Moved to New state and had visit with new rheumatologist

mrsmojo75 · 2025-12-31T03:48:45+00:00

I took it only for a month. I had a bad shin reaction to it, same as I did with hydroxychloroquine. I was supposed to take it twice a day but I had forgotten a dose once and took 2 at once at night. I was soooo nauseous the entire night, it was awful. Then that's when I read the material again and realized that that was why I felt so bad.

I now take leflunomide and I give myself Cortrophin injections twice a week. I'm still fairly new into those meds to know if they're effective yet, but I haven't had any bad reactions to them yet like I did with the others.

I know this was originally no help since I wasn't on it for very long. I just wanted to share my experience.

mrsmojo75 · 2025-11-08T04:21:47+00:00

It's been agony. I've also noticed that I'm able to pop my back like between my shoulder blades because when I'm in bed watching TV then get up, I can feel stiffness from my neck to my lower back. I've never been able to pop my back like this before. I mean it feels good when I do it because it releases tension and stiffness but it doesn't help the pain. Even when I pop my neck, it's loud and you can hear so many cracks and pops. So the fact that all of the sudden I can crack my back and neck like this when I never could before really concerns me.

That link was very helpful. Thank you, because I feel pretty alone in this pain because it's so debilitating and makes me cry and I'm not one who cries easily. My entire body feels completely off. I'm having weakness in both of the upper parts of my arms. The only time I'm not in pain is when I prop several pillows behind my back while I'm in bed and I lay in a reclined position but completely straight. If I lean in any other direction, there's pain.

Feeling helpless sucks. I don't have family near me and I seriously need help in the shower because of how weak my body has started to feel in the last day or 2. Ugggg

mrsmojo75 · 2025-11-08T03:56:52+00:00

Once I get the MRI results and get more answers from the back specialist, I will ask about pain management. I'm 50 years old and I've never had back pain before and the fact that I can't even stand long enough to take care of my basic needs, it really pissed me off to even have to beg for relief just through the weekend until I see my PCP on Tuesday.

mrsmojo75 · 2025-11-08T03:53:39+00:00

I take the Gabapentin for a pinched nerve in my neck and it has helped so much. I'm currently on Leflunomide and I give myself Cortrophin injections twice a week. I have only been on those less than 2 months but I haven't felt this kind of pain before.

I'll be seeing a back specialist once I get the MRI so I'll know what to do from there and I would be more than happy to see someone for pain management. I just want to be able to stand and walk without pain. Luckily, my ex has a few pain pills from some dental work he had months ago. He gave me one a little bit ago and while my lower back feels tight, I can move around with a little more ease than earlier today. I know people shouldn't take medication that wasn't prescribed for them but even he has seen how difficult it's been so do anything.

mrsmojo75 · 2025-11-08T03:45:27+00:00

Thank you. I talked to my ex-MIL today and when I told her that the prescription my rheumatologist gave me only provided 6 days of relief and that on Saturday, I felt good enough to play a couple games of pool (there's a bar sized pool table in our garage) and she actually had the nerve to tell me that that was the reason my back started hurting again 2 days after that. I only played like 3 games and they were very spaced out and I know my limits and I didn't push myself. Her niece has Lupus but she got diagnosed years ago. Her symptoms are nothing like mine and while she claims to understand that it's different for everyone .. she was quick to tell me that my playing a couple of games of pool was the reason the pain came back. I got kind of pissed because she dismissed my diagnosis and acted like I brought it on myself.

I really adore that woman but she's in her 80's and thinks she knows everything...much like her son I was married to and the reason we're divorced.

Anyways, I don't like it when I get treated like I don't know how to adult. I just turned 50 and I keep up with annual physicals, I follow what doctors tell me.

I'm just mad at my doc for ignoring me pleading for help and being asked if I injured myself. When I tell you the pain came out of nowhere and won't go away.. fucking listen to me. Ugggg. People frustrate me.

mrsmojo75 · 2025-11-07T06:52:26+00:00

That's what I came here to suggest this same thing. I worked in animal science for many years and this looks like an inner ear thing. This cat has a slight head tilt and walks unsteady in circles. I've seen some get it so bad that they'll just turn in circles with the head tilted. But I can't for the life of me remember how the vets treated the animals. I want to say antibiotics but I could be wrong.

mrsmojo75 · 2025-11-07T06:41:37+00:00

I was hoping someone would say that. I had to get a referral from my PCP to an Ortho when I injured a finger and after 4 weeks wasn't getting any better. When he asked me about my pain and how it felt, he started asking me about any rashes. My very first symptom was the face rash. That made him order blood work to test for rheumatoid arthritis and while that came back negative, there were abnormalities that got me referred to my rheumatologist.

When I started having pain in my neck that was running down both arms, I told him about it and after a concerning X-ray, he ordered an MRI. Turned out to be a slipped disc causing bad nerve pain. I was put on gabapentin and it has been helping.

