ...i don't miss it. Crowds not good as i feel a vulnerable to being pushed into and setting fibro pain alarms off. i listen to radio 4extra as theres no news which suits me. Maybe i am just anti social?? Constant pain does make thinking hard. Its like wanting a pee and you can't think about or do anything until you go. 😂😂😂

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I know sometime l just think l’m just miserable but l know deep down, l’m not. We have a lot to put up with, one of the worst things for me is at Service Stations on the Motorway & the drone of the cars as you walk in, until you get to the loo & the sound of those high speed hand dryers! It drives me crazy! 😱

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Its horrid when something grinds on that last nerve.

Re the story. It didnt have a timeframe for the golf attempts that were funded by vicodin and booze. Understandable as you try anything to claw your life back sometimes, but i wouldnt be able to throw a golf club never mind hit a ball with it. Perhaps some people put more pressure on themselves to reclaim lives that inevitably change for a while at least. Like many who have pmr/gca i spent years pushing myself through pain and stress barriers to the extent i had no life outside work. I accepted that until my body, and mind, after 7 years, said no. I knew i had to make changes to have a better quality of life. Yesterday i went to the peak district, saw the bluebells weren't quite ready yet. Walked for a bit then sat on a bench, carved to look like a leaf wth slugs on it, in tbe sun throwing the ball for the dog (elbow brace on) listening for my first cuckoo. I chatted to my friend and and had a bit of ice cream that the dog finished. I called at the garden centre and bought potato and chilli seedlings to plant in pots eventually - will eat them young. The reservoirs were lovely and full, the "dambuster" dam sunlit, the beech trees vivid green. It was a good day. Each year i get more patient, i would go mad otherwise 😂😂😂😡😋😢

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Sounds wonderful

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Yes my life has become very slow and nature centered.

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I don't like bank holidays as all my little benches and favourite spots are invaded. I suppose it the price to pay for being near beautiful countryside. 🌲🌳🐌

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Maybe because he was on pred for so long they decided at HSS to try Actemra. HSS is ranked #1 in the country in Rheumatology so...

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That was true in my case. It was interesting that my insurance company denied the request but for some reason I still get it. It is through the VA hospital that is associated with the university hospital. I think the doctor had to pull some strings.

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You are a veteran? After our experiences with the US army - you have been checked for latent TB haven't you? I've been told I would have to have 8 months of anti-TB treatment as my husband appears to have eebn exposed at some point. And he was only a choir director!!!!

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Yes, they checked for latent TB. I think I'm immune to most things because of all the vaccinations that the military shot into me via air gun. It was the only time I was shot at.

My military years in the early 70's were easy and I enjoyed Holland. The orphanages in Romania in the 90's were more dangerous.

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I was turned down by insurance also, think due to the cost...in our area Actemra was going to run about $4000 a month. We sure can't afford that, yet within 2 weeks of being rejected the chemist called to say it was approved???? Go figure.

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My Rheumy is at HSS and it is where I was diagnosed with PMR. She was part of the team that did the Actemera trials that led to its use for PMR. Unfortunately due to some other health issues I am not a candidate for using it.

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I'm not sure there have been any trials for PMR unless it was recent. As far as I know, the only studies have been for GCA. My rheumy mentioned a study for PMR awhile ago and said I may be eligible---that was about a year ago.

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Thank-you. I have duplicated those results but I'm taking the injections every 2 weeks. I started January 1st and off of prednisone as of 4 weeks ago. I had decreased from a prednisone dose of 7 mg but was on the verge of increasing back to 8 mg (10 mg is my usual) when my rheumy suggested Actemra. Adrenal insufficiency is now the issue. I suspect adrenal insufficiency has been the issue for a long time.

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Hey Rocketman. When I went to HSS I saw Dr. Markenson and he was telling me that they were the ones who were doing the trials.

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Thank you for posting that.

Sorry he has PMR. My first impression was that I am glad to hear him give air time and raise awareness about this dreadful PMR. Also glad he thinks he has found something better than Pred for his circumstances. This really shows that we are all so different!

I wish he had told us his dosage of Pred so we could get a reference point for his 'bad Pred'.

I agree with you all who said pain side-tracts our thoughts. And sometimes my thoughts can side-track my pain, all depends on the severity.

Does the vicadin that he used to help him play golf have an effect on PMR pain?

Thanks again.

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I would suspect mixing vicodin and booze was self medicating into tje state where you are in pain but "dont care". It may have helped delayed onset muscle soreness if taken the next few days.

Your mind distracting from pain is one your best resources.

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Hyrocodone is an opiod - and they don't do much for PMR according to all the people I know who have tried them!

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I think he was illustrating how awful his PMR was to have to use vicadin. I don't know if it even touches PMR. I will see if I can find out more about his 7 years of PMR. But I made sure all my siblings watched the video! Maybe they will stop with the condescending "feel better."

