Hi I am a 43 year old male. My problems started 7 years ago with a sudden onset of breathing difficulties which I thought was asthma. I was commenced on prednisolone which I had never had before and needed 100 mg daily for 6 weeks to try and get this thing under control - and yes at 1 point it nearly sent me mad!! After about 3-4 months I ended up at Respiratory specialist who then thought I might have aspergillosis and commenced me on low dose steroids of 5mg for about 1 year. Fast forward 1 year and I kept getting chest infections and worsening asthma. Nothing seemed to work only high dose steroids.I was taking truck loads of Ventolin and was on Spiriva and Breo elipta inhalers as well. I am a Nurse Educator and at first I was probably a bit naughty and didn’t take my preventors as I should, & I was just sick all the time.I then had an asthma attack where I thought I was going to die. Enough was enough I did an asthma educators course to try and learn more about my asthma and took my meds religiously. Time went by, I was on and off the steroids then I came out in a petichiael rash all over and had a high white cell count for which the doctors could find no source of infection. I had put on about 30 kg of weight from the steroids and found it hard to exercise because I couldnt breathe.I had never been this weight 115 kg my whole life. I am 6 feet 1 so the weight was spread over my body nonetheless I was uncomfortable and stuck in that viscious cycle of not being able to exercise reguarly and being on the steroids. This seemed to continue on for about 2 years then something new happened. I developed terrible rashs on the palms of my hands and feet that were painful and itchy and nearly drove me insane.I had a history of severe ezema as a child which I had mostly grown out of except for some painful eyelid& scalp rashes that I still would get. After 2 months of trying high dose steroid creams wearing gloves all night to help soak it in and of course ending up on the steroids again I went to a Dermatologist. He said I had atopic disease and that my lungs was part of it and said what did he want me to do?. I thought well I just forked out $400 to see you so I guess Im paying you to tell me. He then said he could put me on methotrexate but if it was him he would never go near that stuff as it was worse than the disease.Away I went where I continued to get these horiffic rashes and working as a nurse where you have to wash your hands 500 times a day only seemed to make things worse. During this time I also ended up having 2 knee cartlige tears.These happened without an accident or apparent injury, one happened just getting out of the car. Both required surgery. I also went through a year of what I thought was plantar fasicitis to both feet.
Now something strange happened my rash was still raging but my lungs began to improve and I started to lose weight. I was happy to lose weight but then Istarted getting severe shoulder pain. I went on a surfing trip to the Maldives and on day 2 of the trip developed 10 out of 10 pain in my ribs and came out in a bright hot painful red rash that covered my nose and cheeks The rib pain was so severe I found it hard to breathe.I hadn’t injured myself so I thought how is this happening and what the hell am I going to do? I was on a boat about 4 hours off Sri Lanka and at least 2 days motoring back to Male so I decided to take 40mg of steroids twice a day and tough it out. I spent the next 2 days in bed taking steroids, panadol and ibuprofen. I still had 8 days left on the trip with 11 other guys from my home town so in my mind there was no way out. I just kept taking the steroids and got through the trip. I had an Xray of my ribs which showed I had an avulsion fracture which is where the cartilage had torn a bit of bone now by this stage had lost about 30 kg of weight in a little over 2 months even though I had not been on a diet. I also started developing severe joint pain in my fingers and found it hard to open jars and use the mouse on the computer.
I was back at work and orientating a new staff member who noticed my hands and made a comment like, Have you ever seen a Rheumatologist I said no why? Any way she said I think you should, so I did. I went along and he asked me the questions like have you ever had any back or achilles pain and do you get stiff in the morning? I told him I get stiff in the mornings and night and I had back pain since abot 24 but put it down to being the male nurse lifting machine. I also told him how when I was 12 I had both achilles tendons immobilized with casts because the pain and stiffness in the morning was so bad that the paediatrician I had seen thought that the achilles were about to snap.
He was also curious to know that I had Pericarditis which hospitalized me for 6 weeks at 17 and meningococcal meningitis at 22.
He sent me off for a tonne of xrays and blood tests and he told me to take ibuprofen for pain and I was to follow him up in 2 months.
