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Newbie and my story...it's a long one for such a short amount of time!

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operasinger
operasinger

I discovered this forum trying to look for answers to what I am currently dealing with. Seems like all of you are "accross the pond" as I am in the states. You all are so damn supportive and insightful so I joined! I hope it's ok?

My story

This issue came out of nowhere and it hit me like a truck. I have always been active (gym 5-6x a week), been on the Paleo diet for 4 yrs. Lost over 100lbs with it and I am very disciplined about what I eat.

In June 2015, I injured my left knee due to over doing it at a spinning class. Figured to take is easy for the week, but then the knee ballooned while visting family. Went to Urgent Care and the doc thought it was just osteoarthritis but they removed fluid and injected a steroid, plus gave me a pred cycle. Next day not too shabby but then the knee balloned again and with a vengeance, called urgent care and they discovered I had gout. So went back in and they let out more fluid, told me to stay on the steroid and added cochicine.

Returned to my home base, NYC, and nothing was working and the knee just kept getting worse.  Decided to go to an Urgent Care in NYC and told them about the gout and that they found uric crystals. They prescribed more colchicine, endomedicin and more prednisone and told me to return in two days if things did not improve. They did not so they referred me to a Rheumatologist.

Rheumy #1- He looked at the tests, saw that it was positive for gout, but confused why it had not cleared up by now (week 3) with the Pred, Colchicine and endomedicin(which was killing my insides btw). Took liquid out of knee to check for infection (3 40mg tubes) and told me to stay on everything.  Thoughts all was going well...felt fine...but then....right knee got swollen. Called the Rheumy, want back in and decided...this is toooooo weird and but took liquid out and put steroid.  Started to suspect that this was not really gout...something else is causing it...so decided to put me on an intensive Pred taper (started with 40mg for a week and taper down by reducing 10mg per week)...Stay on colchicine and endomedacin (started getting bloody GI though so worried)...Week 4...as my name states, I am an opera singer and travel for gigs here and there and I had a performance in Italy to begin at the top of Jule...but...right knee swelling went down but then left knee swelled up...again. Decided to check myself in to emergency...where I got checked for Lyme Disease, Gout and a blood panel...they all came back negative. They contacted my Rheumy and he finally said...this is not GOUT eventhough you have uric acid crystals so something else is causing this...They tried to talk me about going to Italy but it was too late...Told me to stay on 30mg of Pred, colchicine and eventhough I told him about the endomedacin he said to use if it works.

side note: I was moving away to a new city and state for a teaching opportunity so this was really the last interaction with this Rheumy but he said he would send all the tests wherever I went. I stayed in touch with him while in in Italy...speaking of which

July 2015

With cruches in hand I traveled to Italy for a singing festival for two weeks.  This was by far the worst I had felt....now BOTH knees were swollen and oddly my ankles started to hurt. It felt like a sprained them.  Mornings I could not move and inch and pain as pain can be. It was horrific...The prednisone was not really working at 30mg but kept doing it. Luckily, they were concerts and not operas so I could slowly walk (in pain) and the festival knew I had some "knee issues."  The end of week one I went to an Italian doc, brought all my paper work, looked at my swollen, liquid filled knees and said (in Italian) "This is not gout" told me to stop taking the prednisone and changed me to methopredsone, codeine and some non FDA approved version of celebrex. Started on that, it made me more movable. Decided no on the codeine (didn't really do anything for me)The knees were still swollen as hell so Week 2 we went to the emergency room. They took x-rays and bone wise everything looked ok. Saw and orthopedics and he drained both knees (nice yellowish liquid) and injected me with a corticosteroid on both knees.  The ankle issues started to get more pronounce and also I started getting some weird purple swollen toe (my pinky on my left) and 2nd big toe on my right. Somehow finished the festival and they seemed happy...so back to the states I go! Week 3 I am in Kansas for a musical festival.  I flew in to the airport and went str8 to Urgent Care so I could get a referral to see a Rheumy. Told the emergency guy my issues, brought all the paperwork from NYC, and Italy.  Decided to take blood to check for PCP, RAFactor, prescribed a medropred cycle and celebrex and colchicine. I called at least 15 Rheumy docs and they were all at least 2 months out...this would not do, but I found one that would see see me at the beginning of August.  In the meantime, I finished the medropred cycle and the next day was the most painful day of my life. I was staying a Pedriatic doc and she suggested to go back on it pronto...Just had to hang on for this appointment...so far I had also lost 15 lbs...and legs started to entrophy

August 2015

Rheumy #2- Brought all my stuff from NYC, Italy and KS Urgent Care.  Told her what the deal was, and she decided to drain both of my knees. Weird stuff...left knee=straw color liquid, right knee=clear with red spots liquid. Interesting thing about the ankles, one day it would be my left and the next it would be my right and my two purple toes were turning more purple.  She decided 40mg of Pred, colchicine and 400mg of celebrex and took a whole slew of blood tests. In this case I was performing in an opera. Timed it all well enough that i pulled it through but i had to time my steroid taking so I could be able to move for the shows which were in the evening. Returned to Rheumy #2 on Week 3...she said that I was 10.5/11 on the uric acid level and that was with 40mg of Pred going through my veins.  She decided that I need to add Allopurinol to reduce uric acid.

