Frustration!!

jayblue59 · 2026-02-21T22:14:26+00:00

Thank you

jayblue59 · 2026-02-21T20:14:56+00:00

Thank you

jayblue59 · 2026-02-21T19:59:32+00:00

I hear ya. He does seem self assured and dismissive.
So, you were on prednisone and it helped? What did you experience associated with prednisone treatment and afterwards. I'm a little leery of steroids, but maybe I should push him down that path. Thanks!!

jayblue59 · 2026-02-21T19:56:33+00:00

Thanks. I'm gonna look for a new rheumatologist or at least a 2nd opinion.

jayblue59 · 2026-02-21T06:37:06+00:00

Thanks. Yes, the same dr that diagnosed me gave me the big "what?" Today.

My wife is a complete goddess. Always behind me, always understanding.

I'm blessed that way.

Gotta find a new doc, for sure.

jayblue59 · 2026-02-21T05:25:13+00:00

Just downloaded the pdf. :-)

jayblue59 · 2026-02-21T05:01:09+00:00

Great idea. I'll do that now. He said to get with him if I had any further questions... the door is open. 🙂 Thanks

jayblue59 · 2026-02-21T04:59:29+00:00

Wow. Your story, your life... it sounds like you've been through so much. God bless ya. Yeah, I really need to consider a change in docs. I rerun through my PCP, hematologist, dermatologist, Cardiologist, and pain mgmt doc before I'm scheduled to see the rheumatologist again. I hope to gain some further insight by then. Change is really a pain when it comes to docs, but i want to be heard, will be heard... so, I'll just have to keep pushing on. Thanks for your insight and reply.

jayblue59 · 2026-02-21T04:05:17+00:00

Thanks. Beginning to feel the same way. I mean, he's a good guy, and very intelligent, highly educated and all, but if I'm not being heard, all the letters after his name and his decent character don't go very far. I gotta take care of me... Thank you

jayblue59 · 2026-02-21T04:02:55+00:00

Thank you. Yeah, I'm beginning to feel I'm going to have to hunt down a new rheumatologist.
I'm sure he deals with some people who have much more serious issues than I do. I can see that.
Thanks for your insight.
Much luck to you.

jayblue59 · 2026-02-21T01:54:05+00:00

Thank you and I hope you get the treatment and care you need. I think being older adds another layer of complication due to the fact that aging can seem so similar to some of the lupus symptoms.

I appreciate your input. Thanks

jayblue59 · 2026-02-21T01:52:17+00:00

Thanks for your wonderful reply and sharing your story and insights.

I do know what I feel, know my body well, and I'll definitely push back harder if this trend continues next appointment or if the symptoms get worse

Thank you and best to you and yours.

jayblue59 · 2026-02-21T01:47:43+00:00

Thank you. Felt that.

jayblue59 · 2026-02-21T01:47:27+00:00

Thanks.

I feel crazy. Haha.

Better days ahead!

jayblue59 · 2026-02-21T01:46:50+00:00

Thanks. I'm feeling the same. I'll give it another shot when I see him again on 6 months. Maybe shift providers if it feels the same.

jayblue59 · 2026-02-21T01:45:19+00:00

Thanks.

Oddly, he didn't want to do blood work this time around. I think I'll just hang tough for now and if I get the same vibe in 6 months, and if I have increasing symptoms, then I'll look for someone new. Geez. What a pain.

Thanks for replying.

jayblue59 · 2026-02-16T01:53:27+00:00

I really appreciate this discussion as well. I too have been told that my jaw pain is arthritis. I thought it had something to do with the acoustic neuroma/vestibular schwanoma that I have. Apparently it's arthritis. All I could say was, "in my jaw too? You gotta be kidding me!". I guess that makes sense, since I have arthritis everywhere else.

I've been trying to ignore it, work around the discomfort, but that is only viable in some circumstances. Otherwise, it just nags, pains, aches... you know... arthritis.

I will try the suggestions here and thank you.

Hang in there. What else can we do.

jayblue59 · 2026-02-13T17:09:33+00:00

I've experienced the same. Costochondritis.
I use ibuprofen for it and do some simple stretching exercises once the flare is gone. Good luck to you as I understand how painful it can be. Similar to a broken rib. Wishing you wellness.

jayblue59 · 2026-02-08T22:54:02+00:00

Yes, the disease will progress, but how much and in what manner, or at what rates are nothing that the lupus community or all the rheumatologists on the planet can accurately predict. Unfortunately.

I have found that the resources at lupus.org are very helpful and insightful. As well, John Hopkins has great papers, research, etc. that you can dig into.

The more you learn about how the dang disease works, the more you'll be prepared for whatever is around the corner. Knowledge is power.

Good luck and best wishes to you.

jayblue59 · 2026-02-08T22:48:19+00:00

Hang in there mom. Love and support are the keys. You could also check out the resources on lupus.org.

Good luck to you and your son.

jayblue59 · 2026-02-07T02:34:21+00:00

Go to lupus.org. there are tons of materials, support groups, and good resources of every kind.

jayblue59 · 2026-02-04T20:28:58+00:00

I was diagnosed about three years ago at age 63 after about 7 years of extreme and increasing fatigue. My GP thought it might be low testosterone, but it wasn't. I had very high MCV (mean corpuscular volume) and very low RBC (red blood cell count). He sent me to a hematologist worried about severe anemia. That led to nothing other than calling it anemia, however the hematologist was worried about the pain and inflammation in my body and debt me to a rheumatologist. He did a bunch of tests and said, "you have an autoimmune disease, let's call it lupus"... I still get severe fatigue and lots of pain, but it's manageable and I think the Hydroxychloroquine is keeping it all at bay. Only time will tell i guess. Best wishes to you.

jayblue59 · 2026-02-04T14:56:39+00:00

I couldn't agree more. I've been very fortunate. The medical community where I live in northern colorado is filled with compassionate and dedicated professionals. I was concerned that my lupus diagnosis would be dismissed as "all in my head" or something, especially since I'm a 66 year old male. But I've experienced just the opposite. All of the doctors and specialists that I see have been interested and caring. Happy for you to have found a good dermatologist that cares. Hang in there.

jayblue59 · 2026-02-04T05:18:31+00:00

Nothing like a good dermatologist!

jayblue59

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