Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Hi! I am a 67 year old woman who was diagnosed with a severe case of RA 15 years ago, but I believe I suffered from it for many years before being diagnosed. My RA was eventually controlled very well with various Biologics. But I was having a terrible time getting over colds. They would all turn into major illnesses that needed to be treated with various antibiotics and steroids. I never once recovered from a cold until I stopped the biologic for a while. So when Covid came around, I was very worried that I would be one of the people who suffered from a severe case because of my Biologic use. SO I stopped taking my biologics for a month, then 2 months, the 3 months and my RA stayed in control. After a year of no RA drugs I was still doing fine so my Dr. declared me to be in remission. So I have 2 questions for this group: 1) I have had 3 Moderna vaccines. I had fevers and chills and body aches for a couple of days with the 1st 2. The same thing happened with the third accept the body aches were EXTREME. I was in incredible pain and was very worried that the vaccine might have thrown me back into full blwn RA. It didn't. And the pain was only a 48 hour thing. But I'm wondering if anybody else had such a severely reaction to a Covid shot. I want to get the 4th vaccine but I am worried. I have stage IV Colon Cancer and my oncologist wants me to get the shot, but I'm leery. Question 2) I am suspicious that being on Biologics has contributed to/ maybe caused my cancer. I also had a Malignant melanoma while I was on the Biologics. So now I'm wondering what would have happened if I had stopped the Biologics years earlier. Might I have been in remission and saved myself from this cancer? I was so happy to not be suffering with the RA that I never questioned just continuing the Biologics. They were a life saver; but I have to wonder if once my RA was under control, maybe I should have tried going off the biologics much sooner. Any thoughts?

@mnmimi Good morning. I, too, suffered from this painful chest problem. It first happened after I got out of the hospital after being diagnosed with autoimmune. The pain was awful. I had a friend call 911 once because I was sure it was a heart attack. I was sent to a cardiologist who determined that it wasn’t my heart, it was my esophagus. I was having esophageal spasms.

The doctor told me that the treatment was “to suck on peppermint,” so that’s what I do. You might go back to the cardiologist and have a discussion about these spasms. You can then be ruled out for any heart problems. The spasms hurt, but it’s a relief to know that it’s not my heart.
Can you come back and tell me what the cardiologist says?

Thanks so much for responding. I have not been referred to a cardiologist yet. My primary did an EKG and chest X-ray which were normal. She was going to order a stress test, but after starting on the prescription antacid, the episodes stopped. Until now. Almost 6 months later. If they continue, I will contact my primary but I don’t think she will refer to a cardiologist until I have had a stress test, which she says is step one before any other procedures or diagnostics.

My daughter has been ill for some time. She has Crohn’s, PSC and possibly diabetes. Her hepatologist suggested she see a hematologist which she did. Many blood tests were done. The results of the special tests came back quite concerning. One possibility is that she could have RA. I do not even want to know what some of the other possibilities are. She is waiting for the doctor to call her. She has several of the symptoms of RA and previously blood work was done for that which came back negative. My niece has RA and one aunt had some kind of arthritis. I am wondering if there is a genetic component here (she has the CHEK 2 genetic mutation for breast cancer). Could there also be a genetic component for RA? I think I am grasping at straws since she has not had a diagnosis. What are other peoples’ experiences with RA and perhaps others that have additional autoimmune diseases?

@evergreen2022 Boy, I know the feeling! You really like and trust a doctor and then they move! And 2 hours can be quite a drive. I really like the virtual visits that are available now, and the Patient Portal.
Were you able to see your rheumatologist who moved away? Have you made some further plans to see him?

@sandyjr I’m so sorry that your daughter is having such a difficult time. Autoimmune diseases can be real problems. All the women in my family (current generation) have autoimmune diseases and we were all diagnosed around our 70th birthday. In added the link to an article that looks at the familial component to AD. It’s rather a scholarly article but it does mention RA as one that can be in families.
https://pubmed.ncbi.nlm.nih.gov/23497011/
Let’s ask @mnmimi @suzcape @evergreen if they would join the discussion and hopefully answer some of your concerns.
What is your biggest concern right now?

