Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hello All
I was recently and finally diagnosed with R.A. after several years with increasing symptoms but negative blood work. In the past year I have seen three Rheumatologists, my hand surgeon and been misdiagnosed three times. Most of the MD's were more interested in blood work results, which don't get me wrong I understand, but not everyone presents the same. I finally wound up at the end of the line Rheumatologist, who uses all tools not just one. I am not new to autoimmune diseases as I have been a Type One Diabetic for 40 years, so if you have one you liable to have others.
The internet can be a great place for information but articles and studies only tell you so much and become increasingly redundant.
I started on Methotrexate and Hydroxychloroquine, which I have only been taking for a week. How in the f**k do you deal with the side effects? I have been dizzy, nauseous, vomiting, diarrhea, fatigue (on top of the fatigue I already deal with) and have completely lost my appetite which has been daunting with my T1D.
I decided to start taking the meds at bedtime with the hopes I would simply sleep through them and it has helped to a degree. Now I’m getting anxiety over having to take them. It’s incredibly frustrating. I’ve been dealing with illness the majority of my life, but this has really been a punch in the gut. The last 18 months have been difficult (coronavirus aside). The inconsistent energy levels, the swelling and the DAMN PAIN! This is a pain I was unfamiliar with as I know pain well.
How do you all manage to continue to take care of yourselves and continue to enjoy life?
You get used to Plaquenil and it doesn't bother me anymore. Methotrexate (MTX) is a different story. How much are you on? I take 20mg. I plan to do nothing the next day every week. Pills make you nauseous. Injections are easier to deal with. You can ask for anti-nausea medications. I keep some on hand. I mostly use ginger and it works for me, but not everyone.
Getting settled into a medicine routine is half the battle. MTX never gets better, but I think you will eventually adjust to Plaquenil. It may take 6 months or even a year. You learn to adjust your lifestyle to RA. At least I did. My life got better when I started resting when my body told me to. I hope you are able to find that balance.
Kim gave you some good advise. I have also found MTX via injection less likely to cause nausea.... BUT...
I would also suggest having a discussion with your rehumy about biologics. Many of the newer biologics are oral - no injection or infusion - and they work WITHOUT MTX!!
I am on oral RINVOQ and Plaquinel (hydroxy) and doing VERY WELL after 40+ years of RA. And no side effects that I am aware of.
Thank you both for your responses and advice.
I am tolerating the Medications better now that I have been on them a bit longer and taking them at night has helped quite a bit. Making sure there is nothing on the schedule the day of taking the Methotrexate was good advice, thank you.
Listening to my body also excellent advice just a little harder to do at times. I have a bad habit of pushing it when I feel good out of fear i might not feel good again for a while.
How do you deal with the Fatigue from both the R.A. and Medications? Lately there doesn't seem to be an end to the amount of sleep I need.
Then a friend walked by my house one day. We had girls almost the same age. She was having difficulty walking with a cane. I asked what happened, thinking it was an injury or something. She said she had Psoriatic Arthritis and it had taken years to get a diagnosis until she found this old doctor in Vancouver, who had diagnosed her by symptoms. And he said she had "classic" PsA, couldn't figure out why the other doctors had not diagnosed her. She gave me his name, and I went expecting nothing.
I walked into his office, and he did some tests to see if I had any hand strength etc. Then he said, "You have RA, but I'm going to get some blood tests done!" I told him not to bother, as I was always negative. He then told me I had classic RA, and he knew it from the moment I walked in the door. He just wanted to test my liver before putting me on mthx.
So, 4 years of trying to get a diagnosis. Then, we moved to another province. The new rheumatologist was skeptical of me being ill, because I was sero-negative. Seriously!! So he gave me Plaquenil, and some Prednisone. 6 months later, Plaquenil had done nothing, so he switched me to oral mthx, with Celebrex, which destroyed my stomach and barely helped the flares. Stupid me, I never said a thing. I was quite sick for 3 months, then it cleared up and I have not had it again.
After 5 years, Celebrex was taken off the market for some lies to the FDA. I was just dying. I saw him and told him I couldn't stand the pain anymore without Celebrex. So, he said, let's put you on injectable mthx, and a biologic! Well, my life changed totally. I got it back!
But that was a long time ago! Why are doctors so stupid today? What kind of idiots are training them? 30% of all people with RA are sero-negative. And no, some of us are not mild. My new rheumatologist, in a new place, told me I am the worst case of RA he has ever seen. He has worked very hard to get me close to normal, by doing innovative things.
Hopefully, the fatigue will get less and less. This year, I was sleeping 16 hours a day. Turns out my kidneys are not doing well, and that was causing the exhaustion. So, I cut out a bunch of drugs, and my kidney function increased, while exhaustion got less and less. Trouble is, I need the meds I cut out. A couple I can almost get alone with out. But a few of them, I need to live.
So, I hope your meds will start working better. But, if they don't, please complain loudly that you cannot take the pain and exhaustion. Push for a biologic. Those are the best meds to treat RA. No one should have to walk around suffering month after month, year after year. WG is right - maybe you can try Xeljanz or Rinvoc. Xeljanz didn't work for me at all, but I have heard good things about Rinvoc.
Five years into this, I think the answer is that you do so in the same way you deal with any other tragic occurrence in your life: you cry, you rage, you bargain with the universe, you feel sorry for yourself, and while you may continue to do all of those things on some level indefinitely, there does come a point where you realize this thing is a forever thing, and a life-altering one to some degree, and that this is your reality now.
It is something to be managed, and something that does require allowances and adjustments on your part. You are allowed to grieve for the doors that your illness may close to you. You are allowed to be angry, or to feel sorry for yourself. But there does come a point where you realize that you need to get on with things and create a satisfying, joyful life in spite of the challenges that your diagnosis imposes on you, and that this is actually possible.
You will find that your heart will break a little bit as you accept the reality of your situation, but at the same time, those cracks will let in a level of compassion toward others that you hadn't previously experienced. You may even come to realize that although it does truly suck, you may find that you grow in ways you could not have imagined before your diagnosis.
Basically, you keep going because it's really the only choice you have. You can wake up every morning and wail "Why me?" to the universe, or you can take a deep breath and realize that while living free of pain and inconvenience would be a nice thing, it may not be the hand you've been dealt, and it's time to start figuring out how to play what you've got.
I wish I didn't have this disease. But I also know that I'm a better person now than I was back when I thought I was invincible.
An amazing life is ahead of you; you've just got to carry this extra weight in your backpack. But you'll find that everyone has some kind of burden they're carrying, although they take different forms.
You can do this.
@Kim. Thanks for the warning! Maybe I will report her. Scammers are not needed around here,, especially when there is no cure for RA.