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I’m so glad that autoimmune arthritis is becoming more talked about in the media. To be honest, I was getting frustrated with all the focus on cancer and other big ones, and no one was seeing how badly arthritis is hurting a lot of people.
I don’t think it’s clear to the public how serious these diseases are. We do need an “awareness” campaign.
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I am sorry your DIP joint hurt Kelly, I know how that goes. I have psoriatic arthritis. It is no picnic. I am on my third biologic medication. Stories like Phil’s don’t really help folks who struggle with the disease. Really, two shots and he is in remission? Since when is a biologic a cure? It makes it sound like those of us who struggle are whiners, after all famous people have taken two shots and went into remission. I have enough trouble with family understanding already, Phil just made it far worse. It would be nice if disease awareness was part of the story instead of a fairy tale.
Honestly, I don’t know much about golf, but if this guy has sponsors he may need to sound well to maintain his income. Just a guess. And I guess he can pay cash for that Enbrel instead of fighting with an insurance company to pay for it.
I’m going to step away from the computer /end of rant.
Thanks for being here 🙂
Debra, I suspected that this might be the case. I cannot speak for PsA, but stories like this on RA have caused us w/ RA much harm. People die or permanently lose abilities because of delayed treatment, mis-diagnosis, and failure to treat the “secondary” symptoms of RA. People also have trouble getting approved for treatments or disabilty payments or wheelchairs or surgeries or pain medicines or getting other kinds of assistance – all of our lives are worse because of the blatant mis-information that spreads the ignorance about the disease.
You may have a good point about the sponsors.
Great points. I have PsA and I know I was extremely disappointed with the coverage from the media. Like Phil Mickelson, when I first got PsA, Humira put it into remission. Still, I didn’t stop taking the drug just because my symptoms went away. And, lo and behold, a year or so later it stopped working for me. Fast forward four years and I’ve tried a lot of the biologics — Remicade, Orencia, Enbrel and Humira — and have found none of them to be as effective as my first year on Humira. I hope that doesn’t happen to Mickelson, but I think the media, of which I am a member, has a responsibility to include the whole picture.
Good rant Debbie :yes: Maybe the mfg of Enbrel gave him free supplies to “advertise”…I use it and it sure didn’t put me in RA-remssion:(~
Nessie, I wish all in the media thought the way you did. I surely think this could be another set-back in awareness…people I try and explain to what RA is are amazed, they had no idea (and neither did I til diagnosed last October)
Kelly, hope your fingies feel better soon! :panda: I saw him in the smileys and reminded me of the picture Cindy sent on facebook…I’m sure that is how you feel!
my first thought on reading michelsons description of his treatment and future was “he’s new”.
thinking back 10 years to my ra diagnosis if you had told me what lay in store or the biologics,mtx, steroids i’d be taking i wouldn’t have believed it.
i hope with time he can advocate for all of us.
I agree with Shaz, I think that he just doesn’t know enough about it yet, all he knows is that he was diagnosed, in a lot pain, given a drug that has worked for him and because he doesn’t know any better yet thinks that he had been ‘cured’. Sadly for him he has a long journey ahead and will become a lot better informed. I don’t think that he deliberately made it sound as though he had just had a dose of the flu, he’s just talking about his own experience. We shouldn’t judge him too harshly as I’m sure a lot of us play down our illnesses when we think it may affect our jobs it’s just in his case the whole world finds out about it!
I agree with Shaz–he’s new. I’ve only been diagnosed with PSA (and or RA) for 10 months, so I remember how contagious the rheumy’s optimism was. And I did get six glorious weeks of “remission” on MTX. Then I had a flare so bad I barely managed to walk to the bathroom. After a failed experiment with increasing the MTX, I’m 6 weeks into Humira and seem a bit better than before I started it, but it’s no magic bullet. I’m starting to worry that I will be one of the people who blow through all the biologics with little lasting relief.
All this to say, Phil, I hope you’re right, but you’ve just made life harder for those who aren’t as lucky as you hope to be.
Great post Kelly, I’m going to pass this on to a co-worker/friend of my husbands. He plays golf with him also. I know he had a long rode to get diagnosed. I am curious what he thinks of all this and how much of a remission he has experienced with Enbrel.
The DIP joint on my ring finger was the first of three fingers affected by RA. It was red, swollen and very tender for months while it morphed into a different shape, and eventually into a swan neck deformity.
Yeah, I wish I were wrong about the DIP’s – I have several of them that have been screaming for months. I joke around saying, “My my, this imagination of mine is so realistic.” 😛
I too was confused and a bit frustrated with the coverage on Phil. I have a feeling that it is like many have said–he is trying to put on a good face for the media/sponsors. And he probably has no idea what is ahead. I’m on Enbrel myself, and while it works pretty well for me, I would never say I’m “100%”. And it certainly never put me in remission. Two shots and you’re cured? Never heard of such a thing. I’m going to be following this closely, to see how it’s reported and how Phil handles this. I wish him well, and I hope more awareness to these awful autoimmune diseases is achieved. Thanks so much Kelly for bringing this forward.
Yea, even if Phil did exceptionally well, the story could have been about how lucky he was to get treatment so fast & respond so well… There is more to the story than they are reporting either way.
In response to many comments that Phil is in for a surprise: It’s hard to know how much Phil is confused & how much he is putting on a face for his sponsors.
The media handling is another matter. From everything I’ve heard, the coverage is not accurate so far. I was noticing today that it doesn’t seem to bother anyone except for patients who are still sick.
We need a Michael J Fox to take up our cause (although I wouldn’t wish RA on anyone). Someone high profile who is not afraid to show the world that your body can just stop working on you, in your 20s, 30s, 40s.
