My crazy year

My crazy year

Hello Everyone! Well it has been a crazy time for me. This past year has been insane to say the least so let me start from the beginning. About 2 years ago (2014) I took a spill in a parking lot over my dog. I didn't think much of it. I was almost 36 and had been sore but figured I wasn't a spring chicken so it would take some time to not hurt anymore from the fall. Fast forward a year right before my 37th birthday. I was still hurting but it was getting much worse so I finally scheduled an appointment with an orthopedic thinking maybe I tore something or got a small fracture from the fall I took. So, X-rays done and I'm waiting for results. Doc walks in and says oh, this isn't good. Not something anyone wants to hear. He said you have end-stage osteoarthritis in both your knees. Your knees look like that of a 90+ year old. Yikes! So, I tried cortisone shots twice in each knee. It lasted one day each time with no relief. A couple months later I tried the gel injection and passed out with it. No relief. He said something else is going on that it shouldn't be this bad. He did a lot of blood tests on me and called me to tell me that I had a very high sed rate and I tested positive for RA. I was sent to see a rheumatologist. Between my docs and I it was decided to have surgery so I could start RA meds afterwards to prevent further damage. So just over 6 months after starting with my ortho I was scheduled for surgery. In April this year (2016) I had my right knee was totally replaced and a few weeks later my left knee was totally replaced. I started physical therapy but hurt everywhere. Mornings were getting worse. I felt like I was on fire on the inside some days. My joints were so warm my husband said I was his personal heater. I felt as if it snowed I could lay down in the driveway and it would melt. Worst part is I live in FL so it is hot and it made it that much more uncomfortable with the humidity. So moving forward a month after my last surgery I started methotrexate and plaquenil along with multi vitamin, supplements, folic acid, and a few other things. Each time I saw my rheumy my methotrexate had to be increased. I'm up to 8 pills a week now. A couple months ago I started also taking Humira. I'm still sore in the mornings and my fingers ache and still have heat but not as bad. Each day seems to be getting a little better. This has all happened over the past year. Like I said crazy year. My hair was down to my waist but started falling out and breaking a lot so I just had it cut to shoulder length. I'm hoping that being as aggressive as my docs have been for me will help me in the long run. I'm scared of this disease and what it has already done to me and what it will do to me.

12 Replies

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  • This is a crazy disease, but welcome to our site, you will find people ready to support you, many different stories of how they were first diagnosed and how scared they were. It seems you are on the right track with your treatment, I takes time to work and to adjust. Take some time to look through some of the back posts on here, if you haven't already. Many people also look into changing their diets and excercise alongside their meds. I am also on Humria and found this a great help. Take good care of yourself. X

  • Thanks Gigi!

  • Hello there.

    I am sorry that you are in such a hard place. You haven't mentioned Folic Acid. Have you been given it? It may be able to help.

    Sending hugs.

    Jacqui

  • Yes. That was one of my meds my rheumy put me on 1mg a day along with 40mg of Omeprazole to keep my stomach from being upset.

  • I take 5mg of folic acid 6 days a week, not on methotrexate day. It helps with any side effects of mtx. Have only been on mtx since September was previously on Azathioprine for 31 years. I have been on folic acid for many years due to a deficiency, also b12 and Vit D. You mention supplements so it looks like your rheumatologist is on the ball. All the best. X

  • Hiya & Welcome. Well, it's certainly been a busy year for you & contrary to you saying you weren't a spring chicken I think you were in comparison to most who are diagnosed with such severe OA & in need of two total knee replacements! OA is often wrongly considered an old persons' disease because it differs from RD in that it's wear & tear on the joints rather than autoimmune which destroys joints if not medicated. There are a few here though who also had OA diagnosed earlier in life though I'm not one, I was 48, diagnosed at the same time as RD. That's 8 years ago now & I do pretty well & avoided any joint replacements though i do have painful & creaky knees!

    I do hope you find being here helpful. We're lucky to enjoy having members from all over the world join us here & I'm sure some of our US members will be along at some time to welcome you too. Hope to see more of you now you've introduced yourself! Take care.

  • Thank you for your kind words and support. 😊

  • Yes welcome to the site , you've had a hard couple off years so hopefully things will start to get a bit better now , I've struggled for the last couple off years as well I've got RA,OA and ingina the dmards were doing nothing for me so I started Benepali a Bisomar along with mtx and have been feeling better , but I'm starting to get a bit off pain again and terrible fatigue so I hope the new drugs not wearing off already xxx

  • Thank you. I hope it isn't wearing off for you either. The fatigue has been so terrible that I had a sleep study done and even though I came back with minor apnea the doctor went ahead and got me an auto cpap machine. It has helped with giving me a little more energy but sometimes I feel I am in a catch 22 as even though I am exhausted the medicines are giving me insomnia too. I wish you the best

  • Welcome to the forum and i wish you well. My own onset was literally like a switch being thrown and i often reflect now on how my life changed almost in front of me and changes that anyone in a normal situation would consider carefully as massive life alterations and tread cautiously but they just happened because there was no choice. Im aware you are across the pond from me and i am also aware that the funding for your treatment can be very difficult depending on your health care arrangements, that is at least one thing that in the UK we didnt have to consider, well at least until recently but now funding is tighter although i havnt heard of anyone here being refused on finance grounds, but i fear it may happen. Im so pleased for you that you have a husband to help you through this, it must also be hard for him watching all that has gone on and seeing your pain. I would still rather have this myself than see anyone i loved go through what we do.

  • Thank you Leon. I agree that navigating the medical benefits has been horrendous here. I am on the phone constantly with my insurance as certain things they approve but other simple things they deny until I explain. Odd thing is Humaria is one of the most expensive meds I take and they approved it very quickly without any issues. Of course seeing my surgeries and blood work results probably helped there a lot. Lol. Best wishes to you as well.

  • Welcome to this site yes it is scary this disease when I was first diagnosed in 2014 it took me a long time to accept it I was so angry and still am that I cannot do what I used to have had to accept it but do not like it. hope your GP and Rheumy are good all the best

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