a very rare inflammatory disease called Multicentric Reticulohistiocyt

@midniteangelcloudjum

Again I asked Copilot about an ICD and this is what it told me -
"No — methotrexate is not contraindicated in patients with an implantable cardioverter‑defibrillator (ICD). None of the authoritative prescribing information lists an ICD as a contraindication. Contraindications are limited to pregnancy (for non‑oncologic use), severe hypersensitivity to methotrexate, and certain severe organ‑system conditions — but not implanted cardiac devices. "

I am not sure where you are finding information to the contrary. I don't want to say you are wrong, simply that what I am finding is not agreeing with what you are saying.

Many drugs are used off label and in reality, Methotrexate is used a lot in rheumatology as an anti-inflammatory. It is not a chemo cancer drug, so the side effects are very different.

Again, here is what my AI tool says about it's use -
"Yes — methotrexate is a core component of multiple standard, guideline‑based protocols for autoimmune and inflammatory diseases. It is one of the most widely used conventional synthetic DMARDs (csDMARDs) and appears as first‑line or foundational therapy in several major rheumatologic treatment algorithms."

"All authoritative historical sources agree that its earliest clinical use was in childhood leukemia in the late 1940s, and only years later was it repurposed for autoimmune and inflammatory diseases."

My understanding is that it was first used in the autoimmune world in the 1950's and it is low dose, not at the high dose level needed to treat cancer patients. It appears to me that it is both a cancer drug (high dose) and an autoimmune drug (low dose).

@jabrown0407 OK makes sense but i have 5 nurses that say that even at the lowest dose it is not good for ppl over age 75 and i am 79. Also they say i do not have any autoimmune diseases.. I am so nervous and can't make up my mind. I have a disease they do not know how to treat. I am an experiment for them. I can't find anyone like me to talk to.

OK, I understand being afraid to take a step - forward, backward or sideways. I am there right now because my recent adverse reaction to a drug my Rheumy put me on - I was doing so well and then wham! it hit and I'm taken off and dealing with side effects even 10 weeks later.

What you might want is simply try to resolve the issue of - do you have an autoimmune problem or not. If you don't have an autoimmune problem then what is it. If you do then try to focus on the correct treatment. Anyone with PMR probably feels like an experiment at times. I know I have. It is a default Dx and therefore it could be just PMR or PMR with something else. I had PMR and something else, it took them 7 years to find the something else.

You might focus on the basic question, do you have an autoimmune problem or not. What clinical lab or imaging tests lead the doctors to believe you have an autoimmune problem? And what medications make you feel better?

@jabrown0407 I have all the results from all the blood and tests they have taken and they say the ANA is negative. No Autoimmune. It's a skin issue and RA. I go to the Rheum this afternoon. He has to wean me off the Prednisone one way or another. Been on it since 2/27.

@midniteangelcloudjum
Here is what my AI tool says -
"No — a negative ANA does not rule out autoimmune disease. It only rules out the ANA‑associated autoimmune diseases.

The real meaning of a negative ANA
A negative ANA simply means your immune system is not producing antinuclear antibodies at detectable levels. That’s all it means.

It does NOT exclude many major autoimmune or inflammatory diseases.

These conditions are often ANA‑negative - PMR; Giant cell arteritis; ANCA‑associated vasculitis (GPA, MPA, EGPA)' Rheumatoid arthritis (about 20–30% ANA‑negative); Psoriatic arthritis; Crohn’s disease / ulcerative colitis; Autoimmune thyroid disease (Hashimoto’s, Graves’); Celiac disease; and Autoinflammatory syndromes (IL‑1/IL‑6 driven, not ANA‑driven)

These diseases use different immune pathways (IL‑6, IL‑1β, TNF‑α, Th17, etc.) and do not rely on ANA‑type autoantibodies.

Food for thought- unfortunately autoimmune problems are not easy to identify and even harder to treat. Your doctor is only able to wean you off any drug if your body cooperates. I have been sick since 2019 and it took a year for any doctor to Dx PMR and been treated since then. Your body is in charge, not you, not your doctor and certainly not your insurance company. Some people on this site have been treated much longer than I have - all autoimmune problems are chronic - remission is the best case.

