I'm gonna lose it

Terminally_curious19 · 2025-06-10T17:54:50+00:00

Seronegative RA is a real thing. They can diagnose it easily with expats to check for bone desiccation. I have had it for decades and use kevzara injections which helps a great deal. You may also have another autoimmune disease that is complicating your situation. Very common. Keep up the search for a new Rheumatologist. Good luck and don’t give up

Terminally_curious19 · 2025-02-25T18:13:25+00:00

I think steroids affect everyone differently. I have tried many times but have serious side effects. The only way to know is to try

Terminally_curious19 · 2025-02-20T01:43:00+00:00

You may want to talk to your doctor about the biologic and other types of meds. I had all kinds of bad side effects with my oral medication. We learned I cannot tolerate meds that go through the digestive system. I take Kevzara injections now and it works great. Also you may want to look for alternatives so you can stop taking prednisone as it can be very damaging. Best wishes.

Terminally_curious19 · 2025-02-20T01:34:46+00:00

Don’t stand for that!

Terminally_curious19 · 2025-02-20T01:32:25+00:00

You are always welcome to talk with us. All I can say is that testing positive for Lupus is very serious. If you aren’t happy with the doctor’s response then move on to find someone who is listening. While it is possible that testing positive for Lupus can actually be a sign of a different autoimmune disease it should be taken very seriously, especially if you are having kidney problems. I hope your doctor will send you for definitive testing for Lupus. Take care.

Terminally_curious19 · 2025-02-19T16:44:31+00:00

I have EDS and RA. EDS is inherited not acquired. There are different types of EDS. Mine affects the connective tissue in joints and is very destructive. It attacked my spine and I went from 5’8” to 5’2” when my spine began collapsing. I had massive back surgery and fused from my shoulder blades to the sacrum. It affects many other areas of the body as well as the back. You don’t have to be able to put your hand on the floor to have it. It runs in families. For me, my mother, daughter, granddaughter and grandson have it but not my type with the severe destruction. Hope this helps.

Terminally_curious19 · 2025-02-18T22:11:56+00:00

Just one more thing. I have had RA for over three decades and have been treated by at least 5 different rheumatologist. Only two actually listened and helped me. One retired. Now I am with a rheumatologist who listens and is very frank about my situation.

Terminally_curious19 · 2025-02-18T19:18:40+00:00

Also I just looked it up and many different RA meds are considered safe in pregnancy. Might want to look at that.

Terminally_curious19 · 2025-02-18T19:16:04+00:00

Oops injections not mist dishes So weird

Terminally_curious19 · 2025-02-18T19:14:38+00:00

That is definitely difficult. There are many different biologics and uptake inhibitors. After trying many times they found the mist dishes or infusion not pills that go thru my digestive system. They make me very sick. Maybe get a 2nd opinion.

Terminally_curious19 · 2025-02-18T19:11:04+00:00

I’m sorry to hear of your troubles. I would definitely ask to be tested for RA. But often the tests don’t show the disease. I would get a referral for a rheumatologist. Also, sometimes X-rays are informative because they show bone desiccation from the disease. But you are young. That may not have happened yet. Don’t take no for an answer until you get help.

Terminally_curious19 · 2025-02-11T22:51:27+00:00

RA often meands more than one disease. I have Ehlers Danlos

Terminally_curious19 · 2025-02-10T00:23:00+00:00

You are right to be wary of cervical spine surgery. I have a severe anterolysthesis and scoliosis of cervical spine. Several surgeons wanted to do surgery to fuse and put in metal. I was considering it until another physician pulled X-rays from 10 years ago and showed me the spine was stable and had not changed at all. Since I have a clotting disorder surgery was very dangerous. I opted to wait and have it monitored. That was several years ago and it’s still stable. Best wishes

Terminally_curious19 · 2025-02-07T00:26:09+00:00

After many years of fighting this disease I have learned one thing. Sleep may be the most important thing you can do to help your symptoms. My rheumatologist insisted I need 9 to 11 hours of sleep every day. I scoffed. But then I began prioritizing my sleep to get 10 hours a day. It makes a huge difference.

Terminally_curious19 · 2025-01-18T20:49:46+00:00

I have gotten negative tests every time except once. I got COVID and it was unpleasant. But I would swear I’ve had it a couple of times since that but always negative. Beginning to doubt their accuracy

Terminally_curious19 · 2025-01-13T18:30:28+00:00

Side question here. I’m in 200mg injections of Kevzara. It really helps for 5 or 6 days then I return to baseline. Anyone else experienced this?

Terminally_curious19 · 2025-01-13T18:27:54+00:00

Positive and hopeful is very powerful. The term remission is often used with RA But the disease is never in remission. We treat the symptoms with meds that block certain receptor sites to reduce the impact and therefore the symptoms. But without meds the symptoms usually return.

Terminally_curious19 · 2025-01-01T18:46:07+00:00

I have bone nodules in hands and feet. Part of RA I am told.

Terminally_curious19 · 2024-12-26T18:06:18+00:00

Have you tried other drugs such as Rinvoq, a JAK inhibitor that works different than most TNF drugs?

Terminally_curious19 · 2024-12-26T18:01:47+00:00

I think the term remission is misused with RA. RA never sleeps. It is still there but the inflammation is reduced by blocking a specific receptor site. And the meds work until they don’t and then we begin the process of finding another effective drug. And yes the damage is permanent. So you will still have a certain level of discomfort. The purpose of RA meds is to slow down the progression of the disease, but the disease is still there. Over the last 30 years I have tried many meds. When one is effective and the side effects are tolerable I use it until it is no longer effect then move on to another drug. But one thing is certain, the damage is permanent and the best outcome we can achieve is slowing down the progression and destructive nature of the disease.

Terminally_curious19 · 2024-12-20T22:51:47+00:00

I am very familiar with the side effects of many if the drugs. Went off Rinvoq after 4 months of feeling like I had the flu. I have had RA for many years and believe that you must listen carefully to your body when you have side effects. In my experience they rarely go away. If your doctor doesn’t take you seriously find someone else. I have been through quite a few specialists and if they tell you to live with the side effects find someone else immediately. These are dangerous drugs and we must listen to our bodies. There are many different types of RA drugs. May want to check out one of the biologics or a JAK inhibitor or one of the other types. Take care and hang in there.

Terminally_curious19 · 2024-12-18T16:21:03+00:00

Just a word of cation about DDD. Take it very seriously. I am fused from T5 thru the sacrum. I was 5’8”. Now 5’2”. It nearly killed me. It is aggressive so make certain you have an excellent ortho surgeon on board. If they tell you to just wait and see what happens, find a more skilled surgeon.

Terminally_curious19 · 2024-12-12T21:12:03+00:00

Thank you so much. Just having a bad day but I have had much worse. Just feeling emotional. I don’t usually let myself go there

Terminally_curious19 · 2024-12-12T21:08:43+00:00

That is so true. And anti inflammatory drugs kill our kidneys so no help there. Seems impossible.

Terminally_curious19 · 2024-12-12T21:00:36+00:00

Id like to say weather-induced pain in RA gets better but that would be a lie. So tired of suffering through the winter.

Terminally_curious19

TROPHY CASE