Despite the media spin, I am glad Enbrel worked and gave Mickelson some relief. We all could use some!
I have had PA for 10 years. The first few years the condition was mild but the last 3 have been a nightmare. MTX didn’t work with me because of liver problems. I’ve been off all meds for 4 weeks. I’m in the UK and they need to see me without any meds to make sure I ‘qualify’ for biologicals which are free here.
I go back to the hospital on the 19th and I believe Enbrel will be offered to me so I’m hoping this will help. I hope for Phil Mickleson sake that he is in remission but I’d be very surprised if he is. A lot of the drugs I’ve taken have worked instantly and then over time it’s as if my disease works it out and gets around it and the drug becomes useless!
I saw Kathleen Turner here in the UK recently talking about her RA and was saddened to see her in such bad shape with it. Yes, we could do with someone like her pushing the cause a bit more..
We have not seen any awareness here. I have never heard Kathleen Turner talk – I will definitely keep an eye out for that here.
🙂 Good luck getting the approval from the health service for the Biologics! I hope you can feel better soon.
I have also make my own crackers as gifts – just thought I’d mention it.
I agree with the previous posts. None of us wish the insidious or overt pain(s) of (RA or) PsA on Phil Mickelson. He has plenty on his plate with his wife’s illness. His performance (particularly the emotion he showed) after winning the Master’s tournament was a morale boost to many on the heels of the Tiger Woods debacle. He’s a great guy with enormous talent. I certainly hope he’s one of the lucky ones for whom Enbrel is like a miracle drug.
That said, the issue of oversimplifying/downplaying the range of disability and constantly shifting challenges of autoimmune arthritis diseases is a real challenge. I have had what the medical establishment would call a good response to Methotrexate. But I know the may ways RA impacts my daily life. While I was erratic in my commitment, I used to be an avid swimmer and runner. I make attempts to recapture that part of my life, but joint pains and fatigue make that difficult to impossible. That’s just one example.
I hope Phil M’s experience with PsA beats the odds. On the other hand, there is an overly simplified view of RA and PsA and this family of diseases that can undermine effective treatment and perception of the day to day challenges. This initial coverage of Mickelson’s PsA does is not an asset to increasing awareness for the majority of us. Over some time, however, I believe his experience will increase awareness in a beneficial manner.
Very well said, Helen. Thank you.
Thanks for such a great post and these wonderful comments.Yes, it makes me grimace when I see the media treating this like it’s no sweat. Oh, and he’s gone vegetarian and his problems are solved. Did you see that part? Makes me out of my mind. Wish it were that easy. I clicked through the links you put in there and I would say the psoriasis people it felt to me were not trying to be cheerleaders, but were trying to slow down the rah-rah chorus. But they probably did not want to offend Phil or the drug companies too much! http://www.psoriasis-cure-now.org/phil-mickelson-arthritis Anyway that’s how I read it. I wish Phil and his wife and mom well.
I agree, Ellen.
My SIL husband has PsA…and has had the skin prob first…she said he is terrible about taking his drugs, takes them for a bit when he hurts and then feels better and quits til he feels bad again…wish that would work for RA..is it different? Due to an infection dr has me off Enbrel til antibiotics are done (still on MTX) and I am feeling it BIG TIME! Really bad in feet! Where is that one or two shots of Enbrel for me?….but I do wish/pray the Milkelson family well and healing….
My husband is on Humira for PsA. I certainly hope Mr. Mickelson is able to stop taking Enbrel, and I’m glad it’s worked so quickly for him. But my husband has been on it for a year, and he still isn’t in remission.
Good luck to your husband, Ashley. ♥ I poked around your blog a bit. Let me know if you need someone to bounce ideas about the “misdiagnosis” / FMS thing. That is happening to lots of patients. There is one FMS post here & the links & comments might be helpful.
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I remember when Mickelson was diagnosed, I thought, He has no idea what lies ahead of him! I felt sorry for him.
I also wondered if it was actually steroids that he was likely given that may have made him feel better so quickly. That was my experience anyway. The immediate relief I felt was likely in large part due to the steroids. Humira also helped but slowly it’s been wearing off. (I take it for PsA).
I echo the sentiments of those who wouldn’t wish either PsA or RA on anyone, but I must admit when I first heard Mickelson’s diagnosis, a part of me certainly thought, he could be a valuable spokesperson. Doesn’t feel that way now at all. He supports the drug, not the disease. And as many have said here, it’s so incredibly common for a bioligic to stop working (yes, that’s very true of PsA), and while I hope for his sake it doesn’t happen, it’s entirely possible, and then what? I also initially thought that Mickelson having arthritis would help my conversations with friends and family trying to make them understand my pain, but if anything it’s done the opposite. They look at Mickelson and think, no big deal.
BTW, I think a celebrity endorser of RA or PsA would be a huge asset. I have seen celebrity endorsers of psoriasis lately (LeeAn Rimes and Jon Lovitz) but not PsA.
I often would like to smack Phil with my cane. Two shots of Enbrel did noting for my PsA. I now get Remicade every 6 weeks.
ACR 20 (20% improvement) is only 60% at best for biologics. Very very few people get ACR 70 and even fewer get remission.
My daughter was diagnosed with psoriatic arthritis at 14. She is 29 and has spinal arthritis, and is currently going to be evaluated for RA. She had severe hyperemisis gravidium during her first pregnancy and as she is about a month into her pregnancy is once again experiencing. PA is a severe disease…and it needs to be taken very seriously.
I simply commenced getting Psoriasis and have attempted a gaggle of products and not anything has helped. I’ve been the use of Dermalmd psoriasis serum for 5 days and I’ve observed a big difference.