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No. It wont work for pmr itself. I agree it was a coping mechanism trying to reclaim life. Mixing pills and booze is desperation. Sadly we know that celebrities also fall prey to that desperation and have the money to pay doctors who hand the pills out like sweeties.

I think the main thing is that you can show family it. Somehow when a famous person has a problem people sit up and take notice. Even when they have seen you struggle with their own eyes!

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Keep us updated, as in is he ‘cured’ in 5 months. That could be an anticlimax for him.

Would be nice if he stopped by the forum 😁 anyone tweet?

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I’ve Tweeted him & asked him if he’s time to keep us updated on his progress!.....

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Modern life.....

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Great. I bet we hear from him. Good of you to do that.

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Thanks for posting this. The more “play” PMR/GCA gets, the better. Awareness is important for many reasons, not the least research and eventually other possible treatments. His words resonated with me.

Actemra is only available in Canada for RA and GCA, not PMR.

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PMR since 2014, my doctor wanted me to try Actemra, but it is very expensive and my insurance denied the doctors request to have me use Actemra.

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A really interesting video. He doesn’t say whether he is now off prednisone or not? I do relate to some of his descriptions about his life. I think I’m one of these people who is trying to return to ‘normal life’ pre PMR. I struggle to accept that might not return.

Is Actrema similar to immune boosting drugs that are offered for some cancers eg melanoma? Does anyone know? My Mum has just been diagnosed with melanoma and this is the treatment offered. (I’m in UK) Her consultant described it as boosting her immune system to fight the cancer. That’s the simple layman’s version. I did wonder whether these sort off drugs would work for our PMR? Will ask my rheumatologist when I see her in June.

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Hi Lochy

Dan did say he was off Pred now.

MrsN

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Thanks must have missed that. Brian fog 😂

I wonder if he still had to taper whilst on Actemra?

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I wondered that too?

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Yes, you still have to taper, but at a faster rate...probably need an endocrinologist involved when tapering in case the adrenals don't kick in fast enough.

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Our immune systems are too "boosted" as i understand it. I don't want mine to get any stronger 🤣🤣🤣

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Thanks for posting.

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How interesting was that from Dan Patrick! And there is a chemo treatment for it. I presume this is new stuff or has it been proven to cure PMR over a number of years?

Dan mentioned feeling suicidal - virtually everyone at my support group who is on Prednisolone, said they had such feelings. Is this widespread?

Shouldn’t we be getting psychiatric support for this? Has anyone (who hasn’t actually attempted suicide) been offered such help?

I would greatly appreciate your input on this.

Mary

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Hi Mary

I think it would be a good idea to raise your point about feeling suicidal at some point in a separate post because this reply is now well down in this thread & unlikely to get many replies (l’m following it, that’s why l saw your reply)

Please repost & then the topic can be explored further.

Kind Regards

MrsN

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Thank you - will do. Mary

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Hi mary....there is a discussion in tbe first part if this thread. It looks like its actemra that he has been treated with. Not generally used for PMR. Its not chemo in the sense it reads. Its a drug nit being used for original purpose. Like a dmard can be used for steroid sparing and to suppress immune system in say transplant rejection therapy in some cases. Its not been a proven or accessible treatment so far but we can hope.

Yes. Depression, mood swings, psychosis etc can be an unwanted effect of pred. But i suspect that anyone adapting to a chronic illness also has issues si not all mood swings will be because of pred.

verywellhealth.com/could-pr...

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Thank you very much for clarifying that point, so well.

I really appreciate your time & advice.

Mary

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I do also have to say that mood swings and depression were very much part of my PMR for 5 years. And there was NO pred involved at all,

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To be honest - after over 10 years and involvement in 3 different forums I have NEVER heard people complain of feeling suicidal on pred UNLESS they had a previous mental health condition and then they were aware of potential problems.

I suppose it depends where you live - but you would wait a while for help in the UK.

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I take your point - thank you.

Mary

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Despite the above article i linked to above, i agree previously mental health issues may be significant indicators of such responses to pred.

Chronic illness and depression can go hand in hand. Sometimes an uncertain future, pain fatigue etc will underpin depression rather than the pred itself. Illnesses that dont use pred as a treatment can lead to depression.

webmd.com/depression/guide/...

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I believe the over-riding factor concerning depression and this disease is the fact that it virtually comes out of nowhere and instantly upends and changes every aspect of our lives. On top of that, based on all I've been reading here, many of us were pretty healthy up until that point and then, overnight, we are not....and become reliant on a drug. How could anyone not become at least somewhat depressed.

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When was Mr. Patrick's testimony posted? Is there an update on his progress.

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Just in the last few days, maybe Thursday/Friday.

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Thank you.

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Sorry can’t find this. Do you have a link to it. Just goes to Wiki.

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