Side note: I was having gout flares non stop even with the Pred and colchicine this entire time.

Started to some homework for Rheumy #3 and found one at my new place of residence...Currently lost 20lbs and ankles started hurting even more...big purple circle on my right ankle.

Rheumy #3- Brought all my paper work from NYC, Italy, Rheumy #1, Rheumy #2.  Looked at everything and started the first round of blood work...he saw gout but every blood test showed neg on Uric Acid. Was getting gout flares like crazy...Rheumy told me to stop Allopurinol. He aslo requested an abdominal CT scan which showed nothing. So the big deal was that I am anemic for sure and I have inflammation for sure.  Told me to cut down to 20mg of pred and also requested an RA Factor.  Sadly, I had to travel back to NYC for 3 weeks for a gig.  SO still on 20mg of Pred. Cochicine and 400mg of celebrex...same thing for the last 2 months.

September 2015

In misery but functional still making it work BUT new things started to happen...my neck and shoulders started to get really stiff, on top of knees and ankles...pinky toe looking to it got inflated like a balloon. Got a hold of Rheumy and told me to up the Pred to 30mg for the three weeks. In NYC you have to walk everywhere and oddly enough it felt good to walk. I walked more the three weeks there than I had in the months of June through August. I also started doing some stretching exercises before going to bed and also once the pred in the morning (I take 20mg in the morning/celebrex and 10mg/celebrex in the evening so I can sleep) kicks in. Warm showers in the morning really seem to help. The inflammation would just travel around throughout all this time...One day it would be left knee, right ankle, left back neck and the other would be something different. Stoping the Allopurinol relaxed the gout...A LOT. The weird thing that started happeing was that everytime I would finish eating, my knees would sweat like crazy and also, at night when I went to bed, my knees would sweat ...a lot.

Side note: this entrie time I have eaten Paleo, but decided for probiotic reasons I would add greek yogurt. I am so scared of eating anything so basically my diet is chicken and veggies and fruit. Still losing weight...like a lot...before this happened, I was at a healthy, athletic 160lbs...and now I am at 145

My doc called and said the my RA Factor came back negative. So thus far, everything has been negative and the only positive is that I have gout.

GIg in NYC is up and faked my way through it...Told people I twisted my ankle.

Week 4 of September...went from airport to doc. He finally admitted that he "was stumped" and was running out of ideas.  I told him that my lower back also started hurting along with everything else and I started to feel discomfor on my achilles tendon. He then started asking if I had had psoriasis in the past. I told him I dont recall but I have had dryness on my scalp. He asked when was the last time I was checked for HIV and I told him it has been a spell. SO he asked for me to get xrays done on my lumbar spine and an HIV test.

New symptoms: Lower back, neck even more stiff, and some weird dryness at the roof of my mouth, NOW I am fatigued like all hell. The knees dont hurt as much. My left groin area hurts.

Also, I KNOW WEIGH 138lbs...WTF!

October 2015...so far

I am seeing him tomorrow to discuss latest tests. He thinks it might be PsA. I spoke to my sis and asked about mom. She said my mom has arthritis but does not tell anyone and does not believe that things can be hereditary. My mom has had a knee replacement and should have the other one replaced but refuses so she gets cortico every other month. Her knees ant feet are both swollen and it comes and goes. She is a diabetic.

I asked about psoriasis and no one is aware. I am assuming I should tell the doc tomorrow.

I've been reading up on Enbrel and I am going to bring it up. I am afraid of methotrexate's side effects and how it would affect my performing and teaching career.

Been readingup on supplements. Going to go buy B-12, Vit D, Fish OIl, Iron and Folic Acid. Joining a gym and looking for a physical therapist. I am also seeing a nutrionist to deal with this weight loss.

MY FEARS!

I am scared that Rheumy #3 will say..."I am stumped" and we need more tests. I'm afraid of looking for a new rheumy and starting all over again.

I just want to try SOMETHING! ANYTHING! I have been on the same things this entire time!

