a very rare inflammatory disease called Multicentric Reticulohistiocyt

Hello @midniteangelcloudjum, I can understand not wanting to take a new medication. It can be a little scary sometimes. From what I have read here on Connect, methotrexate has helped some members taper off of prednisone which can be difficult when you have multiple autoimmune conditions. Here is a search of Connect listing the discussions and comments from members if you would like to scan through them - https://connect.mayoclinic.org/search/.

Do you have multicentric reticulohistiocytosis (MPH) along with PMR?

My father developed this same form of RA when he was in his late 60's. He was initially put on methotrexate, and stayed on it until his death at 83. He was a brittle diabetic, with diabetes onset at age 19-20.
As I remember, he did great on the methotrexate without any side effects. However, the multicentric histioreticulo RA took a toll on his hand and finger funtion. I think the disease had progressed significantly before a definitive diagnosis was made. I urge you to get as many expert opinions you need so you can feel confident of your final decision.
I am tapering off pred myself. Down to 5mg from 40mg. Prednisone is not a drug you want to stay on any longer than you absolutely have to.
Godspeed to you as you make your decision.

@kayept Oh this has been going on since March. I first went to a Derm. She took 5 biopsies and blood. At first the results were inconclusive. She gave me 50mgs of Prednisone. Then the shocking results of a rare disease came in. She put me on 40mgs. She set me up with a Rheum and an Oncologist. I have had xrays of my hands, lot's of blood, a Dexa and a Pet scan. Thank God there is no cancers or Autoimmune. So on Mon i have to go to the Rheum and he is going to try and give me the cancer drug. I have Vertigo so taking anything that will make me dizzy is not going to work. Thanx so much for your response.

As far as i know it is just Multicentric Reticulohistiocyt.

Since this is a chronic problem, you need to understand that a lifetime of steroids is not in your best interest. You need to think about reducing and/or eliminating your steroid intake as much as possible. I am on this roller coaster myself due to an adverse reaction to a biologic I went on with the goal of getting me off my steroids.

I asked my AI tool, MS Copilot, about the standard protocol for your Dx and this is what it told me -
"There is no single standardized protocol for multicentric reticulohistiocytosis (MRH), but modern evidence supports a stepwise, immunosuppressive regimen centered on methotrexate + systemic corticosteroids, with escalation to TNF‑α inhibitors, IL‑6 blockade, or JAK inhibitors for refractory disease. "

It appears to me that you doctor is moving from just steroids to steroids and methotrexate before moving to newer drugs. Please read up on the known side effect of any drug they want you on, including prednisone, so you understand what a reality for you could be. Many of the newer drugs have significant side effects that you will need to watch for if you go in that direction at some point. In all cases you need to arm yourself with information of the potential side effects.

I am sorry you are on this journey. I wish success as you partner with your medical team to find a successful and acceptable treatment plan.

@jabrown0407 I have been suffering since March. I have done so so much research. It is damned if i do and damned if i don't. I don't understand why a cancer drug would be used. I also have an ICD in my chest which is said that the use of methotrexate at my age and with Prednisone is NOT recommended. I am so overwhelmed and confused and miserable.

@midniteangelcloudjum You can reasonable assume that any drug your Rheumy wants you on is an anti-inflammatory. I asked my AI tool and this is what I got -
"Yes — methotrexate is an anti‑inflammatory, even though it isn’t classified the same way as NSAIDs or steroids. It reduces inflammation by suppressing immune pathways that drive diseases like PMR, GCA, RA, and psoriasis."

BTW many cancer drugs have anti-inflammatory properties. There are dozens of types of inflammation - it is a jungle out there.

Hope that helps. All of the newer PMR/GCA drugs are anti-inflammatories as well. Once you get to this point, you possibly need to ask some of your other doctors about their perspective if you believe it will interfere or when something seems contraindicated. Unfortunately answers for these type problems are more shades of gray and not easily black and white.

My GI doctor was more liberal than my Rheumy when it came to certain GI side effects. My Endo is more willing in most cases than my Nephrologist. My Cardiologist doesn't care as long as there are no known cardiac side effects. My Pulmonologist just watches, waiting for his chance to jump in. Dancing with doctors was not my idea of retirement, but who actually lives their ideal retirement!

These problems have become our companions, uninvited and we are hard pressed to find the exit door for them.

@jabrown0407LOL Dancing with doctors. Yes been doing that since March 23, 2025. I had always been a test junkie. Went once a yr for a complete check up since i was 40. Was always in perfect health and proud of it. Always active and good diet. Then the absolute worst happened with NO WARNING. My husband and i were watching, can you believe, The Chosen, he was on on couch and i was on the other when out of nowhere i got a really bad dizzy spell and fell back on the couch and my husband said i had no pulse and he put me on the floor and did CPR and was crying and screaming and shook me and did CPR and finally got me back. Then he called 911. They came and when i was at the hosp i coded again and they paddled me. I don't remember either incident. They had to transfer me to the Cardio hosp in the next town. They did every test under the sun and said i had a VTach and needed an ICD but there was no other issues. It was really a huge shock for me. Anyway it has been one thing after another since then. Like sinus and ear problems and then i had Cataract surgery and right after the final eye drops i got a bad rash on my scalp and fingers and then all over my face, everywhere. I went to the Derm. Rest is history and very bizarre. I look like a monster. Nothing like i used to look. Thanx so much for your input.

To relegate a drug as a "cancer drug" can ne hazardous to our health! Many drugs, like methotrexate, are being found to be effective treating maladies they were not first developed for, thanks to scientific research. My father was prescribed methotrxate in 1997 by his rheumy for Muticentrichistioreticulo arthritis, she is now my rheumy! This drug is proven to be effective to reduce inflammatory processes.
I urge you to be open.

@kayept Methotrexate is considered a cancer drug; it is a type of chemotherapy used to treat various cancers, including leukemia, breast cancer, and lymphoma. It works by slowing the growth of cancer cells. It is not recommended for a 79 yr old with an ICD.