Rheumatoid arthritis: "We can all have quality of life even though there is no cure for this disease".
Published Nov 23, 2022 • By Andrea Barcia
After several months of severe joint pain that prevented her from leading a normal life, misdiagnoses and visits to numerous specialists, Viroba, a member of Carenity's Spanish community, was diagnosed with degenerative rheumatoid arthritis. She talks to Carenity about her diagnosis journey, her treatments and how she has decided to "cheat the disease" to improve her quality of life.
Read her story now!
Hi Viroba, thank you very much for agreeing to share your experience with Carenity.
First of all, could you tell us more about yourself?
Hello, I am 55 years old recently and I consider myself to be a person who puts total energy into my life. Since I was very young I have been a sportsman, I have played every sport there is, I have participated in tennis championships and I have won them. But unfortunately my father did not support me, he was interested in me studying and building a career, because according to him, if sportsmen ended up sick, how could they support themselves? Well, with hard pain I retired, I studied and finished my career (well, I have not only one, but three).
I am the eldest of 5 siblings, two girls and three boys, all adults, two of them with children. In the family mentality, I was made to grow up with the idea that because I was the oldest, I was responsible for my siblings, and if something happened to them or they did something, I was the one who paid the price. Well, in those times I was beaten, whipped, etc. Maybe that made me root my character and now I am more risky and feisty.
I like to travel, read, play sports... I like the sea, in fact, if I had a house in front of it, it would be pure life. I like to walk a lot, with a little speed, but unfortunately, with the disease detected in 2018, degenerative rheumatoid arthritis, my movements have been degrading.
Currently, I work and fight against this disease that attacks my joints. Day by day, I struggle to try to lead my life normally and I look for alternatives to cheat it in a way that at least, I can gain a better quality of life.
You have rheumatoid arthritis, could you tell us what symptoms led you to seek help? How long have you been suffering from it?
That's right, I have degenerative rheumatoid arthritis. Prior to 2018 I had joint pain that the doctors themselves confirmed was tendonitis. It started with my wrists, in fact I had surgery on one of them, which was worse, then it moved to my shoulders, it was as if they had been broken. Again the traumatologist said: "tendinitis" and they infiltrated one of my shoulders, it got worse.
Months later, the pain was so intense that I could not sleep, nor bathe, nor eat, nor move, it was a constant pain day, evening and night. Seeing that the orthopedic surgeon could not do anything, he referred me to the rheumatologist where at first he just looked at me and said: "take Ibuprofen", he did nothing.
After six months, I had another consultation with the rheumatologist, but this time it was not the same one, it was a doctor, she observed me more and when I put my hands in front of her table I felt that my fingers were swollen and stiff but I did not give it importance, but she looked at me and said: "your fingers are swollen, does it hurt?" and I said, "of course it hurts! Then, she put me on a stretcher and asked me to take my socks off my foot. He noticed that one foot was completely swollen and asked me again if it didn't hurt, of course it did! What's more, I was having a hard time putting on my shoe because it wouldn't fit! He felt my shoulder and saw inflammation there too, so they sent me for a blood test.
Sadly, the test came back positive for RA.
Bad news is always hard to tolerate, and more so when you are alone, without someone from your family by your side to help you digest it. It was in November 2018 that I started on a Sarulimab biologic treatment, which helped with the inflammation but gave me other contradictions over time.
Currently, in the analytical I have a Rheumatoid Factor* of 136.4, when I was detected I only had a 34.5, but today the doctor when he said my factor said it not with good sign, I didn't even want to ask more because I don't want it to affect me emotionally, that is poison for this disease.
*Rheumatoid factor is an autoantibody of the IgM type produced against the Fc portion of immunoglobulin G. Rheumatoid factor is elevated in the blood in the presence of certain rheumatic diseases and in some chronic infections.
How long did it take to make the diagnosis? How many doctors did you have to see? What tests did you have?
Well, how long? About five years. I started with orthopedic surgeons and went.... Phew, an infinite number of consultations! It was after all this that I was referred to a rheumatologist.
I must have seen about 8 different doctors along the way because come on, every appointment is a different one!
Analytical tests every 3 months, special tests in a year I could have 4.
How did you feel when you were told the diagnosis? Did they give you all the information you needed to understand the disease?
