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

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.

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