During this time my rash continued and I developed severe Raynaud’s of my hands, feet nose,and ears. I went back to him and he said had I ever had Psoriasis I said not that I know of but my mum has Psoriasis as does 2 of her siblings. He said the xrays had shown I had erosions to the 4th toes of my left and right feet. He said I had Psoriatic arthritis and gave me a pamphlet and told me he was going to start me on methotrexate. I freaked out!!! I had never heard of this disease. I told the nurse who had recommended me go to see the Dr and she said thats what Ive got.
I was so sick & in a lot of pain and I had a lot of fatigue
Anyway I thought this is bullshit so I I wanted to get a second opinion. All of my colleagues kept asking me what’s going on you look so sick and your so thin. One of them thought I might have CREST as she used to work in an Immunology unit. Again I said what the hell is that!! Anyway she got me into see a Professor of Immunology who after examining me for nearly 2 and half hours told me that I also had peripheral neuropathy. He then sat me and my wife down and told me he was almost certain that I had this thing called Cryoglobulinemia. He sent me for tests for cryoglobulinemia and told me to come back in 2 weeks. My wife and I did some research about this disease which scared us both and made us more confused. When we came back to see him he was cranky and said he was wrong, he said my tests came back negative and he was sorry but clearly there was something wrong with me but he didn’t know what. Me and my wife were so confused. I saw the Rheumy and he said something I would later belive to be very profound “” Don’t worry about your diagnosis you are not accepting it and making it worse, and besides it doesn’t matter what else you have all the horses drink from the same trough" He obviously meant that the medications for these autoimmune diseases are mostly the same DMARDS Steroids and biologicals.
I kept getting more pain and fatigue and the methotrexate hadn’t kicked in and I was in my first big flare. I started the Prednisone which helped my flare but it lasted 6 weeks.
I could barely walk and was super stiff and couldn’t work. The Rheumy now started me on Sulfasallazine. I finally got out of the flare and the methotrexate was kicking in a bit but I was getting terrible headaches and nausea so I switched to subcut injections of methotrexate 30mg. I was still unwell and now had made the decision to scale back my work to 3 days a week permanently. This really upset me. I couldn’t do much around home and struggled to play with my son.
I had worked full time all my life but my health was getting the better of me. I was now getting weakness in my hands, legs and some trouble swallowing as well.
I had seen a new dermatologist on the reccomendation of my Rheumatologist for my rashes(face neck and eyelids) who also thought I might have Dermatomyositis but he wanted to do a biopsy on the rash when it came back. He said you are a very sick man and that it was like youve got cancer but you are not going to die!!
Anyway at this point I had had enough I wasn’t getting much better.
The Rheumatologist had told me about these biologicals but said I had to wait until the Sulfasallazine had kicked in. It had now been 11 months since the start of the methotrexate and Sulfasallazine and I was on 15mg of prednisolone as well. I pinned my hopes on the biologicals and after 14 months the Rheumy said I qualified for them. Over this time I had begun to get worse tremors, and some strange motor movements ,trouble with my balance and was urinating a lot. When I went for review with my Rheumy to start my Biological medications he witnessed these movements and said he would now not start the biologicals until I was reviewed by a Neurologist.
I was so cranky ahhhhhhhhhhhhh another road block to me getting better
How long would it take to see the Nuero? Anyway my wife had talked sense into me and luckily it only took 6 weeks to see him. Meanwhile my movement’s, tremors and other symptoms continued. I saw the Nuero and of course he ordered more tests etc and said I couldn’t start the biologics until my test results came in.and he wanted ro see me in 3 months.
Noooooooòooooo!! I was watching my life go down the toilet, I was so frustrated as I truly believed the biologicals would cure me. After 19 months I finally got the phonecall to start the biologicals. I have now been on them 7 weeks however two days ago I saw my Nurologist who has now just Diagnosed me with early onset idiopathic Parkinson’s Disease. He said he had spoken to my Rheumy about his concerns before I started the biologics but he wanted to review me again before giving me this diagnosis
This news has flawed me, he said it is mild at the moment and I have started some new medications.
He said that there is nothing much in the text books but I am his 3rd patient with autoimmune disease and now Parkinson’s. I have just written this and can’t even believe the story I am telling you all about.
