Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Hi Bridget, When we feel awful it’s really easy to let our heads go to the worst case thoughts. Especially when life gets interrupted!
The prednisone should help with the inflammation that’s causing the RA symptoms. It’s an autoimmune reaction to the virus. So hopefully the prednisone settles things down and lets your body’s immune system calm itself.

There is a group dedicated to Covid Long-haulers, people who have had the virus and experiencing long term symptoms. A number of discussions include conversations related to RA and other autoimmune diseases which seemed to increase after having the virus.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
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https://connect.mayoclinic.org/discussion/post-covid-symptoms-1/
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https://connect.mayoclinic.org/discussion/multiple-autoimmune-diseases-post-covid/
Usually prednisone works fairly quickly. Do you notice any change in symptoms?

My story seems to be like many others. I have seen multiple specialists since 2010 with many fluctuating signs-symptoms. I have Palindromic Rheumatism and autoimmune mediated SFN and POTS. This form of RA is rare and I didn’t “fit” the norm. I was told that it was stress, anxiety, depression for a few years. That is a very hard thing to deal with when you know something is wrong but the Dr’s don’t take you seriously.
I’m now taking Methotrexate and so far so good. Not many side effects. I was put on a different med at first (hydroxychloroquine) but it affected my heart. Worst thing for me is the fatigue, exercise intolerance and the severe flares. I had to quit working in 2015 so that was a major life adjustment. Went through depression but have adjusted to my new norm. I have a mixture of the “invisible” diseases and so I don’t look sick. Good luck to anyone going through the diagnosis journey. It can be a long, frustrating trip.

Hello @lbo615 Don’t you just love doctors who tell you its all in your head or that you’re depressed?! That seems to be the most common reaction that women get. I have not heard of Palindromic rheumatism—can you tell me a little more?
And, boy do i know what you mean about fatigue! I just took the dog for a walk and ended up in bed for an hour!
How do you cope with several different autoimmune diseases?

Yes, after my second dose yesterday, I noted decreased pain and swelling. I'll need to get in the swing of things because last night I felt like I'd had 15 Red Bulls and had SO much energy I couldn't get to sleep.

https://rarediseases.info.nih.gov/diseases/7304/palindromic-rheumatism
As far as coping with what I have: it’s been very difficult. I never how I’m going to feel from one day to the next. When I have things/appointments I have to do I usually try to cram in as much as possible that day knowing I’ll be down that evening or next day anyway. Sometimes by the time I get ready to go somewhere I’m worn out before I leave the house. It’s a juggling act for sure. Im aware that there’s many other diseases that are are far worse then what I have and I feel lucky that it’s not a terminal disease like an aggressive cancer. It’s all relative. I try to keep a positive outlook and keep myself as busy as possible with my hobbies- cooking/baking, puzzles & playing games on my phone.

Whoa! Yes’m, you’re under the spell of the prednisone! 😅 It’s an amazing medication for sure! But pace yourself because at some point you’ll need to slow down. For now, it will serve as a moral booster and hopefully calm down your overly sensitive immune system.

How long will you be on the prednisone?

Living with two autoimmune diseases, I was extremely reluctant to get Covid vaccinated, but my son begged me to
"go for it" despite my fear of a new autoimmune reaction. I did one Moderna vaccine and have been mostly bedridden since Jan 2021. The two old autoimmune diseases are a suppressed gamma globulin response, for which I take prescribed 16 grams of Hizentra, subcu, which infusion I administer myself. I also have Hashimoto's thyroiditis, which has been in remission for over 20 years prior to the Covid vaccine. On the day of the first shot, I noticed my right ankle looked weird, swollen. There was a pocket of fluid, looked like about one ounce on the side of the ankle. I immediately went on a water fast. Also I stopped the Hizentra to give the vaccine a chance to develop antibodies. This was not enough to explain the huge number of infections that took over in the next two weeks. My immune system was being "attacked" in an autoimmune response, with all my earlier infectionTs exacerbated simultaneously. I had double kidney infections, left ear infection with so much pressure, it felt as if my ear drum would burst. Also where I had a bypass during open heart surgery to replace an arterial valve, I felt infected. About two weeks later, my urine turned dark and stinky. At this point I felt so sick I couldn't get off the bed. My house had just sold, and I couldn't move off the bed, never mind mover out of my house. I was too sick to go to the doctor, and my doctor's office did not respond to my multiple phone calls for appointments. The new RA never went beyond the inflamed ankle, and these symptoms were not I. But an ANA test a full year later showed that my numbers were in the very high range. I was slowly winning the atte with the infections, but the worst part of what was happening was the loss of energy, like a huge black hold sucked it all up. This was a 180 degree shift from hte morning of the Moderna vaccine one. To make matters more complicated, I had also had a SARS, which was as severe as Covid, with a year of recovery and the loss of hearing in my left ear, and shifting energy from that of a middle aged person to one of my real age of 88. The SARS was the beginning of my decline, but I did recover, and within the month I took the Covid 19 mOderna vaccine. At 89, it was just too much and the antibodies took over my body. Also, I had no medical support. I am fairly knowledgeable about antibiotics, colloidal silver, and herbs, and am supporting my won recovery until I am strong enough to make my medical appointments. About a year after the vaccine, I sold my house again, and my son came from Virginia to help me pack out and move into his house. I am off the antibiotics, but still bed ridden, weak, exhausted, short of breath, and searching for answers. Treating the immune problem is just the opposite of treating the RA problem. But without medical advice, I am just trying to stay quiet and keep my spirit strong, and be ad healthy as possible. I have cut out dairy, gluten, and most sugar. However I eat fruit. I stay as organic as possible, but buying prepared foods means I cannot do exactly what I want.

Hi @tob, People with rheumatoid arthritis often have an elevated erythrocyte sedimentation rate (ESR, also known as sed rate) or C-reactive protein (CRP) level, which may indicate the presence of an inflammatory process in the body. Other common blood tests look for rheumatoid factor and anti-cyclic citrullinated peptide (anti-CCP) antibodies.

Have you discussed the possibility of your having RA with your doctor?

Gillysmom, you've been through a lot. I think you and other members would also appreciate joining this discussion about pacing yourself. I bet you'd have tips to add.

- How do you plan your day and conserve energy? Are you a Spoonie? https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

Has anyone been PRC tested for intracellular bacteria? Has anyone been put on antibiotics for RA? I just recently learned I have RA (seropositive and dna). My rheumatologist appointment is next week so, I’m not on medication yet. My PCP gave me a Vitamin B shot in the right arm. The next day I had an excruciating flare in my right shoulder and could not raise my right arm. The shoulder flare subsided by the next day but even a week later I’m still tender in the muscle near the injection site. Has anyone noticed flares from getting shots?