--I have been anti social...live in a new city where I dont know anyone. I go to work and come home, tired as hell

--I am afraid of eating anything that is not chicken, veggies, fruit due to the fear of geting gout or inflammation

-- Starting Weight 160- Current 137...with prednisone throught out all this time.

--All the hard work in building my body is now all gone.

So this is my journey. WOW felt good to let it all out. Any comments would be so appreciated and THANK YOU so much for reading this.

0 likes, 17 replies

17 Replies

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  • manda1030
    manda1030 operasinger

    Posted

    Opera singer, wow does my heart go out to you. My body kinda started going down hill same way aches and pains. Morton's neroma in both feet , then started not being able to lift my arms above my head, hands started going numb and swell. Then I was 150 lost down to 95 pounds. Started throwing up constantly. My whole body hurt. Took forever 6 Yeats but they found out I have CP, RA, Fibromyalgia, epophogel erosion, and Chronic gastritis. My point to all this is maybe see an endrocrinoligist. And an Internal medicine Dr as they know and specialize in many diseases. I also live in the states and love this site so many kind people. I hope you find your answers and you return to good health. PS Have they checked you for Lupus? Best of luck to you!
  • shooter01
    shooter01 operasinger

    Posted

    Operasinger it can be hell when you don't know what will be the next part of your body to go wrong but please stick it out it can seem like forever before you get a diagnosis but the relief when your given one is immense as for meds you have to weigh up the pro,s and con,s for you and no one else don't get to disartened if you get a false negative from your bloods they are not the be all and end all the doctors will eventually have to believe there own eyes and you of course take and good luck steve.b
    • manda1030
      manda1030 shooter01

      Posted

      I just wanted to say I agree with you 100% and think that is great advice.
  • operasinger
    operasinger

    Posted

    My frustration comes in NOT knowiing what it is. Getting all the negatives of what I don't have is good but I would like to know what it IS. At this point like to know what I have so I can tackle it. Manda1030 and Shooter THANK YOU for responding. I am trying to stay positive and if looking into other opinions is what it takes then I need to do it. I have my appointment today with my Rheumy doc and scared of what he is going to say. My fear is that he is going to say, "I don't know." The weight issue is a big one for me and also since I don't recall ever having psoriasis but have signs of PsA. But, I still don't have any answers which is frustrating me greatly.
    • manda1030
      manda1030 operasinger

      Posted

      I hope you find your answers soon and your Dr. Takes the time to really listen to you and figure it out! Best of luck to you keep trying! There is always hope. Hugs and well being for you I hope!
  • lol8
    lol8 operasinger

    Posted

    Hi opera singer, why are you scared of Mthx side effects? I take weekly injections of 20mg and still haven't realy had any side effedcts except for the odd sore throat and niggly things like that but after awhile they disappeared. I'm also on another biologic monthly injection, the combination of the 2 are keeping me riding my horses and looking after my animals. Any side effects are easily out weighed if the swelling goes and the pain is reduced. Please dont be put off by these biologic medicenes if they give you back some quaility of life.. I have PsA and oesteo. so understand all about pain etc. Also i'm only 59yrs and i do believe it's passed on as my mum has it and my daughter is starting to suffer!! Good luck
    • operasinger
      operasinger lol8

      Posted

      thanks for your response! it's so good to have a place where i can let all of this out. i dont share any of this to friends or family. most people dont even know I am going through this.
  • operasinger
    operasinger

    Posted

    UPDATE:

    So I had my appointment with Rheumy #3- Prognosis?

    Here is the deal: I have PsA but no Ps...but I have dactylis on my toes, along with swelling on my knees, ankles close to my Achilles tendon, and some weird dryness on the roof of my mouth.

    I also have Axial Spondyloarthritis...I have some straightening in my lowerback but nothing shows in the x-rays but I have stiffness and pain on the back of my neck, shoulders and now a clicking sound in my jaw.

    He said that the other inflammation could be Peripheral Spondy and not PsA.

    ok...

    so we said we are FINALLY going to try something. He said Metho would not really do anything and studies have come out that it does not help with PsA or AxS.

    I brought up Enbrel,but he wanted to try Otezla. I did some research beforehand and told him that I have been reading reviews and side effects which includes depression and massive weight loss, which is something I did not want. Plus, a lot of people stated they did not feel it was helping with the arthritis part but it does halp with the Ps part. He kept insisting and at this point i am just happy that we are trying something. So I agreed and he gave me a starter pack....He advised me that if I start getting real depressed or suicidal to call him ASAP...then

    As I was about to leave he stopped me and said..."Ya know? if we take the Ps out of the A and look at the arthritis and the AxS then Enbrel may be a better option."

    ok

    SO now  we are progressing to get my insurance to approve it...without it, it would be $5000 a month....uhhhhh NOPE! I am about to get more base line blood work done to send to the insurance company.

