Crohn's plus Polymyalgia Rheumatica

@suetex Yes, I have multiple autoimmune diseases. Clippers ( a fairly new one that attacks the brain), restless leg syndrome, and just recently EPI (a deficiency of pancreatic enzymes). Having three and managing all the medications, really keeps me on my toes! Thank heaven for good doctors!
You mention that you have 2 AD. Do you feel that they are both well managed?

Crohn's (thanks to LDN) is well controlled, I would say. But that was my call and not my doc. I think American medicine can do better. My PMR is a question because not much is understood about it yet and there is still a lot of research areas. Have you tried LDN yet? I can't help but think it might help regulate your immune system.

When you’re talking about non moving pain, what exactly is that? Is it related to a certain AD you have?

I do not know what it is related to. I just know that Polymialgia Rheumatica cause a "moving my muscle " pain but I still had a pain when I was just lying there trying to sleep. This was bothersome. LDN stopped it in the same time that prednisone would have, but with much fewer side effects. However, the moving pain was still there. It took the pred to address that.

I have had Crohn’s since 2010, and have been in complete remission on Inflectra (infliximab). I was diagnosed with PMR two weeks ago, and have rapidly gone from a starting dose of 15 mg prednisone up to 40 mg. Another condition is asthma, usually mild and well-controlled on inhaled steroid, but not at the moment. Symptoms are just barely controlled. I am extremely leery about long-term prednisone use, and want to explore alternative options that can treat both. I will talk to my doctors about LDN and sulfasazine, but needless to say I’d be reluctant to go off Inflectra. It seems my gastro and rheumatologist will need to start talking to each other soon! Anyone else out there with PMR and Crohn’s?

@prestol It can be so difficult to have one autoimmune disease, much less two. I have 3 and keeping track of everything is a full-time job for free! Let’s ask @suetex if she would return to the discussion and answer any questions.
I agree about being on long-term prednisone. I’ve been on it for maybe 6 years, but as soon as I tapered down to 3mg, some lesion on my brain returned. So I’ll stick with it for now
What most concerns you about having both Crohn’s and PMR?

I will be glad to add to the discussion in any way I can. I have just had a colonoscopy (routein) and it was normal so I have some lab work to fall back on. The things I know have helped me are: Keep you Vit D up at least in the 40s. It should be tested if you don't know your level. It is very helpful for the immune system and especially for asthma. Mine is 47 when checked recently. It responds well to supplimentation. As far as the Crohn's goes, I have been symptome free for some time (as long as I don't overdo roughage) and had stopped my sulfasazine in May. I have only been on 2 mg of LDN. As far as the PMR goes, my current rheummy acts like it doesn't exist, even though I said I had been treated for it and was tapering off Pred when we started. I have a lot going on and can't handled steroids (glaucoma) and don't want to do Actemra. I do take MSM as it does down regulates IL6. My rheummy says "If I have pain in my legs, it's coming from my back" A neurologist and a pain specialist say otherwise. I am still gathering data. I may be stuck with some of that. Mostly, I want to get this Sjogren's neuropathy on the run so I can ride my horse again.

Thank you both for your responses! I have had osteoporosis for a long time, and that is my main objection to long-term prednisone use. I do take Fosamax and watch my calcium and vit D intake. My pcp is on top of this issue. It’s good to know Crohn’s can be managed on less powerful drugs than biologics, and I may be a candidate for a sulfa or ASA based drug (although they didn’t work for me in the years after diagnosis). If I made this transition, I could use Actemra for the PMR, but not while on inflixamab. My rheumatologist has mentioned Methotrexate as a steroid-sparing treatment. My asthma is really my biggest issue at this moment, even though I am on 40 mg of prednisone, which is the usual dose for treating a flare. I get repeat labs this week, and will ask for a D level. Thanks for that suggestion. This is all very complicated and I am trying to wrap my head around all treatment options.

Prednisone is the worst drug on earth explore other options. Rheumatologists are quick to order.

Of the two conditions, Crohn's has the most choices of treatment, in my estamation. One of my rheummies did not think that methotrexate would work for PMR. My guess is that people clear it from their systems so differently that it can't be counted on. Don't know. I do know that that there are several ASA drugs and they all release at different pHs in the gut. You need the one that works for you. Sulfasalazine is split into two drugs by the colonic bacteria, one of which is an ASA. And you need to tolerate sulfa well. I was on it for over 40 years so I must have made peace with it. You are right, it is very complicated. And you already know more than a lot of GI docs.