The only other person within my family history to have an autoimmune disease was my paternal aunt (my dad’s sister) who had lupus. As for diagnosis, I begin having extreme stiffness and swelling in the joints of my hands a short time after our second child was born. She was born with significant disabilities, and have always considered that stress may have triggered any pre-predisposition I had toward autoimmune disease. My primary doctor at the time did an RA test and it was negative, but all of my research convinced me that in fact that was what was happening to my body, and that false negatives in the early stages are not uncommon. Finally when I tested positive for RA, he referred me to a rheumatologist. That doctor was trained at the Cleveland clinic and did not take my case lightly. Even though I was only recently diagnosed, he hit it full on with oral gold (Ridaura), which at that time 30 years ago was the state of the art treatment. Also lots or cortisone injections. I have always credited his aggression in the early stages of my disease for the fact that over time it was able to be successfully controlled. Over the years I have taken too many different medications to remember, now on Celebrex, methotrexate, and sulfasalazine.

Hello 👋🏻 I’m just trying to connect here. I was recommended to see a rheumatologist specialized on polyneuropathy. What are your experience over this matter? Is anything I should be looking up to?

Any feedback would be greatly appreciated 🙏🏻 blessings of healing ❤️‍🩹

I have not been formally diagnosed with RA, but have all the symptoms. Early on, I saw a rheumatologist who said I did not have inflammation. She had not seen my ANA test results from a different doc that showed high high titers. She ignored the fluid and swelling of my right ankle and foot and pain in various other joints. At the same time I had three other autoimmune diseases, which could have supported an RA diagnosis. These included primary gamma globulin suppression and Hashimoto's disease. The onset of Hashomotos thyroiditis came with birth of my first child. My second child had severe celiac disease at birth, which he later outgrew. Had developmental problems in early years, some of which he outgrew. My third child was born with an allergy to milk, developed multiple allergies, had chronic migraines, all successfully treated. So far, she has no autoimmune issues because of swift and successful allergy treatment. Unfortunately, the treatment of my long term immune deficiency with gamma globulin replacement exacerbates my RA symptoms and prevents the usual biologic treatments for suppressing RA symptoms. These would reduce immune activity, which would be deadly for me. I need weekly infusions for immune support, so I have experimented with many many supplements in order to control the swelling and pain in various parts of my body. Some of these negatively affected my kidneys and liver. What is now working for me is low low emotional stress, a consistent non inflammation diet, and DSMO rubbed on the affected areas of both my legs and arm continually to block pain, immediately followed by massaging black seed oil into the same areas. The combination reduces swelling and pain with no negative effects so far after five days of treatment. I am also using other supplements to treat my digestive problems and severe chronic constipation, as well as severe, debilitating, chronic fatigue. No doubt in my mind that autoimmune issues have a familial, likely genetic basis, which for me, were exacerbated by pregnancy and emotional stress. I hope my story answers some of your questions. I believe emotional stress is a trigger for the existing tendency to develop autoimmune diseases. An accurate diagnosis would be a plus foe your daughter's treatment. Best wishes for her help and successful treatment.

Thank YOU, Kanaaz Pereira, for moderating this RA group. It is very helpful, I believe, to communicate with other RA patients. When I was diagnosed by my MAYO rheumatologist 14 years ago and wanted to find another person, having RA, to communicate with, I met many people who told me "Oh, yes, I do have that too!" Only in communicating further I found that the/these Person/s had osteoarthritis. The latter, of course, is NOT an autoimmune condition. Thus I am glad that I am able to connect here with other RA patients.
I went during the course of my RA through some horrible times with flare-ups. So bad that I wanted to go to the other sphere. 🙁 Now my rheumatologist prescribed to me this six-day course (pack) of prednisolone to keep at home when these horrible flare-ups occur. It helps within a day!! Do not know what brings these flare-ups on. they do usually last 3 to 4 days and then disappear, as it never has happened. So, when I get one of these flare-ups, which are extremely painful , they affect different joints at times. Sometimes the wrists, the knees, the ankles, the shoulders; it's just unpredictable. Now I feel so lucky that I always have a pack of the prednisolone at home and get relief so soon. 🙂 I am not a 'cry baby' at all, but the pain can be so strong that my tears are just coming and, as I already mentioned, feel that it is not worth to continue this suffering. BUT, I feel lucky that I KNOW that MY flare-ups, which my doctor calls 'micro-flare-ups', mostly last only 3 to 4 days. Due to the unpredictability, though, it's sometimes difficult to make plans, especially trips.
My medications, including all the necessary vitamins, are 25 mg methotrexate/week and 162 ml of Actemra. The latter I inject myself once with every week. When reading other patients comments, I admit to feeling very lucky that I do not have any side symptoms from methotrexate nor actemra. So far this has worked well for me.
I wish everyone the best in strength and hope in dealing with one's RA. Greetings, Christa