    Regardless, I am worried about the side effects. Will I ever be able to perform on stage again? Will I ever NOT be in pain and fatigued? I am scared about getting off the Prednisone because it is the only thing that is giving me the facade that I am "sorta" normal and productive.

    I know things are getting worse body wise...I think the worst part aside from the pain is the fatigue...WOOF! it is killing me.

    So what do you all think?

    • lol8
      lol8 operasinger

      Posted

      It's strange how some drugs work for somethings and not others, this side of the pond Uk, mthx is given for PsA and it seems to do the trick i know one lady who has been on it for 13yrs and wont come off it for fear of being that little old lady in pain!!

      You must come off the Prednisole as it only masks it and doesn't deal with it, it wont be easy as you are on a high dose but do it over a period of months rather than weeks like i did, i haven't had it for 6 months now and wont go back on it.

      I dont have the P in PsA only the Arthritis, thats enough for me. The fatigued will get bettter but it will take time, you must rest your joints when you have a chance, there is no reason why you can't continue with your singing, you will just have to be aware that you will tire more easily after a concert etc.... hope all this helps.

    • operasinger
      operasinger lol8

      Posted

      I agree about the Prednisone. I am so tired of taking it! It makes me feel jittery at first and when it wears off I am fatigued as all hell! I take 20mg with 200mg of Celebrex, .6 Cochicine and then 10mg and another 200mg of Celebrex, .6 of Colchicine along with a probiotic so I can sleep in the evening. I have been doing this for the past 3 months.

      Well, had my blood work done to check for Hepatitis B, C and also TB to send to the insurance company (crossing my fingers).

      I have also added some supplements to increase my iron, B-12, apple cider vinegar, ginger tea in the evening and more vitamins. I bought some Turmeric which I heard helps with inflammation. People are saying that I look rather gaunt because of the weight loss. I am also going to acupuncture twice a week. I did check with the Rheumy if this was ok and he said fine.

      I think my next step is to look for GI doc to check my inner pipes. But I am wondering if I should wait for the insurance company to give the go ahead for the Enbrel (which I am scared about because if the immunity side effects)

    • manda1030
      manda1030 operasinger

      Posted

      So glad you are getting something started! I hope the medication works can't hurt to try you can always stop taking it. He sounds like he genuinely cares about you and listened! I wish you the best let us know how it goes!
    • shooter01
      shooter01 operasinger

      Posted

      Hard as it is you will be on stage and performing again we all believe in you it may be hell at times but you have fought to be were you are please don't give in IT WONT BEAT YOU god bless steve.b .
    • operasinger
      operasinger manda1030

      Posted

      Thanks Manda! I have ben trying to stay positive and keep going and fight through all of this. I admit that I am trying to understand what happened since it came out of nowhere. I never had any problems beforehand aside from the gout which would go quickly.

      I guess I have to learn how to accept this "new normal," and hope that the Enbrel will work. I am putting a lot of faith in it and hope that I wont be crushed if it does not. My worries about the weight loss is huge but I think a lot of it is loss of muscle and looking like my legs are in atrophy. Trying to walk more and do some stretching excersises in the morning and evening.

      Fingers crossed that my insurance approves but I have to start thinking about a plan B.

    • operasinger
      operasinger shooter01

      Posted

      Wow Shooter you are real cool! THANK YOU. I am hoping that the insurance approves Enbrel and I am actually looking forward to taking the first injection. It's scares me that it wont work, but the sheer idea that I am finally trying something is a good thing. This issue has taken over my entire life these past 5 months. I have been living in this bubble and keeping it underwraps for so long is tiring. My colleagues where I work do know, but I am so tired of talking about it because I feel like I am constantly talking and whining about it. I would like to talk about something else that is going on in my life besides this and would like to finally create a new life in this new city I am living in. I am currently isolated from the world but I know that I need to take of this in order to be out in the world.
    • manda1030
      manda1030 operasinger

      Posted

      Hi sweetie,

      ​I truly hope it helps you and you start to feel better. I understand the fear behind new meds. hopefuly it all works out well and you are back loving what you do and sharing your gifts with the world. For weightloss I always did high protien shakes there are some out there that are pretty good. And lacotose free if that is an issue. I drank them inbetween meals or for snacks and also if I felt to bad to eat. I know it's so frustraiting to watch changes to your body you can't control. We just have to try to focus on the things we are still lucky for and battle on. Best of luck to you. I wish you good health. And happiness. Hugs to you keep us informed how you are doing.

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