Oh my gosh, it was terrible! To begin with, this is a time when you cancel yourself out as a person, you don't think, and when you come out, questions arise, but you are out. But they don't even explain it to you.
At the next consultation, you already go with a paper with questions. But for me, finding out was devastating. I felt like the world was crushing me and drowning me. The worst thing is to face it alone, without support, without anyone of your own. And not because they don't want to, but because they are on the other side of the world and it is not easy.
You told me that they had to change your treatment again, why? What treatment were you following? What side effects did you experience?
Yes, they changed my treatment. I was taking Dolquine, but it didn't work for me. Then, in 2018, they decided to put me on a biological medication called Sarulimab 250 ml, in August 2021 they lowered my dose to 150 ml.
Since the first injection, which I had in my leg every 15 days, I have been with pain in my back, but so painful that I could not sleep, I could not even sit to work, nor stand, it was like my back was broken in several parts. In addition, I was found to have neutropenia as a consequence of the medication, that is to say, my immune defenses were at a minimum and I was at risk of catching viruses or infections.
What do you think about the way doctors evaluate whether a treatment is being effective or not? Do you think they take side effects into account enough? What do you think they should change?
Not for nothing, nor do I want to offend any of them, but they think they are gods or know everything. I say they don't know anything.
It used to be that the best doctor was from Merck Mark Manual, today they are just on their cell phones and Google it. They no longer examine you like before, they send you medications like guinea pigs or lab mice, all for interests and favors to the pharmacists. I am not stupid, and I know how this situation arises. They should verify and look at what other effects may appear, not the supposed ones prescribed by the pharmaceutical companies that issue them.
The worst thing is that until you feel sick, they don't act. Many doctors passed by and I told them "this hurts, that hurts", and they only told me: "no, that has nothing to do with it, nothing is muscular" and it will be nothing until they do not pass you an ultrasound scan and see what is wrong.
You told me about the natural complementary treatments you have started, what are they? How do they work? How do they benefit you?
Yes, apart from my vitamins, which have been helping my immune protection, I started a treatment with a hyperbaric chamber, which has helped to reduce pain and inflammation. It is a treatment that all hospitals should have, as it is a more effective option. The doctors told me to stop injecting the medication to see the result, and I did. My blood tests were perfect even though I still have the disease, because it cannot be removed, but it does reduce your pain and gives you quality of life.
I did it through my mother's experience, she got COVID and managed to recover her pulmonary saturation to 100x100, so I believe that this option is more effective than medication.
What is hyperbaric treatment? What does this treatment consist of? Is it efficient in the case of rheumatoid arthritis? In what way?
Hyperbaric medicine, known as hyperbaric oxygen therapy, is the medical use of pure oxygen, 100%, in a pressurized chamber called hyperbaric chamber, at pressures of 1.5 to 3.0 ATA.
Yes, it is efficient for all types of diseases, not only rheumatoid arthritis.
There are several sessions, moreover, you have doctors who monitor the follow-up and verify the results. Many people who could not move are now moving their joints.
What is the impact of the disease on your private and professional life? Are there things you can no longer do? If so, which ones?
If I could not move before, today I can move. I know that I must continue with the hyperbaric to avoid inflammations, but what I get are outbreaks with every change of unstable weather, and that will always accompany me, especially with the instability of the weather.
What I do feel are my fingers, but I try not to let that stop me, I try to continue being myself and that yes, I never let myself be defeated.
What are your plans for the future?
To be with my family more, to travel more and to enjoy the sea more, which, even if you think it's not, helps a lot to cheat this disease.
What advice would you give to patients who also suffer from rheumatoid arthritis?
Fight, don't get demoralized or shut down, look for healthy alternatives, there are some, and something important: Stay away from toxic people, there are some and they don't help you to go out and fight.
It is important that your immune system is at 100% as it is the important factor in fooling this disease.
We can all have quality of life even if there is no cure for this disease, but live strong for it, do not retract your will to live!
A final word?
Thank you for the opportunity to let me express myself. I haven't sent it before because I was with my family on the other side of the world and was able to get us all together with my mother so I could bury my father's ashes.
Thank you and I hope it helps many!
Many thanks again to Viroba for agreeing to share her experience with Carenity!
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