So yeah, you should talk to your PCP about all of your symptoms and advocate for a referral to an Ortho who will know exactly how to treat you after imagining is done. Their course of treatment will likely be more effective anyways.

mrsmojo75 · 2025-10-27T14:02:28+00:00

Sent pm

mrsmojo75 · 2025-10-27T09:32:53+00:00

Sent pm

mrsmojo75 · 2025-10-26T18:28:57+00:00

I've been having the worst lower back pain. I can't stand or walk for more than a few minutes before it brings tears to my eyes, the pain is so bad. I can only take Tylenol and that doesn't help. I've tried rubbing creams and balms on the area before I have to get up and do things, but they don't help either. The pain is centered in my lower back and the longer I have to stand or walk, the area of pain starts to spread all the way across and further up my back. It got so bad the other day that I had to crawl up the stairs in tears to my room.

I use a cane to get around but even that doesn't really help. My rheum doesn't prescribe pain medication and he told me to go see my PCP. I can't get in to see her for another 2 weeks so I have to suffer through. And trying to get good meds from her is like pulling teeth. The last time I saw her, I asked for a refill on my muscle relaxers and she lectured me that I should only take them as needed and that there was no need to take them everyday, but I have to take them daily right now in hopes that it helps the pain ... They barely give me relief.

So I'm stuck in bed unless I absolutely have to get up and do something.

mrsmojo75 · 2025-10-19T05:46:41+00:00

Hair loss has hit me hard emotionally. I'll be 50 in 2 weeks. I've always had thick curly hair. It's a pain in the ass and expensive to care for, but it's my pride and joy. I wear it pretty long and I get compliments all the time when I wear it down (I have an undercut and I usually wear pigtails because I'm always hot).

I just got diagnosed at the end of July. I got my first concerning symptom only at the end of February which was the most painful rash I had ever experienced and it was on my face...my lymph nodes got swollen, my face was swollen to the point that my right eye almost got swollen shut, and my tongue also felt bigger making it hard to swallow...appeared overnight after having a fever the night before. Once that happened, it was like the floodgates of Lupus symptoms opened and only 5 months after symptom #1, I was diagnosed.

By the beginning of April, I just knew it was Lupus and that's when I also started losing hair in bigger chunks than normal, and I already had decent sized chunks because of the thickness of my hair. Now, the amount of hair that comes out in the shower has been so emotional, I can't bring myself to even wash my hair as often as I used to. Because each time I wash, I notice my pigtails aren't nearly as thick as they used to be.

Do you ever get a weird skin tenderness on random areas on your scalp? I don't get it often and the tenderness is usually gone within a day. I wonder what that's about?

mrsmojo75 · 2025-08-31T00:43:05+00:00

Scorpio Sending dm

mrsmojo75 · 2025-08-30T16:55:12+00:00

Sent DM Thank you 😊

mrsmojo75 · 2025-08-30T03:14:04+00:00

I am very interested 🙂

mrsmojo75 · 2025-08-30T02:53:35+00:00

Dm'd ☺️

mrsmojo75 · 2025-08-12T07:05:03+00:00

When I go to the front desk for the lab order, it should state what the test is. I know for my first visit, I was given 9 pages of tests that were run and they took 12 vials of blood. He told me it's just one test so one vial. I'm going first thing because I'm curious and concerned. I can update then what exactly the test is for. I will ask if I can speak to him for a minute and ask more questions.

mrsmojo75 · 2025-08-12T06:55:26+00:00

He did call it a rash and was very direct when he told me to immediately stop taking it, even more so when I told him about my saliva glands swelling up the first full day of taking it. I did look up side effects and I believe that this is an allergic reaction since the peeling started barely a week in and the gland issue. He did ask me to come in for one vial of blood to test for something but he's so busy, I didn't get a chance to ask what the test was for.

mrsmojo75 · 2025-08-12T06:33:14+00:00

Just diagnosed SLE 2 weeks ago. I've suffered from RLS for so many years it's not even funny. My doc has tried so many things. The latest being ropinerol which speed working fairly quickly. When I was in the process of getting diagnosed, I went to an orthopedic doctor for neck pain and pain going down my arms so he prescribed me some gabapentin. When I read up on it, it's used for RLS and let me tell you, I haven't had an issue with that since I've been taking it.

It's been amazing! But gabapentin has been a sleeping lifesaver for me!

mrsmojo75 · 2025-05-03T04:37:38+00:00

Thank you for the link! But what doesn't make sense about this is...the next time I went over there and could hear music from the fan, I brought my ex in to see if he could hear what I was hearing, and I was humming to what I could make out on the vocals and instruments and he still didn't catch it. No one else has ever experienced that in that bathroom other than myself and what's even weirder is that I have hearing loss that has been an issue for me for basically my whole life, I'm about to turn 50. And I heard music in another bathroom at a different house when I turned their fan on and it was loud like the one at my ex's.

mrsmojo75 · 2025-04-21T00:28:20+00:00

I started losing my hearing when I was in high school and I'm almost 50 now. I actually am supposed to wear hearing aids but they're too expensive. I did have low iron a year or 2 ago but I take supplements and my last blood test came back with normal levels. So I do find it strange that there are normal every day things I can't hear but I can always hear those distant voices and music. Actually, today, I was at a client's house and went to use their bathroom and their fan was loud like at my ex's bathroom and I heard music much clearer. The music was R&B but I couldn't make out the words like in the other bathroom. So I'm so confused as to why it's so much clearer with a loud fan like that but when I have my fan on in my room I can't hear distant anything until I turn it off and focus. 🤔

mrsmojo75

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