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.
Famous American Sports Personality Reveals His Ba... - PMRGCAuk
Famous American Sports Personality Reveals His Battle With PMR!
Written by
JakeSearcher
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81 Replies
•
Dont know if I like the idea of light Chemo
But what a way to inform people
• in reply toRose54
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!
Rose54• in reply to
I did wonder if that's what it was
It was Actemra. If you can watch him talk it is more powerful. Maybe I can post the tv link.
Soraya_PMR• in reply to
He said Actemra.
JakeSearcher• in reply to
It is Actemra that he is being treated with now at HSS.
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.
JakeSearcher• in reply to
He is considered one of the really good guys in his profession. No conceit....unlike many who are on tv.
In the article l read he talks more about joint pain rather than muscle pain. I’ll see what else l can find!
JakeSearcher• in reply to
Yes, I wondered about that, too. But he also talks about feeling like the flu without nausea...which is muscle pain, no?
• in reply toJakeSearcher
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.
JakeSearcher• in reply to
True. And sometimes doesn't it feel like joint pain in the wrists and fingers, etc. For me, it often does.
Amayeee• in reply to
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.
• in reply toJakeSearcher
I would have thought so. And the fatigue that PMR and pred can cause.
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.
• in reply toSoraya_PMR
I didn’t think Actemra was a ‘Chemo Drug’ low dose or otherwise? I wonder if it’s a Combination with Methotrexate for example?
• in reply to
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. 😂😂
• in reply to
Methotrexate is still used but not so very much these days as there are better, more effective drugs.
• in reply to
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?
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...
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.
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.
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!!
• in reply toSoraya_PMR
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.
• in reply to
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!.....
Soraya_PMR• in reply to
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 🤫
• in reply to
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. 😂😂😂
• in reply to
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! 😱
• in reply to
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 😂😂😂😡😋😢
Soraya_PMR• in reply to
Sounds wonderful
So you were on Actemra? What was your experience?
• in reply toJakeSearcher
I’ve been on Methotrexate twice.
PMRproAmbassador
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!!!!
Do you think your revitalisation is +Actemra
or -pred?
Or adrenals back into full production?
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.
• in reply toDianeA1
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.
Ok, sounds good. I'm glad for you.
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."
• in reply toJakeSearcher
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!
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?
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.)
I’ve Tweeted him & asked him if he’s time to keep us updated on his progress!.....
• in reply to
Modern life.....
JakeSearcher• in reply to
Great. I bet we hear from him. Good of you to do that.
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.
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.
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.
• in reply toLochy
Our immune systems are too "boosted" as i understand it. I don't want mine to get any stronger 🤣🤣🤣
Thanks for posting.
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
• in reply toHainault
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
Hainault• in reply to
Thank you - will do. Mary
• in reply toHainault
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.
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.
• in reply toPMRpro
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.
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.
When was Mr. Patrick's testimony posted? Is there an update on his progress.
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.
• in reply toAmayeee
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 🍀
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.
Sorry can’t find this. Do you have a link to it. Just goes to Wiki.
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