If anyone has read my story and I don’t expect anyone to because it is too long!! But does anyone else have Parkinson’s as well as Psoriatic arthritis ?
Welcome here, silversurfer. I read your story and it is unreal what you have been through for so many years! My heart goes out to you!
I don’t have Parkinson’s, but I don’t doubt some PsA sufferers here probably do have it.
Have your symptoms improved since starting the biologic?
Hoping for the best for you–you are definitely not a quitter and thankfully you found this site, because the moderators and many others have valuable information that can help you! I just wonder how things would have turned out had you been diagnosed with PsA 7 years ago when your breathing problems started? I guess hindsight is always 20/20, and breathing problems don’t usually point to PsA, so it’s not surprising that wasn’t the diagnosis. BUT, I’m sure your rheumy connected the dots all the way back to your Achilles tendon problems at the age of 12!
Hi Silversurfer.
Sometimes less is more and more is less. But your long post was exactly the length it had to be in the circumstances. I am so sorry you’ve had such a traumatic and painful path so far.
Frankly I’m not sure what to say. Intuitively (which sometimes works out for me) I feel as if there are quite a few positives here but I can also totally understand that you have been floored by the diagnosis of Parkinson’s. But is Parkinson’s necessarily such a disastrous diagnosis these days? I know so little about it but I hope that the early dx and current meds for the disease amount to real cause for optimism. Certainly starting biologics for your PsA bodes well.
You have really told it like it is here. I hope the biologic makes a big difference. Which one are you on?
Thanks for the kind response when I had finished my 5 min post which turned out to take 2 hours I thought oh my god is this story real but strangely I felt better it was almost cathartic
Then I began to regret I had posted it. I have never posted anything ever let alone something so personal. All I can say again is thanks I have found that acceptance is the key.It took me nearly 1 year to accept my PsA fighting it all the way avoiding it wherever possible. Living the moment is a daily mantra smelling the roses.
Oh my gosh Silversurfer. What a horror for you. Love you are and want to smell the roses. You could teach and many others how to. Yes just living in the moment is sometimes all any of us can do. Hugs x
Sybil thanks for your support I had the choice between Cosentyx which my Rheumatologist told me was new or enbrel
I chose enbrel based on the fact that enbrel had been around along time therfore in my mind I thought that would be safer as it had been studied a lot. Does anyone know how long it takes to work? Unfortunately my bloods have got worse so my Rheumy has halved my Methotrexate which I have noticed in terms of pain
I probably feel a little bit better but still am hoping that the enbrel makes mor of a difference
Thank you so much that means a lot to me you are so kind
Everyones journey to this stinking thing seems to be so unique!
What strikes me is the courage that everyone has just to get a diagnosis, the knock backs by some Drs etc it really can be a lonley battle of attrition
I am a Nurse Educator with 20 years experience I have worked in the UK at very senior levels and I had never heard of these conditions, most of my colleagues didn’t know what PsA was- maybe I didnt want to know…
This at times silent disease needs more research and publicity it costs society so much
I think I’d have chosen Enbrel too, for the same reasons. I’d say Humira took a couple of months to make a real difference to me. And also that I continued to notice increasing improvement over subsequent months. Is it your ESR or CRP that has worsened? Or perhaps liver markers, given that your Mtx has been halved …?
My liver markers have got worse I am one of those strange ones who’s CRP ESR doesn’t change much
It’s funny, silversurfer, how the general public is relatively unaware of PsA. I think most people seem to know what psoriasis is, but they don’t know of the inflammatory arthritis that can go along with it. However, I think many people have heard of Rheumatoid arthritis. I guess we’re just not that popular! 
I had read about PsA while I had psoriasis, but never gave it a worry because it was supposedly so rare. It doesn’t seem rare once you get diagnosed with it!
About Enbrel–I’m glad to hear you’re on it. I’m partial to Enbrel because it’s my first biologic and it’s made a big difference in my health for three years now. Hopefully it’ll work well for you, and I hope you start noticing less pain, stiffness, fatigue and weakness every day. It can work quickly, as it did for me,but usually the improvement of symptoms is a gradual thing.
Good luck!