BTW you might ask your cardiologist about the ICD and possible drug interaction and your age. In the end any decision is yours. I try hard to understand my risks before agreeing or disagreeing with a proposed treatment. It is not easy for any of us.

I looked up Multicentric Reticulohistiocytosis and this is what I learned -

"Multicentric Reticulohistiocytosis (MRH) sits in a unique category: a non‑Langerhans cell histiocytosis with massive macrophage activation and cytokine‑driven inflammation (TNF‑α, IL‑1, IL‑6).

What MRH is - MRH is a systemic histiocytic disorder characterized by:
destructive erosive arthritis
papulonodular skin lesions
macrophage‑rich granulomatous infiltrates
high inflammatory cytokines (TNF‑α, IL‑1β, IL‑6)
no autoantibodies (ANA negative, RF/CCP often negative)

It is part of the non‑Langerhans cell histiocytosis family."

I also found pics of some of the skin lesions on the internet.

I suggest you post on the Mayo Clinic Connect Autoimmune Diseases Group rather than the PMR group since the Autoimmune Diseases is a general group meant for all autoimmune Dx and the PMR group is exclusively for PMR patients. You might find someone else with MRH in that group.

Hope you appt today goes well.

@jabrown0407 I would not rely on ARTIFICIAL intelligence. My Cardiologist agrees the Metho may not be good for me. As does my Oncologist. Like i have said, I have Vertigo and don't need anything that is going to invoke it at my age.

@jabrown0407 Like i have said, i know all there is on my rare disease as it has been quite awhile now. Yes i will go to that site but there is no one with what i have to compare with. I do appreciate all your input and well wishes.

@midniteangelcloudjum I start with AI to give me information that is somewhat neutral. Google is a pay to play search engine, so if you pay Google more than someone else you go to the top of the answer stack. Most all search engines are the same. AI is not pay to play today, maybe tomorrow, just not today.

I do rely on my doctors a lot since they know my medical journey better than I do. They have the education, the training and the experience. I just like to understand what they are telling me so I do AI research. I was an analyst for my 50+ year career.

BTW, the AI tools make it very clear that they are not telling you what you should do, they will possibly provide options if you ask. Mostly I try to just asking factual questions, not their opinion.

I have found AI to be as reliable as any human, i.e. very capable of mistakes.

@midniteangelcloudjum
Another AI ans -
"There are no active, disease‑specific chat rooms for multicentric reticulohistiocytosis (MRH) based on current search results, but there are a few legitimate places where MRH patients gather, ask questions, and find others with the disease.

Because MRH is extremely rare (fewer than a few hundred documented cases worldwide), communities tend to exist inside broader rare‑disease or histiocytosis groups, not as standalone chat rooms.
Where MRH patients actually connect today
1. Histiocytosis Association
Listed by GARD as a patient organization for MRH. Offers patient‑to‑patient connections, virtual meetups, and private groups for histiocytic disorders. While not MRH‑specific, they are the closest organized community.

2. Global Genes Rare Disease Community
Large rare‑disease platform with discussion boards and peer‑matching. MRH patients sometimes join here because it supports ultra‑rare conditions. Listed by GARD as a resource.

3. NORD Rare Disease Community
NORD hosts forums and patient stories for rare diseases.
MRH doesn’t have its own subforum, but patients with ultra‑rare inflammatory diseases do post there. Also listed by GARD.

4. Arthritis Foundation
Has online support groups for inflammatory arthritis. MRH patients sometimes join because the arthritis component can be severe. Also listed by GARD as a relevant organization.

5. Facebook Groups (the only place with actual MRH patients talking)
Search terms that reliably surface active groups: "Multicentric Reticulohistiocytosis”
“Reticulohistiocytosis”
“Histiocytosis support”

These are usually small (10–200 members) but tend to be the only places where MRH patients talk day‑to‑day.

What doesn’t exist
Based on the search results:
No MRH‑specific Reddit community
No MRH‑specific Discord server
No MRH‑specific real‑time chat room
No active standalone MRH forum

This aligns with GARD’s note that MRH is so rare that patients rely on broader histiocytosis or rare‑disease organizations. "

Hope this helps. I actually have a couple of very rare conditions myself, like 1 in 5 million people, the other is like 3 per million in population. So, I do get it that it feels very lonely out there.